Second Day of Vidaza treatment

Todd has had a headache since yesterday, but still has his good sense of humor. When the nurse came to administer the Vidaza she put on rubber gloves and a paper clothing cover gown. Todd's response was, "Wow! You're going all hazmat on me!"

She said yes!  Seriously, they did go through the protocol of dealing with the toxicity of the chemo as it gets flushed out of Todd's body. Basically, the chemo will be filtered out through his bodily functions: urination, bowel movements, and even sweating. This is especially true in the first 48 hours. 

He has to be careful urinating, sitting instead of standing to avoid any splashing. Then he must close the toilet lid and flush twice. The same with passing feces. 

Any vomit or any other fluids must be cleaned up with rubber gloves. Any dirty linens must be washed twice in the hottest water. This includes sheets from any night sweating. 

I told the kids not to use our toilet or lay on our bed during treatment just as a precaution. 

Todd, said great, this stuff is so toxic I have to take all these precautions, yet they are putting in my body!  And, the nurse said don't even think about now all these toxins are in our water!  Todd said, "No wonder I'm sick!  I'll be drinking that water in a few days."  Sad, but likely true. 

DESPERATE FOR A NEW TREATMENT PLAN

We finally received the test results this week that the doctors needed to begin discussing a game plan of treatment for Todd.  I was getting anxious to know the preliminary bone marrow biopsy results, so I called Dr. Hamilton's office at the Cleveland Clinic on Tuesday, September 13, 2016, to ask if she had got them back from the lab yet .  They are usually back the following Friday or Monday after the biopsy on Wednesday. I was told that the labs had been running behind, but they would check with Dr. Hamilton.  She called me around 12:00 that afternoon with the news:  His blasts counts were up to 8%.  Not the news we wanted to hear.  I was glad they weren't higher, but disappointed they had jumped from <1% in July to 8% now!  The air conditioning in our office had been out; it was about 80 degrees in there.  So, when I got this news, I had to sit down.  I felt dizzy and faint.  I was already overheated, needed to eat, and then got this news.  I was shaken.

I asked the doctor if she thought the blast counts would continue to jump up that much again (desperate question), but she of course she wasn't sure what they would do, but she tried to reassure me that she didn't think they would skyrocket past the 20% criteria classification of Acute Myeloid Leukemia (AML), but there are no guarantees with cancer.  She said that these results confirmed what we all had suspected: the cancer was no longer responding to the AG221.  I had asked her at the last appointment if it was possible that the drug could still keep his blast counts down even though there was no hematological response in the blood counts. She said, it was possible, but she didn't think it was likely, nor did she think that it would help him to continue taking it for that hope only.  It wouldn't make that much of a difference.  So, the biopsy results confirmed this: continuing the drug was not keeping the blast counts down anymore either.

At this point in the day, she still had not received the genetic panel results back from the specialty lab. She still wanted to wait until she got these back and spoke with a few colleagues before making a treatment recommendation.  She also said that they were still waiting to hear back from Celgene, the drug company of the medication Revlimid, regarding an estimate of how much we would have to pay for the drug under our current insurance. I brought up the option of Vidaza, which Todd has been on before to reduce the blast cells, and she confirmed that this may still be an option.

Dr. Hamilton asked me if I wanted to tell Todd the biopsy results or if I wanted her to call him.  I was very busy at work, and wanted Todd to have the opportunity to ask any questions or discuss any concerns with her; so she called him and gave him the news.  We had a chance to talk on my lunch break and he said the blast counts being at 8% was about what he expected.  He was surprised it wasn't worse.  I tried to encourage him; we still had options and there is a team of doctors working on getting a new treatment regimen together for him.  We would go or do whatever it takes!

He had been extremely tired since his last transfusion of one unit of blood at the Cleveland Clinic last Wednesday, September 7, 2016.  This week's appointment on September 14, was at the local oncologist's office for a CBC to see if he needed a transfusion.  I knew he was weak, but he refused a wheelchair and walked in on his own.  By the time we got back to the treatment area, he felt like he was going to pass out.  They hurried and got him into a bed and covered him with warm blankets and placed a cool washcloth on his forehead while they prepped his port for the blood draw.  I got him a Boost shake to drink, because he still hasn't had much of an appetite.  While waiting for the CBC results to come back, I called Sam, the trial nurse at Cleveland Clinic to see if they had received word from the genetic mutation panel because the local oncologist had told Todd that they received them the day before.

Cleveland had received the results, but they were so vague that no one really understood them.  Dr. Hamilton had called and asked the pathologist to explain them to her.  Of course, he hadn't called her back yet.  The results looked positive for the IDH2 mutation, which he had prior to treatment with AG221, but they were not sure about the IDH1 mutation.  We started discussing the trial of AG881 in New York, that Dr. Eytan Stein had mentioned.  Originally, I thought Todd needed to have both mutations before he met the criteria for the trial, however, after researching, it only needed to be one or both.  Todd has read a lot about the drug and the drug company AGIOS.  From his understanding AG881 was only a combination of AG221 for IDH2 and AG120 for IDH1.  If he didn't have the IDH1, the AG881 would be worthless, since we knew his cancer had stopped responding to the AG221.  This dashed my hopes of this trial.  I found out later anyway, that he DID NOT HAVE the IDH1 genetic mutation, so this option was seemed out.

Once we got the CBC results back, it was easy to understand why Todd was feeling so weak.  His hemoglobin had gone from 8.3 plus one unit of blood last Wednesday to 6.8 this Wednesday! At first the nurse said his hemoglobin was 6.2 and his platelets were in the teens.  She said the doctor wanted to know if he wanted 1 unit or 2 units of blood.  We both freaked out and said 2!  Of course!  This was the lowest his hemoglobin has been in over a year!  I don't know if it was that low when he was in the hospital last October with the pneumonia!  They usually always give him 2 units if the hemoglobin is below 8.  Todd and I began to question what she had told us.  Maybe she had made a mistake.  Maybe the hemoglobin was at 8.2 not 6.2, then the question of only giving one unit for being under 8.5 would make sense.  So I asked her to double check the results.  We looked at the printed results together.  The hemoglobin was 6.8, platelets at 13,000, whites at 1.2 and ANCs at .6!!!  Every time I see such low numbers, I can't stop the expletive that comes out of mouth in disbelief and anger.  There was no denying it.  These numbers sucked.

When we told Todd the actual numbers, he was in disbelief too.  He began to worry that if his counts were this bad, his blast counts in the marrow had probably increased too.  I wheeled him down to Universal Care and they got him in a room right away.  The nurses there are so awesome!  They really care about the patient and the family.  They always take my phone number so that when I leave to go into work, they can contact me with any changes or concerns.  We've been pretty happy with his care at Soin Medical Center.  They are always worried about how long it takes Todd to get the blood products and the transfusion process, but we have always understood that it takes time and don't mind the wait at all. We always get out of the hospital faster than they predict.  This day, Todd was finished by 6:00 p.m.  I was happy that our daughter Abby was able to come sit with him in his room to help pass the time.  It is hard for me to go into work while he is there, but I know he is in good hands and that I can be there in about 20 minutes if I'm needed.  If anyone would like to come sit with him during the transfusion process, it would be appreciated.  In the future, however, they want him to come in a day early to get his CBC and type and screen and then have the transfusions scheduled for the next day so that they can order the blood products ahead of time and shorten his wait time.  I'm not sure if this is really that helpful because he will have to get up early and go to the hospital two days instead of one, but we are willing to try it.

NEWS FLASH:

This is how fast and stressful everything changes.  While typing this post, I received a call from his transplant doctor, Dr. Hamilton, who finally had her recommendation for treatment to discuss with me.  She had already talked to Todd, but I always have a lot of questions to ask, so she graciously reaches out to me.  She had discussed Todd's case with the other doctors in the Leukemia/Oncology/Transplant area, her colleagues at University Hospitals in Cleveland, and Dr. Eytan Stein at Memorial Sloan Kettering in New York City.

I was shocked to learn that her recommendation was the AG881 Drug Trial at Memorial Sloan Kettering.  I thought this option was OUT!  Apparently, this drug is not what we thought it was, instead, it is a "souped-up, second generation"version of the AG221 he was on.   I was leaning toward the tried and proven treatments or "standard of care" treatments already available (i.e Revlimid and Vidaza) before hearing this.  When I brought this up, she said that although Todd had seen some response to Vidaza in the past, it didn't help much the last time he was on it after his failed transplant. It lowered his blast count some, but it did not help with this blood counts at all.  Therefore, she really didn't consider this a "positive response" to the drug.  With Revlimid, we are limited to it helping the anemia or Red Blood cells only.  Todd's other counts are already dangerously low, and this drug is known to lower platelets, which he cannot afford to have happen since they are already so low he has to get platelet transfusions.

She didn't know much about how AG881 worked or what it contained, but recommended we consult with Dr. Stein.  In her opinion, this is the best option to help increase all three blood counts increase and decrease the blast counts.  We discussed that the treatment options are getting thin.  Her colleagues at University Hospital suggested a second transplant, which Dr. Hamilton feels is still an option we really need to seriously consider.  I told her that I couldn't speak for Todd completely, but that in general we did not consider this a good option; instead, we consider this a last resort after we have exhausted all other options.  I told her I didn't know if we were ready to go the the "hell" that a transplant inflicts.  I told her that personally, I found the option scary.  Not only did it not have a high success rate, but if it did work, then Todd would have to face the possibility of getting Graft v. Host Disease that could be detrimental.  She reiterated that this is the ONLY CURATIVE OPTION.  That every other option is just temporary.  They would obviously use a different donor, but I wasn't impressed with the long-term success rates of bone marrow transplants.  I guess we just need to be careful not to wait too long to take this option; he needs to be healthy enough for a transplant.

This news, that we would have to go to New York, was not upsetting in itself.  However, I called Todd back after my conversation with Dr. Hamilton, and his mind was racing ahead of all the implications and changes in our lives that would be necessary to pursue this trial treatment.  This would mean extensive travel: every week for the first month, then every two weeks thereafter.  We would need resources to go and he would need me to go with him.  My ability to work full-time could be in jeopardy, which means keeping our house would be impossible.  I didn't want to jump too far ahead, and I think we would be smart just to take things a day or week at a time.  We really need to speak with Dr. Stein to see how feasible getting on the study would be.

Putting the house on the market again would be stressful.  I'm not sure I can handle all the work involved.  This time it would be definite; we would keep it on the market until it sold!  I would need lots of help: cleaning out the house, getting rid of stuff we couldn't take with us, boxing up, keeping the house immaculately clean and ready to show, and then finding a new place, preferably one that would be move-in ready.  This is when I broke down into tears.  I know our house is often too much to take care of. I have been mowing the grass and doing almost all the cleaning.  With Lewis back at college and Ellie back in school and sports, and Todd unable to get out of bed, most of the chores are left to me.

Please be in prayer for wisdom for us and the doctors.  That travel arrangements would fall into place.  I've already contacted the Corporate Angel Network about arranging a potential flight and the Hope Lodge in New York City to see if we could stay there instead of a hotel.

Todd's cough is getting worse and he is now limping.  It seems like when his counts get low, certain areas get inflamed, and this time it is his foot again.  He still doesn't have much of an appetite.  The doctor said this was likely from the MDS itself.  Getting him to eat regularly requires great effort.  He has been trying to drink his Boost shakes when he can't bring himself to eat.

Thanks goes out to my parents who are a pillar of strength and help.  My dad (age 69 with congestive heart failure!) has been helping me with yard work.  Todd's mom is still bringing food, but even she is having a hard time walking.  Pastor Chuck Moore at Hillside Chapel has been faithful in staying in touch and visiting Todd.  Our neighbors Dan and Sharon have also been very supportive.

NEEDS:  I hate this part, but we do have needs.  We have a few dead trees in the yard that need to come down.  Neither Todd nor my Dad are able to do this.  If anyone can refer us to someone who could give us a reasonable rate to take these down, it would be greatly appreciated.  I could really use some mulch in the front flower beds, if anyone has extra mulch or has the time to chip and shred our tree branches for mulch, that would be appreciated.  I probably need to have a garage sale, which is a lot of work!  I would have to do it on a Saturday when I am off work, but I might need help preparing for it.

Of course, I always worry about Todd being home all day alone. When I'm not there, he doesn't eat. It would be great if someone could tempt him by bringing food over and sitting with him for a short visit.  He really doesn't feel like going out to eat, as he barely feels like getting out of the house at all.

He will have a CBC drawn at Soin on Monday, September 19, 2016, as they don't want to wait a full week this time to see if he needs a transfusion.

Also, on September 21, we will be celebrating our 25th Wedding Anniversary.  I hate that he is so sick.  The celebration will likely be low key at home. I'm just thankful he won't be in the hospital and that we made it successfully to such a significant milestone!

Thank you all for the love and support.

FOR MORE INFORMATION:

AG881 General Trial Information: https://clinicaltrials.gov/ct2/show/NCT02481154

AG881 Trial at Memorial Sloan Kettering: https://www.mskcc.org/cancer-care/clinical-trials/15-252

Success of AG221 (showing average response time of 15.7 months):
http://annonc.oxfordjournals.org/content/27/4/599

AG221 Trial Comes To An End

T-shirts given to blood donors during the Battle of the Badges, Beavercreek, Ohio. Donors were entered into a drawing for a trip to Alaska-therefore the Moose theme on the T-shirt!

Since the last post, Todd had another blood transfusion and a platelet transfusion on Wednesday August 31, 2016. His platelets were at 28,000, not below the prescribed < 10,000 to get a platelet transfusion, but he got platelets to boost his counts prior to a much needed dentist appointment to fill a few cavities the following day, Thursday, September 1. His hemoglobin was back down to 7.5 just about 9 days after his last transfusion on August 22, 2016, when he was transfused with 2 units of blood.

Our local fire and police department was sponsoring an annual blood donation drive called the "Battle of the Badges" on August 29, 2016, where blood donors show up for the police department or fire department to see which group can donate the most blood. I decided to donate for the first time in my life!  I've wanted to donate or organize a drive ever since Todd was first diagnosed with MDS and also when he was transfusion dependent the Spring of 2015, but I never did. For this event, I scheduled a time to donate after I got off work. I learned so much about the process:

• you need to drink lots of water the day of donation; 
• it takes about an hour to register and go through the screening process;
• there is a list of medications, mostly blood thinners, that should not be taken so many hours prior to donating;
• I was worried that I would be disallowed to donate after checking "yes" to having traveled outside the U.S. in the past 3 years, but once I talked with the nurse during screening, she said they were really only concerned about travel outside in the past year in certain countries, especially extended stays. We had gone to the Dominican Republic in the spring of 2014, prior to Todd's chemo and transplant. (I had to look it up, it seemed like longer ago than that!). 
•  They also had to prick my finger and test my hemoglobin. Mine was at 12.5 the minimum needed to donate. (Low end of normal but I passed!)
• I did not eat before I went and I guess that is not desirable!  Especially for a first time donor. They wanted me to go eat the proffered chili, cookies, and orange juice before donating, but I was worried about getting  home to Todd and Ellie who also needed to eat. So, instead, she insisted I ate something before I left.  She actually gave me permission to "pig out" when I got home! See: First time donors
• since 2007, women who have had children are no longer allowed to donate just platelets unless they have been grandfathered in, meaning they have been already a regular platelet donor prior to this date.   See: http://givingblood.org/about-blood/blood-testing.aspx
• The actual donation only takes about 15 minutes.

Everything went great! The nurses said they had a great turnout and they made sure to tell each donor that their donation could save 3 lives! They can separate your pint of donated blood into platelets, red cells, and plasma.  I was so happy to see all the selfless people who were there to donate, knowing Todd was needing 1-2 units almost every week, that I was ready to cry tears of joy!  The nurses also thanked each person for their donation.  I personally wanted to thank each donor too!!!!  The whole experience was so touching to me knowing Todd is needing almost weekly transfusions, that now I want to organize a blood drive in his honor!  Todd would not receive the exact blood donated, but it would go to our community blood bank, where Soin Medical Center gets their supply.  Will those who are local begin to consider donating?  I pray you will!   Stay tuned.  In the meantime, check out this link: Red Cross Blood Donor Eligibility Criteria

"Although an estimated 38 percent of the U.S. population is eligible to donate blood at any given time, less than 10% of that eligible population actually do each year."

-The American National Red Cross. 2016

  
Cleveland Clinic Trial Appointment Cycle 19, Day 1

Today's appointment at the Cleveland Clinic for his regular trial appointment and treatment was rushed. Since Monday was Labor Day,  many of the patients that had appointments for that day were deferred to today. The day started out unsettling.  First, we were told that the person scheduled to do his bone marrow biopsy called in sick. So, they were afraid they were going to have to reschedule it for another day! I'm glad the sick staff member stayed home, but I was upset that Todd may not be able to get the biopsy today!  I told Sam, his trial nurse, that any other time it would not have been a big deal, but there was so much riding on the results of this biopsy , i.e.  pursuing another treatment options, that I really didn't want it put-off nor for us to have to return in the next few days. She understood and said she would see what she could do. We had to wait about an hour to get labs and another hour to get into a treatment room. Unlike his local office, they can type and screen him for transfusion during his lab appointment, so this saved us some time.  After running behind two hours from all the waiting, we had doctors, nurses, and the pulmonary technician, all trying to come into his treatment room during his transfusion. It was crazy. 

His CBC showed his hemoglobin at 8.3, platelets at 27,000, Whites at .86 and ANCs at .67 (hovering close to neutropenia .5).  There was some real concern about the low white count and ANCs knowing that these low counts make him more susceptible to infections. They decided to give him one unit of blood since he was below 8.5 and probably would not be able to make it until next Wednesday to get a transfusion, when he goes to the local oncologist.  They were also concerned that if he had not received platelets last week that he would have likely would have needed them today. 

Luckily, Sam was able to get his bone marrow biopsy scheduled for around 3:00 in the afternoon. He normally doesn't take the "pre-meds" before the procedure, since he has had so many biopsies and knows what to expect, but today he took them. 

Unfortunately though, the results of the genetic blood tests done last week had not come back for review. So, we will have to wait until next week for both the biopsy results and the genetic panel.

In the meantime, Dr. Hamilton was fully convinced that the trial drug AG221, he has been on for the last 18 months, was no longer providing any response. In addition, the increased nausea and fatigue were only suppressing his appetite and desire to eat. He is still losing weight and there is no reason to continue the drug if it's not helping and prevents him from getting the nutrition he needs.

Another consideration for stopping the drug now is that it would allow a "wash out" required period of time off the drug before beginning a new trial or another treatment.

"For all these reasons, Todd was taken off  of the trial drug AG221 as of today."

For all these reasons, Todd was taken off of the trial drug AG221 as of today.  His nurse Sam will start the paperwork to close out his trial. I will be sad to lose Sam as Todd's nurse, since she only works with trial patients. She has been so good to us! She will be able to help us temporarily, until Todd starts a new treatment, and she has assured me that we will be in experienced hands in the future.

Todd wasn't able to get his Echo cardiogram appointment in today though; and it has to be done at the trial facility, meaning Cleveland Clinic. So, Sam was able to get an extension to have it done when we come back to discuss his test results and the start of a new treatment. 

So, after 18 months of visits for the trial, what will we do now?  How often will he need to go to the Cleveland Clinic? What are the treatment options?  As for visits to Dr Hamilton at CC, they will be scheduled as needed. No more mandatory 2 week blood draws, no more monthly EKGs, no more Echocardiograms and biopsies every two months. We were asked if Todd would be willing to allow these tests to continue for follow-up research purposes for trial study, but we haven't made a decision yet to commit to these since we live so far away and would be bound to do them. We will also lose the reimbursements for our expenses and hereafter will have to pay for any drugs needed that are on the market (like Revlimid) unless they can be obtained through another trial. In my last post, I mentioned the high cost of the drug Revlimid. Sam requested a quote from the drug company Celgene outlining the portion our current insurance would cover and/or what kind of assistance we could receive from them, but she hasn't heard back from them yet. I'm not sure it will matter, as Todd will be forced to apply for Medicare next month by Obamacare. Who knows what will be covered on Medicare and if we will have to purchase some kind of Medicare supplemental insurance to pay for what it won't cover. 

Other treatment options include going back on the monthly chemo drug Vidaza or maybe even a combination of Vidaza and Revlimid. Vidaza targets blast cells and Revlimid works by increasing red blood counts by working against the 5q cytogenetic chromosomal deletion that causes the anemia, and therefore the need for transfusions. 

 I feel like I need to start researching more trial options. Dr. Hamilton is still planning on talking to Dr. Stein and getting his insight after the genetic panel and biopsy results come back.  If Todd has both the IDH-1 and IDH-2 genetic mutations, he would be eligible for the trial drug AG881, which would be another option, albeit, a complicated one as we would have to travel to one of the 5 trial locations in the U.S. none of which are within a driving distance of less than 6 hours.

Todd will need to return to his local oncologist one week from today, September 24, 2016 to check blood counts.  Hopefully, we will have test results back and be able to make a consult appointment with Dr. Hamilton at the Cleveland Clinic too.

We appreciate your prayers and support.  I know Todd would deeply appreciate your phone calls. He lays around a lot because he is so tired and we rarely go out.  He really needs the encouragement.  He said that becoming transfusion dependent again brings back bad memories of when he was so sick after his failed transplant.  It is a vicious cycle of feeling his energy drain away more and more every day, until he can no longer put off another transfusion.  A special dish or treat might tempt him to eat for those who prefer to cook or bake.  A card, email, or text would also help boost his morale.  If you prefer to visit, please contact us first.  We ask that all visitors make sure they are in good health and haven't been exposed to sickness especially since his immune system is so low.  And, because he sometimes sleeps or take naps throughout the day, it might be best to call first before coming over, so you don't catch him sleeping.  I think it would be especially nice to receive visitors while I am gone at work during the day; that is when he is often alone now that the kids are all back in school.  It is also the time of the day he goes without eating.

God Bless!

Appointment at Memorial Sloan Kettering

There is so much to say I don't know where to start and what to include in this post. 

First, I need to give a shout-out to The Corporate Angel Network. I can't say enough good things about our experience so far. I spent time on the phone last week coordinating the appointment, securing a hotel, and waiting to hear about flights. 

We got the call Thursday that they got us a flight into Terboro Airport, NJ leaving out of Columbus, OH. They arranged for a car to pick us up at the airport and drive us to our hotel into New York City. We had to pay for the trip/car but it was so nice to let an experienced driver navigate the narrow lanes, traffic jams, constant honking, and aggressive drivers. 

On Friday,March 20, 2015 we got a call that the Angel network had secured us a flight back on Tuesday morning, March 24, and a free shuttle ride back to the airport. We would only have to pay a cab to get us to the shuttle location before 7 am. The flight would return back to Columbus so we would be able to drive ourselves to the airport and leave our car. 

Meanwhile, in Dayton they wanted to  give him IV antibiotics for seven days so they had to schedule around our trip 

We arrived an hour early to the independent Flight company an hour early. It was so nice not to have to go through security, put our liquids in small bottles, and be exposed to all the people at a public airport. The pilots were so nice and made us feel welcome. The  company members, whose flight we were on with, were so gracious and hospitable to us. The flight from Columbus only took 1 hour!  We landed and our car arrived shortly and took us to our hotel, The Bently, in the upper east side of Manhattan, which is only four short blocks from the hospital. We didn't have time to go to get food at a restaurant, so we grabbed a bite at the hospital's cafeteria. The appointment was at 2:00 pm. 

The space inside the hospital was very tight, which makes sense for a prime real estate area in New York. The staff were all extremely friendly and accommodating. I also liked their policy of asking everyone to wear masks, including family members in the Cancer office waiting rooms. They also provide rubber gloves for patients who don't want to touch anything. 

We didn't have to wait long to see Dr. Stein. He wasn't anything like I thought he would be. He was short, friendly, personable, honest, and straight-forward. He asked Todd to recount his medical history from the time of diagnosis in October 2011 to present. Then he gave us the opportunity to ask questions, which I had a list of!  

I started with asking him about his opinion to do a second transplant or not. He said it doesn't matter whether to do the second transplant now or in the future. He felt that Todd would still have the same results. He asked us if we were aware of second transplant outcomes. I said yes, they weren't good. He said that's right. According to the published reports, second transplants have a success rate of 5% to 10% and he felt those numbers were generous. 

I asked if Todd would be a good candidate then for the study and he said so far everything looked good. I also asked if there would be a better study out there besides this one, and he said no.  For Todd's MDS with the IDH2 gene mutation, this was the right one. 

We asked if we could start the study here and then transfer to another closer study location and he said yes. According to his sources, Cleveland might be up and running by mid-April at best. 

I asked if the drug was working for him, could he stay on it indefinitely and he said yes. They would continue to administer it to him throughout the additional phases of the study as long as there were no complications or adverse events (AE). Todd could continue transfusions and his current medications without any restrictions. 

When I asked about how often we would need to return for testing throughout the study, his answer surprised me; it was a bit more often than I had anticipated. The first month, we would be required to be present once a week. After that, every 15 days or twice per month. Testing on days 1 and 16 the first month would be the most intense with testing lasting 10 hours each day. He advised us to be prepared to stay an extra day afterwards to have some recovery time before flying home. 

When I asked the most important question: What could we expect from the drug that would help Todd and how soon he could start it, he began by saying that they are not sure how sustainable the response would  be. They hadn't got that far along yet in the studies.  So far, they have had patients still having positive results for as long as 14 months. He was clear to say that the drug should not be considered "curative."  He said the goals he would like to achieve in Todd's case would be to get his counts high enough to get him off of transfusions and to get his white count up past the point of being neutropenic. Blast counts at this point wasn't considered a major issue, since they were already low at 3%. The good news is that the drug can create healthy neutrophils from the blast cells, because it allows them to mature. 

He was very frank with us when I asked him what his opinion was regarding Todd's prognosis. Todd's BMT doctor just danced around the issue, and we wanted to know the truth. He regretted to tell us that relapsing within the 100 day period post-bone marrow transplant was detrimental and that Todd's only real hope for a curative treatment was the transplant. I cried and said why didn't the transplant work!  Everything was ideal going into it. I said I wish we hadn't done the transplant and it only seemed to make things worse. He assured us that we did the right thing in pursuing the transplant. There was no doubt in his mind that he would have recommended the transplant too, even if it was for a family member; he would have done the same thing.   It's so frustrating and hard not to ask WHY???

I asked him what was the difference  between staying on monthly rounds of Vidaza or doing the trial drug. He said that after looking at Todd's blood work, it didn't look like the Vidaza was really working. His platelets have come up but his other counts are still down. He also asked us if we know how sustainable Vidaza is, and we acknowledged that there would likely be a point where he would no longer respond to Vidaza. He agreed. In all fairness though, I had learned that it takes 4-6 cycles of Vidaza to reap the best benefits and Todd only had 3. 

With Todd's MDS, his blast counts have never been out of control or escalated to AML (>20%), but that's not what is affecting Todd's condition. Right now it's the low blood counts, especially his low white and neutrophil counts. This puts him at such a high risk of infection. As a matter of fact, he put it bluntly that for most patients in Todd's condition, infection is the most likely cause of death. The doctors are doing what they can to prevent this scenario by giving him antibiotics and antiviral medication. Monitoring his temperature is crucial. It is often the first sign of infection. If caught early, they can treat it more effectively. 

As to the costs, we are responsible for the preliminary screening, which our insurance should cover. Once he has been deemed eligible for the study, the drug company will pay for tests and treatments associated with the trial. In addition, they will help out with travel expenses up to a certain amount. 

So far there are at least 73 patients currently on the drug officially. It is a pill taken usually once or twice a day. We will be notified what amount and dosage Todd will take. When I asked about side effects he said that there have been some. Mainly an increase in bilirubin, but no major complaints of nausea or diarrhea. Among the AEs there have been some concerns with heart and lung problems. 

This is why they run all of the baseline tests: to establish how his organs are prior to the study and if there are any significant changes that could be caused from the drug. 

We asked how soon Todd could enroll and he said it takes about a week to sign, screen, and receive eligibility status. We asked if we could start by signing the consents that day, but he said no. Apparently, you can't see the doctor and sign the consents the same day. (Might look like Coercion). He asked if we could stay another day or two so we could get everything started while we were already here. We said we thought it could be arranged if they could do everything tomorrow. So his staff began to see if they could get all the necessary tests scheduled for the next day, while I called The Corporate Angel Network to switch our flight, and the hotel to see if we could stay another night. They got everything scheduled and so did we. I called my mom and asked if she minded to stay another day-it was fine. 

Before we left the hospital they needed to do a finger stick to collect a little blood to check his counts. Then he had to have a chest X-ray to look at his Hickman catheter. This protocol has to be done since Todd's Hickman was not put-in by Memorial Sloan Kettering. They have to ensure that it was done right and looked good before they are allowed to draw blood from it. 

It was rush hour when we left. We walked back to the hotel and Todd put on his PJs and took a nap. I eventually joined him. We napped until about 9:00 pm. We were too tired to go out so we ordered a true New York style Margherita pizza and had it delivered to our room. It was delicious. We watched a bit of TV and I flushed his lines and worked on the blog. We were looking forward to sleeping in, getting a hot shower, and getting a good breakfast since we didn't need to be at the hospital until 12:00 noon. 

In closing, We were sad to hear that our hopes for a curative second transplant were confirmed: not to pursue it because the rate of success would be very low. We were encouraged that we could start the process of getting enrolled so soon. Although the drug is not considered curative, we have hope that Todd will see an improvement in his counts and hopefully have more energy, and a better quality of life. There is still so much they don't know about the sustainability of the drug, or how long it will work, but we feel this is the best option for now. There is always hope that it will work for a long time, or long enough until another cure or newer treatment becomes available. 

I keep telling myself that miracles happen everyday!  It could happen for Todd. Thanks for your continued prayer and support. God is still in control of the big picture. 

Tired of low Counts and Transfusions

I made sure to go with Todd today to get his chemo. He was scheduled for blood work today to see if he needed any transfusions. The Cancer center has been so busy this week, there were few open chairs for patients and their caregivers. 

Todd's hemoglobin came back at 7.6, under the 8.0 threshold requiring transfusion. We were also warned that his whites were at .300 and ANCs were at .100; both so terribly low. Of course, he received his chemo today anyway. Just one more day to go. A friend from the transplant floor called to check on Todd yesterday and she said she had treatment with Vidaza in the past with similar low numbers and she did fine. She did stress how important it is to get to the hospital in a timely manner though if a fever develops. His nurse also cautioned him about the neutropenic guidelines, which we have already been following. It is comforting to know that he is on antibiotics and antivirals just in case. 

After waiting for about 15 minutes for a scheduler to set up a transfusion appointment at the hospital, I decided that was long enough. We were NOT going to sit around for hours waiting for orders or for the transfusion to get scheduled. Our nurse was so busy; I knew I had to be proactive. 

I went out and explained the situation to one of the schedulers. She started checking on where his "Stat" transfusion orders were at. Within minutes she was on the phone with Miami Valley Hospital getting him in. I was so thankful!  She knew all the protocol to follow, who to call, and had our appointment set up in about 10 minutes!

We grabbed something quick to eat knowing we would be at the hospital for hours. We arrived at Miami Valley Hospital in Dayton and they got him into a chair in the Advanced Treatment Area and we began the long drawn out process of getting blood. This includes the patient History, vitals, signing waivers, getting a type and screen, waiting on the blood to be sent down, giving him pre-meds (Tylenol), having two nurses verify the blood and patient, and finally starting the first unit slowly for the first 15 minutes to make sure he doesn't have any reaction to the blood. This takes about an hour and a half or more. 

If there is no reaction, they increase the speed of the infusion. Each unit takes about 1 1/2 hours to run and he usually always gets 2 units. And of course it takes time in between to get the second unit sent down, verified, vitals collected, and get it started slowly. Today getting two units of blood took over 5 hours, which is pretty typical. 

It is nice getting treatments at the Cleveland Clinic because Todd could get everything in one location, instead of here in Dayton he has to go to the Cancer center for his chemo and then to the hospital for the transfusion. While they are more protective of their patients at Cleveland Clinic than at Miami Valley, I didn't miss the nearly 4 hour drive back home like we have to do when we go to Cleveland. 

With Todd's ANCs and white counts so low, I didn't like him being in a room with just curtains separating him from people they were bringing in pneumonia or others who are hacking and coughing loudly. I think this was because the advanced treatment area is also the express admission unit. 

All that aside, I'm so grateful to be home in our house, in our own bed, with our children in Dayton receiving treatment for Todd right now. We will be back in Cleveland soon enough. 

Todd fell into bed and rested after getting  home. He ate a little bit and relaxed with the girls. I was concerned that he has seemed a bit down in addition to being so worn down physically the last few days. So, I am appealing to those of you who care enough to read this blog to pick up the phone and give him a call this weekend. He knows you have been faithfully praying for him, but I think he would enjoy hearing from you too. May God bless you!  

3rd Round of Chemo starts with Neutropenia

It's been almost a week since I've had the chance to update the blog!

APPOINTMENT WITH LOCAL ONCOLOGIST: 

Todd's Thursday, February 5, 2015 appointment with the local oncologist went well. His doctor hadn't left for his trip to climb Mt Kilimanjaro yet (leaves on Sat). Todd's counts were stable and no transfusions were needed. His hemoglobin went to 9.1 and his platelets to 29,000 which was good, but his Whites and ANCs were still low. 

We talked about whether to proceed with the Vidaza on Monday or not. The Dr. said that his BMT doctor in Cleveland is the quarterback calling the shots, which in her opinion is treating if ANCs at .500 or greater. The local oncologist said he wasn't quite comfortable with that and likes the ANCs to be around 1.0 but has proceeded with counts of .7 or .8 in special circumstances. 

Todd had a good day on Friday. Saturday we got up early and took our daughter to her second college visit in Columbus, OH. While the campus we toured was compact, there will still a good amount of walking and stairs to climb.  It was  a long day. Even though he was wiped out, he was glad he got to go.

On Sunday, I made him stay home to rest while I took our youngest daughter to a volleyball tournament. These things are crazy!  They are fun to watch, but they are all-day!  We left at 7 am and got home at 8:30 pm!  It's loud with screaming, cheering, and whistles from about 8 courts blowing at every point!  You're in one building with about 300 people, so it's not an ideal place for him to be. I was happy he trusted my advice as his caretaker to stay home and rest up for his chemo treatment the next morning. 

Needless to say, I was exhausted and I'm healthy!  So Todd went to his chemo appointment alone so I could sleep-in.

 FIRST DAY OF CHEMOTHERAPY: MONDAY, FEBRUARY 9, 2015

His first chemotherapy appointment routinely starts with a CBC to check blood counts before starting the chemo. For some reason (Todd said they weren't busy), his regular nurse at the local Cancer center DID NOT wait for the results and started treatment anyway. Todd didn't stop her. Once the treatment was already running, the results came back with his ANCs at .300!  Todd told her then that he wasn't supposed to get the chemo with his ANCs below .500, but she said there was nothing in his file that stipulated that. I would think she would have known better! She should have waited and asked the doctor on call or something before treating!!! (And the doctor wonders why we prefer treatment at the Cleveland Clinic).

I was so upset and concerned when he got home and told me what happened. He was upset but not for the same reasons: he felt like what choice did he have?  He could not get the chemo and then risk the disease growing stronger and jeopardizing the second transplant or he could get the chemo and maybe get an infection or neutropenic fever.

I think this has been the most devastating part of battling MDS. You have so few options available, and most are just the best they know of or have. That is why the research trials are so important. There are a few treatments they know that work, even in trials, but nothing is long-term. Oh, how we need to pray for a new cure!  The only "curative" long-term treatment is the bone marrow transplant and we have learned, there is no guarantee that it will work. 

I stay in touch with several patients and families we met on the transplant floor while Todd was at the Cleveland Clinic.  Very few are doing well.  One friend who had MDS and stopped responding to Vidaza, had her transplant but has had complications with her chimerism too.  It was going in the right direction at first (her brother's donor cells were increasing), but then it started to reverse (her cells were increasing while the donor cells were decreasing).  Her two bone marrow biopsies post-transplant have confirmed that no disease is present (PTL!), however, they still needed to boost the number of donor cells.  She had a perfect match donor in her brother and also had no Graft versus Leukemia Effect after transplant.  She had to go in last week and have a new port put in her chest, and then received a mini-Donor Lymphocyte Infusion  (DLI) from additionally harvested stem cells from her brother.  No immosuppressions are given, so she is at risk of developing a serious case of Graft versus Host Disease (GvHD).   They are waiting for two weeks or more to see what happens.  If there is no severe GvHD, then they will give her another mini-DLI from additional stem cells they froze.  This process may have to happen several times.

Another friend contacted Todd this week to say he was back on the Transplant Floor with a case of RSV (Respiratory Syncytial Virus), which I have heard of in babies and the elderly.  And another friend has called for the last two weeks with updates about her husband.  His first biopsy was clean and his chimerism was at 98%  everything was going great, even though he had not experienced any GvL Effect from his unrelated perfect matched donor.   Then he got Cytomegalovirus (CMV), which immune-compromised people are highly susceptible to and his numbers dropped.  They treated him with strong antibiotics and it went away, but they couldn't get his counts to stay high enough to avoid weekly transfusions.  He was there for transfusions and a second biopsy to see if his Acute Myeloid Leukemia had returned.  He passed out and they got him in a wheel chair but soon after, half of his face started to droop and he couldn't remember the month or date.  They sent him to the emergency room, fearing he had had a stroke, but they found out that he had a Intracranial hemorrhage instead likely caused because of his persistent low platelets.  They had to take him to surgery immediately to drain the blood and relieve the pressure from his brain.  He was admitted with a drainage tube for several days afterwards getting platelets transfused every day.  While he was there, they took samples from his peripheral blood to see if his disease was back and found blasts cells there at 10%.  They started him on Vidaza the next week and I think he has gotten to go home for now!  

I had heard that there could be internal bleeding from severely low platelets, but I didn't know anything about Intracranial hemorrhages.  I did a little research and learned that this is not uncommon with patients with hematological  diseases, especially ones that cause low platelets (>10,000 or >20,000).  According to research, it is the second most common complication after infection. (Chen, 2012, background).

As you can tell, its not just Todd that is struggling post-transplant.  

Back to the appointment:

I put a call into his BMT Doctor in Cleveland this afternoon, and she confirmed that they are more aggressive at the Cleveland Clinic and she would have told them to proceed with the Vidaza had she been there anyway.  She did advise that Todd start taking his Cipro antibiotic right away, watch what he eats observing a neutropenic diet  (See http://www.lls.org/diseaseinformation/managingyourcancer/treatmentnextsteps/foodnutrition/neutropenicdiet/) within reason, and for him to try to be content staying at home, or at least limit being around crowds because there is so much still going around right now that he can catch.

The good news was his hemoglobin was 9.0 and his platelets were at 81,000. It looks like he received a boost from the transfusions and maybe a bounce from the second round of Vidaza.  At least these higher counts may help him have some energy and keep any serious threat from low platelets at a minimum for now. 

We are back to taking his temperature twice per day, watching for any signs of infections or neutropenic fever.  The doctor reiterated the need to go to the emergency room with any fever over 100.4.

So, please pray he gets through this week without too much fatigue, without a fever, and without any infections.   

Read more:

Chen, Chien-Yuan, Tai, Chan-Hwei, Cheng, Aristine, Wu, Hung-Chang, Tsay, Woei, Liu, Jia-Hau, Chen, Pey-Ying, ... Tien, Hwei-Fang. (2012). Intracranial hemorrhage in adult patients with hematological malignancies. (BioMed Central Ltd.) BioMed Central Ltd. Retrieved from: http://www.pubfacts.com/fulltext/22931433/Intracranial%20hemorrhage%20in%20adult%20patients%20with%20hematological%20malignancies.

Todd admitted to Miami Valley Hospital February 2&3, 2015

So, much has happened, I finally had to close out my last blog without including everything!  I tried to work on that post for the past two days, but just didn't have the energy to finish it.

Todd's counts have come up some, but he still needed a unit of blood this morning, Tuesday, February 3, 2015.  His whites went up from .9 on Monday to 1.1; his platelets went from 21,000 down to 13,000 yesterday and then up a bit today to 14,000; his hemoglobin went from 6.7 after arriving to 7.6 after his transfusions yesterday.  His hemoglobin was still at 7.6 this morning, so they are currently giving him 1 unit of blood.  From what I can tell, his ANCs were at .6 and have risen to .8 then to .9 today.  So, he is above neutropenia level (<500).

He learned from the physician making rounds, that his blood cultures came back negative for infections.  So, the reason for the fever was likely just a neutropenic fever.  (See http://www.uptodate.com/contents/treatment-of-neutropenic-fever-syndromes-in-adults-with-hematologic-malignancies-and-hematopoietic-cell-transplant-recipients-high-risk-patients?source=see_link)

I put in a call to his BMT doctor in Cleveland yesterday, just to let her know what was going on.  She called me back about 4:00 p.m. to discuss the situation.  First, she said Todd was welcome to come back to the Cleveland Clinic if we weren't happy with Miami Valley.  She thought Todd passed out probably because of the low blood pressure more so than the low hemoglobin, but it could have been both.  When I asked if she was still planning on having him start his 3rd round of Vidaza on Monday, she said yes.  As long as his ANCs are above .500 she was still wanting to proceed.  I told her I was concerned about his counts dipping even lower after resuming treatment.  She said, it would still be acceptable as long as they could be managed by transfusions, even if he has to get them often.  She has decided to though to move up the bone marrow biopsy to a week after this next round of Vidaza.  Nothing was said about doing a 4th round.

What was the most interesting information was that she has continued to check into the idea of enrolling Todd in that study for the new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center.  http://www.mskcc.org/cancer-care/trial/13-154   (see Post:  http://toddsmds.blogspot.com/2015/01/recommendation-stay-course-with.html).  She researched Todd's medical records and found that Todd does have the gene deletion that is required to enroll in the study.  In addition, there are no disqualifications for patients who have had a bone marrow transplant.  As long as they have been off their treatment regimen (chemotherapy) for at least 14 days, they can participate.  While the gene testing was done early on with Todd's initial diagnosis for clinic studies with his oncologist at the Cleveland Clinic, the test can be repeated "officially" for the record.  She said that the Cleveland Clinic has not been approved at this phase of the testing to conduct the trial, but she said the closest location that is offering the trial is in Chicago, which isn't too far.  While she's not ready to pursue this avenue right now, she likes the idea of having this option "in our back pocket" just in case.  I thought this was encouraging news.  I like that she listened and was open to researching my suggestion.

No appointments have been scheduled for Cleveland Clinic yet.  She's waiting to see how this week and next week goes.  But according to what she said, we will be heading back to Cleveland for a treatment appointment, bone marrow biopsy, and consultation with her around the last week of February.

Well, it is almost 2:30 pm and Todd just got his discharge papers.  He is changing clothes and we are getting ready to go home!  He has to follow-up with his local oncologist, or rather the physician's assistant (because his local oncologist is on vacation climbing Mt. Kilimanjaro) on Thursday morning at 9:30 a.m. at their office at Miami Valley South.  I hope it goes smoothly and that they don't give him a hard time there about collecting his CBC.

His third round of Vidaza is still scheduled starting next Monday, February 9, 2015.  They will do a CBC before starting.  So, between these two appointments, they should be able to stay on top of his counts to see if he needs any transfusions.  I think Todd has learned the hard way how important this is.  He said if he would have gone in on Friday or even Sunday morning to get his blood work and transfusions done, he wouldn't have had to spend the last two days in the hospital. 

Recommendation: "Stay the Course" with Treatment

First, the good news.  I was able to work with someone at the local oncologist's office and Cancer Center to get Todd's weekly appointments and transfusions streamlined.  I was so grateful to get in touch with the right person to figure out all these problems.  For now on, Todd will have a set nurse's appointment every Monday morning at the Kettering Cancer Center to have his blood drawn properly through his Hickman Catheter.  No more waiting for a nurse!  He can get preliminary counts back there in about 10-15 minutes.  If he needs any transfusions based on his results, they will make an appointment with Miami Valley Hospital's Main Campus to have the transfusion done there that day if the appointment is early enough.  We learned that sending him in later in the afternoon for a transfusion would cause the hospital to keep him overnight for observation, so that is why they have been sending him the next mornings after the type and screen.  So, there will be a wait time on the type and screen, but that is normal and unavoidable.  At least everything will be done in one location after the initial blood work.

Todd went in for his nurse's appointment for blood work, yesterday, Monday, January 26, 2015.  Preliminary results were discouraging.  He was near transfusion thresholds once again:  Hemoglobin at  8.0 with anything lower than that requiring transfusion; white counts .7 or 700; and platelets at 16,000 with platelet transfusion required below 10,000.Todd did NOT receive any transfusions that day, but may be required to return by the end of the week for a repeat CBC and prescription for any necessary transfusions if he starts exhibited symptoms of lower counts (dizziness, shortness of breath, confusion, headache, severe fatigue, etc.). 

We were both a bit discouraged by the low counts so soon after his transfusion on Wednesday of last week at the Cleveland Clinic.  He felt pretty good over the weekend and was able to go with the family on a college visit for Hannah, our second daughter, who graduates this year.  Many may be negative about the expense and stress this may have put on Todd's health, but I can't tell you how important it is to him to try to live a normal life and to share these special experiences with our daughters when he is able to.  He wants to make all those memories with them!  We all want to live every day to the fullest don't we?

I follow and "Like" several MDS forums on Facebook to keep up with the latest news and research in the field.  (https://www.facebook.com/aamds?ref=br_tf)Yesterday, I saw that the Aplastic Anemia and MDS International Foundation had posted a story on my news feed about a new clinical phase 1 trial being conducted with a new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center.  http://www.mskcc.org/cancer-care/trial/13-154  After reading this, I decided to call his BMT doctor at the Cleveland Clinic to touch base with her about Todd's low numbers and see if he would be a good candidate for this trial. 

We discussed his low counts first.  She assured me that  his low counts or cytopenias, are not uncommon with MDS patients who are receiving Vidaza.  While he experienced some low counts and seemed to bounce back quickly the first rounds of Vidaza last year, she reminded me of his sensitive bone marrow post-transplant.  She said that with the chemotherapy, unfortunately they are killing good cells along with the bad.  Todd was just fortunate not to need transfusions prior to the transplant, unlike most MDS patients who have to.  I asked her if she was concerned about doing the next round of Vidaza if his counts remained so low.  She said she wasn't going to give me a definitive answer, because so many other variables need to be considered before then, but in general they will continue treatment as long as a patient's ANCs are over 500. 

His BMT doctor and nurse had just received the backlogged stack of CBC results from the Kettering Center/local oncologist, so she had not had a chance to review them yet.  Without seeing them, she said they typically like to push through the low numbers because the treatment is still working to kill the disease and this chemotherapy or hypometholating agent like Vidaza is much less toxic than any other alternative.

After I got off the phone I resumed watching videos via the Facebook link and found an interview video by Dr. Louis Silverman and Erin Demakos, RN, that confirmed everything that she was saying.  Dr. Silverman asserted that according to studies, MDS patients need to push through the low numbers (known as cytopenia(s)) which are side effects of the Azacitidine (Vidaza) for the first few rounds, to be able to get the results that the 4-6 cycles can produce.  Patients who stop after two or so cycles because of the cytopenias, are not getting the full benefits of the hypometholating agent, yet they suffered the majority of the side-effects with only the two cycles. 

What's even more amazing (I had heard this, but had forgotten it), he said that studies show that the low counts in themselves do no real harm in producing subsequent infections. INSTEAD, it is the underlying disease that causes the health issues and infections.  After subsequent treatments, patients start to see the positive "bounce" or "rebound" that, in the long run, helps them to get better.  Here is the link to the short video: http://www.oncology.tv/OncologyTVNetwork/TabId/1455/VideoId/940/Erin-Demakos-RN-And-Dr-Louis-Silverman-Discuss-Incidence-And-Treatment-Of-Myelodysplastic-Syndrome-In-The-US.aspx

In closing, his BMT doctor said she would review the phase 1 trial being done by Dr. Stein.  She stated that Cleveland may have been considering doing a similar trial with a similar drug (an IDH-1 Inhibitor) from the same company.  She did say though that most of the patients in these phase 1 trials are patients with no other options, unlike Todd.  And, that often patients who have already had a bone marrow transplant are often excluded. 

If you are someone you know is suffering from MDS or another type of Anemia or Blood Cancer, they may want to check out this Oncology TV website that offers various interview videos reviewing current trials and study results.  Dr. Gerds, who was the attending BMT doctor making rounds while Todd was in the hospital, also has a short clip on there about a study he did about patient/doctor communication.http://www.oncology.tv/Home.aspx  Then, go to new videos from ASH 2014.

This has been a long, technical blog, so I will wrap it up for now!  Sometimes all this information can make your brain hurt! 

Other Organization's Facebook Pages to follow:
https://www.facebook.com/pages/MDS-Foundation-Inc/154245875037

(https://www.facebook.com/aamds?ref=br_tf)

Transfusion and 1-2 more Rounds of Vidaza ordered

Today's appointment, January 21, 2015, at the Cleveland Clinic was a long one! We had a snowy and slick drive up to begin with. Once we arrived, the routine blood work was drawn and we waited for the numbers to come back. Neither of us expected the need for a transfusion since his counts were still up on Monday and he had just had a transfusion last Thursday. 

To our surprise his hemoglobin fell from over 9 to 7.9 in just three days. The type and screen took 2 hours and the first unit of blood didn't arrive until almost 2:00 pm. The rest of his counts were low: White counts at .79 or 790; ANCs at .55 which is still considered Neutropenic. His platelets were lower at 36,000 but at least no transfusion of platelets were needed. This is the first time he has had to have another transfusion within 1 week. Usually, he has been able to go about 2 weeks before needing one. The doctor was not too concerned about this. She explained that the low counts and need for transfusions can happen because the bone marrow is still sensitive to changes after a transplant. 

We couldn't go upstairs for his doctor's appointment because he was getting his transfusion, so she came down to his treatment room along with our nurse coordinator. 

First, we learned that she has NOT received ANY of the blood work results that has been drawn in Dayton. So, it was hard for her to evaluate how well his counts were rebounding a week or two after chemotherapy. (Ugh. Why does this surprise me!). 

She could tell he has lost weight and showed some concern about his appetite as a result of feeling nauseated from the Vidaza. She recommended that he take a Zofran every morning before getting chemo.

She also prescribed Cipro (antibiotic) for him to take when he becomes neutropenic the first week after chemo. 

All these preventative medications were discussed as she wants to do 1-2 more rounds of Vidaza. So he will be starting round 3 on February 9, 2015. Then, he will return to Cleveland two weeks after that for a follow up visit. If his counts are able to rebound well after 2 weeks, she will likely schedule a 4th round for March 2015. Then a bone marrow biopsy after that. She also said she might do the biopsy after the 3rd round in February just depending on his counts and his chimerism results drawn today.

Since he didn't get a breathing treatment of Pantamidine, which is an antibiotic treatment they have been using instead of Bactrum (which he has an allergy to), she has ordered a blood test to check his CD4 counts to judge how these helper white T-cells are doing. They can be suspecting to going down after chemo and they are needed to help fight off bacterial infections like pneumonia. 

We didn't get home until about 9:30 pm. I'm sure I've made some errors in this blog because I'm so tired. 

More to follow. 

Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic

When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again.  His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday.  So, he needed a transfusion. 

But the nurses and staff can't seem to get the ball rolling.  First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn.  Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port.  The phlebotomists are not allowed to touch it.  They can only draw from his arm.  So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood.  This has taken anywhere from 30 minutes to over an hour.

After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes.  He was tired of waiting.  So, they got the sample and told him it could take up to an hour to get the results.  He was tired and so he told them just to arrange to have the transfusion done the next day.  They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon. 

He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems).  So, he waits an hour for them to get the type and screen.  Then they have to order the blood.  It always takes about 1 1/2 hours per unit of blood and he always gets 2 units.  So, needless to say it was a long day. 

Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days.  If he needs a transfusion, he can have it done there (supposedly).  When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done!  So, he has to wait til they call the doctor and get orders.  Then, there is no nurse available to take blood from his Hickman again, so he waits.  After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample.  Then, they say it is going to take another hour to get the results and that is with it labeled "STAT."  Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.

Hours later, they call.  Instead of giving him his CBC results, they just said he whites were low at .7 and that's all.  So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him.  He has to leave a message for someone to call him back.

Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again!  I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results.  At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes.  So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it.  She said, "He has good veins, they can just stick him."  And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck!  It could cause him to bleed and bruise!"  And she says, "Yes, I guess your right.  I hadn't thought of that!"  Ugh...

Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting.  He doesn't have much energy or patience right now.  Who would? No patient should have to go through this much confusion and waiting!

It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements.  I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.

 He finally got a call back from another nurse with the other results:  His Hemoglobin is a 9.3, well above an 8; no transfusion needed.  His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed.  But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes  him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc.  These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them.  Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too. 

It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so.  That being said, its not good that they are this low.  We all are going to have to be careful in the meantime.

I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics.  We are not sure what this visit will entail except for the routine CBC and seeing the doctor.  I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant.  At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease.  He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant. 

I will post more after Wednesday.  Thanks again for caring enough to read this blog and to pray for Todd. 

Second Round of Vidaza begins

On Monday, January 12, 2015, Todd started his second round of Vidaza chemotherapy post-transplant. His blood work results were mixed. His hemoglobin was at 8.0, right at his threshold for needing a blood transfusion. However, his platelets rocketed to 116,000!  This is likely from the first round of Vidaza. I remembered that his platelets went up after his first or second round of Vidaza he had last year before the transplant. His white counts were still a bit low at 1.3. He decided not to get a blood transfusion that day because he still had some stamina. So, they are going to collect another CBC on Wednesday to see what his hemoglobin is then. It is likely he will need to get a transfusion then; he will get his chemotherapy and then head to the hospital if that's the case. 

He announced today that he has lost another six pounds. He felt nauseous and had an upset stomach and bowels all weekend. He was concerned that he was trying to fight off a virus, but luckily there was no fever. He still takes his anti-viral medication twice a day. I've broken out a set of paper masks as the girls have been pretty congested lately. We don't want to take any chances. 

Overall,things are going well and we are encouraged. We received a call from the local incologost's office, informing us that we may be eligible for assistance in paying for his Vidaza. It's a new calendar year, therefore we have to start over to meet our deductible. We sent them the required paperwork and received word that he qualified. We don't have to go through paying first and submitting claims; their office handles everything!  Praise God. 

Meanwhile, I have returned to substitute teaching a few days. I also started my graduate online classes through Kent State on Sunday night and I think they are going to be manegable. I've received one "sorry you didn't get the job" letter from the University of Dayton for a part-time library research job I applied for some time back. Nothing makes you feel so miserable than receiving one of those!  I'm trying to remind myself that it just wasn't God's will for me to work there and he closed that door. 

On a more positive note, I did get a call back from Fuyao and the Ohio Means Job Center to take a skills/basic academic test last Saturday morning.  I think I did well, but there are hundreds of people applying. It is a far cry from an academic or library job, since the opening is in Production/Factory work, but I'm open to anything right now. 

In the meantime, I've got plenty to handle for now. Please continue to pray for God's will in all of this:  

Todd for healing and successful treatments. For the doctors making treatment decisions. 

 For me: to get through my classes,to balance work/school/home. For a job to open when the timing is right.

For Abby, who went back to classes at The University  of Cincinnati  this week. She's trying to balance schoolwork and volunteering to fulfill the requirements of her scholarship. She is also bouncing between life there and what's going on here at home.

Hannah has been trying to complete her college applications which have been quite involved since she has to upload her portfolio of artwork for each one. She has exams this week and hasn't felt well. She begins taking art lessons in February  at the Dayton Art Institute through a scholarship she was awarded. Applying for colleges in time to be considered for merit scholarships has been taxing. Pray she can get them done soon and still balance school. 

Ellie has exams this week too. Her club volleyball season begins this Saturday with a long all day set of scrimmages. The season is full of Saturday all-day tournaments. I have been out trying to find businesses to sponsor advertising for the club volleyball yearbook, so we can reduce our costs, but so far I've haven't got anything definite. 

As you can see we all have a lot going on and the added energy needed to fight this Cancer and financial hardship has been more than challenging. We need your prayers. Thanks for your support. 

My inspiration this week: Song by Jeremy Camp, "He Knows."  Check it out on YouTube. 

A Chat with the BMT Doctor clarifies Results and Treatment

We received a call back from Todd's BMT Doctor this afternoon, Wednesday, January 7, 2015.  She is assigned to doing rounds on the BMT floor at the Cleveland Clinic. 

I asked her to help clarify Todd's latest chimerism study results.  The results indicated that cells captured in the peripheral blood showed 50% of cells from Todd's original bone marrow.  When isolating just the T-cells, which are his fighter cells, from the blood, they found 24% were from his original bone marrow.  I was confused which number indicated the overall percentage of Todd's cells, knowing the remainder would be the donor cells.  Was it 50% Todd's original marrow and 50% Tom's donated marrow? Or, was it 24% Todd's marrow and 76% Tom's?  Apparently, it isn't so cut and dry.  Todd's overall chimerism is at 50/50 and the T-cells are 24/76.  Either way, these results are better than what they were prior to his first round of post-transplant Vidaza treatment, which was 60% Todd and 40% Tom's cells. 

When I asked if the chimerism could be totally reversed to 100% donor cells at this point with just Vidaza treatments, she agreed with his local oncologist that it would be highly unlikely.  While the Vidaza may continue to reduce or kill Todd's original marrow cells, it would never be able to be fully reversed if cancer cells are still present, which includes any amount of those fighter original T-cells (the second count) from Todd's diseased marrow. The Vidaza is helping with the chimerism, but it is mainly limited to killing the blast cells and attempting to reverse the 5q chromosomal deletion he currently has. 

I also asked her to distinguish between a Donor Lymphocyte Infusion (DLI) and a second stem cell transplant and which she was planning to do after the treatment rounds of Vidaza.  She said she wasn't sure just yet; everything depends on his chimerism and whether his MDS can get put back into remission.  She said she is anticipating doing the second stem cell transplant with some type of chemotherapy to suppress his bone marrow and cells.  She doesn't think the DLI would be successful or effective if any of his own marrow still exists, because the diseased marrow/MDS is still too strong and would likely kill off the DLI cells.

She was pleased to hear that he didn't need any transfusions this week and that better arrangements had been made to get his transfusions done sooner while we are in Dayton. 

All of these detailed, technical medical terms and procedures are enough to make your head spin!  Todd's local oncologist asked me if I had now become a nurse since I've learned so much throughout his care and treatment!  I wish!  If I was about 20 years younger, I would love to study medical research.  There is so much going on in the medical field now, especially in the field of genomics, isolating causes and finding new drugs or treatments.  There has been some great success with some types of leukemia with medication like Gleevic and programing T-cell fighters. There isn't much to offer MDS patients at this point, except the great success they have had with the medication, Revlimid for patients with the 5q deletion.  Since I don't want to start medical school (ha ha!), the least I want to do is to help raise money for the MDS International Foundation and/or the Leukemia and Lymphoma Society.  These organizations help to fund and organize clinical trials and medical research for new treatments and medications.  I will, someday.  When the time is right.

Todd is still suffering from his frozen shoulder.  Not much seems to help.  He looks so helpless unable to use his arm!  He's feeling a bit run down, so I plan on tying him down and keeping him in the house resting all day tomorrow.  Its going to be so cold here, that even a healthy person shouldn't  be out unless they need to.  The girls are off school because of the dangerous temperatures, and Abby hasn't returned to Cincinnati to resume her college classes yet. So, the plan is to hunker down!  Stay warm!  God bless you!  We appreciate your prayers and support.

Day 112: Local Oncologist; No transfusions needed

Tuesday, January 6, 2015 found us at the local cancer center in Dayton to have Todd's CBC drawn to see if he needed any transfusions and to connect back with his local oncologist. 

Praise God, no transfusions were needed. As a matter of fact, his counts were good!  His hemoglobin was stable at 8.9; platelets at 16,000, and his whites were high (for Todd) at 3.5 or 3,500!!! (Normal range on the low end is 3.8). His ANCs were normal at 2.6. The whites and the ANCs help Todd fight infection, which is so important right now with so many viruses and the flu going around. 

Todd complained to the doctor about his last CBC and the long wait (5 hours)i in getting an order and setting up his platelet transfusion, which had to be done the next day at 7 am. The doctor said that should have never happened and suggested that we go to the other location at the Cancer Center at Miami Valley South Hospital. That way he can have his blood drawn along with a type and screen and if needsa transfusion,it can be done right there at the hospirL. So, every Monday that he doesn't have chemotherapy, he will go to the Miami Valley South Hospital Cancer Center for blood work.  The chemotherapy though at least for next week will be done at the same location. 

The doctor asked what options for treatment his BMT doctor in Cleveland was considering. We talked about the possible use of Revlimid medication that is used successfully in 5q deletions alone. We talked about using an unrelated donor instead of his brother for the second transplant and/or donor lymphocyte infusion (DLI). He is always very respectful of Todd's BMT doctor,but still engaged us in discussion about it. 

Earlier in the morning, Todd got his last Chimerism results posted to his "My Chart". It showed that Todd's original cells in his peripheral blood was at 50% and the amount found in the T cells was 24%!  This is a huge reduction from the last results that had him at 60% and his brother's donated cells at 40%. I have requested that his BMT doctor in Cleveland call us to explain these results. We briefly discussed them at his appointment today and asked if this change could be attributed to the Vidaza working and if it could result in giving Todd the full donor cell chimerism he needed to bring his donor cells to 95-100% and Todd's 0-5%. His opinion was that Vidaza can only attack the immature cells once they are produced, but it cannot target the mother cells that keep producing the bad cells. Only new transplanted bone marrow could do this. But, he agreed that an additional DLI of his brother's stem cells could allow his brother's marrow to get the upper hand and it could help to produce some Graft versus Host Disease needed to wipe out the remaining original marrow. 

He didn't act surprised that Todd didn't develop any Graft versus Host Disease with using his brother's perfect matched bone marrow. That's why he raised the question of his BMT doctor using an unrelated donor next time. I told him I had asked her the same question: Was Tom's marrow too much of a perfect match, that Todd's body did not offer any resistance to it, especially with the immunosuppression therapy that was applied?  I gave him her explaination about having three marrows might not be the best choice right now.  We also explained that she is taking everything slow and carefully weighing each treatment decision according to Todd's changing condition week by week. 

We go back to see him in a month. Meanwhile, the second round of post-transplant Vidaza chemotherapy starts next Monday, January 12, 2015. 

I'll come back and edit this post or write an update once I get some clarification from his BMT doctor when she calls us back. 

One note: the oncologist today had my back and got onto Todd about doing any manual labor or activity. Even though he may have good days when he feels like doing chores around the house or yard, he still needs to be cautious. Any fall, bump, or injury could cause internal bleeding with such low platelet counts. 

We also discussed his frozen shoulder pain and told him he could take some Tylenol and/or the oxycodone (that doesn't work for Todd) but absolutely NO ibuprofen. He was also willing to send Todd to get physical therapy if it was no better. He didn't think or know of any relation with the flare up and low platelets.