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!

Transfusion Dependency Continues.

Todd was tired and ready for a transfusion on our way to Cleveland Clinic August 17, 2016. The had a full day scheduled for him so we needed to start the day early which meant going up the night before. We usually stay at the Hope Lodge in situations like this but now that I'm working full time it is difficult to get there by 7 pm, the latest check in time. I would have had to take off work early on Tuesday in addition to taking off that Wednesday all day. Instead, Todd made hotel arrangements through the Priceline website. If you have never used it, you bid on a room for a certain price. But you have no choice of what hotel you end up with and there are no refunds.

We ended up with the Hilton Garden Inn Downtown Cleveland near the ball stadium. Sounded good. Unfortunately, we got a late start and didn't arrive until almost 11:00 after the long drive. Todd was exhausted. We went to our room and realized it reeked of cigarette smoke. We went back to the desk and tried to explain that Todd was a cancer patient, already didn't feel good and had a cough and we couldn't stay in that room. They informed us that it was a smoking room and that they couldn't move us because the entire hotel was full (which I find hard to believe on a Tuesday night).  They only offered to spray the room with a scent or put in an ozone filter machine, but that it would take hours!  I told them that neither option would rid the room of the smell plus he was exhausted and needed to lay down now. They refused to give us a refund saying their hands were tied because we booked through Priceline. I appealed to their moral obligation to do the right thing but once again said there was no other room. We also challenged the hotel for having smoking rooms in the first place when Ohio has been smoke free for over 15 years!  They said that since they were renting out a private space they could get around the laws and that they plan on getting rid of the smoking rooms when they remodel in the future. 

I don't mean to offend smokers. I have loved many people who were smokers,  most of them having died from the side effects. However, this is the reason why the laws are in place in Ohio: to protect non-smokers who have no choice in the matter. Especially sick people and children. Most smokers I know are conscientious and would gladly smoke outside. But this business wanted to make money on those smoking rooms they were having trouble selling. 

We said that Priceline listed the room as a non-smoking room, but the hotel insisted that they tell Priceline it may be a smoking room and it is Priceline's responsibility to tell consumers. I tried calling another hotel we had stayed at before. The entire hotel was non-smoking and they had a room at the Cleveland Clinic rate available but Todd was too exhausted to go. So we had to endure a night of smoke smell and no curtains. I called the GM but got voicemail. He called me back the next day while we were at the Clinic to offer us a free room but I refused.  I didn't want a free room then. He said it that every single room in the hotel that night was booked. I congratulated him and told him they apparently didn't need our patronage if they are that busy on a Tuesday night. I told him I don't want to stay anywhere that is not smoke free and I said with one in three people getting cancer it was likely he or the men working that night may have a sick family member and may be in our shoes one day. We showered, dressed, and tried to get out of there as fast as possible. I didn't want to walk around smelling like smoke all day!

When we arrived at the Clinic, Todd had to start his day of appointments with a few tests on his lungs, including a pulmonary function test.  We saw the pulmonary physician.  He asked several questions and reviewed the results of his prior lung CT in addition to the morning’s tests and said nothing looked suspicious.  He had no idea what was causing Todd’s cough.  He prescribed him some cough medication, but that was it. 

Next, was lab work.  They were going to give him at least one unit of blood even if his hemoglobin wasn’t below 8.0.  It had been hovering around 8.1 -8.3; not enough to get a transfusion but still not enough to give him energy.   Originally, the trial nurse didn’t have a treatment appointment scheduled for a transfusion, but on the Monday before, I knew he wasn’t feeling good and would likely need it. So, she was able to add it to the schedule.  It was a good thing, because he did need it.  His hemoglobin had dropped to 7.5 and they were going to give him 2 units.  We were waiting for the type and screen and results to come back when Sam the trial nurse and Dr. Hamilton came in to see him.  We were disappointed that all his counts had once again dropped even more:

Whites had dropped to 1.46; ANCs to .95, and platelets to 31,000. 

She thought it was likely that the trial drug AG-221 was losing its effectiveness.  There was just no other explanation. I was confounded when Dr. Hamilton started talking about other options: Revlimid (for patients with Chromosomal Deletion 5q), and even harsh chemo and a second transplant!  I didn’t understand why we were discussing this now; neither one of these last two options would have a high success rate at this point.  I thought we should have at least Revlimid to try and/or going back on Vidaza again before bringing those options up. She was also concerned that he was starting to lose a little weight.

While getting his transfusion, the respiratory therapist came in and gave him his Pentamidine Breathing Treatment and another trial nurse came in for his EKG.  He had to miss two other appointments, because of course, everyone was running behind and we couldn’t get to either.  One was to receive more immunizations.  I wasn’t upset about missing this one.  I didn’t think it was a good idea anyway; to be getting more immunizations with his counts so low. 

We drove through thunderstorms and finally got home around 9 p.m.  I was hoping he would start feeling better right away, but the next day, he felt faint and couldn’t drive home from a haircut.  Luckily he was near his mother’s house and stopped there to take a rest and then drove home a couple of hours later.  That day and the next day he still felt puny and didn’t get out of bed much. 

This concerned me, so on Thursday, I put a call into the doctor and she called me back on Friday morning, August 12.  I told her about Todd’s lack of energy and nausea.  I also asked why she brought up chemo and a second transplant.  She said she just wanted to discuss all of his options.  She said that if Todd started needing transfusions more often, that she would consider taking him off the trial drug and starting the Revlimid, but not until then. 

By Friday afternoon, I was concerned and decided to call Dr. Eytan Stein at Memorial Sloan Kettering in New York City. He saw Todd before he started on the AG221 and I knew he had a lot of trial experience with the drug.  I wanted to pick his brain about other options.  I left a message and by that evening, he called me on my cell phone at home.  We discussed Todd’s case and current condition, the great response he had with AG221, and then the steady decline of his blood counts.  He was surprised at Todd’s great results with the drug, but then said that they had noticed that some patients who stopped responding to AG221 who had the IDH-2 genetic mutation, often developed an IDH-1 mutation in addition.  For these patients, there was a new trial drug AG881.  He asked me to have Todd’s bone marrow biopsy, doctor’s notes, and latest genetic panel sent to his office for him to review.  

I sent an email to Sam, his Trial Nurse at Cleveland Clinic to request they send the information to Dr. Stein.  Unfortunately, they hadn’t done a genetic mutation panel since May 2015, so they would have to wait until his next scheduled bone marrow biopsy to get this, but she sent what they had.  We were charged $45 for this request, but I will pay it happily.  I decided last year that I would do whatever it takes, including seeing the best doctors, traveling to any hospital to help him. 

I talked to Sam on August 17, the following Wednesday and told that I didn’t want to step on Dr. Hamilton’s toes, but that I really wanted to hear what Dr. Stein had seen in his trials and practice that could be of any help to Todd.  I also asked her to call in blood work orders, as Todd was still feeling poorly and I feared he needed another transfusion.  She called them in for the next day, Thiursday, so if he needed a transfusion, he could get it on Friday before the weekend.  Stubborn Todd however, refused to go then.  He wanted to wait until Monday, August 22, 2016 to go have his blood work done that way they could use it for his trial draw and wouldn’t have to repeat blood work scheduled on Wednesday August 24, for his trial draw for Cycle 18, Day 15.  Well, that was a mistake, one he admitted later.  He felt horrible all weekend. He didn’t drive, leave the house, or get out of bed.  The Olympics were on TV, so that kept him entertained in bed between naps.  By early Sunday night, his cheeks looked red so I grabbed the thermometer!  He was running a low-grade fever or 100.3; enough to go the emergency room.  He refused to go. I conceded as we both thought it was just a neutropenic fever.  We kept an eye on it and it was down to 99.6 before bed.

In the morning, he took a shower and his temperature was normal.  I took him to Soin Medical Center for a nurse’s visit in the Cancer Center there on the 4^th floor at the appointed time of 8:30 a.m.  His nurse also felt that he had waited too long to come in and thought he looked especially jaundiced since he was so pale (low hemoglobin).  She said that she wasn’t going to let that happen again and scheduled him for another blood draw to check counts for next week, August 31, 2016. I was glad for that.  After waiting almost 2 hours since we arrived, we finally got his counts back:

Hemoglobin was a low 7.0.  Whites 1.0.  Platelets 22,000 (transfusion of platelets needed at 15,000) and ANCs at .7 (neutropenic at .5).  

She gave him all the necessary warnings about his care: Careful with hot showers because of getting petechia spots, bleeding while shaving, etc.  When she went to schedule the transfusion, she came back and said she set it up for the next day, thinking that was what he would want.  I was upset at this!  I told her that he needed the transfusion TODAY! And that we were not leaving without one; he couldn’t wait.  Todd was so sick, he didn’t feel like arguing with her; so I did!  She told us that it would take 3 hours for the type and screen, longer to get the blood ready, do the transfusions, and that we wouldn’t be done til 8:00 p.m. that evening.  I told her I didn’t care and questioned why she didn’t do the type and screen when she drew blood.  He had already told her that he knew he was going to need a transfusion.  We had already been there for 2 hours!  She said she can’t type and screen for blood type until the initial blood results come back and she gets orders for the transfusion.  To me, this could have been done at the same time; this is what they do at the Cleveland Clinic and I told her so.  Long story short, I was so glad that I took him and told my boss I would be late.  If not, I know he would have went home and waited the next day.  Then, he would have had another day of feeling  bad and getting up early again. 

It didn’t end up being as bad as she thought.  I wheeled him done to the Universal Care Area and they checked him in right away and got him a bed.  I made sure he ordered lunch, then I went into work for a few hours.  They had the first unit to him by 1:24 p.m.  I went back to the hospital about 4:20 and he was finishing his second unit.  We were out of there by 5:00 p.m.!

This is why the caregiver needs to be present to help with the decisions that the sick patient don’t feel like dealing with.  He didn’t want to argue with the nurse; he didn’t feel like it!  But I did!  He told me later that he was glad that he didn’t wait until the next day.  And unknown to the nurse, we were out 3 hours earlier than her prediction! 

That afternoon, I talked to Sam, his trial nurse at the Cleveland Clinic and let her know his numbers and that he received 2 units of blood.  She said that she was feeling pretty sure that he was losing his response to the AG221 and would talk to Dr. Hamilton.  She was also concerned with his low white and ANC counts and would also discuss putting him back on his Cipro antibiotic as a preventative measure.  After talking to Dr. Hamilton, Todd was ordered to take his Cipro 2x a day and we were told that Dr. Hamilton was going to talk to Dr. Stein at Memorial Sloan Kettering to discuss Todd’s case and the option of taking him off of the trial drug AG221 and putting him on Revlimid. 

The transfusion seemed to help.  He was able to get around yesterday and even drive.  I am feeling a sense of urgency to get his medication changed and was greatly relieved that the two doctors are going to talk.  

The trial for AG881 is only available at 5 US locations: New York, Chicago, Boston, Aurora Colorado, and Texas. We won’t be able to find out if he eligible until he has the genetic panel processed on his next bone marrow biopsy at the Cleveland Clinic at his next appointment on September 7, 2016.  Then, it may take a few weeks to get the results back.  I’m hoping in the meantime that they can start him on Revlimid.

Did I mention that Revlimid (Lenalidomide) is on the market already and that it is very expensive?  According to Wikipedia, the cost for one year’s use was about $163,381.00 in 2012. (Wikipedia, 2016). Drugs.com quotes a 10 mg tablet, the starting dose for MDS patients at $16,457.14 for one month’s dose of 28 tablets!  (Drugs.com. 2016). I’m praying we will not have to pay all of that between insurance and a request to the drug company, Celgene, to buy it at a reduced price.  Of course, there is no generic available.

I'll post after blood work next week. Until I continue with my mantra:  Whatever it takes!

For More Information: 

Alsumidaie, M. January 2, 2015.  “The Cost of Saving a Cancer Patient’s Life” Applied Clinical Trials. Web. Retrieved from: http://www.appliedclinicaltrialsonline.com/cost-saving-cancer-patients-life-analysis-celgenes-revlimid

Celgene.com. May 2015. “Celgene Patient Support for Revlimid” Web.  Retrieved from: http://www.celgenepatientsupport.com/revlimid-patient/

ClinicalTrials.gov. August 23, 2016.  “Study of Orally Administered AG-881 in Patients With Advanced Hematologic Malignancies With an IDH1 and/or IDH2 Mutation.” Web.  Retrieved from: https://clinicaltrials.gov/ct2/show/NCT02492737

Drugs.com “Revlimid Prices, Coupons and Patient Assistance Programs.” August 8, 2016.   Web. Retrieved from:  https://www.drugs.com/price-guide/revlimid

Wikipedia. Lenalidomide (Revlimid).  August 24, 2016. Footnote 2, 2012.  Web.  Retrieved from: https://en.wikipedia.org/wiki/Lenalidomide

MORE TRANSFUSIONS MAY BE NEEDED AS COUNTS REMAIN LOW

My last post left off with Todd going into the local oncologist/lab to get his routine labs done for his trial drug AG221 Day 15, Cycle 17 on July 27, 2016. We were anxious to see if the transfusion he received the following Thursday had helped to boost his blood counts.

Unfortunately, they did not. The results showed his Hemoglobin at 8.3, whites 

at 1.4, ANCs at 1.1, and platelets at 46,000.  This means he is once again close to needing another transfusion (hemoglobin < 8.0). This is also the lowest his immune system (reflected by the white and ANC counts) has been since he was in the hospital last October 2015. What does all of this mean for everyday living?  Taking extra precautions with activities like shaving with a razor (low platelets), living with severe fatigue, watching for a fever, and being cautious with what he eats (washing fruits and vegetables well, avoiding raw or under-cooked fish or meats, etc).  But worst of all, being severely anemic means  transfusions. The transfusions themselves aren't necessarily bad for him, even though they can result in a build up of iron, but they are inconvenient and often a multi-day process. First, getting labs to see if he needs a transfusion, then getting typed and screened, then setting up the transfusion at the hospital, and then the almost day-long process of getting the 2 units of blood. The depressing cycle  of fatigue and knowing your counts are dropping and hoping the transfusion will provide the much needed energy can be draining. 

I talked to Todd's bone marrow transplant Doctor this morning to get an idea of the game plan and where we go from here. She informed me that they ran a complete viral panel with his blood work and everything came back negative. If he had something bacterial he would have a fever. And the last bone marrow biopsy showed no increase in blast cells. 

This was her opinion:  Schedule appointment with Pulmonary Specialist to look at lungs, since he is still struggling with the cough. Next, deal with the anemia with transfusions until we know what's going on. I agreed with her that it may take some time to see if his complications and anemia is the result of "the disease evolving." While the AG221 is helping to keep blast counts low, it may not be keeping the disease from causing the anemia and low blood counts. My daughter Abby had brought up a good suggestion, which I put to her: "Would it help/be an option to increase the dose of his AG221?"  It was something she hadn't considered, but said it could be an option, but, if he is already suffering from the side effects of nausea, diarrhea, and high liver enzymes, that increasing the dose would likely make all of these side effects worse.  Not to mention, she would have to approach the drug company and ask it was even an option.

She had just received his cyto-genetics report back from the most recent bone marrow biopsy, and while there was no real major changes or new chromosomal abnormalities, she had noticed an increase in the number of 5q abnormalities, which could be a reason for the lower counts.  She said that about 15/20 chromosomes observed had 5q deletions. She said she may consider the idea of switching Todd's medication from AG221 to a medication used to treat MDS patients with the 5q deletion called Revlimid.  Since the transplant failure, we knew he had this option in our back pocket if we needed it.  It might be time to pull it out and use it.  Unfortunately, it is very unlikely that he could continue on the AG221 and just in the Revlimid, because it would be against the conditions of the trial study.  But, if Todd would become transfusion dependent, and the AG221 was deemed no  longer effective, then this is another good option for him.  We all have been so bullish on AG221 because it has worked so well for him, so we aren't going to let it go until we know for sure that it is not helping him.  I've even considered calling Dr. Eytan Stein at Memorial Sloan-Kettering in New York again if we can't get some answers, to see what he thinks.  Whatever it takes; that is what we will do!

I'm trying to make him rest and take it easy.  It has been so blistering hot in Dayton the past week, that being outside is more  difficult for him. I'm  getting good with the Zero-Turn Lawnmower!  We are planning on taking it easy this weekend, plus, Hannah Lewis is getting wisdom teeth taken out on Saturday!  So, I'll be nurse Kimberley to the invalids this weekend! (just joking). 

Todd will go get his blood counts checked at the beginning of next week, if he thinks he needs a transfusion.  I have to say I was impressed with his nurses at Soin Medical Center.  They sent him a personally signed card wishing him to get better!

The next trial appointment at the Cleveland Clinic will be August 10, 2016.  They have a full day of tests already scheduled.  Maybe we will find out something more by then.  We wanted to try to take a family vacation before the kids go back to college and school, but its not looking good since we just don't know how he is going to feel and if will continue to need transfusions.

Thanks for your support.

MORE INFORMATION:
About revlimid: https://www.drugs.com/revlimid.html

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. 

The year ends with Transfusions.

We had to get up at 5:00 this morning to be at the Cleveland Clinic by 9:15 am. As we got closer to Cleveland we see what looks like mountains in the distance. Of course there are no mountains...it's a huge cloud bank covering Cleveland. How typical!

We arrive and they quickly get to the blood work, including a new chimerism study and type and screen anticipating the need for transfusions. Todd was feeling pretty fatigued the past few days and we knew his hemoglobin was down last Friday. The results came in that he needed platelets. His was 9 and the threshold is 10. He also needed two units of blood since his hemoglobin was at 7.6. and the threshold is between 8 and 8.5. His white counts were up to almost normal at 3.47 or 3,470 which is likely the result of the Vidaza chemotherapy giving him a bounce. 

Todd teased that he knows how a vampire feels when he hasn't had any blood!

Our social worker stopped by to give Todd the standard 100 day post-transplant survey. She has been such a great help!  

Todd's regular BMT doctor was back from vacation and we had a good long visit. She took him off all of his maintenance medications except for one, his Acyclovir. This made Todd happy!   After discussing today's counts she talked a little bit more about where Todd is and a likely game plan for the next few steps. 

First, he will have his next round of chemotherapy in Dayton starting January 12, 2015. She said she only wanted to do 5 days of the chemo Vidaza instead of the standard 7-day treatment regimen he had over the summer, because his bone marrow is still very sensitive to any changes and they are exposing both his diseased marrow and his brothers donated healthy marrow to the toxicity of the chemo. While they hope to kill off his original diseased marrow they don't want to damage or lose any of his new marrow. 

She would actually like to do at least two more rounds (Jan and Feb)of Vidaza chemotherapy to get Todd back into remission enough to proceed with a second stem cell transplant. But this will have to be evaluated week by week and month by month. Many of these decisions will have to be made based on how his chimerism stays. If his brother's donated marrow can hang in there, they can proceed with additional rounds; but, if there would be a drastic change where his original marrow would increase to the point of wiping out his new marrow, then they would likely have to stop the Vidaza and start some type of stronger chemotherapy, like what he had to wipe out the marrow before his transplant. 

Right now, his chimerism consists of: His own original marrow 60% and his brother's donated marrow at 40%.  There is still a hope that the Vidaza can target the diseased original marrow, causing it to decrease, and allowing Tom's donated marrow to flourish.   She said the likelihood of Todd developing any Graft versus Host Disease at this point is minimal and not likely.  So, he won't be able to utilize the Graft versus Leukemia Effect to wipe out his old marrow, which is what has made the first transplant unsuccessful.  

We talked about the possibility of using a different donor this time instead of his brother Tom again.  I asked if there was a possibility that their HLA Match was "too good," not allowing any Graft versus Host, but she said it is complicated to bring in another bone marrow from a third person when he already has two different marrows.  She explained that Todd's marrow is not only sensitive because of all the chemotherapy and the transplant but because they are co-existing. To add a third person's marrow may create a range of other issues including exposures the new donor would bring in.  So, that option is not ideal right now.  

She is still waiting to see what would work best when harvesting Tom's peripheral blood stem cells.  There are two main options.  The first would be to give him Neupogen injections prior to harvesting, which would produce a larger number of cells, but they would be newer, immature cells that may not be as effective depending on the situation.  Or, the second, to harvest the stem cells without Neupogen, because then they would be able to obtain more mature cells.  Either way, it looks like we are at the mercy of Todd's brother Tom to donate blood stem cells.  This is much less invasive than donating bone marrow.  He would only need to do a pre-blood screening prior to donating and it only takes several hours to sit and filter his blood for the cells.  

As to whether the second stem cell transplant can be done outpatient or inpatient is yet to be determined.  Too many factors to consider now.  This is another decision that needs to be made closer to the transplant.  

As for going back to the Cleveland Clinic for treatment appointments and transfusions, we no longer need to do that.  Todd is going to start going to his local oncologist here in Dayton to have blood work drawn every Monday.  If he needs transfusions, it will be arranged here in Dayton at Miami Valley Hospital again.  So, this is good news for us.  We will only need to go back every few weeks to have blood work drawn for special studies and to meet with his doctor.  

So, the next appointment in Cleveland, will be on Wednesday, January 21, 2015.  Hopefully, he will have his next appointment here at the local oncologist on Monday, January 5, 2015. (It's been hard to get things scheduled with the holidays and reduced staff).  Then he will start his out-patient chemo here the following week, Monday, January 12.

I feel pretty good about this game plan.  I did ask about any clinical trials that he would be ideal for, instead of doing the second stem cell transplant, just to make sure we were looking at every option.  She said she could look at that route, or the option that Todd could just stay on the Vidaza month-to-month until he stopped responding to it.  Then, they would have to try another medication, like Revlimid, which has showed some success with patients who have just a 5q chromosomal abnormality, but this wouldn't be guaranteed to work, since Revlimid works better on patients who have only had this deletion in the past and not the complex multiple deletions Todd has had in the past.  She said we would lean towards these options if Todd was older and in poorer overall health, but, since he is young and in good health right now, she feels the more aggressive treatment of the second stem cell transplant is a better course of treatment for him.  Todd does face the risk of getting a bad case of Graft versus Host Disease, which she said he doesn't want, so it will take some serious finessing to get the chemotherapy and immunosuppressant use, both prior and post-stem cell transplant as fine tuned for him as possible. 

In addition, she reassured us that she alone would  not be making all the treatment decisions, but that she would be relying on her colleagues in their weekly meetings to give her their perspective and experiences in planning a course of action.  It is nice to see that she doesn't have a "God complex" and that she is humble enough to listen to the opinions of her colleagues.  

I still might look at other options or see what clinical trials are available on my own.  However, I can't help get past the stigma in my own mind that clinical trials are for lost causes.  

Looking back, I wish we had made the decision to have the transplant prior to him developing the complex chromosomal abnormalities.  This was a hard decision to make then without having the hindsight we have now.  His blast counts were staying under 10%, no where near the Acute Myeloid Leukemia level (20%) and he went from two years of having no abnormal cytogenetics to having multiple complex chromosomal abnormalities 3 months later.  I think the "wait-and-see approach" was alright for awhile, but once his numbers starting climbing, we shouldn't have risked the chance of him developing chromosomal abnormalities.  It was this development that convinced me to push him for the transplant, knowing that it can alter a patient's prognosis.  I personally believe that these abnormalities are complicating treatment now and have contributed to the unsuccessful bone marrow transplant.  But, this is just my "hunch" and I don't have empirical, definite evidence to prove that.

Looking back, however, while it might help or influence someone else's future treatment decision (that is the only reason I include my opinion here), doesn't help us at all.  We must look forward, remain positive, and trust God with the future.  I'm learning from the book that I am reading, that the only thing that separates a Christian from a non-Christian in situations like this, is in how we respond.  Christians have no extra protection from cancer from non-Christians.  If it is God's will to allow cancer, then he must have a purpose in the process and/or outcome.  Maintaining our joy and trust in his divine purpose through this crisis can bring us comfort and provide hope to others. 

In closing, I read something recently that said when a loved one has cancer and is going through treatment, it is important to view your current state of uncertainty as the new normal.  This is going to be my outlook in the new year. God Bless!