CELEBRATING 25 YEAR WEDDING ANNIVERSARY AND GETTING TO NEW YORK

Today is our 25th Wedding Anniversary
September 21, 1991- 2016

PERSONAL NOTE:

It was a whirlwind courtship, but today we celebrate 25 years of a life together that has brought us many blessings and challenges. I would like to wish we could have another 25 years together, but none of us are guaranteed a tomorrow. No woman could ask for a better husband than Todd. He worked hard and has always devoted his life to God and his family. Cherishing every day and praying we have many more years together. So thankful our marriage was blessed with the greatest 3 kids we could ever hope for.

GETTING TO NEW YORK FOR TREATMENT:

Trying to get Todd to New York on a budget is proving challenging.  I’ve done it once before, and I’m going to have to do it often if he gets accepted in the trial for AG881 at Memorial Sloan Kettering (MSK). 

At first, the receptionist for Dr. Stein at MSK told me that Todd would have to come in two separate dates: one for the consult and another for the screening and by the way, Dr. Stein was only in on Mondays and Thursdays.  I told her that we had seen the doctor before in a similar situation when he was getting screened for AG221, and that we were able to have back to back appointments, one day for the consult and the next day for the screening so that we could do it all in one trip.  I explained that we were coming from Ohio and why should we have to come on two separate occasions and have to schedule 4 flights instead of 2!    This was Thursday, September 15, 2016 when she called to schedule Todd’s first appointment set for Monday, September 26, 2016.  I called back the next day and tried to convince them to let us have too appointment dates back to back.  She said she would give the message to someone on Dr. Stein’s team.  I didn’t hear back from anyone that day, nor Monday morning.  So, I called back Monday and reiterated the circumstances and said I never heard from anyone.  She said she would send out another message and have the doctor or someone on his team call me back.  His trial assistant, Emily called back later that afternoon and said of course we only needed to make one trip and that we could do everything in one day!  She said they make this exception for patients who travel long distances!  Hello?  Why didn’t the office person tell me this to begin with? 

There are still a few concerns about being able to keep the Monday morning appointment there.  First, it is at 9:40 a.m.!  That means we would have to get up very early and drive to Cincinnati or Columbus to get on a Corporate Angel Network Flight (CAN), if one is available and can get us there that early with a 45 minute drive into the city!  Corporate Angel Network cannot request a flight until 3 days prior to departure.  We can’t go up the night before because none of the corporations on the network fly on the weekend.  I won’t hear back from CAN until Thursday or Friday at the earliest to see if they are able to secure us a flight.

Second, MSK is waiting to confirm that they can add Todd to the new cohort of the trial which opens on that day, Monday, September 26.  They have been reviewing the current cohort and there can be delays if there are any concerns.  Emily is supposed to call me back and let me the status of this.

COHORT:  A group of persons or animals of the same species with a common characteristic, set of  characteristics, or exposure, who are followed for the incidence of new diseases or events as in a cohort for a prospective study. (Segen’s Medical Dictionary, 2011).

Third, getting lodging once everything is confirmed is also on hold.  I hate to book a hotel room until we get the first two confirmations.  I tried to get the social worker at MSK to work with the Hope Lodge there in New York City to reserve us a room.  However, after hearing back from the social worker today, we were informed that we would need a minimum stay of 3 days of “treatment” before we would meet the criteria for staying.  Since we only need one night this time, it’s a no go.  I did tell her that we may need to stay 3 days later, once the trial starts, but it won’t be often. 

From what I gleamed from Emily, Todd would have to start the trial with a Day -3 scenario, like he did with the AG221 trial.  This is the part where they experiment taking the medication with or without food and then do hourly blood draws for 10 hours.  I remember these days from the last trial with dread!  Talk about a long day, especially for Todd, in his current condition of severe fatigue.  After the first week, we would have to return weekly for the first month.  After the first month, appointments every two weeks for the first 4 months.  Then, just monthly appointments!  This is a much easier schedule than with the AG221 study at Cleveland where Todd had appointments for every two weeks for the first year!  That was crazy; but, you do whatever it takes!  Todd was doing so well on the drug, we hated to complain!

None of this preparation can happen fast enough. Todd continues to struggle with fatigue and lack of appetite.  The local oncologist wanted Todd to start coming in the day before transfusions to get the CBC and type and screen. This is supposed to give the blood bank a day to obtain and prepare the blood products ahead of time.  Plus, they have never liked the idea of making Todd wait for hours for the blood to get to Soin from the blood bank. 

Dr. Hamilton, in Cleveland, did not want Todd to wait 7 days to get a CBC because his hemoglobin was so low the last time they waited a week.  Arrangements were made for him to go in late Monday morning, September 19, to get the CBC and type and screen done and to have blood drawn for a special myelo-mutation panel that would identify all genetic mutations, not just the IDH-1 or IDH-2.  Dr. Hamilton wants to use this as a tool for finding any other studies that Todd would be eligible for, based on the mutations he has.

The results of the CBC were disappointing.  Less than 5 days from his last platelet and blood transfusions, his counts were so low that he needed another 2 units of blood and 1 unit platelets again!  His hemoglobin was at 7.5; platelets at 12,000; Whites at 1.1; and ANCS at 0.6.  They ordered his blood products for the transfusions set up for this morning, Tuesday, September 20, 2016 at 7:30 a.m.!  This is very early for Todd.  It took the nurses a good hour and half to get him situated in his Universal Care Room and have the blood brought in.  He didn’t have to be there until 6 or 7 pm today, but he was still there until 2:10 p.m.  It still took him about 7 hours to get the transfusions.  I’m not sure if it was really any better for him to come in two days, but I guess it was better for the hospital and staff and maybe the blood bank, I don’t know.

I think we have decided to put our house back on the market again.  A realtor came to the house and we will be in repair and clean-out mode now for some time.  Apparently, the inventory for houses in our area is low, but the turnaround time from listing to selling is averaging almost 300 days according to her graph report. I can’t imagine keeping everything “show-ready” for up to 10 months!  The whole prospect feels every inch of me with apprehension, but I’m doing it for Todd’s peace of mind.  Less stress in keeping up our big house and its expenses.  He worries about the future and my ability to keep everything up on my own.  Goodwill, Beavercreek Bargains, Plato’s Closet, here we come!  I know it needs done; I just don’t have the mental or physical energy and the heart to do what it takes.  I can’t give in to sentiment.  Even more depressing is finding somewhere to move that isn’t a major wreck.  God Help Us!  I mean that sincerely and earnestly. 

NEW DEVELOPMENTS:

This news is crazy, so hang on.  I received a call late yesterday from Emily, Dr. Stein’s trial assistant at MSK.  The meeting that the trial study team was supposed to have with the drug company on Monday, September 19, was unexpectedly postponed for a week with no explanation.  It just wasn’t the meeting at MKS that was postponed, but the meetings at the other four U.S. trial study locations too. 

The meeting was supposed to cover the results of the first cohort of the Phase I trial of AG881, which was a dose expansion phase, defined as “A progressive increase in the strength of any treatment (e.g. a drug or radiation dose), to improve its tolerability to maximize it effect.”  (Free Dictionary 2009).

This is when they give different patients different amounts of the drug: 50 mg, 100 mg, 200 mg, 400 mg, and 600 mg until the maximum tolerated dose is established.

MAXIMUM TOLERATED DOSE:The highest drug dose that can be given without causing adverse side effects in most recipients.  (Segan’s Medical Dictionary, 2011).

The second cohort of a Phase I, is usually a patient expansion.  We are hoping to get Todd a slot in this part of the trial.  Now everything is on HOLD!  The appointment for Monday, September 26, 2016 with Dr. Stein has been cancelled too.  We are hoping to go instead on Thursday, September 29, 2016, IF the news and instructions from the drug company from the rescheduled meeting that Monday allows new enrollees. 

I guess speculating doesn’t do much good, but I can't help it. This could be good news or bad news.  They could have reached the maximum tolerated dose and have decided to go on to Phase II.  This would be good news since Todd would not have to be exposed to dangerously high dosages, but it could take weeks or maybe months to get the new Phase up and running.  The worst case scenario would be that the drug didn’t work at any dose for the initial set of patients, but this would be highly unusual.  The best news would be that they just needed to reschedule the meetings for a week and the drug company will call the Trial Centers/Hospitals and let them start pre-screening for an additional number of new patients for the next cohort or Phase. 

The problem for Todd is time.  He needs to get on a treatment soon.  The two-week “wash-out” period of being drug-free in preparation of starting a trial will end tomorrow, Thursday, September 22.  Even though I feel desperate to get him on some kind of treatment, we can’t jeopardize ruining this wash-out period and not being ready when next trial slot opens up. 

So, we wait.  Wait to hear from Dr. Stein's team and continue to get Todd any transfusions whenever he needs them.  Prayers for the situation to be resolved and settled would be appreciated, as well as for protection for Todd against getting an infection or virus.  

References:

cohort. (n.d.) Segen's Medical Dictionary. (2011). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/cohort

dose escalation. (n.d.) Medical Dictionary. (2009). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/dose+escalation

maximum tolerable dose. (n.d.) Segen's Medical Dictionary. (2011). Retrieved September 21 2016 from http://medical-dictionary.thefreedictionary.com/maximum+tolerable+dose

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!