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
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