First, the good news. I was able to work with someone at the local oncologist's office and Cancer Center to get Todd's weekly appointments and transfusions streamlined. I was so grateful to get in touch with the right person to figure out all these problems. For now on, Todd will have a set nurse's appointment every Monday morning at the Kettering Cancer Center to have his blood drawn properly through his Hickman Catheter. No more waiting for a nurse! He can get preliminary counts back there in about 10-15 minutes. If he needs any transfusions based on his results, they will make an appointment with Miami Valley Hospital's Main Campus to have the transfusion done there that day if the appointment is early enough. We learned that sending him in later in the afternoon for a transfusion would cause the hospital to keep him overnight for observation, so that is why they have been sending him the next mornings after the type and screen. So, there will be a wait time on the type and screen, but that is normal and unavoidable. At least everything will be done in one location after the initial blood work.
Todd went in for his nurse's appointment for blood work, yesterday, Monday, January 26, 2015. Preliminary results were discouraging. He was near transfusion thresholds once again: Hemoglobin at 8.0 with anything lower than that requiring transfusion; white counts .7 or 700; and platelets at 16,000 with platelet transfusion required below 10,000.Todd did NOT receive any transfusions that day, but may be required to return by the end of the week for a repeat CBC and prescription for any necessary transfusions if he starts exhibited symptoms of lower counts (dizziness, shortness of breath, confusion, headache, severe fatigue, etc.).
We were both a bit discouraged by the low counts so soon after his transfusion on Wednesday of last week at the Cleveland Clinic. He felt pretty good over the weekend and was able to go with the family on a college visit for Hannah, our second daughter, who graduates this year. Many may be negative about the expense and stress this may have put on Todd's health, but I can't tell you how important it is to him to try to live a normal life and to share these special experiences with our daughters when he is able to. He wants to make all those memories with them! We all want to live every day to the fullest don't we?
I follow and "Like" several MDS forums on Facebook to keep up with the latest news and research in the field. (https://www.facebook.com/aamds?ref=br_tf)Yesterday, I saw that the Aplastic Anemia and MDS International Foundation had posted a story on my news feed about a new clinical phase 1 trial being conducted with a new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center. http://www.mskcc.org/cancer-care/trial/13-154 After reading this, I decided to call his BMT doctor at the Cleveland Clinic to touch base with her about Todd's low numbers and see if he would be a good candidate for this trial.
We discussed his low counts first. She assured me that his low counts or cytopenias, are not uncommon with MDS patients who are receiving Vidaza. While he experienced some low counts and seemed to bounce back quickly the first rounds of Vidaza last year, she reminded me of his sensitive bone marrow post-transplant. She said that with the chemotherapy, unfortunately they are killing good cells along with the bad. Todd was just fortunate not to need transfusions prior to the transplant, unlike most MDS patients who have to. I asked her if she was concerned about doing the next round of Vidaza if his counts remained so low. She said she wasn't going to give me a definitive answer, because so many other variables need to be considered before then, but in general they will continue treatment as long as a patient's ANCs are over 500.
His BMT doctor and nurse had just received the backlogged stack of CBC results from the Kettering Center/local oncologist, so she had not had a chance to review them yet. Without seeing them, she said they typically like to push through the low numbers because the treatment is still working to kill the disease and this chemotherapy or hypometholating agent like Vidaza is much less toxic than any other alternative.
After I got off the phone I resumed watching videos via the Facebook link and found an interview video by Dr. Louis Silverman and Erin Demakos, RN, that confirmed everything that she was saying. Dr. Silverman asserted that according to studies, MDS patients need to push through the low numbers (known as cytopenia(s)) which are side effects of the Azacitidine (Vidaza) for the first few rounds, to be able to get the results that the 4-6 cycles can produce. Patients who stop after two or so cycles because of the cytopenias, are not getting the full benefits of the hypometholating agent, yet they suffered the majority of the side-effects with only the two cycles.
What's even more amazing (I had heard this, but had forgotten it), he said that studies show that the low counts in themselves do no real harm in producing subsequent infections. INSTEAD, it is the underlying disease that causes the health issues and infections. After subsequent treatments, patients start to see the positive "bounce" or "rebound" that, in the long run, helps them to get better. Here is the link to the short video: http://www.oncology.tv/OncologyTVNetwork/TabId/1455/VideoId/940/Erin-Demakos-RN-And-Dr-Louis-Silverman-Discuss-Incidence-And-Treatment-Of-Myelodysplastic-Syndrome-In-The-US.aspx
In closing, his BMT doctor said she would review the phase 1 trial being done by Dr. Stein. She stated that Cleveland may have been considering doing a similar trial with a similar drug (an IDH-1 Inhibitor) from the same company. She did say though that most of the patients in these phase 1 trials are patients with no other options, unlike Todd. And, that often patients who have already had a bone marrow transplant are often excluded.
If you are someone you know is suffering from MDS or another type of Anemia or Blood Cancer, they may want to check out this Oncology TV website that offers various interview videos reviewing current trials and study results. Dr. Gerds, who was the attending BMT doctor making rounds while Todd was in the hospital, also has a short clip on there about a study he did about patient/doctor communication.http://www.oncology.tv/Home.aspx Then, go to new videos from ASH 2014.
This has been a long, technical blog, so I will wrap it up for now! Sometimes all this information can make your brain hurt!
Other Organization's Facebook Pages to follow:
https://www.facebook.com/pages/MDS-Foundation-Inc/154245875037
(https://www.facebook.com/aamds?ref=br_tf)
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