18 months past SCT and doing fairly well. The saga of my transplant, start to now
Since there are people constantly coming and going I thought it might be a good idea to post my transplant experience from start to now at 18 months. Keep in mind that this is a risky procedure and this is a summary of my treatment. It seems there are as many treatment modalities as there are patients. Most transplants have some bumps in the road. Mine were probably a little worse than normal.
Feb 2014 Routine CBC blood test by PCP showed slightly low red, white, and platelet counts. PCP refereed me to a hematologist. I was somewhat worried when his office said Cancer Center. Hematologist did some more testing and said I had a very mild case of MDS (bone marrow cancer) that probably would never need treatment.
May 2014 Return visit to oncologist resulted in more tests including a bone marrow biopsy. BMB showed 14% blasts (cancer cells). The diagnosis was now MDSRAEB2. Without treatment the 50% survival time for this is 5 months. I was only 73, much too early to have this fell me. The only cure is a transplant. All three of my sisters were 10/10 HLA matches. All three of my brothers were 0/10 matches. We picked my baby sister (68). Blasts were another problem. For a transplant my doctors wanted blasts below 5%. They found a clinical trial for a drug (AG-221) that works for people who have a IDH2 gene mutation, which I had. I was enrolled as lucky 13th patient in the world to receive this drug.
A side note on clinical trials. Clinical trials is how breakthroughs in drug treatment and new drugs occur. About 5% of eligible patients will participate, slowing research progress. During my treatment I was enrolled in 6 different trials.
June 2014 In a month on AG-221 my blasts went from 14% to 2%, but the blood counts did not improve. I was advised that this drug was probably not a durable cure for me and wanted a transplant ASAP. I asked what were we waiting for. I underwent reduced intensity chemo and total body irradiation. No side effects from either.
July 1 2014 Happy rebirthday to me. My sister donated the stem cells and that were immediately transplanted. Due to drugs they gave me I slept through the whole process.
July – Sept 2014 We were required to be within 15 minutes of the hospital for these three months. For the first month I was monitored every day including weekends. This tapered off to 3 times a week and then twice a week. We were fortunate to be a guest of Brent’s Place. The provide 16 apartments at no charge in their building for people undergoing blood cancer treatment. Most of the apartments are for kids, but they have two for old codgers. They are very conscious about cleanliness due to high infection rate among those who have suppressed immune systems. They also provide entertainment and many meals. One evening I had dinner delivered to our room by Miss Colorado. They also provided premium seats to the Rockies and Bronco games, to museums, etc. I regained much of my strength and was doing 5 mile daily walks. I was yearning to be able to sleep in my own bed again.
Oct – Nov 2014 I did get to spend two nights back home and started running a fever. I went to the ER and in 5 minutes I was in a hospital bed. It turned out that I had CMV, c.diff, and graft vs host (GVHD) grade 4 which completely destroyed my gut lining. I was unable to eat anything for 2 months. I lost 40 pounds. In the first 6 weeks they were making no progress. Survival rate for this condition is less than 20%. I felt like I was in prison. I was not allowed to even leave my bed unescorted. They packed me in an ambulance and drove me to another hospital. An ambulance is not a comfortable mode of transportation. Fortunately the ride was only one hour. In two weeks they worked out a game plan that allowed progress. They put me on TPM (IV feed) and the weight stabilized. End of Nov I was discharged and sent home with home TPM for another two months. TPM does not make a good Christmas diner.
Dec 2014 – Jun 2015 After the hospital stay I was mostly cured of my ailments but extremely weak. The home physical therapist was very proud when I was able to walk a block. In Jan. I was weaned gradually off the TPM and started some solid food. Recovery went slowly but surely and I was back to walking 3 miles a day and feeling much better. In May and June they started tapering me off my transplant drugs.
July 2015 My first rebirthday was July 1. The doctors thought I was doing so well that I should stop taking my small doses of transplant meds. 3 days later I broke out in a spectacular example of GVHD. I had a rash from the soles of my feet to the top of my scalp that felt like someone was sticking pins into the poison ivy like rash that I had. The GVHD also effected my eyes and mouth. Back onto transplant drugs. No change. Increase prednisone which topped out at 120 mg. a day. Some pretty nasty side effects from that dose.
Nov 2015 Pred is now down to 7.5 mg. a day. My oncologist says that I have a very strong transplant and that my chances of relapse of MDS or getting AML is less than 20%. He said that I will probably be on some immo suppressant drugs indefinitely so I will have a very low risk of GVHD. When I stopped the drugs on July 1 my pred was 5 mg. once every 3 days. The doctors thought that at such a low dose would allow for stopping the drugs. Now they agree they tapered too fast and will go slower this time. Overall the oncologist thinks I am in very good shape and even more so when you consider what I have been through.
Fortunately I have Medicare with the plan F supplement so medical charges have been zero. Medicare shows this treatment resulted in 523 Medicare charges totaling about $1.5 million. The VA is providing me all my drug needs at no charge. It seems like I get a package from them almost every other day. If I knew then what I know now would I still opt for a transplant? Silly question, of course I would. Would I have survived without my trusty care giver. I don’t think so.
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