Topic: Chemo caused MDS: Update
It's been a while since I have posted following being diagnosed with MDS (Myleodysplatic Syndrome) last fall. MDS was caused by the chemo, Gem/Cis, I did after my 2014 resection apparently damaging my bone marrow. MDS is basically a cancer of the bone marrow that causes bone marrow failure. Blood counts drop precipitiously as mine did, very, very fast.
After a bone marrow biopsy late in 2016, they found that I had four gene mutations in my bone marrow, which isn't good. The more mutations, the worse the prognosis. I was given the diagnosis of high risk MDS, which means that I am at high risk of the MDS progressing to AML (Acute Myeloid Leukemia) with a median survival time of 6-24 months. That was a total shock.
The only treatment available to me was one of two drugs, which are basically the same thing, so if one doesn't work, the other probably won't either. The only cure is a bone marrow transplant, but due to the underlying intrahepatic bile duct cancer (currently no evidence of disease) I don't qualify for and don't qualify for any clinical trials either for the same reason.
So, in December, the week of Christmas, I started getting infusions of the drug, VIDAZA, with a 50% chance of it working well enough, or at all, to get a partial or hopefully full remission. It can often take 6 months of the drug before it starts working, if it does.
My blood counts by January were getting scary. Platelets went down to 11K and hemoglobin was hovering around 6.2-6.8 until they'd give me a a red cell transfusion. (I had issues with my local oncologist about the timing of the transfusions and eventually had to fire her and change to another oncologist in another group in town). My white blood cells were remarkable in the middle of normal range, BUT, I was reminded often that the bone marrow biopsy had shown that at least half of them were abnormally shaped and thus probably not functioning well. Eventually, even the white cells dropped from mid 5-6 down to 1.6. A week later they came back up to 4.19, so they may be stabilizing and improving. Hemoglobin is now 11.4, with the last transfusion being almost 4 weeks ago. I was given a procrit shot to help the bone marrow make red blood cells 4 weeks ago but did not require another one two weeks later and may not need one next Monday either when I go for the next infusion week. Platelets....oh those lovely platelets. At the end of January, there was suddenly a sign (to me anyway) that they were slightly increasing again and by Jan 27th, they were at 25K. They dropped back again to 17k....but a week later.....BOOM.....they skyrocketed to 161K. The doctor even requested that the lab rerun the test immediately....with results coming back as the same.. Everyone was all smiles!
This week, the platelets were 209K.....solidly into the normal range. My doctor, who I am really liking, said that I looked like a totally different person than when he first met me in January. I FEEL like a totally different person.
The VIDAZA is not a cure.....at best it can only give a full remission, which will eventually end. At that point, I will have limited treatment choices. Chemo will not work because chemo is what caused this mess. My possible options right now at that point would be to do a DNA analysis of my bone marrow to check for mutations and then see if there is a drug we could use off label (out of pocket costs). Right now, it "appears" that the VIDAZA may be working for me.....at least the local onc said yes to that question. It can all change in a heartbeat and stop working again. But, for now, I feel the best I've felt in about 6 months and am taking advantage of that to do more things. I've felt so physically and emotionally down for so long though, that everything is an effort and takes a toll. I cooked dinner by myself yesterday (for 7 people) and today, I slept 5 and a half hours during the day after a full night's sleep. But, I have energy that I haven't had in months and am enjoying life as much as possible.....esp time with the little grandsons.
So, that's where I am. The bile duct cancer may come back again and if it does, it's going to really complicate things because I can't do most chemo, so will pray that if it does return it is still in the liver and operable again. So far....NED. Need to keep it that way and hope the MDS remission is real and lasts a long time and I exceed their expectations.
MDS is another rare disease/cancer and affects small children to oldsters. There are a smaller number who get this already rare disease from cancer treatments (chemo and radiation).