Blood counts dropping/Hospital/transfusions

Marilyn, that just sucks that the treatmennt for another cancer probably caused your husband’s CC. I just feel like this is something that we patients (and caregivers who are helping make decisions,) should be made aware of…..esp when the chemo is given after a potentially curative treatment. I would have had a longer and deeper discussion about this if I’d known MDS existed with such a devastating prognosis. (Who figured another rare cancer). If there had not be the opportunity for surgery, then chemo would have been pretty much the only choice. But….that wasn’t the case here. We could have done the four rounds and stopped…..but I was pushed to do more even though there were obvious signs of problems….and I asked about them. I know….what’s done is done…but right now, I don’t want anyone else to make this kind of decision about adjuvant chemo without having ALL the info. I was told that IF something happened in my blood, it wouldn’t be for 20+ years. I figured that at that point, I could deal with it…a long life and all that. It sort of feels like bait and switch. I know……many people do gem/cis and never have this happen…..but I feel it’s something patients should be made aware of…..esp when there is almost nothing to do for it. At any time….there are things the doctors just don’t know…..such as the effects of the gen radiation your husband got……but when they do know and it’s rare, so they don’t mention it, then patients can’t make a full decision. I know if I’d have known, I would have taken my chances with the 4 rounds instead of 6 rounds. I did have recurrences…two so far, even with the 6, but my local oncologist said that there was no proof that 6 rounds was magical. Obviously it wasn’t. Sigh. …..and now this.

Something that really bugs me….is that this MDS disease is an indirect result of the CC. The CC caused me to do the Gem/Cis chemo….and the Gem/Cis chemo caused this MDS. It isn’t going to happen to everybody who has taken Gem/Cis, but I was floored to hear that you have a possibility of having it happen up to maybe 20 years post chemo. Why is it that I never heard of this possibility before I took the chemo? I may have decided to only do the 4 rounds instead of 6 (it was the 5th round that everything went haywire with kidney function, blood numbers dropping, needing a transfusion, etc). But instead, I was encouraged by my main oncologist to continue on, though the local oncologist questioned whether I might want to stop). I was told by my oncologist that the chemo “might” give me another cancer of the blood many, many years from now….a chronic type of cancer. But, I don’t remember anything that sounded like this.

Thank you all again for your responses, prayers, thoughts…….it means so much.

Marion…yes…..I know I can opt in or out. This drug isn’t like heavy duty chemo…..very werid stuff…..but can be given as shots under the skin…abdomen, arms, thighs…..similar to an insulin shot. However, it does often cause nasty welts where it is given. I could also get it via IV or a port. The IV would be hard on me as my veins are not very usable or findable (so I’m told by some of the best at inserting them) and after my first experience with a port, I’m not really excited about going that route. However, it wold alleviate the bad skin situation if it happens. There is some thought also that the skin injections might protect the internal organs more as well…..a lot to consider. The main side effects of the drug are fatigue (from dropped hemoglobin mostly) , extreme constipation, and dropped blood counts, the latter requiring a lot of transfusions at the very least…..though they try to avoid as many as possible.

The answer from Mayo today about a bone marrow transplant was, “No.” There were many reasons…..not the least of which, I have to be in remission from this MDS first and that is what this drug, Vidaza, is for. Beyond thata……the underlying CC is a big stumbling block …..and beause of the immune suppressant drugs needed in a bone marrow transplant…..it may cause the CC to become more active and aggressive. The probability of dying during the trasnplant itself would go up to 50-60% and complications due to co-morbidities are also a factor they are looking at.

If the blood cancer does not go into remission, then my options are extremely limited right now. They would try sequencing my DNA in the bone marrow to look for a targeted treatment…about a 5-10% chance of finding something….not to say if it would work. Then, the only other option would be a clinical trial , for which I won’t qualify for most….because of the underlying CC. They said that for most studies, I would have to have no recurrences for 5 years….and far before that…the MDS would have killed me. There are a few phase one studies…or rather, I found one at MD Anderson….for which I would qualify……but I know nothing about it. It wouldn’t be something to do right now…..not without trying the Vidaza first.

I may get a second and third opinion at MDAnderson and Seattle…..both of which are centers of excellence and top hospitals for this cancer. I had already come to that conclusions…and was glad to hear that the Mayo guys said that also. I don’t know how much good it would be right now…..as I’m quite sure (after the research I’ve done) that they would all say to do the Vidaza first. But….after Vidaza……it becomes then more of a question what other places may have to offer and going to those for consults may be necesary.

If I do nothing….probaby 12 months….and if I do the Vidaza….maybe 24 months if it works.

I know right now that my words are probably coming across as controled and calm….but inside, I am very angry……I want to throw and break things. The feeling is so intense that it surprised even me. I’m going to try to get in to see the therapist I saw while I was taking the CC chemo a couple years ago…to see if she can help me deal with this emotionally.

So….here I go again. My head is swirling….hard to gather in the facts….and deal with the emotions. But…..can’t waste time.

Julie