Blood counts dropping/Hospital/transfusions

Everyone….in all honesty, my one big goal really….right now…..is to dial back the crying. I am by nature a very emotional person . It is who I am. I remember years ago, when in a dispute with the head of the large manufactuing company for whom I worked……I defiantly sat there across from this big whig….and told him, “I may be crying, but damn’t, I’ll fight.” That’s the place I’m trying to get to right now. I can say that today is better than yesterday. There is “less” crying and more digging in and discussing with hubby to make some plans. I will soon start researching this MDS thing more than I already have, so that when I go back to Mayo on Dec 6th (Tuesday) I might be better armed to discuss this at the Transplant Team consult.

Basically, the hematologist sounds like he expects the team to say no to any transplant for me due to having CC ….esp with two recurrences within the last year. But, the alternative is that I die….plain and simple. Since we at least are going to have the consult, the answer isn’t no yet. And…it may be that I do not survive to get the transplant. It is better to be in healthier condition for the transplant.

I want to make it clear to anyone here who is wondering about the chemo I used. It was Gem/Cis. Although one doctor (an oncologist) has told me that it is not on the list to cause MDS…..here I am living proof. The current hematogist expert has said it was the chemo. Something else I read said that various cancer treatments including for gastrointestinal cancers are not often the cause. So, yeah…..looks like in my case…..the chemo IS the cause. My numbers were fine before the chemo right through the 4th round.

This is sort of a game of “should have”. I went ahead with the other two rounds I was encouraged by oncologists to do…..(though one did tell me that I did not HAVE to do the last two rounds….no proof it would really do anything and all that). However, I felt a lot of pressure to finish the 6 full rounds…..from other oncologist…..and thus I did. That was apparently when the major damage was done. At the time, I told myself that I never wanted to look back in case the cancer returned…and say, “I should have done those last two rounds…maybe it wouldn’t have returned>” But…..now, I am saying, maybe I shouldn’t have…..and then maybe I wouldn’t have this killer MDS to deal with .

All the should haves and shouldn’t haves don’t really matter in hindsight. The fact is, that I am where I am with this…..and I must deal with it head on. I want desperately to hide my head in the sand and pretend it isn’t there, but when my hemoglobin drops again, I will be reminded just how fragile my blood system is right now.

I fought too hard to get to where I am with the ICC…….two years 11 mo and despite two recurrences, I am currently NED….no evidence of disease. That could change in a heart beat……but I’m hoping this continues at least to not be a complication in treatment for the MDS.

Now now……I will be trying to research to figure out just what about having an underlying cancer (that is currently NED) would cause the transplant team to say no.

Julie T.

News today at Mayo was not good. The hematologist informed us that my MDS was aquired through drug therapy (aka chemo) and as such, it is the most aggressive form of this disease, which is actually a form of blood cancer. And….wouldn’t you know, it also has a bad prognosis as well…..doesn’t respond well to the only therapy because the chemo drug actually caused it. The mutation I have…four of them….make my case pretty bad as well and up the anti on the prognosis. I am considered an exremely high risk. It isn’t good. I am going to start on a drug probably next week to try to bring this into remission, but it often takes 6 months to see any positive effects IF it works. Meanwhile, I will be dependent on transfusions for red cells and platelets. My white blood cells are of adequate quantity, but they are mostly immature. This disease is one of bone marrow failure….it is neither making adequate numbers of cells nor are they normal in size or shape …or even in some cases nucleuses. If the drug doesn’t work….or if I achieve remission and it stops working (which is always does), then I would need a bone marrow transplant. However, because of the CC, the doctor today told us that I would probably not be approved for the transplant. I figure that what do I have to lose at that point. I either die then….or try the transplant and die trying….or live by trying. That apparently isn’t how the transplant people see it. And….the most dismal is that the median survival time (including those who do transplants) is 12-24 months. This is just devastating. After everything with the CC that we’ve gone through……just to the point where I felt i was living life again and maybe had a chance to beat the CC……and here we go again. prayers please.