Sharing my life and love of cross stitch. Thoughts about this and that.

Sunday, June 18, 2017

MD Anderson & Clinical Trial; Meet Up with 123er

Just returned from an appt at MD Anderson (top-rated cancer hospital) with one of the top 2 MDS doctors and researchers in the US. My sister was available at the last minute and drove her new car, for which I am very appreciative and very grateful. I went for a first visit to meet Dr. Garcia-Manero, get a 3rd perspective and discuss possible clinical trials. Absent a Stem Cell Transplant, Myleodysplastic Syndrome is not curable and a certain percentage of patients sooner or later develop Acute Myloid Leukemia. None-the-less I was disappointed. The trial he wants me to participate in is actually one of his, a Quality of Life issue to determine if a smaller dosage of the only 3 standard drugs (for the past 15 years there's not been a new one!) is just as effective as the more toxic higher dosages. The purpose being to help a patient become transfusion free.  It's a randomized study, they put your name into a computer and the computer assigns you which 1 of 3 options. One of the drugs, Decitibine, has more negative side effects (I'd already discussed these with my local doc and he's against it entirely) but both it and Vidaza lower your current counts for several months before you even see any difference. That scares me since at present it's only my red cells that are affected by the bone marrow cancer. My immunity would be compromised to a greater or lesser extent, for example, ALONG WITH my red blood cell counts which are low to start with. I would need to travel to Houston (this time it took us between 5-1/2 and 6 horus to drive) every 3 months for at least a year and incur the costs of lodging and perhaps car rental (my car is 17 years old) to get there on my own dime. I need more information, discussion, ask a LOT more questions, etc. I need to discuss this with both my local hematologist/oncologist and my Hem./Onc MDS specialist in Dallas before I decide anything. The truth is that I'm going to end up on one of them (at a higher dosage and therefore more toxic) in probably short order already, but my doc wanted to wait until something in my current counts changed significantly. Apparently the clinical trial would start as soon as I'm ready for it to. I DO NOT WANT TO GO ON CHEMO! I was already debating whether I would do it despite the ramifications of not doing so.

This trip I the had company of my sister. I expect anything in the future will be me, myself and I for as long as I can or by public transportation, which has it's own drawbacks and $$$. Oh, and I'd need to get yet another somewhat but thankfully short-lived painful Bone Marrow Biopsy every time I'm there. NOT PLEASANT!!! I had one Friday. I can't even take a bath until tomorrow, so church was a no go this morning. It'll be sore for a while. Not painful unless I push up against or bump that hip. At present I've got a big pressure bandage over the site on top of an illiac crest. At least this one wasn't as painful as the first 2.

And because my immunity will be compromised by the chemo, I'll need to move and sell my house.. I've known that since September. I don't want to move, but I REALLY REALLY need to. It's just so hard to contemplate because I've lived here for almost 33 years. I won't have any help doing so. Can't afford the considerable necessary repairs and I'll need the $$ to live on.

But the BEST part of my trip is that I got to meet up with Simcha, a cross-stitcher who also posts on the 123 Message Board!! She's an intelligent, fascinating woman and it was an absolute delight to meet her. If I go back to Houston, I hope to meet up again! Would you believe that we talked non-stop for 1-1/2 hours and only a couple of those were about cross-stitch and that was telling each other which fellow 123ers we'd been able to meet in the past. Best possible way to finish out an otherwise very rushed, very overwhelming day!

After I confirmed it was a one-day only appt (usually they are 3 to 5 days!) I reluctantly left Oscar home alone. I'd intended to take him to the vet because he's not been acting Oscar-like lately. He ate and drank very little and has been very very clingy since I returned.  I'd have boarded him but his shots weren't up to date. I'd had to leave the cats home alone when I was in the hospital for 8 days last fall and with Henna having crossed the bridge recently, I'm sure he felt abandoned. Poor "little" guy.

I don't know that anyone is interested in this stuff. Definitely venting to some extent. I'll probably delete this post in a few days.

5 comments:

Kate said...

Linda, it's good for you to vent - sometimes just writing out this stuff is cathartic. My heart aches for you - be strong and keep on keeping on. Hugs.

Robin in Virginia said...

You are in my thoughts and prayers, Linda. Being able to vent is a good thing. Gentle hugs to you!

LindaMc said...

Thank you Kate and Robin for your thoughts, prayers and well wishes. I very much appreciate them. - LindaMc

Merlin Maarit said...


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Faith... said...

I am so sorry you are having to go through all this. I hope your sister is able to accompany you more in the future. I found that when someone goes with you it is less stressful. Please continue to vent; it is good for you to get it all out. Good luck with selling your home and finding somewhere new to live. That is going to be a big job!
My thoughts are with you.