High Risk Myelodysplastic Syndrome: What to Expect?

We're going to start with what the doctor advises: 1 week of the Vidaza, then 3 weeks off, with 2 blood draws per week to monitor how things are going. My partner is prepared, however, to call it quits with the Vidaza if, in her estimation, she continues to go downhill. The way she's feeling right now (in spirit), she wants to get some sort of therapy underway, although she'll not be shy about telling her doctor let's stop this or change this or try something else. We had a phone chat earlier with the doctor's nurse; the nurse is very forthcoming––pulls no punches––which my partner and I both appreciate. ––Ray

That’s great… Moms doctor was very forthcoming with her about what treatment “could” look like… both ends of spectrum…. Mom immediately knew she didn’t want any of it…

The doctor’s only question was if she was being pressured by family opinions either way…. She politely told him… “it’s my decision only” and he didn’t try to sway her whatsoever.

This business of not influencing the patient's decision––I find this moment-by-moment challenging. I don't want to inflence my partner's decision; yet, at the same time, I find myself at a loss as what to say when she turns to me and asks, "What do you think I should do?" I'm torn between not wanting her to feel all alone as she considers her options, but say the right words so she understands she has my support no matter what she decides.

Good morning, rjperk633 (@rjperk633)

Thank you, thank you for all this information! I went over it all with my partner. Your messages have helped her refine many of her remaining questions. She's waiting right now for a call back from her hematologist's nurse. This is a whole new world for her, as you might imagine––as it is for me, too. As she'll not have her first week of chemo until next week, she and I are both trying to get a sense of what will be expected of us (when to be where? for how long? what to expect? etc.).

You mention blasts. She and I are trying to figure out just how much of the question of blasts impacts her particular MDS situation. The word, blasts, has been mentioned in passing, but not with enough explanation for us to be able to place the concept among all the other new names and numbers we're hearing. We've much to learn!

I did take my partner for a blood draw yesterday. Her numbers were low (hardly unexpected). We thought perhaps her doctor would phone when he saw the numbers and urge my partner to get yet another unit of blood, even before she begins her chemo; his nurse did phone, but told us, although the lab numbers might otherwise warrant a blood transfusion, the doctor told us only to watch for any new, alarming symptoms (bleeding); otherwise, continue to contend with the extreme fatigue until chemo begins next Monday.

Again, a MILLION THANKS from both of us for your super helpful messages!
Ray (@ray666)

My husband had 19% blast on his bone marrow biopsy and they said if it would be leukemia 20%. He was 68 yrs old and saw hematologist on a Tuesday and started chemo that Thursday. Said he was one foot shy of leukemia. He is now 2 yrs post bone marrow transplant. We were fortunate enough to be able to get the transplant. It was a touch and go situation since the chemo took its tole on him. A highly active person. But with the help of the physical therapist he was able to work back into having it. With whatever you are able to do please check into having some physical therapy to help you just maintain your strength and perhaps even some mental support. It all works together. Prayers .

I get it… within the last 3 years my father passed away so the concept of facing mortality has been a fairly common topic and Mom isn’t afraid to use real words or hide from things and I am her daughter… very matter of fact….This has been just another conversation for us..

I knew she would not shy away from a decision once she had all the facts. At one point, she asked what I thought she should do. If a cure is not a part of the equation, I doubt I would have any of it. Remember she is 88.

I spoke to a husband whose wife had treatment for MDS for 12 years. It wasn’t all pleasant but she was younger and still had some “firsts” she wanted to experience with her family… Some treatments were experimental, but 12 years… just wow!!! That being said, I don’t know at what stage she was diagnosed nor at what stage…. Just that there were lots of milestones along the way regarding “firsts”.

I think it’s all in the gut… this lady knew she wasn’t ready; Mom says she’s ready for whatever.

Well… here’s a twist for us to shift focus…. Mom fell early this morning and has a broken hip…. Waiting for ortho doc to come before a decision is made and whether she will need platelets before surgery…

Good luck to everyone here on this forum!!!

@ray666 While you may have already made your decision, I'll offer my experience in case it helps. I have high risk Myelofibrosis. I am 67 and have turned down a bone marrow transplant. I'm on Ruxolitinib/Jakavi. When my blasts got too high they recommended Azacitidine/Vidaza. I understood that the chemo was not curative but I thought I'd give it a try. It was injections into my abdomen for five days and then three weeks off. Initially they gave me three injections per day and the I convinced them to do two. I stopped after three months/cycles. I was sore at the injection site, the remedy for the soreness was an oil that was messy to prepare, messy to apply, and not very effective. I also had constipation and was wiped out physically. I was feeling rotten during and for one week after. Given that half my time was feeling bad I decided to stop. They say Vidaza is "well accepted" and given to people who either don't want or can't handle more aggressive chemo. I didn't see much change in my blasts but they are so variable that it was difficult to determine whether the drug was having an effect in slowing down the disease. It has now been around 6 months since I stopped and I don't regret the decision either to try it or to stop. The disease and its progression has its challenges but for me the treatment was worse. If you still have to make the decision, I'd try the chemo and see how your wife reacts to it.