Why the wait for stem cell?

[Terry74]

I apologize in advance if this has been asked somewhere already. My mother died last month due to MDS. She did have AML at the end but got it into remission. She was 67 and at a healthy weight, active, non-smoker or drinker. Her end game was supposed to be a STC, she was in the process of looking for a donor (no siblings). I guess I'm just wondering why the stem cell transplant wasn't an option upon initial diagnosis or after the disease progressed? Is it common to wait until it progressed to AML? Having to knock the AML into remission before the transplant seems like so much more risky than just doing it before the diagnosis of AML. She had MDS for a couple of years before it turned into AML. I have tried Googling it for an answer but can't find anything. I just want to know why they didn't offer the STC sooner? I don't know where else to turn for an answer or opinion on this. Thanks in advance.

[Rarity]

Hi Terry,

I'm so sorry about your mother. MDS has variables and some are put on a "watch & wait" before a transplant. It depends on your mother's type ect. Sometimes if a patient goes to transplant to soon it may not work.
In the beginning of our journey, We had a hard time with the "watch & wait" because you want to do something as soon as possible. But learned that with this disease that is not always best to do. When the disease progressed then it was time for transplant. Doesn't sound logical, I know.
If you look on this sight you will find some excellent info that will give you some insight to understanding more about the disease. With this disease there is a lot of info to take in.

All the best,
Rarity

[Neil Cuadra]

Terry,

I'm sorry for the loss to you and your family. Unlike a few decades ago, many patients in their 60s and even in their late 70s, with otherwise good health, are now good candidates for transplants. But the risk is still high, because average transplant-related mortality for MDS can be somewhere between 15% to 25%. Doctors still look at these types of numbers when recommending for or against a transplant for a particular patient's circumstances.

They compare the transplant risk with the lowest risk of treatment (wait and watch) and with the medium risks of drug treatments, which for MDS have an average overall response rate (meaning some improvement) of over 50%, but a complete remission rate of only about 15%.

If initial searches of the bone marrow registries had not produced an ideal match, that would certainly have argued for delaying a transplant as well. Doctors used to be much less inclined to proceed to transplant when a patient had no matched siblings, but the success rates of unrelated donor transplants, especially with donors on the young side, have become comparable.

It's unfortunate that physicians have to play the odds this way. It helps them save the maximum number of patients, but it's only natural to second-guess these decisions when a patient does not survive, as in this case. Because some MDS patients don't progress to AML, a high-risk treatment can be less than ideal, especially when you factor in quality of life.

The bottom line is that we can't know what would have happened under different circumstances. If your mother's physicians were experienced, and you and she had confidence in them, then I hope you'll conclude that they did the best they could for her, and not be haunted by "what ifs."

[Terry74]

Thank you both for your kind words and great answers, it really helped me. I guess maybe the "what-if" is just my way of coping. I do believe she had great doctors and she was at one of the best cancer hospitals in St. Louis, and her doctors told us they would never give up on her, and they never did. I would never second guess their decisions, I know they did what was best for her throughout the whole process.Her numbers were always so awful and her platelets weren't coming up sufficiently after chemo so she probably wouldn't have survived through a round of maintenance chemo and the stem cell transplant anyway. Thanks again for taking the time to reply. I know it doesn't matter anyway now that's she's gone, I was just genuinely curious.

[Sally C]

Dear Terry,
I am so sorry for your loss. It is a terrible and unpredictable disease.
You obviously loved your Mother very much - and I'm sure she knew this. I hope that will give you comfort and peace in the coming days.
God Bless,
Sally

[Meri T.]

Dear Terry,
My condolences. May your Mother rest in peace.

When I was diagnosed with MDS, my doctor said we could watch and wait for a year, maybe two, then we would talk about an STC. However, in the following months, my neuts dropped, and worse of all, my platelets dived. I had platelet transfusions every 10 days.

That was when we went for my SCT, only 9 months after diagnosed.

I think your Mother's doctors did their best. In this disease, every person is different. I hope you can understand this, Please take care.

Meri

[Terry74]

Thank you Sally, for your nice words. And you too, Meri. I hope you are doing well with your SCT I understand what you mean about watch and wait. I guess if the numbers are stable, there is no need for SCT right away. My mom had soo many platelet transfusions that she became refractory at the end (I think that's the right word). It all happened so suddenly- after a few months of low but not critical blood counts- that I guess I'm just searching for answers in my grief. I appreciate all the support on this board, it's very comforting.

[Bossywife]

My husband has been on "watch and wait" since 2012. He has a brother who is a 10/10 match for bone marrow transplant but they don't want to do it "until he gets sick".

This makes no sense to me, its like he's driving around on bald tires and no one wants to do anything until he has a blowout.

So, instead of doing a BMT on a healthy person, they want to wait until he's sick.

Makes no sense to us either, although maybe it's because there are other very sick people in queue for them.

[GoodDay5150]

Hi Terry, we are all very sorry for your loss. I have many posts here concerning my disease, diagnosis, treatments, transplant, etc. You can just search my user name. I have met 4-5 different dr's at seminar/ meetings for PNH patients, and they have all disagreed w/ my dr's and their decision to transplant me. Too risky, I did not have AA in addition to PNH, etc etc. All situations are different, and there was not much input from me regarding what I thought. I know that the dr's at the clinic I go to confer w/ others specialists elsewhere, but I was not a witness to any discussions between them. I also know that I was symptomatic for a long period of time before diagnosis and that my age at the time was a factor, bcse any type of recovery is usually easier for younger patients. I have been told that transplants and the pre treatment conditioning can cause more difficulties in older patients and that is obviously a factor in their decision making.
Obviously this makes no difference in the unfortunate outcome of some patients w/ bone marrow failure diseases, so I consider myself very fortunate.


Mario

[Terry74]

Thank you Mario and Bossywife, for your answers. I 'm grateful for all the answers and detailed explanations on here, I just wish I would have found this site during my mother's own battle with MDS. I had a lot of questions and information to gather during her long fight, for my own knowledge and peace of mind at least. I guess it just always bothered me in the back of my mind as to why wait until after chemo? When it was an uphill battle the whole time to try and get the platelets, whites and reds back to a decent level just to do ANOTHER round of maintenance chemo, then the stem cell transplant. It just seemed like the odds weren't good of making it through all of this. I do realize it is just the "what-if" part of grieving, trying to find some justification for the way it all ended so abruptly. Her doctors told her initially that if everything went according to plan, she could get another 10 years or so. In the end, it was not my mother's doctors or the hospital or the medicines that failed her, it was her own body, and I need to come to terms with that. Thanks again for letting me vent.