[Amy Clark]

Rose, I just prayed for you and your husband. I am sorry this is such a roller coaster of emotions. I know from your earlier posts that your faith is helping you through this time. I will ask for peace and strength and wisdom to be given to both of you. Thank you for sharing and keeping us updated when you can. I look for your posts and feel grateful to hear how you all are doing. Don’t ever think that no one reads or cares on this forum; many of us are just silent cheerleaders and prayer warriors. Hang in there. Very glad to hear that the prednisone is working for his rash and lbm. We are hoping for the best results possible of the biopsy. Amy

[Amy Clark]

That is wonderful news! I am sure I speak for many when I say that I have been wondering how all of you were faring. So happy that he is trending in an upward direction and praying for more good days ahead.
God bless you, Amy Clark

[Amy Clark]

Thank you for the responses to the questions and comments. I hope others respond too, both good and not so good experiences after transplant. I am starting a new thread called “Articles on Mutations and Transplant Side Effects.” I am so happy to hear from Paul and Ulli. Please keep us posted.
God bless you.

[Amy Clark]

We have been trying to find out the answers to the same questions you are asking and are finding it hard to get real stories about post-transplant life except from those for whom it worked well, but from everything we read those fortunate people are the minority. And the outcome and relapse rates vary greatly among chromosomal and mutational differences within MDS. All of the numbers we find have to do with survival and not much info at all about quality of life except the term, “a new normal.” This is vague because everyone ends up so different. The blood cancer world is very excited that anyone with certain MDS types survives at all, so much so that a lower or same-as-now quality of life and long term side effects are accepted as part of the process for those lucky ones who are cured by a HSCT.

Unfortunately, the new normal after a transplant is often different than what most think it will look like. This is what the patient coordinator at Be the Match told me. She also told me that I was right to be concerned and to find out this quality of life and post-transplant relapse information beforehand, as many people are shocked after a transplant by both. I did find three people who wrote about post-transplant life other than the lucky ones. I can find the lucky ones’ stories pretty much anywhere. Tomorrow when I have more time I will post a link to these.

I read that people who aren’t doing great after transplant don’t talk about post-transplant life because they may feel guilty that they have complaints when they are supposed to feel grateful to be alive or because they have moved on and are consumed with the new normal.

I am not against transplants, I am against a patient making a decision without accurate or fulsome information. My friend’s brother (54 and in good health other than MDS) underwent a transplant at the same place we are at in June 2018 and they did not feel like they understood the seriousness of the situation, in part because transplant is termed the “standard of care” for blood cancers. The possible side effects were rattled off in a 10 minute conversation about post-transplant life and handed to them on a black and white sheet of paper. The people they were told to talk to all had had good outcomes, albeit with some short lived side effects.

When her brother left the hospital after a brief stay of 14, yes 14, days post-transplant, the family thought they were home free. Everyone at the transplant center was super excited for them. Then at 56 days he relapsed. The docs did another round of induction chemo to try to prepare for a second transplant. “We can do something,” the center said. The induction chemo didn’t work the second time because the relapse was much stronger than the original MDS; it had come back as AML. So he was very weak from the chemo and he died 3 months after relapse. The wife had not prepared their adult children for the real possibility of death from transplant complications b/c she wanted to keep the positive attitude going and because they were listed as possible side effects. They thought side effects happen to other people, not to them.

I found an article about different relapse rates based on genetic mutations. It came out in 2016 and my doctor at a CofE hadn’t read it yet until I brought it to him this month in 2019. The doctors can’t keep up with everything; there are many, many different types of MDS patients. He had given us the “25%” answer as a relapse rate for all MDS patients, but for some it is much higher. My husband’s mutation has a 45-50% relapse rate after HSCT based on this and other recent studies.

I am sorry if this is disturbing for some, but I am eternally grateful to find someone on here who wants to hear more than the info you get on every corner. You may not end up needing this information, some don’t, but many do and they are unprepared. Thank you for letting me talk. I feel as if I am not hiding a secret anymore. God bless you.

[Amy Clark]

Hi Rose,
It sounds like we are on the same oral trial with decitabine. It also sounds like it has worked much better for your husband than mine! That is awesome! We have not had a transplant either, but I will share what I have found.

I will warn you. The information that I have to write in response is not very encouraging. You don’t have to read it if you don’t want to. But maybe writing it will put into words what some have been wanting to see voiced but are afraid to ask or don’t know who to ask or don’t know if they can ask at all. Some family members get outright mad when anything that is not really positive is brought up, as if it will put a negative spin on things just because they asked. This is unfortunate. Being mentally prepared for both good and bad outcomes can be freeing for those who may be in charge of caring for the patient as well as the patient him/herself and any loved ones. Acknowledge the worst and pray for the best in whatever decision you make, transplant or not.

Here goes…The impression we have gotten from the two transplant (HSCT- hematopoietic stem cell transplant) doctors at different CoE is that they really, really want to offer us a solution to a terrible problem. I get it. I really do. We all want a solution and they have a solution… for a few. So, the negatives are spoken of, but in medical language, and then the doctor thinks he has done his job of explaining side effects of transplant. However these side effects are not fleshed out in a way the patient or caregiver can truly understand because we haven’t lived through any of them, or at least not most of them and we don’t know what it is like to have these new, sometimes chronic or deadly side effects. We can’t even imagine. This is a problem. The patient and loved one goes home and most think, “OK, the doctor recommends a transplant. Let’s get a transplant.”

The main point made to us in the meetings is that this transplant is your only option for a potential cure at this time, otherwise you will die. But in reality I see transplant outcomes as one of three ways: 1) a certain much quicker and more violent death for at least a third of the people undergoing one due to transplant and induction chemo complications like infection, organ failure etc.., 2) a likely similar time frame to death with MDS but with much more medical intervention, pain and side effects or relapse for another third and 3) then a third who are cured and live longer than average than those with MDS, but many of these have HVGD of varying degrees or chronic side effects and a few skate through with minimal effects. This last group can still relapse, although after three years post-transplant, relapse becomes less likely. Total roll of the dice where you will end up. It will in a large part be a huge leap of faith to go through a transplant.

To be continued..

[Amy Clark]

Hi Joseph,
How are you and your dad doing? We have been thinking about your family daily and praying.

[Amy Clark]

Jason, please let us know how things go for all of you, the good and the difficult. We can at least pray. I certainly would appreciate your perspective. I am sure there are many others who feel the same.

[Amy Clark]

Hi Jason,
I am sorry to hear of your dad’s decline and you and your family’s pain in watching him pass away. I will pray for all of you and especially for your dad, that he is ready and at peace. He and your mom are both blessed to have you with them.

I took the liberty of asking your question to the PA we saw today at MD Anderson and she said that everyone is different b/c of the body’s ability to learn to tolerate low levels of Hgb, but that living 1-2 weeks wouldn’t be unusual without other complications in the picture. She then said that low platelets are the same in that there is variability of outcomes, but that she has seen lower labs than 5 without the patient having problems. She didn’t give me a time frame on that one because they transfuse a patient when the plt level shows up that low in clinic.

If you need more info, consider calling the hospice group your dad is receiving services from and ask if they have an experienced RN on staff who may have worked with other patients in this situation. We used hospice just two months ago for my father-in-law and while he did not have cancer, my specific questions about the last few days we answered that way. And they held true for his passing.

I too hate this disease. Watching our (young) children anticipate and see my husband’s decline is even worse than my own pain. Your mother may feel similarly. Be good to each other. Suffering is hard. HOW God makes good things come from bad for those who love Him is certainly a mystery to me. But I know He does, and so I am holding onto that.

[Amy Clark]

Hi Brett and Wife,
I am sorry you are going through all of this. It IS a ton of information to try and assimilate in a short period of time. Be kind to each other while you figure this “new normal” out. And after.

The main numbers on your regular blood labs to look at are the ANC (Absolute Neutrophil Count or Neut # on your list), the platelet count and the HGB (Hemoglobin on your list). On your bone marrow biopsy they look at the blast count as the key marker for progression of MDS. Different hospitals have different thresholds for transfusions of platelets and red blood cells. Ours is once you drop < or = to 12,500 platelets or a HGB – hemoglobin of < or = to 9.0. The ANC is considered neutropenia under 1.5 at the hospital where we are. That means your husband is at greater risk for infections as you know. His is quite low at .5 and they may put him on prophylactic antibiotics or antifungals or antivirals for his protection. Or they may not. It is up to the doctor and their protocols. The low ANC is why it is so important to watch for a fever; he has a very weak immune system available to fight against germs.

Hang in there. The most important thing you can do at this point is probably find a doctor you are confident about. The Centers for Excellence have been evaluated by someone with much more experience than I, and even though I liked our hematologist, the ones we are seeing know are much more knowledgeable at the CofE near us. Good luck and God bless you. Amy

[Amy Clark]

I forgot to mention that MD Anderson is not recommending the BMT yet, as the onc wants to try Dacogen (not a good success rate with ASXL1, but the risks for harm are lower than what they are comfortable with with a BMT) but we have been through all of the initial info and bloodwork “just in case.” The onc said he hopes we never have to look at a BMT b/c the risks are so high. That is a different kind of hope, huh?! But, I think when we hit blasts in the mid-teens they will hold out a BMT as our only option. That last statement is researched conjecture on my part.

The onc was straightforward also when we asked about side effects after a BMT and their rates. We were extremely appreciative of his candor as I could not find statistics on those the way I could on the above.
God bless you.

[Amy Clark]

Hi Tom,
I couldn’t find info for 5 years after a BMT, but the site below gives average survival rates (Survival Probablility Rates) for MDS RAEB (does NOT separate into EBI or EBII) at 100 days, 1 year and 3 years out.

For instance, my 52 yr old husband (RAEB (I)) would be looking at 83%, 57%, and 40% (for the three time frames mentioned above) with an unrelated donor match. The site is a treasure trove of statistics and you can break down the variables by transplant center, disease, age, gender, race, type of match etc.

Here is the general page:
https://bloodcell.transplant.hrsa.gov/research/transplant_data/us_tx_data/survival_data/survival.aspx

Here is the specifics page I pulled the above stats from for our situation:
https://bloodcell.transplant.hrsa.gov/research/transplant_data/us_tx_data/survival_data/survival.aspx

I hope that helps.

I am praying for you and your struggle. It is a very difficult decision with many factors, obviously, that are different for everyone. For us (my husband has the aggressive ASXL1 mutation and RAEBI) we struggle with the BMT process itself and outcomes, yes, but also with the time spent away from our six children, one of whom has special needs, (ages 10-22) when they may need us the most as they struggle with the real possibility or actual event of his death while away from home. And that is if we can garner the long term support to care for the children and his 88 yr old father who lives with us and is ill. We seriously wonder how we can choose that option (BMT) when “known” time with respective Dads (both Dad and Grandpa) and children now is so precious, maybe too precious to gamble with.

As a wife, mother and daughter-in-law I can only pray that 1) We all stay close to God and 2) That we make good practical decisions. I will pray the same for you. God bless you, Tom.

[Amy Clark]

Hi there! My husband shakes/ has chills at night when his Hgb. is dropping. It usually occurs when he needs a transfusion. Hope that helps. That may not be the case for you.
Amy

[Amy Clark]

I am so sorry that your mother passed away so soon after you found out what was going on with her. However, it sounds like being near to her in her final days was a comforting for all of you. I am glad you were able to be there for her during that time, but sorry that it was so unexpected. I will pray for peace for you and your family. I will also pray for your mom.

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