Anyone out there who has been successfully cured by a bone marrow transplant?

[Rose eden Guanzon]

My husband was diagnosed last apr 2018 as high risk MDS (RAEB2). His sister is a 100% match. From 12% blasts, he is now down to zero. He is in a clinical trial that gives decitabine in tablet form and it has worked like a dream for him. He is 67 years old, no other health issues. He is on his 10th decitabine cycle. We are advised to undergo the transplant. But is anybody out there willing to share A transplant experience? Does it really work? I know it worked on Robin but she seems to be the only oneone. I am so scared that my husband will undergo this and spend the next 5 years with all sorts of side effects. I mean what is the quality of life for anyone out there who has survived this?

[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]

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.

[ulli kopylec]

My Husband had was diagnosed with MDS in March 2018 . Had 6 cycles of chemo with Trial medication. Blast went from 9 % to 0 % and in Oct 2018 had a Stem cell transplant ( from his brother ) He is now past 100 days. Everything went well, but he is still very tired. We are hoping it will get better. We went for the transplant because alternative was injections in his Stomach for 7 days out of every months. He did not want to live like that. So far so good.

[Pat Lawson]

Amy thank you for your honesty. My husband is in a trial for high risk MDS and we have told the doctors we are on the fence about doing the transplant for the exact reasons you stated. Can you please tell me where to find the article about relapse rates based on mutations? I have found a couple online and they mentioned 2 of the 4 mutations that my husband has that do not have good outcomes.

[Paul Dyer]

Hi,
I am a 50 year old male. I was diagnosed in July 2018, high risk, poor outcome, multiple mutated genes, TP53 mutation. After 2 months clinical trial of APR246 + azacitidine, I had an all o transplant on Nov 3 2018. As of today (day +108) I am still alive! I had my 100 day marrow test and the results are very encouraging. Blasts less than 1%, and no evidence of TP53 mutation. I am still awaiting chromosomal results.
The entire process is not easy though. The actual time in the hospital for transplant is long, and you may get sick from the chemos. Once released, different challenges arise. Isolation from the rest of the world is very hard. Other challenges have been long term distaste for many foods, mucositis (2 weeks of sore throat), and gvhd. GVHD has come as rash, and most recently oral (my mouth gets sores and is sensitive).
But, the positives far outweigh the stats of my TP53 mutation prognosis. Less than 20% OS (overall survival), and usually relapse of disease within 6 months.
Transplant side effect and results are very individual, and allo transplant is different than auto. Best wishes to you!

[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.

[Rose eden Guanzon]

Thank you to everyone who responded. Amy you have been so informative. It is now clear to me that i do not know enough. For example, i did not even know that i should be aware of the mutations. All i know is that my husband has RAEB II. I have also been such a coward and never even asked about the prognosis. I hope more people will continue answering in this forum so i will learn more. I will pray for all of you. I am very good with that.

[Bridgette Perkins]

Hello- My name is Bridgette Perkins.
3 weeks ago i was diagnosed with mds 5q deletion.Im currently taking revlimid chemo pills.Has anybody survived long term with this? I have read under the American cancer society ppl live 20 years or longer.Please if anybody could give me feedback or advice tht would be great! I lost my son last year and my grandkids and husband need me.Thank u-

[Rose eden Guanzon]

Bridgette from what I have read your type of mds has a very good prognosis. Stay hopeful. You will be alright.

[kathryn Mullaney]

Rose please do not feel bad about fearing these possible outcomes. My husband has been diagnosed with MDS for a year and a half. I recently felt that I had been digging my head in the sand and I really should educate myself. This site is wonderful and I also got a lot of info from the AA and MDS organization in Bethesda Maryland.
There is a lot of ground to cover because of so many types of MDS that is out there. It is going to take awhile but I am pushing thru trying not to get too overwhelmed
Hang in there and I hope it gets better. God Bless Kathy

[john guimond]

Hello Rose,My Name is John. I am 63yrs old. I live in Alberta, Canada. In April 2018 my routine blood work showed my CBC,s steadily dropping.( 5 Blood Transfusions since then). My family doctor referred me to a hematologist. She requested a bone marrow biopsy. In Jan 2019, I was diagnosed with high risk more advanced MDS. She basically layed the cards on the table and informed me that this MDS has a greater chance of turning into AML, meaning my life expectancy is about a year. Whoaaaa!!!, talk about a sudden and rude awakening!!! She said that sometime in the last year or so I was exposed to some kind of toxin or chemical that caused my bone marrow to shutdown. I work in the coal mining industry in a coal processing plant. My job is with the maintenance department as a plant oiler, so i’m exposed to several types of oils and chemicals. I have been off work since July 2018. I was told that there is no cure for this condition. Scary!!!! However i was offered a drug called Vidaza (chemotherapy) 7 days 21 days off. This treatment is supposed to delay the onset of AML and give me a better quality of life, as well as give me a few more years. Yahoo i thought!!!! this is fantastic !! Unfortunately, still not a cure. So i’m given another option and a chance for a cure. YES a bone marrow transplant!! I have two older siblings who are being screened for a possible match.( If your husband’s sister is 100% match, this is a good positive thing.) I started my first cycle of Vidaza last month. second cycle starting today. If I choose to go with the transplant, I will have to live in Calgary for 3 months (1 month in hospital). The transplant center sent me a big binder to read. Whow, lots of terrifying and overwhelming information.!! But there is also some good information, which in the end seems to outweigh the bad. I guess it all depends on the individual’s health age etc..I was told by my Doctor that an individual in my town just had a successful transplant. Apparently he is doing well so far. I am hoping to meet him. I can relate to what you are going through. My prayers are with your husband. I have come to the realization that i am very ill, and if one of my siblings is a match, i’m going ahead with the transplant. I’ve also decided that positive thoughts is the only chance of getting through this. We seem to be bombarded with all these negative testimonials! I choose to ignore because negativety produces bad results. I wish you all the best, and will let you know how my journey goes.

[Rose eden Guanzon]

Thank you John. If you are Caucasian you have a good chance of finding a match. I understand that a younger donor is better. However if your sibling is in good health that can work well too. You are in my prayers. We have decided to go ahead with the transplant. It might be this 3rd week of March. I will keep everyone updated.let us all pray for each other.

[john guimond]

Thank you Rose. All the best to you and your husband.

[reggie lama]

Hi Rose,my dad who is 68 years of age was diagnosed with MDS RAEB II with 20Q deletion and RUNX1,U2AF1 and KRAS Gene Mutations in Late August of 2018 and started of on Azacitidine and weekly Platelet transfusions.He had three cycles of Azacitidine and underwent a RIC allogenic HSCT with the donor(his younger sister)being a 10/10 match on the 1st of December 2018.He is on his 151st day post the stem cell transplant and doing good so far;He had a 100 % Donor Cell engraftment on the 87th day and the same was constant on the 123rd day and the next blood sample for a Chimerism report is to be given next week.He had a lot of tummy problems/GVHD(gas,bloating, constipation and three episodes of loose stools in between) till the 3rd month post the transplant but is comparatively better now.He has a healthy appetite (also helped by the Steroids/Dexamethasone) and has weekly reviews with his Hematologist/Transplant Doctor and is waiting to be taken off the Dexa so that we can finally go home(We do not have proper medical infrastructure and support back home for my father and are thus staying close to the Transplant Hospital)with “Normal Dexa free blood parameters”..
He has become Dexamethasone dependent as three episodes of weaning him off of Dexamethasone has resulted in him having lowered platelet and hb levels and the earlier mentioned three episodes of loose stools.
HSCT is tough on the Patient and the family but we did go ahead with the HSCT as my dad was given 6 months to live when initially diagnosed by his first hematologist in August of 2018.
Good luck to you all..

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