WE *HATE* MDS :-(….

[ask4angels]

Male, 67 years young ~ I want to live… July 22, 2019 diagnosed with MDS. No blasts. Second biopsy showed 1% to 2% blasts, 7 deletion and the mutation that I will develop AML. Doctor said – With No treatment (BMT) I have 17 months to live. Looking into a bone marrow transplant to bye time. They say even after transplant the MDS CAN COME BACK. And then there’s the graft versus host disease… If that’s not enough to scare you to death! Guess I will roll the dice. Has ANYONE had a transplant at MD Anderson? They talked about Vidaza… Open to hard core experiences, thoughts and/or advise. The only way I can get through this is with information, YOUR experiences and honesty… Thank you, Alan

[Kathy Stermer]

I too hate living with this disease Alan. In my case have tried 2 types of treatment without any results except worse labs than I started with and feeling crappy more times than not. Currently only on treatment to help prevent infection and transfusion of blood when needed. Have to say my quality of life has been better. 5% blasts on last biopsy and the odds with transplant just not good enough for me. Told my doc I’d rather die living with this disease than die trying to survive a transplant. Too many things to go wrong and with 40% relapse odds I’m gonna enjoy whatever time I have not being pumped full of drugs, chemo and radiation. No idea how long I’ve had this or how long I have left but gonna do it naturally. BTW, am retired nurse very familiar with transplants and good and bad outcomes. Just my personal take and decision here so keep gathering information and best of luck.

[Susan Malmgren]

I am 73 and also decided against a transplant. After 15 days in the hospital (which was the first time in my life) I knew that wasn’t the route for me. Any way I’m feeling better today than I have in two years.

[Amy Clark]

Hi Alan! Hang in there and gather what info you can before making a decision. It is entirely personal and no one knows the absolute right answer for your situation. The doctors are offering the best they have and they don’t even know if that will work. This message board has lots of experiences to read about. Look up other posts from me for thoughts on transplant. My 53 y/o husbands’ short story is aggressive mutation, high risk MDS with @18 mon to live dx in Aug. 2018 . MD Anderson was very strongly encouraging an allo-transplant all along until the dacogen started working after the 7th cycle. My husband said he didn’t want a transplant. He is now on the 11th cycle and not needing transfusions at this time although he still gets very low white counts during the cycle. When the dacogen stops working, he will try to get on a trial with vidaza and venetoclax or something else. Venetoclax at this time is showing good outcomes with vidaza and dacogen. Feel free to call if you think we can help. 832-540-4214. We tried to go to a support group for post transplants at MD Anderson, but they told me they stopped holding those support group meetings a couple of years ago. They were nice to find us a post-transplant survivor to talk to when I asked for that.

Lastly, the CIBMTR has a decision making page on their site that might help. And those ladies, when I called, were very helpful and honest about post-transplant life should you like to talk to someone else.

[mdsfound]

Hi Alan, The MDS Foundation can connect you with other MDS patients who have gone through the transplant process as well as provide you with material resources. Please contact us at 1-800-637-0839 Ext. 210. Happy to help!

[Dr. Lin]

Sorry about your diagnosis and terrible experience living with MDS. Yes, transplant is not for everyone, especially when you are older or have other medical problems. Happy to help as well! Several things to consider from a blog I wrote a couple of years back:
https://www.cancer.net/blog/2018-08/bone-marrow-transplants-and-older-adults-3-important-questions

[ask4angels]

I would like to thank everyone for their feedback. Richard, I especially enjoyed the article that you wrote. It was very informative. While others may be able to wait with their MDS and see what happens, I unfortunately have the mutation that I will go into AML. I am having my third bone marrow biopsy on February 3rd. I am hoping that I do not have an increase in blasts. Richard, what are your thoughts on T cell removal to lessen graft versus host disease. Also, do older patients have a better outcome with the best match?

Sending positive thoughts and prayers to all…

[Dr. Lin]

Thank you Alan, yes T-cell depleted transplant significantly reduces GVHD but again not for everyone. On the other hand, having the best matched donor (10/10) is always best for any transplant. We can have a call about T-cell and transplant. You may email me: linr@mskcc.org and we’ll find a good time to talk.

[Kathy Lynch]

Hi, Yea we all pretty much “hate” having it. But as my doc said I got another 13 years after my first cancer diagnosis. I have been on Aransp for 4 months and am feeling better. While it won’t cure it at least I am not as bone tired. I was given a time frame of 5 years and I am coming up on 2 years. While I am not happy at having a smaller time frame, I feel that I have been given time to get my life organized and do the things that I have wanted to do and enjoy life to the fullest. I know it is trite but we all can go at anytime… using this time to the very best you can is important.
Hugs and the very best to you.

PS I am very lucky that I live just a couple of hours from Stanford Hospital, that is where Dr. Peter Greenburg is, he is considered one of the gurus of MDS. It was nice to get a “second” opinion.

[Donna]

Hi Alan,
What mutations do you have? I think mine head to AML also. I have ASXL1, SRFS2, RUNX1 and TET2. The SRFS2 doubled somehow. Last BMB I had 2 of them, but they are different. I don’t quite understand it.
Donna

[Nathan Leonard]

Hey there. I am 1 yr 2 months post BMT. I had MDS del 5q with intermediate risk score. BMT is the only thing considered “curative”. While I too struggled whether to do it I’m glad I did. I was given success rate of 80% and additionally was told that it would transform into AML at anytime. This was a big motivator to head off the disease getting worse and glad I did. While at the hospital I noted those like myself did a lot better than those who already had AML. Also, I’ve read many BMT survivors who lived years after leading normal lives with minimal side effects, GVHD being one. Shortly before starting my BMT I met a lady who was 20+ years post and was normal in every aspect. Saying all this I was blessed to not having endure most of the unpleasant side effects that COULD result. However I did have my body temp climb to 105 at day +3 when immune system was completely gone. As a result I experienced a condition call “rigors” which is a violent uncontrollable shaking of the body. The cause of high temp was a result of 3 different kinds of bacteria invading my body and central line which had to be removed. Also, shortly after being released from hospital I experienced minor bout of GVHD all over exterior of my body but the medical team said that was a good thing. Even after enduring this I know that the decision I made was the right one. I am now living a healthy and normal life and enjoying ALL of the things I like to do such as, playing golf, softball, fishing, camping, teaching, and learning to do a lot new things. The end result is that I feel better than I have for years and do no regret doing it for a second. A suggestion, don’t focus on all of the negative possibilities and establish specific goal(s) to achieve that you now can’t do. It made a difference in my attitude and approach. God bless and pray for the strength and comfort. While you did not choose to have this disease it did happen to someone (you) that has the capacity to overcome this mountain. Know that you are not climbing it alone. Let those of us who gone before on this journey show you the way!

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