New MDS Patient
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- This topic has 10 replies, 7 voices, and was last updated 4 years, 3 months ago by Richard Macgurn.
January 9, 2019 at 3:33 pm #44905
Just got diagnosed. I have my 1st appt. in 1.5 weeks. They said the Doctor and Coordinator will meet with me to see if I am a candidate for a transplant. Why would I not be? I’m only 49. No other issues other than A-Fib.January 10, 2019 at 6:53 pm #44908Chris BallmerParticipant
I’m 51. I wouldn’t jump right in to a transaplant if i could put my two cents in (you’ll have to qualify first anyways). Are you on anything now?, trying some lower power drugs first may or may not buy you some time. Have a list of questions for the professionals, and consider alternative ways to elongate your lifespan. I’m using a operator-moderated mixture of conventional and alternative treatments… Nutrition changes/improvements are possible and may also give your body more resilience in case you need to start on a chemo based regimen. Just saying.January 14, 2019 at 10:01 pm #44933glynesParticipant
Sorry to hear of your diagnose. This is pretty standard to do an evaluation. Might seem illogical but you have to be healthy enough to go through but not be so healthy that you don’t need it. What I’ve learned is if the risk of your condition is below the risk of the transplant, they will put you on hold. The reason is that the transplant is a very difficult process and there is a significant mortality risk. Understand that while transplant is the only known cure, it is also viewed as procedure of last resort because of the risk.
I’d suggest before you go, you do some research looking at the process and risk of transplant so you understand and can ask good questions. Don’t overly focus on the risk statistics because they aren’t pure and many of those who go through have other health problems that complicate their outcome. In going for the eval you have to know you want the transplant because they will ask and you have to be committed. Of course you can tell them you need to time to think about it but it will come down to your decision if they are on board in doing the transplant.
I hope this helps. Good luck with the evaluation.January 15, 2019 at 10:51 am #44938
Thank you for the input, Chris.
So, are you a candidate for a transplant? If so, why aren’t you doing it?
What kind of meds are you trying and did you find out about them thru research or your doctor?January 16, 2019 at 4:57 pm #44959Chris BallmerParticipant
Michael – City of Hope in LA put my name into their global database, and my brother is a half match. I’m not doing it because it would be too risk, for the need. It’s like cutting off your finger because you pricked it with a rusty nail… you’d try some lower risk things first… but if it got gangrene and infected then that may be the only way to save your life, etc… Procrit to boost RBCs, my Kaiser Onc prescribed as normal protocol to boost red blood cells because they are low and getting more oxygen to my brain is a good thing…expecially for my old brain! 😉January 23, 2019 at 9:19 am #44983
Follow up – I went to my first meeting at the MUSC Cancer Center in Charleston, SC yesterday. The Oncologist says that they are going to watch my numbers monthly and see how it goes. Numbers aren’t low enough to warrant doing a transplant right now. Going to see if I can get a second opinion of what’s going on from a Circle of Excellence Hospital, University of Alabama Birmingham Comprehensive Cancer Center.
http://cancercenter.uab.edu/why-choose-the-uab-comprehensive-cancer-center/cancer-types/leukemia/January 23, 2019 at 1:13 pm #44984MichaelParticipant
This disease is very finicky. A second opinion from an expert at a Center of Excellence seems to be a wise choice.
I am 66 and was diagnosed in June 2016 with RAEB1 6% blasts from local hematologist/hospital. The recommendation was to start Vidazza treatment. Second opinion from MDS expert at Center of Excellence was very low risk RCMD 1% blasts, no treatment but monthly peripheral blood tests and annual bone marrow biopsies. I remain on watch and wait (took some time to wrap my head around it). My advice—put your faith in the experts.January 25, 2019 at 11:25 am #44997Paul DyerParticipant
I’m 50 male and was diagnosed July 2018. Cytogenetic testing of marrow showed multiple mutations including TP53. I did a clinical trial of APR 246 + azacitidine for 2 months then trial of venetoclax just before transplant on November 3 2018. Go to a Center of Excellence! Depending on your MDS risk and outcome, there are many options.January 27, 2019 at 7:47 pm #45004Pat LawsonParticipant
Paul how are you doing since your transplant? My husband is in a trial taking vidaza and ventaclax and he is doing really good. The doc is pushing for him to do a transplant if his blasts keep dropping but we are on the fence due to the risks.February 5, 2019 at 2:45 pm #45065
Thanks, Paul. I have a second opinion appointment scheduled at a COE Hospital this Friday. Getting another BM Biopsy and lab work. Last Oncologist informed that I am intermediate MDS with a High Risk of AML due to my defective 7Q. We’ll see what this one says.
How is your transplant going?February 18, 2019 at 5:38 pm #45119Richard MacgurnParticipant
Hello all. I was diagnosed in nov 2018, aside from 1 bag of platekettes and of red cells I’ve had no meds. The transfusions were done as my wbc was 1.4 and plateletes at 9.4. I also did 3 shots of nupogen yo boost wbc count. Then I flew off to Arizona and went first to virgina piper cancer center. They redid bone biopsy and found blasts at sub 5% in marrow none in periferal bloood. Since first biopsy in Costa Rica showed 10-15% blasts there was confusion. So I went to a COE Mayo Clinic and there they did biopsy #3. This showed blasts under 2% and two chromosomes missing 12p and 20q In marrow stem cells. But they say I’m low risk so we waiting more test results. One hospital wants me to start Vidaza a week a month forever (5 years they say) but Mayo says doing nothing means 3-5 years.
So I’ve started looking at other options like Gc-Maf, Coleys Toxin, dendritic cells,high dose infusions. Anyone out there had any successs with Alt medicine on MDS?
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