July 19, 2018 at 5:08 pm #36922
My name s Mark. I was diagnosed with MDS in January of 2017. The diagnosis was complicated as I also have comorbid HHT. The diagnosis however was confirmed after I was sent to the Mayo for a bone marrow transplant consult. The confirmation was based on a mutation at UTAF1. So far all of the studies I have read indicate that it has a worse prognosis in terms of overall survival and progression free survival. Any help on this topic?July 19, 2018 at 11:39 pm #36923
Hi. Is Mayo Clinic willing to do a BMT ? I also have a very high risk case with poor prognosis – chemo related MDS. I’ve pretty much concluded that BMT is my only real option. Vidaza might give me a year or two but it rarely works for longer than that, and by then I’d be that much older facing the same harsh reality. So I am lobbying hard to get the BMT as quickly as possible. And I DO have to lobby!, I feel like Clarence Darrow for the defense… I have really had to advocate for myself, and the are making me jump through a lot of hoops…
You can erase arch available treatments for your type of MDS. See what they say about the effectiveness of vidaza, and how long you can expect it to work. It was that kind of research that persuaded me I would need a BMT sooner rather than later.
Please keep me updated about what you find out. If Mayo Clinic agrees to do BMT, I’d jump at the chance.July 20, 2018 at 2:34 am #36924
Hi Therese I would have been eligible and luckily I have good insurance that would have paid for it. The Mayo would have done it however as my hematologist and I already knew I would likely not be eligible medically. As I mentioned I also have a rare disease called HHT for short or Older Weber Rendu officially. It is a vascular disorder which causes severe bleeding in some cases. I currently am transfused weekly as a result of that on top of MDS. As a result it is unlikely that I would survive the procedure. Otherwise I would have been a good candidate as I was only 58 at time of diagnosis.July 20, 2018 at 9:56 am #36927
Hi mark. So transplant not an option for you, I guess. Some people on these boards are reporting fairly long remissions with Vidaza. Have you started it yet? I was throwing up all day after my first shot , so you might. want to take zofran (anti-nausea) before you get your shot.July 20, 2018 at 6:44 pm #36929
My 92 year old dad had 13 rounds of vidaza with no side effects.July 22, 2018 at 11:05 pm #36937
I am on my 15th round of Vidaza and always have Zofran before hand, they use my port, no infusion as I had major hurt/rash from that, no side effects, also doing a chemical trial twice a month, Vidaza working fine for me so far, will have my 7th BMB on the 15th of Aug, last one showed I am in remission and mine is chemo induced MDS high risk, this works for me well.July 23, 2018 at 1:22 pm #36944
Hi Cecile. May I ask, what’s the chemical trial you’re on? I’d like to tell my drs about itJuly 23, 2018 at 11:18 pm #36945
It is done thru the clinical trial at KU Med Clinical trial in Fairway Ks, they are no longer taking any new patients on it, it has been closed, so far I am still on it, but they did put me on a daily antibiotic as a precaution. So you can not get on it at this time.July 24, 2018 at 8:58 am #36954
But if I know the name of the drug there may be other similar trials. I knew I couldn’t get into s trial already under way – I wanted to know the name of the drug. Could you let me know? ThanksJuly 26, 2018 at 10:14 am #36974
Terese, I am getting ready to start a Phase II clinical trial. It is a combination of Vidaza and an unnamed drug APR-463? I start on Monday. I am diagnosed MDS RAEB2 with a TP53 gene mutation. I do not qualify for a transplant or stem cell as I have had a kidney transplant 5 years ago. This is my only hope for extending my life some. This trial is being conducted at 4 locations. Anyone else doing this treatment?
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