Almost 42 a little over a year since diagnosis
January 12, 2022 at 3:52 pm #57172ShaunParticipant
I am creeping up on my 42nd birthday, which is fairly young for an MDS diagnosis. I’ve been sitting on watch and wait for a little over a year now. Hgb is sitting at just under 10, wbc usually just under 5. Platelets are another issue, hovering around 20 which is dangerously low. My oncologist has recently put me on promacta to see if it will raise my platelet counts. So far, no dice. I know that promacta is generally used for itp and have read that it is not for mds. I’ve also read some studies that show it can be helpful in raising platelet counts in people with low risk mds which is where I’m currently at. I still work 4 days a week and am able to carry on a fairly “normal” life. I have met with a few drs at Roswell in Buffalo to discuss treatment options, including stem cell transplant. At this point, still on watch and wait. Getting weekly blood draws to monitor counts while taking promacta. I havent really noticed any side effects from it yet either so I guess thats good. Anyone else have any experience with promacta for mds?January 12, 2022 at 10:15 pm #57173Kathleen TillParticipant
Ask your doctor about, I think it is called Venclexta by Genentec. It is not approved for MDS as far as I know but my doctor put me on this before my transplant last September because my blasts were too high and they wanted them lower. I took them for 14 days and they put me in remission and my platelets went up from 34,000 to 505,000 far too high I know but I was going in for transplant and knew during chemo they would come down again.
This is a long shot I know but worth asking about. Probably not for you but who knows. During my five months of chemo before transplant my platelets got as low as 13,000 and I never had any platelet transfusion or blood transfusions.
They do carry a high deductible but the company will pay for them if doctor puts in order directly to them.
Certain people with other blood cancers are on these for months.
By the way I am 73. 42 is far too young but kids have been diagnosed as young as 9.
Good Luck with your treatments.
Hope this makes sense.
KathyJanuary 13, 2022 at 2:12 pm #57179Jean IraParticipant
My husband, 70, was diagnosed with intermediate MDS in February 2020 and has been on watch and wait since that time. He feels well and leads a normal life. He has labs and an appointment every 4 – 6 weeks. He started on Promatca in June 2021 because his platelets had been dropping. It is thought that Promatca has kept his platelets at least stable. (17 in June; 22 this week; HGB 10.5; WBC 2.68: generally closer to 1.5) The only side effect he has had is some coughing.
JeanJanuary 24, 2022 at 2:35 pm #57235ChrisParticipant
Shaun – I’m sorry that you’ve joined the club at such a young age. I’m 50 and was diagnosed in October ’21. I’m on a watch and wait, but it’s being suggested that I would bypass treatment when my numbers start dropping and instead look to the stem cell transplant. I have heard several times recently that Dr’s are moving more towards aggressive streatment (i.e. SCT) in young, relatively healthy individuals before the disease has an opportunity to progress. I’m curious to hear if you’ve been told the same thing? For what it’s worth, I’m being treated at a COE.April 28, 2022 at 2:36 pm #57953ShaunParticipant
Thank you for the responses, After a few months of taking 100mg, they bumped me up to 150mg and was on that for 2 months. I didn’t notice any side effects while taking the lower dose, but had a bit of mild stomach issues on the higher dose. I was on this drug from late November until early March. I have stopped taking the Promacta because it was not helping my blood counts. Having my 3rd BMB in about a week to see if there has been any change. It has been suggested that I start on Azacitidine (Vidaza), most likely in a month or so. I am a little apprehensive to start on Vidaza as I am still leading a relatively normal life and believe that it usually has an average effective time frame of roughly 24 months. Looking at my last BMB results (from May 21). I was at less than 1% blasts and have a BCOR mutation with a 7% allele frequency (which doesn’t really seem to mean much yet). I guess we’ll see what story the next BMB tells. My main concern with the Vidaza is that it will cause problems that aren’t currently there. I know that it is considered a “low intensity” chemo drug, but it is still chemotherapy, and that comes with its own set of fun symptoms. Best case(in my head anyways), it does send me into remission after a few or 6 cycles. I’m not sure what worst case would be. I feel like I can live fairly normal life as long as no physical trauma causes my lack of platelets to shine. Chris, I can’t say that I’ve heard any Drs say that at this point, but that could be a trend.April 28, 2022 at 5:09 pm #57954MichaelParticipant
I was diagnosed in 2016 at age 64. Initial bmb indicated intermediate level 6% blasts. Local hematologist wanted to start Vidazza. My sole cytopenia was and still is neutropenia. To get me ready for Vidazza I received neupogen injections. Neupogen increase my wbc for about 36 hours and is not considered an appropriate prophylaxis treatment. In meantime I requested second opinion at a C o E. In interim, I received 3 doses of Vidazza and stopped pending C o E results. C o E bmb indicated 1% blasts and Vidazza treatment was halted. My CoE physician performs annual BMB and I stay consistent at 1% blasts and remain on watch and wait. In those 6 yrs I been cautious about infection and have had only a one cold. I do get skin infections from time to time. I thankful for avoiding Vidazza so far. I feel well. My advice is to follow the treatment plan of the experts at Roswell.
Best wishes.May 5, 2022 at 2:28 pm #58012tamParticipant
You might want to give papaya leaf tea a try for your platelet issue. It can’t hurt. Here’s a previous post of mine.
For low platelets you might want to try organic dry papaya leaf. I buy 1 pound bags of organic leaves online from Starwest Botanicals, but there are other retailers. We buy paper tea bags and scoop a tablespoon of dry leaves in each bag and staple shut. Steep the papaya tea bag in hot water for 5-6 minutes. It may help. There is research showing that papaya can increase platelets. I have been drinking one cup per day for six years and my platelets have increased from where they were when I started. Give it a try — it certainly won’t hurt. I have read that two cups per day is completely safe. Good luck.
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