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I do discuss w my dr, who is wonderful. In early November we added prednisone and for a couple of weeks that really gave me more energy and strength and resilience. But already it’s having less effect. Dr said I could doubt he oral prednisone but I have noticed a difference.
Thanks for posting. I am much sicker than your descriptions. My numbers are much worse. I was just in the hospital for 11 days on massive antibiotics. I am very far from my previous ‘normal’ life. My white count never reaches 1. My platelets hover between 24 and 30+, I need frequent transfusions. Without s transplant I will not last long. Struggling to find s hospital that will do a transplant
You’re lucky. Me, nOt so lucky. My neutropenic fevers not caused by infectious agents but solely from my own body’s gut bacteria. So not from food, or crowds, or someone who’s ill. So, completely beyond my control. All this confirmed by my urrent hospital stay. I’ve been super-careful, washing hands constantly, avoiding crowds, following neutropenic diet. My Neutrophils are just too low for my body to handle the normal bacteria in the gut. Deeply discouraged, as appears it’s going to be difficult to find a hospital willing to do transplant.
Oh deb! Apologies for not getting back to you sooner. I was probably lying around on the couch in misery from fevers, transfusions, vidaza… who knows!
But in fact I wanted to encourage you… hang in there! Watch the Great British Baking Show for hours… or some other delicious escape! Do you knit? When I have the psychic energy, I sometimes do some knitting while I’m watching TV… I do feel like a washed-up invalid, but I look for the small pleasures… and hope the transplant will help me. It’s brutal out here in the world… that’s for sure!
Hi deb. I run fevers too and take Tylenol. I’m waiting for a bone marrow transplant… but sorry, no insights. Just confirmation that you’re not alone!
Hi Ray. Thanks for getting back to me. They wanted to turn me down because I have recurrent ovarian cancer – which is why I got MDS, all that chemo. They called it a ‘co-morbidity’ and apparently that is reason enough for them to turn s patient down. I argued vehemently with the dr. And frankly his reasoning was a little fishy. Certain death vs possible death, I said to him. A no-brainer. At one point I said, what is it you actually think might happen due to the ovarian cancer? He was rather flustered. ‘Well without white cells your cancer might overwhelm you in just weeks.’ ‘I already have no white cells’ I pointed out. Frankly I think they are concerned about their statistical success rates. I think my oncologist persuaded the panel that my OC was sluggish and very contained, not in any other organs, etc. they are asking for a PET scan which I think is reasonable. Of course nothing is straightforward- with my low white count, I got an intestinal infection which is proving very stubborn, and I can’t get a clean PET scan while I have the infection. So I have to clear up the infection and then have the PET scan, and I think they will do the transplant then. But still hoops to jump through.
I appreciate the dialogue with you – the hell with the exercise, you do what you can!
I’ll keep you posted… thanks again.
Hi Ray. Not sure whom you were addressing when you said ‘I assume you have low-risk MDS.’ If it was me, you’re wrong – I have high risk advanced MDS, my situation sounds similar to yours – transplant or daisies! So to speak.
I’m sorry to hear about the graft-vs-host disease… sounds brutal. I hope you get a break.
My quality of life at the moment is pretty compromised. I have no strength, even with red cell transfusions. I haven’t been able to do much. Sleep a lot. Dinners with friends have become taxing and arduous rather than fun. I’ve also kind of lost my personality – I feel shrunken down to my disease. I always had so many interests, and now I can’t focus on anything. I hope I start adjusting to my new reality!
I will have the transplant, if they’re willing to do it. As you explained, I don’t really see an alternative, vidaza doesn’t have a good track record for high-risk MDS.
How is daily life with GVHD? Are you able to do things that you enjoy?
Wishing you the best –
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? Thanks
Hi Cecile. May I ask, what’s the chemical trial you’re on? I’d like to tell my drs about it
Deb, what kind of cancer did you have? The transplant guys at Mt Sinai will only do a BMT if my ovarian cancer is in remission. Where did you have your SCT done?
I started vidaza at the end of June. Just having my second cycle now. They say it usually doesn’t kick in until the 3rd cycle, but m.y white count has gone up – from 0.4 to 1.8 – though that could be from the neupogen.
I’ve also read that with chemo-related MDS, Vidaza doesn’t work for very long – statistical average just 5 months. So it seemed to me a transplant was really my only option.
Deb, i have the same diagnosis. Ive been getting red- cell transfusions which did seem to restore my energy. I have other problems now – a low white count which led to a month long infection and a month on antibiotics, all of which laid me low.
But perhaps the red cell transfusions might help more than the procrit?
I am hoping to have a transplant but dtill have to jump through some hoops before that happens..
Do keep me up to date … good luck to us both!!
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.
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.
Hi Cecile! I am so glad to hear that Vidaza is working for you so well! I had read that it was not very effective for people with chemo-induced MDS, so it is really encouraging to hear otherwise, a nd have some real-life examples to counter the statistics. And it’s great to hear the side effects are minimal.
I had my first cycle of Vidaza at the end of June, and I start my second cycle later this week. I have lots of lumps and bumps at the injection sites, but nothing bothersome. Of course one cycle is too soon to tell if it’s working, so we shall see.
I hope you’ll keep me posted about your experience with Vidaza. Remission sure would be nice. At the moment my white count is extremely low, and I’ve had Ann intestinal infection for 4 weeks and on two antibiotics for the last two weeks, so I haven’t really had a normal day in a month. The intestinal issue is painful and the antibiotics are so depleting… so it’s felt like ‘get me that transplant NOW!! So a remission would sure be welcome!!
Keep doing well with the Vidaza!
rar, I met with the transplant surgeon. That’s why I’m posting all these questions! It was like being on trial. I was Clarence Darrow for the defense. I advocated for myself for an hour and a half. I believe this is about numbers- they don’t want failures, it hurts their reputation. They framed it as an ethical
Issue, but we’re not really able to answer my challenges.
It occurred to me that MSK, which does many more of these surgeries than mt Sinai , would be less concerned about ‘success rates’
This is a cynical assessment but a friend of mine who works for Csncer Care said it was most likely the real