Procrit then Vidaza-nervous

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• July 22, 2018 at 2:03 am #36932
  Deb Richards

  Participant

  I have chemo induced MDS with a 7q deletion. I’ve been unable to do much for myself for the last month since my RBCs tanked. Major effort to do anything and kinda wonder if it’s worth it. I had an autologous SCT in 2016. Got a Procrit shot a few days ago and spend all my time laying around and not eating. I get another Procrit shot Thurs and then start Vidaza the next Mon… but why? Am I ever going to have any energy again? Can I ever again have some quality of life. My friends tell me not to do more chemo and I know that a cure involves an allogenic SCT and I’m not a candidate for that. Any input positive or negative is appreciated. Thanks

  July 22, 2018 at 10:47 am #36933
  Tereze Gluck

  Participant

  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!!

  July 22, 2018 at 11:00 am #36934
  Deb Richards

  Participant

  The whole SCT process was horrendous even with a wonderful staff there. And abt a year to get normal values to my blood cells and then get MDS. SCT isn’t a cure all. Unfortunately, I might not be back needing treatments again so soon if I had waited to just be cancer free for awhile first. I wish I’d stopped and thought about it before jumping in but I understand you need that for the cure. Did you take the Vidaza?

  July 22, 2018 at 11:44 am #36935
  Tereze Gluck

  Participant

  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.

  July 22, 2018 at 10:59 pm #36936
  Sherry Pratt

  Participant

  A transfusion will help you feel better. Where are you being treated? I would go for another opinion.

  July 23, 2018 at 2:01 am #36938
  Deb Richards

  Participant

  I had nonhodgkins lymphoma. Dr didn’t mention a transfusion.. maybe because her plan is Vidaza and if I start that I can continue Procrit, I think. Tereze, I hope it all works out for you. The SCT was a horrendous deal. I hope you have a good support system

  July 23, 2018 at 6:20 am #36941
  Wendy Brizer-Maciol

  Participant

  From the 13 months that my dad was on Vidaza and blood transfusions, the effect of the long tterm transfusions was more detrimental in the long run than the Vidaza.

  September 4, 2018 at 10:28 pm #37270
  Tereze Gluck

  Participant

  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!

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