Is it worth it to take meds?
July 20, 2020 at 12:58 am #52386Pat MathewsParticipant
I was wondering if anyone or anyone you know had decided to not go forward with treatments and tests etc is it worth the time, expense, and discomfort if there is no “cure” and as I look at messages I don’t know what the point is. I want to know if it is worth it if the result is the same as not treating. I haven’t started meds yet but am getting close. My life does not matter if it doesn’t do anything.July 20, 2020 at 11:03 am #52387Tom NelsonParticipant
I have MDS Del5q. I gat a blood draw every 2 weeks and an Aranesp shop every 2 weeks I maintain at about 9.2 Hgb with this protocol. No transfusions yet. Dr. said I have a bunch of years to go. I have cut back on lifestyle, but still get all home tasks completed, in time. It isn’t perfect, but very adequate.July 20, 2020 at 12:50 pm #52388Peggy GrubbsParticipant
Good question! I’ve been thinking the same thing lately. I’m 69 yrs old and was diagnosed 5 years ago with MDS-RS. Until recently, those pills and shots kept me going and my body adapted to the slow decline of the hemoglobin. Now I’m on Revlimid with no effect so far, and am having regular transfusions to keep my hemoglobin in the 8-8.5 range. Next we are going to try Lusterapet. If That doesn’t work I’ll be transfusion dependent. I can still work in my gardens for short periods and now have help with the housework but can do little else without having a nap. The expense is horrendous but with Medicare, a supplement policy and grants to help with copays the out of pocket is low. At some point I’ll have to reconsider treatment but as long as there are still options I’ll check them out.July 21, 2020 at 11:04 am #52391Amy S.Participant
The effects of treatment vary with individual. Some people tolerate it very well, can live a normal life and go into remission. You never know until you try. People who go into remission may not take the time to post in the message board. Just my guess. There are research/development going on all the time so a better treatment or cure may come up in the future. You want to be alive when that happen. Meanwhile, stay positive, focus and direct the positive energy inside your body. Try a health diet and eat only organic food.July 21, 2020 at 11:55 am #52393Kathie WolfParticipant
We started with Procrit injections at home and they worked well initially, too well as Hgb rose to over 10. Because of the risk of blood clots, stopped for a few months. Restarted at a lower dose but never achieved that level again before developing a small clot in a peripheral vein. During all of the time was able to maintain most activities, even hiking until the last few months before the clot. Started Vidaza and had a quick response and after a a year am in remission. Yes! The medications are worth it in our case. This disease is a roller coaster for sure, but many positive changes keep coming along. Good luck!July 28, 2020 at 6:37 am #52548JoyParticipant
I tried Vidaza twice. Receiving the drug through my port was fine but through my stomach was horrible! But both times I ended up in the hospital, the first time with pneumonia because my doctor wouldn’t give me antibiotics and the second time Was because of colitis which was three months ago and I’m still dealing with it plus I picked up cellulitis along way from an IV! A few nurses and a PA have told me I am in the end stages. My doctor does not agree. I am transfusion dependent once or twice a week which to me is a more natural approach. The chemo almost took my life and I’m slowly building myself back up from that experience. I don’t regret trying it because at this point I figured at least I tried and that made my daughter feel better as well but I can’t tolerate Vidaza or Revlimid so I’m afraid to try anything else. Plus there’s the fact that none of this will completely get rid of the MDS. I don’t qualify for a transplant so for now I take a lot of anabiotic’s antifungal‘s antivirals and transfusions and I’m doing the best I’ve done since last fall. It’s not an ideal way to live but I have this disease that I have to deal with and this is the way I’ve chosen to deal with it. I don’t want to be sick and I don’t want to die. I’m 68 years old I know I’ve had this disease for a very long time. I am a grandmother now to two of the most beautiful little souls in the world and I don’t wanna leave them or my daughter, Who is their mommy. I pray that God would let me live and even though I look better than I’ve looked at a really long time of course I lost 30 pounds from this which is one thing I’m grateful for and I’m still living pretty much my normal life except if the infections get too severe then I’m down. The anemia is what is worse for me but recently my numbers are coming up and I do feel a lot stronger. I just read about some late stage symptoms and I do have a few but I look and feel the best I have in a very long time so who knows what can happen or when. I tried to live my life with the normal attitude and it works some of the time but not all the time but that’s OK. I’m taking it a day at a time and pray for a remission at least But however it turns out it’s God’s will for me and He will be there to help me get through it.August 3, 2020 at 3:05 pm #52622Kenan WhiteParticipant
Of course, this is an individual decision but since you asked … no cure doesn’t mean no life. There are many options (and more coming down the pipeline) and if you have a good doc and you are getting good advice, then those options should be laid out for you. I was diagnosed 2 years ago, but like most of us, probably have lived with it for much longer. I’m low risk right now, and am on a protocol of Procrit and Zarzio each week. I’ve worked to stay away from transfusions; I am female, and my RBC hovers around 7.5 which allows me to live a pretty decent life. And LIVING means a lot to me – I’ve definitely cleaned up my act and am probably in the best shape I’ve been in since passing the 50 mark … 12 years ago. Eat well, sleep well, exercise and do a lot of ‘head work’. It’s such a confusing and complicated disease and it really requires you to do your homework and you need to stay on top of docs and get a lot of opinions … I’ve been to Dana Farber and to John’s Hopkins just to get a second and third opinion. Talk is cheap if you have insurance, so make sure to be your advocate. This forum helps too and I take advantage of all of the opportunities to hear from experts – wishing you well and hoping that you will take the bull by the horns, so to speak 🙂
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