March 2, 2016 at 10:43 pm #29458yqParticipant
Hi all. New to posting but have read through a lot of posts. My dad was diagnosed this Dec with MDS RAEB-2, intermediate-1 / -2. His oncologist tried him on revlimid end of Dec. as he has the del5q, but he had every side effect in the book (and some not–major swelling of forearms and face, up until last week) so we went for a second opinion. He will be starting vidaza on Monday and don’t really know what to expect. We are staying positive. He’s 74 and was otherwise very healthy. We’ve been told vidaza is very tolerable, but after our experience with Revlimid, I’m very worried about side effects.March 2, 2016 at 11:28 pm #29460Richard WagnerParticipant
Hi YQ—I too am 74 and am going into Cycle 6 with Vidaza. Only side effects for me is 2 weeks of constipation, and a little nausea. I have had a lot of pimples on my back at cycle 2-3, but not much now. I get my Vidaza in the shot form. 2 shots each day for 9 days. I had 16-18% blasts in my bone marrow in Oct. That is high. Only
real negative thing is my WBC are low, and I need to get them up so I can go to dentist. Wish your dad the best.
RichardMarch 3, 2016 at 12:01 pm #29462yqParticipant
Thanks for your reply, Richard. I appreciate you sharing your experience. Wishing you all the best! I’ll likely post an update as my dad’s treatment continues. This is a great outlet.
Thanks again!March 12, 2016 at 11:39 am #29496Dion BothaParticipant
Just starting my first round on Thursday past, The first two days have been hard as I get nausea and vomiting a lot. Wish me luckMarch 12, 2016 at 1:51 pm #29497Richard WagnerParticipant
Hello Dion, What drug you taking? Injections, or infusion.. I think Nausea will get better for you..Mine is almost non existant at cycle 5. Constipation 2 weeks out of the month is most problem I have. Good Luck.
RichardMarch 12, 2016 at 10:22 pm #29498Dion BothaParticipant
I am on Injections at the moment, That is good news thanksMarch 19, 2016 at 1:11 am #29515Debbie RadeckerParticipant
Hi Everyone, I’m New to this site but not to MDS. My husband was diagnosed in 2014, to be honest I can’t remember the first treatments he first received but they were transfusions. They didn’t work! So they tried another transfixed drug, it didn’t work either. Plus they were giving him steroids during that time. The only thing that did was make him feel good, at least for a while. They performed bone biopsy. His Dr said no cancer? Well, in Dec. 2014 they removed his spleen, saying that was what they thought was killing his platelets. That didn’t work either! After healing from that surgery, they started chemo treatments, that didn’t work so they changed chemo plus gives him a profit shot once a week. His has received numerous blood an platelet transfusions. His platelets have dropped as low as 3000 and was put directly in hospital for transfusion. There is so much he has gone thru I can’t hardly keep up myself. Tuesday he is returning to MUSC to see the doc that actually diagnosed the MDS. Perhaps they have something else to try, my husband will be 78 next month, but 2 yrs ago you would not believe his age, now however he seems to be aging so have I. Thanks for listening and sharing. I will try to check on all of y’all. God bless! Rich W hope you are doing better….
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