Good Morning all! During 1st cycle of RVD, I got a trunk and limb rash with no itching. Doctor took me off planning to restart on 2nd cycle. 2nd cycle, arm rash after 1st Rev pill. Now Doc wants to switch to Cytoxan. I've tried to research this drug, but have found some difficulty. It looks like an older drug (do we still use it?) One thing that causes me concern is a rare side effect: it could cause Leukemia. I certainly don't want to add to my repertoire of blood cancers. Anyone have any up to… read more
@A MyMyelomaTeam Member, I am now 6 months past my SCT and still feeling that I won't ever want to do that again. I was in pretty good shape going in and it was still very rough. The week before is spent building up stem cells (had some bone pain with that), the harvesting was easy, the actual infusion of Melphalon was easy, the infusion of stem cells was easy, the next week was fine ( I was walking 6 blocks to the clinic every day), then went downhill quickly. I spent 7 days hospitalized for weakness, inability to eat or drink enough, severe diarrhea, 1 infusion of platelets needed. It wrecked my digestion. I was sent home to recover and it took until 45-50 days before I felt like myself again and started to regain some strength and stamina. By my 100 days milestone (end of June) I was feeling pretty good again. Then I was put on Velcade maintenance and back to some side effects from that, mostly fatigue and random days of chemo brain fog. I do have my hair back now, it is about an inch and a half long and curling - never had curls before!
The staff at Mayo's in Rochester is very knowledgeable, very caring, they took very good care of me and were on top of every side effect and have provided very good follow-up - I can message them anytime I have questions and they are very responsive. I highly recommend you do this at a place with alot of experience. And make sure you get a central line placed, the amount of blood draws and infusions needed is daily torture for weeks unless you have one, I was shocked they might even have considered not placing one and said "yes, please" for mine.
I am sorry to sound so brutally honest about this, but I felt I was not prepared for how bad it could be. Most people seemed to gloss it over like it wasn't a big deal. I am not a wimp by any means but I would never say it wasn't a big deal, it was. Not that you can't get through it, you certainly can, but it was not a walk in the park. I "endured" it, like in suspended animation. I am very glad to be on the other side and supposedly in remission from this thing that has vastly invaded my life and peace of mind. Best of luck to you!
I read your story. I am looking at doing SCT end of 2021/beginning of 2022. Wondering how your SCT went? It's the mysterious, scary part of treatment. Thanks for your insights.
Hi @A MyMyelomaTeam Member no, I lost my hair from Melphalon though... ALL of it!
Hi Hannahleah. Thanks for the info. Did you lose your hair with the Cytoxan?
Hi! I was also placed on Velcade, Dexamethasone and Revlimid but was 6 weeks with just Velcade and Dex before the Revlimid came. I turned out to be allergic to it, worst hives I have ever seen on anyone, like full body poison ivy! Off the Rev, onto Cytoxan I did not notice any increase or new side effects from it. I blame the Dex for the side effects I did have. I was only on it for a couple of cycles before I had ASCT in March and am now on just Velcade every 2 weeks. I am fuzzy headed and fatigued for a few days then pretty much OK until the next time. Hope all goes well for you.
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