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When Did You Feel The Worst During Induction Treatment ? What Were Your Worst Side Effects And When Did They Go Away?

A MyMyelomaTeam Member asked a question πŸ’­
Bartlett, IL
June 9
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A MyMyelomaTeam Member

It’s hard to say since I was diagnosed in late December as a high risk patient and started on therapy on January 7th. I was still in shock at the diagnosis and trying to process everything. My treatment was Revlimid/Velcade/Dexamethasone - the standard RVD induction treatment. I know I hated the Dex. As soon as I went into remission, I was scheduled for a Stem Cell Transplant on May 31, 2019. For me, the SCT was awful and I did not go into remission until November. I was on the maintenance dose of Revlimid until November when they figured out it ruined my heart. I have been on Darzalex since January 2020. I recently celebrated the 5th year anniversary of my SCT.

June 9
A MyMyelomaTeam Member

I can second what has been said about Dex. I am still on RVD. The Revlimid (25mg) has dulled my sense of taste. That's about all of the side effects I've had from that. The Velcade is injected on Tuesdays; like clockwork, I get a red rash, maybe 2" by 3" at the injection site on Thursday, and it will itch on Friday. After that, it subsides and causes no problems. The rashes fade away over the next 2-3 weeks, and are no problem. The Dex has been my biggest challenge. I take it on Tuesdays also. At first, it would perk me up during the day when I'm at work. I would feel like Superman! Then on Tuesday evening, I noticed that it would make me GROUCHY. I even have an alarm set to ring on Tuesday evenings, reminding me. It says "IT'S TUESDAY, DON'T BE A JERK!!!" πŸ˜„ Then, on Tuesday night, I would (and still do) get the hiccups! Sometimes they last into Wednesday. On Tuesday nights, I wake up around 1:00 or 2:00 AM and am unable to go back to sleep. So on Wednesday, I am really tired all day. I usually sleep like a baby on Wednesday night. Right now, I take Melatonin (7mg) on Tuesday nights to try to help me sleep. I also take it again on Wednesday night to make sure I get a good night's sleep. It usually works. So Dex has been the biggest challenge for me. (By the way, today is Dexday (Tuesday) πŸ™‚πŸ˜‹πŸ˜›πŸ˜³ Now in all honesty, I'm not complaining. These are just the things I've noticed. In the big scheme of things, these are not the end of the world. I thank God that this is all I have to deal with, and I can deal with it. So, all in all, life is STILL good!!!! πŸ™‚

June 11
A MyMyelomaTeam Member

I hated the dexamethasoneπŸ‘Ή

June 10
A MyMyelomaTeam Member

The dexamethasone high and then the crash. Were my biggest issues

June 9
A MyMyelomaTeam Member

My story is similar. Treatment November 2022 to March 2023.
Weekly treatments of dex, Velcade and Darzalex FasPro. Really did not have many side effects. Dex crash after second day. Some neuropathy treated with Gabapentin.
Then did SCT and achieved remission. On monthly maintenance therapy now. Same drugs as initial therapy and doing well. Fatigue and back pain, which I have had since I was 30, are my biggest complaints.

June 9

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