Hi All,
My name is Julianne, and last August I found out my dad had relapsed after 11 years of being diagnosed with multiple myeloma. He is 77 years old and was first diagnosed back in 2004, underwent a bone marrow transplant, and was on thalidomide for the years afterwards. During the initial treatment, I found out his kidneys were deteriorating, so he had to start taking medicine for that.
After finding out he had relapsed, he was taken to another doctor for a second opinion. It was discovered he also has prostate cancer after doing multiple tests. Because he had only been treated with one drug before for the myeloma, I was told the options for treatment were better.
He was started on Velcade, dexamethasone, and Revlimid in October, but has been having a hard time with them. Between October and mid November he was in the the hospital a couple of times because of constipation. By Thanksgiving he started having diarrhea every weekend, and it has been going on since then. He also has been hospitalized a few times after the diarrhea started because he was fainting upon standing. They told us he was dehydrated at first, but the fainting continued and now they say it is orthostatic hypotension.
The oncologist thought it was the Revlimid causing the diarrhea and took him off it, but it did not stop. Now he's being taken off the Velcade because he is too weak, he can't even make it to the bathroom anymore. He has lost so much weight, has no appetite and is sleeping a lot. Occasionally he complains of some pain but not very often.
I feel so much for him and wish there was more I could do to help. I found this forum and after reading a bunch of the posts, felt the need to share. Hang in there everyone.
Forums
Re: Dad's multiple myeloma relapsed after 11 years
Welcome to you and your Dad, Juliann.
It sounds like your Dad had an impressively long period of remission before relapse. However, I am sorry to learn that his condition has deteriorated so much. Remission followed by relapse is certainly one of the most frustrating aspects of myeloma.
I am a long term sufferer of orthostatic hypotension. It got significantly worse when my treatments started back in July 2016. I had to go to my local ER to get checked out as I was blacking out. The ER staff treated it as a temporary problem.
Later, I was to learn that sometimes a person’s body will form chemicals that cause vasodilation when undergoing chemotherapy. Maybe your Dad’s fainting spells will improve now that he is off Velcade.
Let’s hope.
Joe
It sounds like your Dad had an impressively long period of remission before relapse. However, I am sorry to learn that his condition has deteriorated so much. Remission followed by relapse is certainly one of the most frustrating aspects of myeloma.
I am a long term sufferer of orthostatic hypotension. It got significantly worse when my treatments started back in July 2016. I had to go to my local ER to get checked out as I was blacking out. The ER staff treated it as a temporary problem.
Later, I was to learn that sometimes a person’s body will form chemicals that cause vasodilation when undergoing chemotherapy. Maybe your Dad’s fainting spells will improve now that he is off Velcade.
Let’s hope.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Dad's multiple myeloma relapsed after 11 years
Hi,
I'm sorry your dad is struggling. The medications can be very hard, especially when you add all the side effects of all of them together.
I hope your dad can get his strength back, and you can find a regimen that he can tolerate.
I'm much younger then your dad and had similar side effects to Velcade (early 30's when diagnosed). I had to have my dose adjusted and skip some doses. I also had constipation, but it turned into an obstruction. I had to take laxatives before and after every dose, and it was not that great. Also had the dizzy spells. Low blood pressure.
I'm sorry your dad is struggling. The medications can be very hard, especially when you add all the side effects of all of them together.
I hope your dad can get his strength back, and you can find a regimen that he can tolerate.
I'm much younger then your dad and had similar side effects to Velcade (early 30's when diagnosed). I had to have my dose adjusted and skip some doses. I also had constipation, but it turned into an obstruction. I had to take laxatives before and after every dose, and it was not that great. Also had the dizzy spells. Low blood pressure.
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