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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

RVD Induction Therapy

by bluegirl on Sun Jul 15, 2012 11:46 pm

Hi All,

My mom was diagnosed in April and recently completed her first cycle of RVD. As her daughter, I am so happy to have found this amazing place to share, learn and gather my own courage by reading about the courage of others.

In that vain, I would like to ask those that have been on RVD as an induction therapy whether they had severe back pain after Velcade injections? And, how severe was the exhaustion you felt during the process? My mother experienced back pain so severe the day following her fourth injection that she was admitted to the hospital for one day. Also, we have all been quite stunned by how exhausted she has become. I knew this would be no walk in the park, but her level of exhaustion has certainly frightened me. Lastly, the weirdest thing we have noticed is that she jerks in her sleep now. While I can't pin that on the RVD therapy with certainty, I can say with confidence she was not doing this before treatment.

Her docs are great, we are blessed that she lives in a state with myeloma specialists. They have reduced her Revlimid and dex to 10mg. (Hopeful, they can reduce Velcade as well-though not sure that possible.) She is due to start her second cylce this week and I am scared out of my mind over what else (as far as side effects) may lie ahead. Please share any thoughts and experiences, I would sincerely appreciate it.

Best to All,

Bluegirl

bluegirl
Who do you know with myeloma?: Mom
When were you/they diagnosed?: April 2012
Age at diagnosis: 71

Re: RVD Induction Therapy

by runner1960 on Mon Jul 16, 2012 8:49 am

Welcome

Speaking from first hand experience, I have been experiencing a lot of back pain with my Velcade. It did not start with my first shot, but has been getting progressively worse through each treatment. That being said I also have a bulging disc in my lower lumbar area , so I am not sure I can blame it all on the Velcade. As for the fatigue factor , it is the same for me. Complete exhaustion for almost a week after the shot. I think it is just a byproduct of the treatment and I have learned to live my new normal. Hang in there and good luck.

runner1960

Re: RVD Induction Therapy

by tgarciajones on Mon Jul 16, 2012 12:49 pm

I started out on the TVD for almost 4 years and then was put on RVD for about 2 years. I have been blessed in that I did not have any major side affects. The most painful were the muscle cramps that felt they started deep in the bones then to the muscles, the low white counts, sometimes tired, low muscle strength, had to watch the kidneys, and other different things. But I pushed myself to go back to work at the very beginning and have never looked back. Being a teacher with a room of second graders with happy little faces I have continued to work and it has kept me happy and hey I am still here and able to take care of myself! I am now completely in remission as of April 2012. It is a hard road, but you have to look for that Rainbow that is going to keep you motivated to smile and laugh. Best meds in the world!

tgarciajones

Re: RVD Induction Therapy

by bluegirl on Mon Jul 16, 2012 2:20 pm

Thanks so much for the replies. It seems the common thread is to make it through the prescribed treatment cycles and that exhaustion is just a byproduct. Runner1960 she also has a bulging disc. As a result of the severe back pain after the Velcade injection, her docs decided to use Velcade by IV. Tomorrow she starts the second of the three cycles. Hoping the IV method helps. Thanks for taking the time to tell me your stories.

And, tgarciajones, I believe you are absolutely right-a positive outlook is key!

Thanks again,
Bluegirl

bluegirl
Who do you know with myeloma?: Mom
When were you/they diagnosed?: April 2012
Age at diagnosis: 71

Re: RVD Induction Therapy

by Mdegenkolb on Mon Jul 16, 2012 9:53 pm

I am about to start my 3rd go around with Revlimid. I did 3 to 4 sessions at 25mg and the final session was with Dex. I do not look forward to doing that again. Dex is rough even when taken on only 1 day in 7.

But back to the Revlimid. I did another few weeks right after Stem Cell transplant. I had a lot of issues with my mouth. Food tasted like it was coated in the hottest hot sauce ever made. Even water and Iced tea burned. Nothing had any flavor. I was miserable. And that was on 5 mg. So starting tomorrow, I start over with the "maintenance" at a low dose of 5mg and work to 15mg for the rest of my remission. Hopefully, now that I am almost a year out of transplant, I will tolerate the dose better. I plan on keeping a diary of my experience. So hopefully, I will be able to help others in this experience. I have not heard of anyone in the situation that I am in. I am post transplant, I was transplanted on September Th 2011, in Augusta, at the Georgia College of Medicine, Cancer treatment Center. I am 56 years old and was diagnosed February Th 2011. I am, so far, not having any symptoms except the constant back ache from the damage to my spine from the multiple myeloma. I am not in any studies. I was in a Revlimid study that had three parts. But due to the issues with the Revlimid, I was dropped from the study. So by going to this site, I have learned more and understand the disease a bit better.

Mdegenkolb


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