The Beacon forum has been SO helpful to me that I wanted to add my little journey to the mix.
After reading many of the postings, I am a bit shocked and apprehensive about the multitude of setbacks that are possible.
My only symptom when I started treatment six weeks ago was shortness of breath, which went away for some odd reason after two weeks of Revlimid, Velcade, and dexamethasone (RVD).
When I started the second cycle of Revlimid, I developed a major dark red rash on my forearms, and a swollen red head and neck. I was taken off Revlimid, and now, two weeks later, I'm back to normal except for peeling (like sunburn) and some scaly skin on my arms.
I really hate to stop the Revlimid.
The only other setback is that my white blood cell count is too low to take Velcade. Next week I may be able to start it again. I'm a bit paranoid about infections right now.
Meanwhile, my immunoglobulin G (IgG) level has dropped by half (5800 > 2700) in just five weeks.
Thank you all for sharing and caring!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Initial experience with Revlimid, Velcade, and dex (RVD)
Patients on the Velcade, Revlimid, and dexamethasone (VRD) regimen have a variety of side effects. A rash with Revlimid like you described can be dangerous, and taking you off it was the right thing to do. I am currently on VRD, but at a relatively low level as with me my immunoglobulins fell low and I developed viral meningitis as well as C. diff a few years ago. They took me off the 10 mg of Revlimid I was on but I continued to receive Velcade (have been receiving Velcade since I was diagnosed some 8.5 years ago). I was on a maintenance protocol with Velcade for the last 5 years (a subcutaneous shot once every 2 week along with 8 mg of dex at the same time).
Since I had a indolent relapse late last year, my oncologist increased the Velcade to once a week for 3 weeks, then off one, and the dex to 20 mg to be taken the same day as the dex shot. He also re-introduced Revlimid, but at a 5 mg level.
So far the triplet is working, as my light chains are falling, still not in the normal range, but half the level they were before. My side effects are primarily coming from the dex, not the Revlimid or Velcade. I have the typical dex side effects – insomnia, moodiness, some water gain and slight swelling in my feet, and an elevated heart rate. All of those last only about 48 hours, then things return to normal.
Hope that whatever protocol they put you on next that you can avoid any serious side effects.
Since I had a indolent relapse late last year, my oncologist increased the Velcade to once a week for 3 weeks, then off one, and the dex to 20 mg to be taken the same day as the dex shot. He also re-introduced Revlimid, but at a 5 mg level.
So far the triplet is working, as my light chains are falling, still not in the normal range, but half the level they were before. My side effects are primarily coming from the dex, not the Revlimid or Velcade. I have the typical dex side effects – insomnia, moodiness, some water gain and slight swelling in my feet, and an elevated heart rate. All of those last only about 48 hours, then things return to normal.
Hope that whatever protocol they put you on next that you can avoid any serious side effects.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Initial experience with Revlimid, Velcade, and dex (RVD)
Welcome to the forum, Pepperink.
Sorry to hear about the problems you've been having with Revlimid. As Ron indicated, it's a good thing that your doctors took you off Revlimid for a while, since skin-related reactions from Revlimid can turn into a very serious condition (Stevens-Johnson syndrome) if they're not watched really carefully.
Are your doctors thinking about putting you back on Revlimid at some point, perhaps even in the near future? Or are they putting the drug aside for now?
In any case, good luck, and keep us posted on how you're doing.
Sorry to hear about the problems you've been having with Revlimid. As Ron indicated, it's a good thing that your doctors took you off Revlimid for a while, since skin-related reactions from Revlimid can turn into a very serious condition (Stevens-Johnson syndrome) if they're not watched really carefully.
Are your doctors thinking about putting you back on Revlimid at some point, perhaps even in the near future? Or are they putting the drug aside for now?
In any case, good luck, and keep us posted on how you're doing.
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JimNY
Re: Initial experience with Revlimid, Velcade, and dex (RVD)
Hello Pepperink,
I have kappa light chain IgG myeloma. I had about 8 cycles of RVD Induction starting in late 2014. My oncologist first stopped the Velcade shots after I reached all the 'normal' levels of kappa and kappa-lambda ratio and 3 cycles later stopped the dex.
I did develop the Revlimid rash during the induction phase only once after 3 or 4 cycles, and then towards the end of the 21-day on cycle. I stopped the Revlimid for the last 2 or 3 days of that cycle and somehow that rash did not appear again during the rest of my Induction phase.
I developed similar rash after the 11th day as soon as my dex was stopped. My oncologist changed my 15 mg Revlimid 21 days on and 7 days off to an alternate day 20 mg dose and later, at my request, to an alternate day 15 mg. I have been tolerating this dose quite well for over a year and I have not had any Revlimid rash since. Just for future reference, lately I have had great results with Questran (cholestyramine) to help prevent the diarrhea caused by the long-term use of Revlimid.
I had taken Benadryl (diphenhydramine) after discovering the Revlimid rash and stopping the Revlimid temporarily. That seemed to have helped get rid of the rash. I noticed my rash, just a few red spots, on the wrist and later on the ankles in very early stages and stopping the Revlimid almost immediately prevented any spread of the rash. Half and adult dose of Benadryl still helps me fall asleep any time I have a sleepless night, another common side effect of Revlimid. I needed the full dose of Benadryl the night of the weekly dex during Induction.
We are all so different and each one of us has different reaction to these drugs. I was on only a 15 mg/day Revlimid during the Induction (21 days on and 7 days off) and my dex was only 20 mg weekly. Since you were able to tolerate the Revlimid for the first cycle and since it was working, your oncologist may be able to adjust your dose and the frequency of Revlimid (and also the dose of the dex) to make this treatment tolerable for you.
All the best and please post if you are back on Revlimid and what dose of the dex and Revlimid you were on (and may be back on)..
I have kappa light chain IgG myeloma. I had about 8 cycles of RVD Induction starting in late 2014. My oncologist first stopped the Velcade shots after I reached all the 'normal' levels of kappa and kappa-lambda ratio and 3 cycles later stopped the dex.
I did develop the Revlimid rash during the induction phase only once after 3 or 4 cycles, and then towards the end of the 21-day on cycle. I stopped the Revlimid for the last 2 or 3 days of that cycle and somehow that rash did not appear again during the rest of my Induction phase.
I developed similar rash after the 11th day as soon as my dex was stopped. My oncologist changed my 15 mg Revlimid 21 days on and 7 days off to an alternate day 20 mg dose and later, at my request, to an alternate day 15 mg. I have been tolerating this dose quite well for over a year and I have not had any Revlimid rash since. Just for future reference, lately I have had great results with Questran (cholestyramine) to help prevent the diarrhea caused by the long-term use of Revlimid.
I had taken Benadryl (diphenhydramine) after discovering the Revlimid rash and stopping the Revlimid temporarily. That seemed to have helped get rid of the rash. I noticed my rash, just a few red spots, on the wrist and later on the ankles in very early stages and stopping the Revlimid almost immediately prevented any spread of the rash. Half and adult dose of Benadryl still helps me fall asleep any time I have a sleepless night, another common side effect of Revlimid. I needed the full dose of Benadryl the night of the weekly dex during Induction.
We are all so different and each one of us has different reaction to these drugs. I was on only a 15 mg/day Revlimid during the Induction (21 days on and 7 days off) and my dex was only 20 mg weekly. Since you were able to tolerate the Revlimid for the first cycle and since it was working, your oncologist may be able to adjust your dose and the frequency of Revlimid (and also the dose of the dex) to make this treatment tolerable for you.
All the best and please post if you are back on Revlimid and what dose of the dex and Revlimid you were on (and may be back on)..
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Initial experience with Revlimid, Velcade, and dex (RVD)
Thank you all for taking the time to write!
I am so very early in my adventure (8 weeks) that there is no reliable guess about my upcoming treatment changes.
My WBC and Neut are too low (1.6/0.7) to continue Velcade, so I was given three injections of Neupogen over three days. I get a blood test tomorrow with the goal of resuming Velcade.
Thankfully, the 40 mg of dex each week does not cause me any side effects, except for 4 hours of sleep the first night. No "energy" boost or other meth-type effects.
This forum is SO very helpful. What a resource!
I am so very early in my adventure (8 weeks) that there is no reliable guess about my upcoming treatment changes.
My WBC and Neut are too low (1.6/0.7) to continue Velcade, so I was given three injections of Neupogen over three days. I get a blood test tomorrow with the goal of resuming Velcade.
Thankfully, the 40 mg of dex each week does not cause me any side effects, except for 4 hours of sleep the first night. No "energy" boost or other meth-type effects.
This forum is SO very helpful. What a resource!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
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