Hi All,
Even though I was just recently diagnosed with smoldering multiple myeloma, I have been on the "watch and wait" for 4 years due to very high lambda light chains at 952 and BM results.
Since late December I have had now 3 bad sinus infections. The last one landed me in the ER with severe vertigo. My myeloma specialist wants me to start dexamethasone and Revlimid. Instead of scouring the Internet for what to expect, I wanted to reach out to all of you.
Please share your experience on either or both of these drugs. I'm nervous.
Thank you.
Forums
10 posts
• Page 1 of 1
Re: Revlimid and dexamethasone treatment - your experience?
There's no uniform response/experience, but I'm glad to tell you of my experience, anecdotal that it is.
I'm on my 6th cycle (3-wk cycles) of induction therapy, which includes 25 mg Revlimid daily (2 weeks on/1 week off) and dexamethasone (20 mg 1x/week, down from 40 mg.) I also get a Velcade injection weekly.
I am tolerating the therapy very well, though in the last couple weeks am experiencing a fair amount of fatigue, but don't know the source of it, i.e. which drug or combination. My reading leads me to suspect the Revlimid.
The dexamethasone raises my blood sugar (am a diet-controlled diabetic) so got insulin and use it the two days the dex has that effect with me. I don't sleep well the first two nights after taking it, then have a mild crash, then am okay. Some report agitation/anger with dex, but I've not experienced that thankfully.
All in all, therapy is going well with far fewer side effects than I suspected there would be.
I'm on my 6th cycle (3-wk cycles) of induction therapy, which includes 25 mg Revlimid daily (2 weeks on/1 week off) and dexamethasone (20 mg 1x/week, down from 40 mg.) I also get a Velcade injection weekly.
I am tolerating the therapy very well, though in the last couple weeks am experiencing a fair amount of fatigue, but don't know the source of it, i.e. which drug or combination. My reading leads me to suspect the Revlimid.
The dexamethasone raises my blood sugar (am a diet-controlled diabetic) so got insulin and use it the two days the dex has that effect with me. I don't sleep well the first two nights after taking it, then have a mild crash, then am okay. Some report agitation/anger with dex, but I've not experienced that thankfully.
All in all, therapy is going well with far fewer side effects than I suspected there would be.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Revlimid and dexamethasone treatment - your experience?
Hi there,
Here is our experience with Revlimid and dex:
https://myelomabeacon.org/forum/response-to-revlimid-dexamethasone-t6347.html
Globally tolerable side effects. Good results this far, but lately an increase in the M-spike; it initially took my mom down from 4.8 g/dL to 0.76 g/dL.
Wish you all the best.
Maro
Here is our experience with Revlimid and dex:
https://myelomabeacon.org/forum/response-to-revlimid-dexamethasone-t6347.html
Globally tolerable side effects. Good results this far, but lately an increase in the M-spike; it initially took my mom down from 4.8 g/dL to 0.76 g/dL.
Wish you all the best.
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Revlimid and dexamethasone treatment - your experience?
I had Revlimid 15 mg 21 days on / 7 days off and dex 40 mg once a week as induction therapy. I had minor problems from it. The worst was night time cramping that could occur anywhere in my body at 10/10 pain and lasting up to 15 min. When they happened they would happen in about 2 hour cycles throughout the night. This happened 2- 3 times per week.
The dex caused me a couple of nights of sleeplessness followed by a one day crash. I took it on a Thursday so that when I was worn out on Friday at work I would be on a dex high. Then my crash would come on Sunday and I would be pretty much back to normal by Monday and the beginning of the work week.
Now that I've relapsed and back on treatment I'm taking Revlimid and dex again. I started with 15 mg of Revlimid 21/7 and 20 mg of dex. The levels of Revlimid and dex have been changed periodically over the 3 1/2 years that I've been taking it based on my side effect response this time. I'm currently taking Revlimid 10 mg 21/7 and dex 12 mg once a week.
Both times that I started the Revlimid / dex regimen my numbers improved quickly. I'm happy that it has been working so well for me over the years. I've maintained a VGPR for 3 years with this regimen.
Good luck in starting this treatment regimen,
Nancy in Phila
The dex caused me a couple of nights of sleeplessness followed by a one day crash. I took it on a Thursday so that when I was worn out on Friday at work I would be on a dex high. Then my crash would come on Sunday and I would be pretty much back to normal by Monday and the beginning of the work week.
Now that I've relapsed and back on treatment I'm taking Revlimid and dex again. I started with 15 mg of Revlimid 21/7 and 20 mg of dex. The levels of Revlimid and dex have been changed periodically over the 3 1/2 years that I've been taking it based on my side effect response this time. I'm currently taking Revlimid 10 mg 21/7 and dex 12 mg once a week.
Both times that I started the Revlimid / dex regimen my numbers improved quickly. I'm happy that it has been working so well for me over the years. I've maintained a VGPR for 3 years with this regimen.
Good luck in starting this treatment regimen,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Revlimid and dexamethasone treatment - your experience?
I've never taken Revlimid but as regards dex I found the main issue was insomnia on the night following the dose. It's worth playing around with the timing. You might find that a morning dose is less problematic than an evening dose (or vice versa).
The other thing I had was some mild palpitations and a slight rise in blood pressure and heart rate. Nothing major though.
On the bright side if you have any eczema or other similar skin conditions, dex will absolutely sort them out. I had an itchy patch which had lasted for years but within a week of starting the dex it vanished, never to return
The other thing I had was some mild palpitations and a slight rise in blood pressure and heart rate. Nothing major though.
On the bright side if you have any eczema or other similar skin conditions, dex will absolutely sort them out. I had an itchy patch which had lasted for years but within a week of starting the dex it vanished, never to return
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Davidg - Name: David
- When were you/they diagnosed?: Feb 2015 - AL Amyloidosis
- Age at diagnosis: 53
Re: Revlimid and dexamethasone treatment - your experience?
As others have pointed out, there is no clear pattern as to how an individual will react to Revlimid and dex. Early on, having read numerous accounts of how dex was wreaking havoc with some people's lives, I dreaded beginning my first course of treatment (Revlimid / Velcade / dexametha-sone). Much to my pleasant surprise, however, I have experienced zero side effects from any drug to-date - not Revlimid, not Velcade, not dex.
After having done RVD for six months followed by an autologous stem cell transplant (ASCT), I am now participating in a trial combining elotuzumab, Revlimid and dex and, lo-and-behold, again no side effects so far <fingers-crossed>. Other than the fact that the drugs seem to work, it's almost like I've been taking placebos.
Good luck.
After having done RVD for six months followed by an autologous stem cell transplant (ASCT), I am now participating in a trial combining elotuzumab, Revlimid and dex and, lo-and-behold, again no side effects so far <fingers-crossed>. Other than the fact that the drugs seem to work, it's almost like I've been taking placebos.
Good luck.
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LCharlier - Name: Lloyd
- When were you/they diagnosed?: 01-16-2015
- Age at diagnosis: 55
Re: Revlimid and dexamethasone treatment - your experience?
Good morning, Lloyd:
I am glad you are tolerating everything well and it's working! Hopefully, that goes on for a long time.
Can you please share a little more about the clinical trial? What is its name and phase, is it multi-center?
It is very interesting to me, and I will tell you why. I have heard some doctors speculate that although monoclonal antibodies will do their job at hitting their target and eliminating the bad myeloma cells, they may be not as effective in maintenance, if you got a CR, because the targets have all gone away. You may need to hold them off until the targets come back, at which time there may be (or may not in some cases) effective again. Whether or not the monoclonal antibodies are effective as immunomodulatory agents (IMIDs, like Revlimid) and proteasome inhibitors (PIs, like Velcade) in maintenance, is a very important question for the future. So I think this is a very important clinical trial, I commend you for participating in it, and best of success to you with it!
Regards, JPC
I am glad you are tolerating everything well and it's working! Hopefully, that goes on for a long time.
Can you please share a little more about the clinical trial? What is its name and phase, is it multi-center?
It is very interesting to me, and I will tell you why. I have heard some doctors speculate that although monoclonal antibodies will do their job at hitting their target and eliminating the bad myeloma cells, they may be not as effective in maintenance, if you got a CR, because the targets have all gone away. You may need to hold them off until the targets come back, at which time there may be (or may not in some cases) effective again. Whether or not the monoclonal antibodies are effective as immunomodulatory agents (IMIDs, like Revlimid) and proteasome inhibitors (PIs, like Velcade) in maintenance, is a very important question for the future. So I think this is a very important clinical trial, I commend you for participating in it, and best of success to you with it!
Regards, JPC
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JPC - Name: JPC
Re: Revlimid and dexamethasone treatment - your experience?
JPC,
Per your question(s), here is a quick overview of my treatments to-date:
Diagnosed in January 2015 with multiple myeloma after having experienced a mild case of pneumonia in December 2014. Other than pneumonia (a side effect of 8+ cm plasmacytoma found on upper left lung), I have experienced no symptoms of myeloma to-date (weird!). In late January 2015, I began RVD treatment (25 mg Revlimid for 3 weeks followed by one week off, Velcade once a week - 2.74 mg subQ injection, 20 mg dexamethsone once a week) with a local oncologist. Within weeks of treatment start, my plasmacytoma began shrinking and subsequently disappeared entirely within 2 months. Treatment continued through early June 2015 when I was told that all tests indicated I had achieved a complete remission. Throughout treatment, I continued my running (~8-12 miles/day) and weight training regimen (1.5 - 2 hours 5 days/week) with no adverse side effects.
At the recommendation of my oncologist, I began looking into stem cell transplant centers, eventually settling upon MD Anderson Cancer Center (MDACC) in Houston. In late September of 2015, I was admitted to MDACC to begin the stem cell transplant process (cell collection followed by actual treatment). After enrolling in the program, I was asked to participate in a Phase 2 trial entitled "Cord Blood Natural Killer Cells for Myeloma - #NCT01729091" whereby they sought "... to find the highest tolerable dose of immune cells called natural killer (NK) cells that can be given with chemotherapy and a stem cell transplant to patients with myeloma. Researchers want to learn if adding NK cells will help make the stem cell transplant more effective in treating the disease." Inpatient stem cell transplant process was uneventful and I was discharged in early November - I resumed working and running the next day with no problems observed (other than taste issues related to melphalan administration - yeecchh!).
From November 2015 until ~April 2016, I took no medicine other than valacyclovir and Bactrim. In early April, I was again asked to participate in a trial at MDACC, a Phase 2 trial entitled "Study of Elotuzumab With Lenalidomide as Maintenance After Autologous Stem Cell Transplant (ASCT) - #NCT02420860". Starting in late April 2016, I began taking 10 mg Revlimid daily, aspirin, valacyclovir daily, 28 mg dexamethasone weekly, elotuzumab weekly). With 6 treatments of the latest trial under my belt, I still have not experienced any treatment-related side effects, have not experienced any myeloma-related symptoms and all my test results indicate no measurable myeloma cells (I've had 7+ bone marrow biopsies/aspirations in 15 months).
I must say that I am a bit embarrassed to have not picked up on the issue you raised (..."some doctors speculate that although monoclonal antibodies will do their job at hitting their target and eliminating the bad myeloma cells, they may be not as effective in maintenance, if you got a CR, because the targets have all gone away. You may need to hold them off until the targets come back, at which time there may be (or may not in some cases) effective again."). That said, I will raise this issue with the lead researcher upon my next visit.
For what it's worth, I realize that, compared to most, I have been quite lucky to-date <fingers-crossed>. Given both my lack of symptoms and treatment-related side effects, I am trying to approach my day-to-day with a positive open mind. I can honestly say that, although I am vigilant in keeping an eye out for anomalous aches/pains, I otherwise am living life "business as usual" and try not to let my diagnosis drive my actions.
Hope this helps - take care.
Per your question(s), here is a quick overview of my treatments to-date:
Diagnosed in January 2015 with multiple myeloma after having experienced a mild case of pneumonia in December 2014. Other than pneumonia (a side effect of 8+ cm plasmacytoma found on upper left lung), I have experienced no symptoms of myeloma to-date (weird!). In late January 2015, I began RVD treatment (25 mg Revlimid for 3 weeks followed by one week off, Velcade once a week - 2.74 mg subQ injection, 20 mg dexamethsone once a week) with a local oncologist. Within weeks of treatment start, my plasmacytoma began shrinking and subsequently disappeared entirely within 2 months. Treatment continued through early June 2015 when I was told that all tests indicated I had achieved a complete remission. Throughout treatment, I continued my running (~8-12 miles/day) and weight training regimen (1.5 - 2 hours 5 days/week) with no adverse side effects.
At the recommendation of my oncologist, I began looking into stem cell transplant centers, eventually settling upon MD Anderson Cancer Center (MDACC) in Houston. In late September of 2015, I was admitted to MDACC to begin the stem cell transplant process (cell collection followed by actual treatment). After enrolling in the program, I was asked to participate in a Phase 2 trial entitled "Cord Blood Natural Killer Cells for Myeloma - #NCT01729091" whereby they sought "... to find the highest tolerable dose of immune cells called natural killer (NK) cells that can be given with chemotherapy and a stem cell transplant to patients with myeloma. Researchers want to learn if adding NK cells will help make the stem cell transplant more effective in treating the disease." Inpatient stem cell transplant process was uneventful and I was discharged in early November - I resumed working and running the next day with no problems observed (other than taste issues related to melphalan administration - yeecchh!).
From November 2015 until ~April 2016, I took no medicine other than valacyclovir and Bactrim. In early April, I was again asked to participate in a trial at MDACC, a Phase 2 trial entitled "Study of Elotuzumab With Lenalidomide as Maintenance After Autologous Stem Cell Transplant (ASCT) - #NCT02420860". Starting in late April 2016, I began taking 10 mg Revlimid daily, aspirin, valacyclovir daily, 28 mg dexamethasone weekly, elotuzumab weekly). With 6 treatments of the latest trial under my belt, I still have not experienced any treatment-related side effects, have not experienced any myeloma-related symptoms and all my test results indicate no measurable myeloma cells (I've had 7+ bone marrow biopsies/aspirations in 15 months).
I must say that I am a bit embarrassed to have not picked up on the issue you raised (..."some doctors speculate that although monoclonal antibodies will do their job at hitting their target and eliminating the bad myeloma cells, they may be not as effective in maintenance, if you got a CR, because the targets have all gone away. You may need to hold them off until the targets come back, at which time there may be (or may not in some cases) effective again."). That said, I will raise this issue with the lead researcher upon my next visit.
For what it's worth, I realize that, compared to most, I have been quite lucky to-date <fingers-crossed>. Given both my lack of symptoms and treatment-related side effects, I am trying to approach my day-to-day with a positive open mind. I can honestly say that, although I am vigilant in keeping an eye out for anomalous aches/pains, I otherwise am living life "business as usual" and try not to let my diagnosis drive my actions.
Hope this helps - take care.
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LCharlier - Name: Lloyd
- When were you/they diagnosed?: 01-16-2015
- Age at diagnosis: 55
Re: Revlimid and dexamethasone treatment - your experience?
Thank you very much, Lloyd, and best of luck to you.
My comment/question, of course was a speculation (I was researching a potential clinical trial with another immunotherapy for my wife, not elotuzumab). The only way that such questions get answered, of course, is to have the clinical trial process work its way through. So, as I said before, I commend you for your participation, and I hope your good results continue for a very very long time.
Regards,
My comment/question, of course was a speculation (I was researching a potential clinical trial with another immunotherapy for my wife, not elotuzumab). The only way that such questions get answered, of course, is to have the clinical trial process work its way through. So, as I said before, I commend you for your participation, and I hope your good results continue for a very very long time.
Regards,
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JPC - Name: JPC
Re: Revlimid and dexamethasone treatment - your experience?
Of course, it will depend on the dosage of Revlimid and dex.
The 25 mg of Revlimid caused a bit of fatigue, but not too bad. The worst part was terrible constipation. I'm now on 15 mg maintenance Revlimid and really have no side effects.
The dex will cause insomnia - the higher the dose, the worse it is. At 80 mg a week, my face and upper body became quite bloated. At 12 mg a week, no bloating but still some insomnia.
Good luck!!
The 25 mg of Revlimid caused a bit of fatigue, but not too bad. The worst part was terrible constipation. I'm now on 15 mg maintenance Revlimid and really have no side effects.
The dex will cause insomnia - the higher the dose, the worse it is. At 80 mg a week, my face and upper body became quite bloated. At 12 mg a week, no bloating but still some insomnia.
Good luck!!
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Janet1520
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