Hi MMFeb16,
I am sorry to hear about the side effects that you have taking Revlimid and dex. Good that your scalp is not itchy now, but I did find that using Head'n' Shoulders shampoo helped with that (I think the active ingredient is pyridine). Also, for aches and pains do you use an OTC med such as Tylenol (acetaminophen, paracetamol)? At night time you can use Tylenol Nighttime, which aids in sleeping.
To keep your voice strong, try vocal warmups! I went to a choir workshop in Courtenay B.C. last year led by a woman who has a series of vocal warmup videos, Wendy's Vocal Warmups, days 1 - 30. Even if you don't sing with a group, the warmups would strengthen your voice. I also find that doing lots of walking strengthens my voice, for some reason.
Hope that helps!
Forums
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: M-spike creeping up, not on maintenance therapy
Hello MMFeb16,15.
I am very sorry that you are experiencing such horrible side effects.
The only thing I can add to what Nancy Shamanna wrote is that I found just a half of the adult dose of Benadryl (diphenhydramine) helps me with any 'hay fever like' symptoms (slight sore throat, minor body pain, etc.) and lets me get at least a good 6 hours' sleep. Tracy J had suggested the Benadryl early in my induction phase and I had my oncologist clear it for me.
I sincerely hope that you can somehow manage these side effects for a few months and then you can then take another 15-month treatment holiday. It must e very difficult for you, particularly because you seem to have to travel all over the world.
I am curious how you manage the risk of contacting any infections in the plane, particularly on a very long journey? Most of the recirculated air in these planes pose a major danger as is discussed in great detail on one of the threads on that subject.
I am very sorry that you are experiencing such horrible side effects.
The only thing I can add to what Nancy Shamanna wrote is that I found just a half of the adult dose of Benadryl (diphenhydramine) helps me with any 'hay fever like' symptoms (slight sore throat, minor body pain, etc.) and lets me get at least a good 6 hours' sleep. Tracy J had suggested the Benadryl early in my induction phase and I had my oncologist clear it for me.
I sincerely hope that you can somehow manage these side effects for a few months and then you can then take another 15-month treatment holiday. It must e very difficult for you, particularly because you seem to have to travel all over the world.
I am curious how you manage the risk of contacting any infections in the plane, particularly on a very long journey? Most of the recirculated air in these planes pose a major danger as is discussed in great detail on one of the threads on that subject.
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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: M-spike creeping up, not on maintenance therapy
Dear Nancy Shamanna and K_Shash:
Thank you for your comments and suggestions.
I use Head and Shoulders shampoo regularly since last thirty years or so. It did not help. On suggestion of a colleague, I did use scalp oil (virgin coconut oil). It did not help either. Finally Benadryl (diphenhydramine) 25 mg helped.
I am extreme G6PD deficient person and should not be taking paracetamol (Tylenol, acetaminophen) or NSAIDs for pain relief.
I really enjoyed my treatment-free life, and I wish and pray to get back to it.
Thank you again for your time for comments and suggestions.
Thank you for your comments and suggestions.
I use Head and Shoulders shampoo regularly since last thirty years or so. It did not help. On suggestion of a colleague, I did use scalp oil (virgin coconut oil). It did not help either. Finally Benadryl (diphenhydramine) 25 mg helped.
I am extreme G6PD deficient person and should not be taking paracetamol (Tylenol, acetaminophen) or NSAIDs for pain relief.
I really enjoyed my treatment-free life, and I wish and pray to get back to it.
Thank you again for your time for comments and suggestions.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: M-spike creeping up, not on maintenance therapy
Hello MMFeb16,15,
I wonder whether, instead of going back on single-agent Revlimid therapy, it might be better for you to go on a two- or three-drug regimen, and be treated with that regimen for 4-6 cycles to beat back your relapsing multiple myeloma.
What your doctor certainly is doing is common practice. However, the reality is that you have relapsed, or at least nearly relapsed. So I don't understand why doctors, in that situation, say "Oh, let's treat the relapse with Revlimid all by itself." Why not treat it with Revlimid, Velcade, and dexamethasone (RVD), or Kyprolis, Revlimid, and dexamethasone (KRD)? There is evidence that Revlimid is more effective combined with a proteasome inhibitor, so why use Revlimid until it stops working, and thus miss out on the chance to get synergistic efficacy from Revlimid combined with a proteasome inhibitor (or, for that matter, with something like Darzalex)?
Cheers!
I wonder whether, instead of going back on single-agent Revlimid therapy, it might be better for you to go on a two- or three-drug regimen, and be treated with that regimen for 4-6 cycles to beat back your relapsing multiple myeloma.
What your doctor certainly is doing is common practice. However, the reality is that you have relapsed, or at least nearly relapsed. So I don't understand why doctors, in that situation, say "Oh, let's treat the relapse with Revlimid all by itself." Why not treat it with Revlimid, Velcade, and dexamethasone (RVD), or Kyprolis, Revlimid, and dexamethasone (KRD)? There is evidence that Revlimid is more effective combined with a proteasome inhibitor, so why use Revlimid until it stops working, and thus miss out on the chance to get synergistic efficacy from Revlimid combined with a proteasome inhibitor (or, for that matter, with something like Darzalex)?
Cheers!
Re: M-spike creeping up, not on maintenance therapy
Ian,
This just happened to me yesterday actually. I was at work and my oncologist called me to inform that the pathologist who did my bone marrow biopsy declared a relapse. He started talking about single-agent plans like thalidomide, and I cut him off right there. I told him I'm 31 years old and this is my first relapse, so we're attacking this full bore so I don't have to keep worrying through my 30's.
So it looks like it's probably going to be Velcade and dexamethasone + Darzalex.
This just happened to me yesterday actually. I was at work and my oncologist called me to inform that the pathologist who did my bone marrow biopsy declared a relapse. He started talking about single-agent plans like thalidomide, and I cut him off right there. I told him I'm 31 years old and this is my first relapse, so we're attacking this full bore so I don't have to keep worrying through my 30's.
So it looks like it's probably going to be Velcade and dexamethasone + Darzalex.
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Shwan - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 30, 2012
- Age at diagnosis: 25
Re: M-spike creeping up, not on maintenance therapy
Dear Ian and Shawn and my multiple myeloma colleagues:
Thank you for your experience and advice. I am not enthusiastic about taking medicines. I avoid if it can be avoided.
Here is my experience of first maintenance dose month:
I started with 15 mg Revlimid. Side effects experienced earlier came, but itching of my head was so bad that I could not close my eyes for 48 hours. Benadryl helped. I stopped taking maintenance dose for three days. Fourth and fifth days I took only 5 mg. Side effects were tolerable. I increase the dose to 10 mg but after seven days I could not tolerate body pain. I stopped it for three days. Last three days of 21 days I took only five mg Revlimid.
After seven days I took blood test. My light chain and M-spike reading is lower by over fifteen percent.
Below are my readings for 2017, with my latest readings (for July 27) in bold.
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
I started yesterday with 5 mg a day. Again, I have same principle. Quality life as long as I live. Treatment, side effects, and again medicine for side effect is a perpetual cycle. I say no to that.
I have changed my diet plus I feel I should go for minimum dose of medicines which my body can tolerate and I can maintain sanity.
What is fun of living life with anger, bloated body, body pain, lack of sleep, losing memory and many more other side effects?
Any suggestion is most welcome.
Thank you for your experience and advice. I am not enthusiastic about taking medicines. I avoid if it can be avoided.
Here is my experience of first maintenance dose month:
I started with 15 mg Revlimid. Side effects experienced earlier came, but itching of my head was so bad that I could not close my eyes for 48 hours. Benadryl helped. I stopped taking maintenance dose for three days. Fourth and fifth days I took only 5 mg. Side effects were tolerable. I increase the dose to 10 mg but after seven days I could not tolerate body pain. I stopped it for three days. Last three days of 21 days I took only five mg Revlimid.
After seven days I took blood test. My light chain and M-spike reading is lower by over fifteen percent.
Below are my readings for 2017, with my latest readings (for July 27) in bold.
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
I started yesterday with 5 mg a day. Again, I have same principle. Quality life as long as I live. Treatment, side effects, and again medicine for side effect is a perpetual cycle. I say no to that.
I have changed my diet plus I feel I should go for minimum dose of medicines which my body can tolerate and I can maintain sanity.
What is fun of living life with anger, bloated body, body pain, lack of sleep, losing memory and many more other side effects?
Any suggestion is most welcome.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: M-spike creeping up, not on maintenance therapy
Hello MMFeb16,15
I am saddened to read about all the horrible side effects of the Revlimid you experienced over the past month. I hope you are managing better with the 5 mg daily dose AND your M-spike and kappa keep improving. I recall coachhoke's post about his experience with only 2.5 mg Revlimid dose that was effective for him, I believe. The alternate day 15 mg Revlimid has been tolerable and working well for me. I could not tolerate the daily 15 mg Revlimid (21 days on and 7 days off) because of the Revlimid rash on the 11th day.
Alternative to Revlimid:
I am not sure, but isn't there an alternative to Revlimid? I think Ninlaro (ixazomib) is mentioned if Revlimid is not effective. Maybe you can tolerate its side effects better.
Just as an example:
I have had a first hand experience about cholesterol-lowering drugs. I could not tolerate Mevacor (lovastatin) at all and its side effects causing muscle and joint pain were not reported in the mid 1990's. I stopped Mevacor and later tried Lipitor (atorvastatin), which had been working just fine for me. (I had to stop the Lipitor because of all the muscle and joint pains I re-experienced when combined with the Revlimid.) I know of a few others that cannot tolerate Lipitor at all. We are all so different!
Autologous Stem Cell Transplant (ASCT) Option:
I fully agree with you about the quality of life being the primary consideration. I have been fortunate and I am tolerating the 15 mg alternate day Revlimid with minimal side effects. I opted against the upfront ASCT because I responded well to the Revlimid, Velcade, and dexamethasone (RVD) induction treatment and also to the Revlimid maintenance, to date. However, a number of oncologists have mentioned that the ASCT usually offers, on average, approximately 3 years "drug free" after the ordeal of the ASCT. Many patients relapse after up to 5 years (some even longer) and may do well after another ASCT or respond to tolerable maintenance. I am sure you would have read a lot of discussion about the ASCT, the survey about relapse times, etc.
All the best, long and quality life!
I am saddened to read about all the horrible side effects of the Revlimid you experienced over the past month. I hope you are managing better with the 5 mg daily dose AND your M-spike and kappa keep improving. I recall coachhoke's post about his experience with only 2.5 mg Revlimid dose that was effective for him, I believe. The alternate day 15 mg Revlimid has been tolerable and working well for me. I could not tolerate the daily 15 mg Revlimid (21 days on and 7 days off) because of the Revlimid rash on the 11th day.
Alternative to Revlimid:
I am not sure, but isn't there an alternative to Revlimid? I think Ninlaro (ixazomib) is mentioned if Revlimid is not effective. Maybe you can tolerate its side effects better.
Just as an example:
I have had a first hand experience about cholesterol-lowering drugs. I could not tolerate Mevacor (lovastatin) at all and its side effects causing muscle and joint pain were not reported in the mid 1990's. I stopped Mevacor and later tried Lipitor (atorvastatin), which had been working just fine for me. (I had to stop the Lipitor because of all the muscle and joint pains I re-experienced when combined with the Revlimid.) I know of a few others that cannot tolerate Lipitor at all. We are all so different!
Autologous Stem Cell Transplant (ASCT) Option:
I fully agree with you about the quality of life being the primary consideration. I have been fortunate and I am tolerating the 15 mg alternate day Revlimid with minimal side effects. I opted against the upfront ASCT because I responded well to the Revlimid, Velcade, and dexamethasone (RVD) induction treatment and also to the Revlimid maintenance, to date. However, a number of oncologists have mentioned that the ASCT usually offers, on average, approximately 3 years "drug free" after the ordeal of the ASCT. Many patients relapse after up to 5 years (some even longer) and may do well after another ASCT or respond to tolerable maintenance. I am sure you would have read a lot of discussion about the ASCT, the survey about relapse times, etc.
All the best, long and quality life!
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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: M-spike creeping up, not on maintenance therapy
Dear K_Shash:
I visited my hematologist two weeks ago. He was surprised with the downward trend in my light chain and M-spike readings in spite of my taking a lower dose of Revlimid. He wondered if I ever had multiple myeloma, or if I was always in MGUS stage.
As I posted years earlier, my only symptoms detected by PET/CT scan was three very small lytic lesions. These lytic lesions were not detected in the third PET/CT scan done last November.
My side effects are manageable.
My hematologist suggested to continue with 5 mg Revlimid and Zometa (to help build my bones) every three months. He also would like me to have a PET/CT scan before I see him next.
Thank you.
I visited my hematologist two weeks ago. He was surprised with the downward trend in my light chain and M-spike readings in spite of my taking a lower dose of Revlimid. He wondered if I ever had multiple myeloma, or if I was always in MGUS stage.
As I posted years earlier, my only symptoms detected by PET/CT scan was three very small lytic lesions. These lytic lesions were not detected in the third PET/CT scan done last November.
My side effects are manageable.
My hematologist suggested to continue with 5 mg Revlimid and Zometa (to help build my bones) every three months. He also would like me to have a PET/CT scan before I see him next.
Thank you.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: M-spike creeping up, not on maintenance therapy
Glad to read the very encouraging news MMFeb16, 15.
As to the MGUS possibility: your kappa free light chain level was 378 mg/L when you first started your Revlimid, Velcade, and dexamethasone (RVD) treatment as I found in another of your topics about complete remission (CR). I think your M-spike was 39 g/L at the time. I am not sure whether those numbers indicate MGUS. I wonder if the MSmart guidelines or other tables for staging of the multiple myeloma can help.
My kappa was around 1,100 mg/L (110 mg/dL) and rising around 10% per month at the time my RVD induction treatment began. My kappa-lambda ratio was over 186 at the time in December 2014. My hematologist-oncologist was not keen on starting my induction therapy till my bone marrow biopsy showed 30% monoclonal activity. My x-rays showed only faint lesions but all over. None were serious or formed any rings around the leg or arm bones and I was cleared to play golf (maybe tennis, too?).
I follow your posts closely because I have the IgG kappa light chain multiple myeloma, without any detectable M-spike,
My latest (slightly better than the prior month's) blood test results show that my kappa is quite stable at 45.9 mg/L and kappa-lambda also stable at 1.74. These figures are not much different from the 42.6 mg/L kappa and 1.7 kappa-lambda in early May 2016, 15 months ago. All this with the alternate day 15 mg Revlimid, which I am tolerating fairly well.
Your earlier posts helped me try the lower dose (from the alternate day 20 mg Revlimid) I was on till November 2015. My hematologist-oncologist reluctantly agreed and it has worked! As coachhoke seemed to have done fairly well just on 2.5 mg/day Revlimid, I would want to try a 10 mg Revlimid dose if your blood tests continue to show improvement, too.
You did write that your side effects are manageable. As to the quality of life, I hope you are able to resume almost all the activities you were able to manage when you had the long vacation from the maintenance therapy.
As to the MGUS possibility: your kappa free light chain level was 378 mg/L when you first started your Revlimid, Velcade, and dexamethasone (RVD) treatment as I found in another of your topics about complete remission (CR). I think your M-spike was 39 g/L at the time. I am not sure whether those numbers indicate MGUS. I wonder if the MSmart guidelines or other tables for staging of the multiple myeloma can help.
My kappa was around 1,100 mg/L (110 mg/dL) and rising around 10% per month at the time my RVD induction treatment began. My kappa-lambda ratio was over 186 at the time in December 2014. My hematologist-oncologist was not keen on starting my induction therapy till my bone marrow biopsy showed 30% monoclonal activity. My x-rays showed only faint lesions but all over. None were serious or formed any rings around the leg or arm bones and I was cleared to play golf (maybe tennis, too?).
I follow your posts closely because I have the IgG kappa light chain multiple myeloma, without any detectable M-spike,
My latest (slightly better than the prior month's) blood test results show that my kappa is quite stable at 45.9 mg/L and kappa-lambda also stable at 1.74. These figures are not much different from the 42.6 mg/L kappa and 1.7 kappa-lambda in early May 2016, 15 months ago. All this with the alternate day 15 mg Revlimid, which I am tolerating fairly well.
Your earlier posts helped me try the lower dose (from the alternate day 20 mg Revlimid) I was on till November 2015. My hematologist-oncologist reluctantly agreed and it has worked! As coachhoke seemed to have done fairly well just on 2.5 mg/day Revlimid, I would want to try a 10 mg Revlimid dose if your blood tests continue to show improvement, too.
You did write that your side effects are manageable. As to the quality of life, I hope you are able to resume almost all the activities you were able to manage when you had the long vacation from the maintenance therapy.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: M-spike creeping up, not on maintenance therapy
Dear K_Shash and all my multiple myeloma colleagues:
Thank you for your support through timely comments.
I had my blood test on August 28th after taking 5 mg Revlimid for 21 days and seven days rest. My latest blood test report along with results for the remaining months of 2017 are given below. The latest result it is almost at same level as last month.
My other blood results, such as creatinine, albumin, and calcium, have always been normal. My hemoglobin, RBC, MCV and MCC were always below normal range. However, this month my MCV and MCH are in normal range, and hemoglobin and RBC are in normal range since last three months or so.
As i mentioned earlier, I am extremely G6PD deficient person and after eating all things prohibited for G6PD for 68 years, I am on strict G6PD-restricted diet since last six months. I am off all vitamins, and my blood pressure has come to normal. I am not on any medicine except maintenance Revlimid. Last medicine to go was my blood pressure (BP) medicine as my BP is normal because of my diet.
I am concerned if I need to go for PET/CT scan. Maintenance dose of 5 mg Revlimid is manageable, but it is definitely not like without Revlimid. After eleven days or so, side effects such as bloating, itchy skin, sleepless night starts increasing.
Any suggestion or comments will be extremely helpful.
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Thank you.
Thank you for your support through timely comments.
I had my blood test on August 28th after taking 5 mg Revlimid for 21 days and seven days rest. My latest blood test report along with results for the remaining months of 2017 are given below. The latest result it is almost at same level as last month.
My other blood results, such as creatinine, albumin, and calcium, have always been normal. My hemoglobin, RBC, MCV and MCC were always below normal range. However, this month my MCV and MCH are in normal range, and hemoglobin and RBC are in normal range since last three months or so.
As i mentioned earlier, I am extremely G6PD deficient person and after eating all things prohibited for G6PD for 68 years, I am on strict G6PD-restricted diet since last six months. I am off all vitamins, and my blood pressure has come to normal. I am not on any medicine except maintenance Revlimid. Last medicine to go was my blood pressure (BP) medicine as my BP is normal because of my diet.
I am concerned if I need to go for PET/CT scan. Maintenance dose of 5 mg Revlimid is manageable, but it is definitely not like without Revlimid. After eleven days or so, side effects such as bloating, itchy skin, sleepless night starts increasing.
Any suggestion or comments will be extremely helpful.
Date Kappa FLC K/L ratio M-spike
(mg/dl) (g/dL)
Jan 18 7.5 4.0 1.12
Feb 20 6.6 3.5 1.25
Mar 21 8.27 4.6 1.47
Apr 20 10.20 5.96 1.48
May 17 9.29 5.60 1.63
Jun 20 13.80 7.79 2.19
Jul 27 12.00 5.58 1.82
Aug 28 12.80 6.63 1.88
Thank you.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
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