My mother was diagnosed with multiple myeloma stage 3A in MAY 2011.Had 4 Bone lesions(Skull,ribs,pelvis,scapula) and higher Betamicroglobin. She underwent initial therapy of Revlimid 25mG + Dexamethasone.She also underwent some radiotherapy treatment for one of bone lesion present in pelvis. After Initial therapy, her BMA is negative showing no cancer cells.Planned to undergo HSCT, but due to failure of harvesting sufficient stem cells, we left the option and undergone conventional treatment of Revlimid maintainence of 10mG for past 2 months.
We are experiencing some unexplained problems as sideeffects. Her legs swell after the travel.Her WBC counts dropped drastically to 2.4. Doctors are thinking of decreasing Revlimid maintenance to 5mg..Did anybody experienced same problems? How safe is to continue to limited maintenance with conventional treatment
Forums
Re: Side effects of Revlimid
vijayabharathi_c:
I will leave to others to give you feedback on the side effects of Revlimid. Regarding stem cell mobilization and collection, there are agents that can be used to stimulate and "round up" the stem cells. Have you talked to your mom's doctors about them? Also I saw an article on the Beacon by Lori Puenti a while ago. It describes a novel way to potentially increase the number of stem cells in the blood. Hope it helps and good luck to your mom.
http://goo.gl/xZhBv
Ben
I will leave to others to give you feedback on the side effects of Revlimid. Regarding stem cell mobilization and collection, there are agents that can be used to stimulate and "round up" the stem cells. Have you talked to your mom's doctors about them? Also I saw an article on the Beacon by Lori Puenti a while ago. It describes a novel way to potentially increase the number of stem cells in the blood. Hope it helps and good luck to your mom.
http://goo.gl/xZhBv
Ben
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Ben S.
Re: Side effects of Revlimid
vijayabharathi_c,
I have been on carfilzomib, Revlimid, and dexamthasone (CRD) for 11 cycles. The first 8 cycles, I received the carfilzomib on days 1,2,8,9,15,16 of each cycle. Since then, I only receive it on days 1,2,15,16. I receive the Revlimid on days 1-21 of each cycle, and dexamethasone on days 1,8,15,22 of each cycle. The only side effects I've had are slight nausea and fatigue. The nausea typically lasts for a couple days following infusion, so I'm not sure that can be completely attributed to the Revlimid. The fatigue generally hits a couple days after treatment when the dexamethasone wears off. Fatigue is one of the noted side effects for Revlimid. I also take a baby aspirin each morning due the minimal risk of blood clots from Revlimid.
As for the affect of Revlimid on stem cell collection, I just posted something about that in the topic "Variance in M-Spike and Free Kappa Light Chains" under the Multiple Myeloma forum. You can read about it there.
Kevin J
I have been on carfilzomib, Revlimid, and dexamthasone (CRD) for 11 cycles. The first 8 cycles, I received the carfilzomib on days 1,2,8,9,15,16 of each cycle. Since then, I only receive it on days 1,2,15,16. I receive the Revlimid on days 1-21 of each cycle, and dexamethasone on days 1,8,15,22 of each cycle. The only side effects I've had are slight nausea and fatigue. The nausea typically lasts for a couple days following infusion, so I'm not sure that can be completely attributed to the Revlimid. The fatigue generally hits a couple days after treatment when the dexamethasone wears off. Fatigue is one of the noted side effects for Revlimid. I also take a baby aspirin each morning due the minimal risk of blood clots from Revlimid.
As for the affect of Revlimid on stem cell collection, I just posted something about that in the topic "Variance in M-Spike and Free Kappa Light Chains" under the Multiple Myeloma forum. You can read about it there.
Kevin J
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Side effects of Revlimid
Hi
Thanks for the suggestions..
Day after we found low WBC of 2.4 , doctors provide a injection that increased her WBC to 4,6.This happened a week before.. But today when we checked WBC it again decreased to 2.3.. We are not taking Revlimid for past 20 days.. We are still mysterious of the happenings..
Thanks for the suggestions..
Day after we found low WBC of 2.4 , doctors provide a injection that increased her WBC to 4,6.This happened a week before.. But today when we checked WBC it again decreased to 2.3.. We are not taking Revlimid for past 20 days.. We are still mysterious of the happenings..
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Vijayabharathi
Re: Side effects of Revlimid
Vijayabharathi,
What type of injection did she receive? I received neupogen injections early on to boost WBC (originally below 2.0) and neutrophils, but the effects were temporary and both counts typically dropped back again until my treatment started bringing all my counts up. Throughout my treatment though my WBC tends to vary from about 2.5-3.0 at the beginning of a cycle to 4.0-4.5 by the third week of the cycle. Basically, my WBC increases over the three weeks I'm receiving CRD, then drops back down during my week off. This is only one point of reference, but based on my trends, I could see where the WBC could drop over the three weeks your mother has been off the Revlimid.
What type of injection did she receive? I received neupogen injections early on to boost WBC (originally below 2.0) and neutrophils, but the effects were temporary and both counts typically dropped back again until my treatment started bringing all my counts up. Throughout my treatment though my WBC tends to vary from about 2.5-3.0 at the beginning of a cycle to 4.0-4.5 by the third week of the cycle. Basically, my WBC increases over the three weeks I'm receiving CRD, then drops back down during my week off. This is only one point of reference, but based on my trends, I could see where the WBC could drop over the three weeks your mother has been off the Revlimid.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Side effects of Revlimid
Hi
It is still mysterious that WBC is unstable.. In 4th Feb WBC Count is 3.2 which is better than previous count which is 2.4. Her yesterday WBC count showed again 2.7.. Its unstable, she is not taking Revlimid for nearly a month.. she didnt take maintenance therapy for nearly a month .. will it cause problem?
Vijayabharathi C
Kevin J wrote:
> Vijayabharathi,
> What type of injection did she receive? I received neupogen injections
> early on to boost WBC (originally below 2.0) and neutrophils, but the
> effects were temporary and both counts typically dropped back again until
> my treatment started bringing all my counts up. Throughout my treatment
> though my WBC tends to vary from about 2.5-3.0 at the beginning of a cycle
> to 4.0-4.5 by the third week of the cycle. Basically, my WBC increases over
> the three weeks I'm receiving CRD, then drops back down during my week off.
> This is only one point of reference, but based on my trends, I could see
> where the WBC could drop over the three weeks your mother has been off the
> Revlimid.
It is still mysterious that WBC is unstable.. In 4th Feb WBC Count is 3.2 which is better than previous count which is 2.4. Her yesterday WBC count showed again 2.7.. Its unstable, she is not taking Revlimid for nearly a month.. she didnt take maintenance therapy for nearly a month .. will it cause problem?
Vijayabharathi C
Kevin J wrote:
> Vijayabharathi,
> What type of injection did she receive? I received neupogen injections
> early on to boost WBC (originally below 2.0) and neutrophils, but the
> effects were temporary and both counts typically dropped back again until
> my treatment started bringing all my counts up. Throughout my treatment
> though my WBC tends to vary from about 2.5-3.0 at the beginning of a cycle
> to 4.0-4.5 by the third week of the cycle. Basically, my WBC increases over
> the three weeks I'm receiving CRD, then drops back down during my week off.
> This is only one point of reference, but based on my trends, I could see
> where the WBC could drop over the three weeks your mother has been off the
> Revlimid.
-
Vijayabharathi
Re: Side effects of Revlimid
I'm on Revlimid maint. of 15mg 21 on 7 off. So far my side effects have been minimal. My blood numbers did ease down but still in a healthy range. I was diagnosed a year ago at stage 1. I've since had a SCT in Sept. and am in official remission as of late December. I hope my experience without the complication of active chemo meds will help.
My warnings did include watching for swelling due to a risk of blood clotting. I experienced minor stool softening at 10mg and constipation at 15mg (don't you just love these drugs it reminds me of Robin Williams routine about anal leakage as an effect not a side effect!). The major effect is the return of chemo brain. My memory stinks and I'm back to when I was on active chemo in this regard. It is quite manageable. I also have minor tingling in my finger tips.
I was strengthening up quickly and have noted I'm prone to tiredness again. I'm not sure it is Revlimid or the increased activity as I return to a full work schedule. It is not like chemo fatigue and I suspect my lower numbers at play here.
Please note I have enjoyed high tolerance for all drugs and the transplant. Maybe my misspent 80's prepared me for cancer treatment! Except for three weeks off for the transplant I worked through a year of treatment in my oilfield sales territory (at least half time or better).
My warnings did include watching for swelling due to a risk of blood clotting. I experienced minor stool softening at 10mg and constipation at 15mg (don't you just love these drugs it reminds me of Robin Williams routine about anal leakage as an effect not a side effect!). The major effect is the return of chemo brain. My memory stinks and I'm back to when I was on active chemo in this regard. It is quite manageable. I also have minor tingling in my finger tips.
I was strengthening up quickly and have noted I'm prone to tiredness again. I'm not sure it is Revlimid or the increased activity as I return to a full work schedule. It is not like chemo fatigue and I suspect my lower numbers at play here.
Please note I have enjoyed high tolerance for all drugs and the transplant. Maybe my misspent 80's prepared me for cancer treatment! Except for three weeks off for the transplant I worked through a year of treatment in my oilfield sales territory (at least half time or better).
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Canuck_ Bob
Re: Side effects of Revlimid
Vijayabharathi,
I agree it's odd that it has continued to vary while off the Revlimid. I would have expected it to decrease for a bit then level off. Has she had any illnesses during this period? I had a sinus infection for 2-3 weeks in December and my WBC spiked during this time period while trying to battle the infection.
Canuck_ Bob,
I'm like you, side effects have been minimal and very manageable. I like your reference to the Robin Williams routine. I always like it when you get the warnings that say you could expect exact opposites (diarrhea or constipation, loss of appetite or unexplained weight gain, infertility or pregnancy, immortality or death, etc.)
I agree it's odd that it has continued to vary while off the Revlimid. I would have expected it to decrease for a bit then level off. Has she had any illnesses during this period? I had a sinus infection for 2-3 weeks in December and my WBC spiked during this time period while trying to battle the infection.
Canuck_ Bob,
I'm like you, side effects have been minimal and very manageable. I like your reference to the Robin Williams routine. I always like it when you get the warnings that say you could expect exact opposites (diarrhea or constipation, loss of appetite or unexplained weight gain, infertility or pregnancy, immortality or death, etc.)
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Side effects of Revlimid
Kevin, I think dark humor is an important tool in cancer therapy. The confusing nature of side effects is reinforcement that cancer treatment and response is completely individual.
I had zero nausea except when they infused my stem cells I barfed like a drunken sailor on leave!
Vijay. my test results did show a drop of numbers and sitting for any length of time is painful. In my case I have arthritis and had two hips put in in my 40s. I also have a lesion close to my hip transplanrt site. I have no evidence of blood clotting but I would sure be watching your Mom closely. I'm younger and dx at stage 1 so I hope my experience is of some help.
I am new to maintenance but have received reports from folks who had tolerance issues with Rev and short term cessation did not affect them. It turns out many report not using Rev maintenance and experiencing stable remission responses.
The WBC issue is quite a mystery, hope it gets resolved soon.
I had zero nausea except when they infused my stem cells I barfed like a drunken sailor on leave!
Vijay. my test results did show a drop of numbers and sitting for any length of time is painful. In my case I have arthritis and had two hips put in in my 40s. I also have a lesion close to my hip transplanrt site. I have no evidence of blood clotting but I would sure be watching your Mom closely. I'm younger and dx at stage 1 so I hope my experience is of some help.
I am new to maintenance but have received reports from folks who had tolerance issues with Rev and short term cessation did not affect them. It turns out many report not using Rev maintenance and experiencing stable remission responses.
The WBC issue is quite a mystery, hope it gets resolved soon.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Side effects of Revlimid
Hi Bob,Kevin
My mother WBC count improved after the Revlimid maintainence is stopped. She was having wbc count of 4.5 during Feb last week.. Doctor asked us to restart the Revlimid 5mg maintainence.. we started from the March 1st week.. after 1 week we took TC count WBC dropped again to 3.7.. Doctors asked to stop Revlimid immediately again.. we took serum electrophoresis 2 weeks back to check any M-Spike.. But everything is normal and she is healthy.. doctors advised to wait and watch for another 1 month.. Still its mystery of getting myelosupression due to this maintainence theraphy
Regards
Vijayabharathi C
Canuck Bob wrote:
> Kevin, I think dark humor is an important tool in cancer therapy. The
> confusing nature of side effects is reinforcement that cancer treatment and
> response is completely individual.
>
> I had zero nausea except when they infused my stem cells I barfed like a
> drunken sailor on leave!
>
> Vijay. my test results did show a drop of numbers and sitting for any
> length of time is painful. In my case I have arthritis and had two hips
> put in in my 40s. I also have a lesion close to my hip transplanrt site.
> I have no evidence of blood clotting but I would sure be watching your Mom
> closely. I'm younger and dx at stage 1 so I hope my experience is of some
> help.
>
> I am new to maintenance but have received reports from folks who had
> tolerance issues with Rev and short term cessation did not affect them. It
> turns out many report not using Rev maintenance and experiencing stable
> remission responses.
>
> The WBC issue is quite a mystery, hope it gets resolved soon.
My mother WBC count improved after the Revlimid maintainence is stopped. She was having wbc count of 4.5 during Feb last week.. Doctor asked us to restart the Revlimid 5mg maintainence.. we started from the March 1st week.. after 1 week we took TC count WBC dropped again to 3.7.. Doctors asked to stop Revlimid immediately again.. we took serum electrophoresis 2 weeks back to check any M-Spike.. But everything is normal and she is healthy.. doctors advised to wait and watch for another 1 month.. Still its mystery of getting myelosupression due to this maintainence theraphy
Regards
Vijayabharathi C
Canuck Bob wrote:
> Kevin, I think dark humor is an important tool in cancer therapy. The
> confusing nature of side effects is reinforcement that cancer treatment and
> response is completely individual.
>
> I had zero nausea except when they infused my stem cells I barfed like a
> drunken sailor on leave!
>
> Vijay. my test results did show a drop of numbers and sitting for any
> length of time is painful. In my case I have arthritis and had two hips
> put in in my 40s. I also have a lesion close to my hip transplanrt site.
> I have no evidence of blood clotting but I would sure be watching your Mom
> closely. I'm younger and dx at stage 1 so I hope my experience is of some
> help.
>
> I am new to maintenance but have received reports from folks who had
> tolerance issues with Rev and short term cessation did not affect them. It
> turns out many report not using Rev maintenance and experiencing stable
> remission responses.
>
> The WBC issue is quite a mystery, hope it gets resolved soon.
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Anonymous
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