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Re: Side effects of Revlimid as Maintenance Drug
I have been on 10 mg of Revlimid since Jan, 2010. I immediately started with serious diarrhea so the dr did not increase my dosage any further. No medicine completely controls this. It has become more like IBS. I use Imodium daily but neither that or pres. meds stop it. I also have a sore tender tongue and roof of my mouth. I have to avoid hard or hot foods, but almost anything irritates it. I use Biotene gel and Orajel for some relief. My drs and dentist have eliminated thrush as a cause. I also use a compounded liquid called Magic Swizzle. I have had mild neuropathy for the past 5 months. I also experience fatigue. Considering the alternative I am still willing to stay on the Revlimid as long as I remain stable or can tolerate it.
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dubll
Re: Side effects of Revlimid as Maintenance Drug
Hannao wrote:
> Elle, I know what he means. I didn't know how to explain what I felt, but
> out of body is it!!
>
> My back aches pretty badly, and I'm now suspecting it's the REV. I can't
> prove it, but it is a known symptom. I just don't know if it's why I
> personally have it or not.
>
> During this past month I have also begun to suffer from muscle spasms as
> well as tremors. The spasms came first, then the tremors. At first I
> didn't realize I was having tremors because I figured something external
> was causing the feeling (e.g. our washer spin cycle shakes the whole
> house).
>
> But this weekend was so bad, it really frightened me. Not only that, but
> since my muscles weren't really "letting go", I'm exhausted so
> can't do much physically. Naturally that leads to depression. Let me stop
> there - I'm not feeling better.
>
> Has anyone else had this? Is is a known side effect? Is it reversible?
>
> Naturally I plan to discuss with my ONC, but I like getting input from
> people who have their own experiences because sometimes that is more
> valuable input than what is currently "known".
>
> Thanks to anyone that can help me with this.
>
> h
My husband was experiencing muscle aches and was told to drink Dill Pickle juice. He takes a couple gulps and the aches are gone! Try it! Athletes also use it for cramps.
Hope this helps,
P
> Elle, I know what he means. I didn't know how to explain what I felt, but
> out of body is it!!
>
> My back aches pretty badly, and I'm now suspecting it's the REV. I can't
> prove it, but it is a known symptom. I just don't know if it's why I
> personally have it or not.
>
> During this past month I have also begun to suffer from muscle spasms as
> well as tremors. The spasms came first, then the tremors. At first I
> didn't realize I was having tremors because I figured something external
> was causing the feeling (e.g. our washer spin cycle shakes the whole
> house).
>
> But this weekend was so bad, it really frightened me. Not only that, but
> since my muscles weren't really "letting go", I'm exhausted so
> can't do much physically. Naturally that leads to depression. Let me stop
> there - I'm not feeling better.
>
> Has anyone else had this? Is is a known side effect? Is it reversible?
>
> Naturally I plan to discuss with my ONC, but I like getting input from
> people who have their own experiences because sometimes that is more
> valuable input than what is currently "known".
>
> Thanks to anyone that can help me with this.
>
> h
My husband was experiencing muscle aches and was told to drink Dill Pickle juice. He takes a couple gulps and the aches are gone! Try it! Athletes also use it for cramps.
Hope this helps,
P
-
Phyllis V
Re: Side effects of Revlimid as Maintenance Drug
hi I've had multiple myeloma for the past three years, started with pain in my hip and back.
after six months my hip broke dramatically while i was visiting john of god in brazil.
i was then in a brazil hospital, where they did hip surgery and i lost kidney function.
i was a mess, the pain was awful non stop , i couldn't have the sheets touch my skin.
when i was transferred to calgary i was in stage three.
now three years laters i have undergone Velcade and dex then a stem cell transplant
and now Revlimid for maintenance. I still have to go to dyalisis three times a week which has been the worse part..
i want to say at one point i was on gapapetin and it was really bad for side effects and awful tremors.
i get very bad muscle spasm now, i thought it was due to the dialysis but perhaps its from rev.
i havent noticed any slurring of speech. i try to keep my mind active. i do notice my memory is
i am bit more forgetful. however i am also menopause.
symptoms of depression can also cause poor memory . its easy to get depressed.
ifor myself i attempt to keep a positive attitude, feel my feelings, if i am mad I'm mad, or sad,
or happy. i have put some goals in my life. as i feel like the last three years i have
barely been living. the fear is always there. when i make plans i think but will i be here.
i decided to make plans any ways and now planning to move to be be closer to friends and get back in life, provided i have the energy.. also pray for more research and cures for multiple myeloma.
I SAW they had a new treatment using modified ecstasy ..... sounds like a trial i would sign up for.god bless everyone with this cross to bear and there families and friends that accept and love us diane
Ricardo wrote:
> Hi mayungfer,
>
> I wonder if the problem is the gabapentin that your husband is taking for
> peripheral neuropathy. Gabapentin is the generic name for the brand name
> drug Neurontin. If you read up on it, you'll find out that it originally
> was developed as a treatment for epilepsy. Eventually, it started to be
> prescribed to treat pain related to shingles and peripheral neuropathy.
>
> Now, if you ask me, it shouldn't be surprising that a drug designed to
> treat epilepsy sometimes has side effects related to concentration and
> other mental functions. And, in fact, here is what the Wikipedia article
> on the drug says about its side effects:
> prescribing information:
> http://www.pfizer.com/files/products/uspi_neurontin.pdf.
> If you're like me, you'll probably have to look up the meaning of some of
> the words. But, when I read through the list of side effects, there were a
> lot of things like sleepiness, dizziness and tremor that make it clear that
> this drug can influence how your husband's "wheels go around" (to
> quote sylvia).
>
> Maybe your husband should switch to something else to treat any pain
> related to his PN.
>
> Good luck!
after six months my hip broke dramatically while i was visiting john of god in brazil.
i was then in a brazil hospital, where they did hip surgery and i lost kidney function.
i was a mess, the pain was awful non stop , i couldn't have the sheets touch my skin.
when i was transferred to calgary i was in stage three.
now three years laters i have undergone Velcade and dex then a stem cell transplant
and now Revlimid for maintenance. I still have to go to dyalisis three times a week which has been the worse part..
i want to say at one point i was on gapapetin and it was really bad for side effects and awful tremors.
i get very bad muscle spasm now, i thought it was due to the dialysis but perhaps its from rev.
i havent noticed any slurring of speech. i try to keep my mind active. i do notice my memory is
i am bit more forgetful. however i am also menopause.
symptoms of depression can also cause poor memory . its easy to get depressed.
ifor myself i attempt to keep a positive attitude, feel my feelings, if i am mad I'm mad, or sad,
or happy. i have put some goals in my life. as i feel like the last three years i have
barely been living. the fear is always there. when i make plans i think but will i be here.
i decided to make plans any ways and now planning to move to be be closer to friends and get back in life, provided i have the energy.. also pray for more research and cures for multiple myeloma.
I SAW they had a new treatment using modified ecstasy ..... sounds like a trial i would sign up for.god bless everyone with this cross to bear and there families and friends that accept and love us diane
Ricardo wrote:
> Hi mayungfer,
>
> I wonder if the problem is the gabapentin that your husband is taking for
> peripheral neuropathy. Gabapentin is the generic name for the brand name
> drug Neurontin. If you read up on it, you'll find out that it originally
> was developed as a treatment for epilepsy. Eventually, it started to be
> prescribed to treat pain related to shingles and peripheral neuropathy.
>
> Now, if you ask me, it shouldn't be surprising that a drug designed to
> treat epilepsy sometimes has side effects related to concentration and
> other mental functions. And, in fact, here is what the Wikipedia article
> on the drug says about its side effects:
Gabapentin's mostYou can read more about the side effects the drug has in the
> common side effects in adult patients include dizziness, drowsiness, and
> peripheral edema (swelling of extremities); these mainly occur at higher
> doses, in the elderly. Also, children 3–12 years of age were observed to
> be susceptible to mild-to-moderate mood swings, hostility, [u]concentration
> problems[/u], and hyperactivity. ... Gabapentin should be used carefully
> in patients with renal impairment due to possible accumulation and
> toxicity. [underlining added]
>
> prescribing information:
> http://www.pfizer.com/files/products/uspi_neurontin.pdf.
> If you're like me, you'll probably have to look up the meaning of some of
> the words. But, when I read through the list of side effects, there were a
> lot of things like sleepiness, dizziness and tremor that make it clear that
> this drug can influence how your husband's "wheels go around" (to
> quote sylvia).
>
> Maybe your husband should switch to something else to treat any pain
> related to his PN.
>
> Good luck!
-
diane
Re: Side effects of Revlimid as Maintenance Drug
I've been on Revlimid trial now for 10 weeks following SCT. Everything was ok until dose was upped from 10mg to 15mg daily. I initially experienced diarrhea but it sorted itself out without any intervention. Currently experiencing a nasty itchy rash which is driving me nuts. Fortunately I'm seeing my hematologist on Tuesday so I'll see what action he takes.
Take Care
Take Care
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Boz - Name: Steve
- Who do you know with myeloma?: My Self
- When were you/they diagnosed?: 23rd Dec 2010
- Age at diagnosis: 45
Re: Side effects of Revlimid as Maintenance Drug
all of you mention Revlimid and your other cancer drugs but no one mentions taking low dose aspirin to hopefully prevent deep venous thrombosis which is not just a significant risk with thalidomide but also Revlimid; hopefully this is just an oversight as it is important prevention
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bond007
Re: Side effects of Revlimid as Maintenance Drug
I guess I've been luck. I just start 25 mg 2 weeks ago in a clinical trial at Johns Hopkins. Had the rash, but it went away after 2 days (took benadryl for 4). No GI issues yet. I was advised to take the low dose asprin so have added it to the rest of my meds. I already had lots of aches and pain, but haven't felt any real increase yet.
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mikeindc
Re: Side effects of Revlimid as Maintenance Drug
I was diagnosed Feb 2010 Went through chemo, rev, and proceeded to Stem cell June 2010 I am on maintainence Rev cost is 10,000.00 for 28 I am fortunate that my insurance covers this with a small copay for me... Currantly I am having issues with cramps in my body all over, and tongue issues, I have severe drymouth and deal with that with over the counter cures. Does anyone know how this drug is covered under the medicare drug program
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Barty
cost
In 2011 L&LS provided a 1 time 6 month grant for my Revlimid. This put me in catastrophic coverage and I only paid $100 per month for the rest of the year. At my oncologists suggestion I looked into the cost in Canada for 2012. British Columbia was the best place. I noticed the source is an Indian company called Natco. I ended up ordering it from India which makes the only generic for it. They are expected to be the generic provider when the patent expires on Revlimid. My cost was $815 for 90 pills which includes shipping and handling. The side effects I have are: sore mouth, tinnitus, diarrhea, neuropathy.
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dubll2011
Re: Side effects of Revlimid as Maintenance Drug
I started 10mg 21/7 maintenance in Jan. and moved to 15mg this Feb.. I am on no other chemo drugs just the standards for avoiding shingles and pneumonia, vitamin D, and low dose aspirin for clotting risk on Rev. I am on bone juice once monthly again, the name slips me due to the return of chemo brain.
My SCT was Sept. 21 and my healthy blood numbers returned quikly.
I have minor tingling in my finger tips and my blood numbers dipped in the Feb. tests but still in healthy regions. I am working very hard and this may effect my energy with the lower blood numbers, but I am more tired this week. It is not like chemo fatigue but a problem. I am also enjoying a return to chemo brain. My memory is poor again and my level of thought is slightly impaired. I've had no rash, infections or colds, and evidence of clotting yet.
I am blessed in that my tolerance to chemo and the SCT was very high compared to other folks in the same boat. I worked through treatment except for three weeks for the transplant. Even then I was on the phone and emailing customers. I'm an oilfield salesman so my work includes lots of computer time but I do travel regularly in remote places.
My SCT was Sept. 21 and my healthy blood numbers returned quikly.
I have minor tingling in my finger tips and my blood numbers dipped in the Feb. tests but still in healthy regions. I am working very hard and this may effect my energy with the lower blood numbers, but I am more tired this week. It is not like chemo fatigue but a problem. I am also enjoying a return to chemo brain. My memory is poor again and my level of thought is slightly impaired. I've had no rash, infections or colds, and evidence of clotting yet.
I am blessed in that my tolerance to chemo and the SCT was very high compared to other folks in the same boat. I worked through treatment except for three weeks for the transplant. Even then I was on the phone and emailing customers. I'm an oilfield salesman so my work includes lots of computer time but I do travel regularly in remote places.
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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 as Maintenance Drug
I was diagnosed in 2006 at age 45 and did the whole chemo and six months later stem cell transplant. Relapse in October 2011 so I started Revlimid 25mg 21 days on and 7 days off in November. Muscle stiffness, tired all the time, cramping, but no sores and no rash. I to get depressed and I think its normal and why wouldn't anyone be depressed with any form of cancer. I do feel like i'm alone with this condition until I read all of these and the age you all are.
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carla
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