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Re: Side effects of Revlimid as Maintenance Drug
Hi All...I just wanted to comment on the problems with the back strength. I am sure that the treatments with the bisphosphonate drug Aredia have strengthened my bones. The compression fractures I had took a long time to heal, but now I can function quite normally, and walk about 5 - 6 km (3 miles) without much problem. if I go farther than that, or up very steep hills, I get a lot of pain afterwards in my hips and legs. Sometimes it's worth it though, and that's where the Tylenol comes in! But now I am in the somewhat odd position of having to really think about going on long hikes etc. since I just know I will pay for it for a few days afterwards! Don't want to join a hiking club, for example, even though that was on my 'wish list' as I had more time available, and sometimes it seems like everyone I know is in one. But I am so much better now than I was three years ago that I really can't complain! I just try to pace myself better now...it's as if my body aged a lot due to the myeloma, but actually I think it is just coping with the aftermath of injuries at the present time. Does that make sense to you? And it's the same with weight lifting...which I think may be more dangerous...if I get all enthusiastic at our local gym and start lifting upwards of 15-20 lbs., or putting more weight on those circuit machines than the minimum, I really feel it in my back afterwards. I don't want to get any more injuries, so have to respect that. It's kind of funny at the gym...I put all the weights on the machines to the lowest, and then all these strong body builders, both male and female, come by and up the weights again. If they are doing 'reps' I wonder what they think! I have explained this to a few friends there, but most people just see me as this rather weak female trying to work out! I am definitely in with the 'osteoporosis' people who lift weights just to keep their bone strength up, and are taking other bone drugs, such as Fosamax.
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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: Side effects of Revlimid as Maintenance Drug
This is the 3rd time I've been on Rev since being diagnosed in Aug.'06.
Side effects are: itchy scalp and face but mostly scalp / I also had some sores on my tongue but they appear to be getting better. Also noticed leg, foot and arm cramps.
Rev was added to my weekly dose of Velcade and 20mg of Dex./ with Zometa once a month.
I was put back on the Rev because my S PEP / M-Spike had risen to 1.6 g/dl. Today will be day 18 of 21 for the Revlimid 25 mg. Another apparent side effect is the reduction in platelets .
I will have a CBC tomorrow keeping a close eye on the platelet situation.
Some people mentioned the cost of Rev and it certainly is expensive but there are non profit organizations such as; the Patient Access Network and the Chronic Disease Fund that will help with co-pays.
Side effects are: itchy scalp and face but mostly scalp / I also had some sores on my tongue but they appear to be getting better. Also noticed leg, foot and arm cramps.
Rev was added to my weekly dose of Velcade and 20mg of Dex./ with Zometa once a month.
I was put back on the Rev because my S PEP / M-Spike had risen to 1.6 g/dl. Today will be day 18 of 21 for the Revlimid 25 mg. Another apparent side effect is the reduction in platelets .
I will have a CBC tomorrow keeping a close eye on the platelet situation.
Some people mentioned the cost of Rev and it certainly is expensive but there are non profit organizations such as; the Patient Access Network and the Chronic Disease Fund that will help with co-pays.
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Joe D
Re: Side effects of Revlimid as Maintenance Drug
I was diagnosed Stage 1, 2 years ago, at age 70, and started on Revlimid 25 mg x 21 days/7 days off, in 28 day cycles on a clinical trial. Also taking Dexamethasone 40 mg weekly and full-dose aspirin daily. I had stem cell harvest at 2 months but no transplant to date. I have had many of the same side effects reported here - recurring cycles of GI pain, diarrhea, upset, fluid retention, loss of appetite, very bad taste in mouth, extreme fatigue, loss of muscle and strength, and pain in back. Some things that have helped -- something called Body Mint reduced bad taste. Supplements of calcium, magnesium, potassium helped muscle spasms. Nothing has helped the GI symptoms; stomach ache always comes back. Nothing helps the jitters and emotional lability from steroids. After dose reduction to 15 mg of Revlimid daily x21/7 days off, I have some improvement in fatigue but still a lot of the side effects. Doctors seem to not care unless you are toxic - not just symptomatic. No choice but to see this as better than the alternative. But you feel alone and people get tired of hearing you talk about side effects. They think that if the disease is being managed, you should just be grateful. Perhaps. Now that my M protein and IgG have started to very slowly increase, I feel more apprehension than gratitude. It's a white water ride and you never now what is around the next turn.
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nanl
Re: Side effects of Revlimid as Maintenance Drug
I was on Revlimid for about two years as a maintenance drug, following a successful stem cell transplant. It knocked my red and white blood counts down to the point that I could only take it for two weeks, followed by three or four weeks off. I also experienced the itching, particularly in my skip, for the first couple of days each cycle. In fact, that was how I knew I was responding anymore -- my blood counts came back up after two weeks and the itching was a lot less.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Side effects of Revlimid as Maintenance Drug
Been on maintenance Rev (10mg, daily) for five months now and I have the fatigue and constipation as my only side effects. Life is simple now, I wake up hoping that I stay awake and poop today! I keep telling myself its better than the alternative. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Side effects of Revlimid as Maintenance Drug
Hi Jerry. I had constipation from thalidomide, which I took as my original treatment with dexa, but not from Revlimid. Myralax was wonderful.
Dana
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Side effects of Revlimid as Maintenance Drug
I found for mouth sores... L-lysine in powder form from the health food store. After tooth brushing in the evening I use about 1/4 teaspoon in some water rinse it around in my mouth and then swallow it. It has worked really well.
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Fred Paul
Re: Side effects of Revlimid as Maintenance Drug
I was diagnosed 20 months ago . . .my M-spike was 4.35. After 15 months of RVD, sometimes overlayed with Cytoxan and then Doxil, I had the stem cell transplant at BW/DF in Boston this summer. 100 days post-transplant I resumed the R(15mg)VD; it has now been 5 weeks--I don't remember the RVD "kicking my butt" this severely pre-transplant. Doc says I can go to R 10mgs, starting next week.
Side effects: extreme fatigue/exhaustion, mild-to-moderate finger and toe neuropathy (especially within 1-2 days of Vel, constipation-worst during the period my body is being ravaged by both R and V at the same time), itchy scap, slightly more irritable. And chemo brain--it's not at 100% both analytically and in response time.
Antidotes:
-I don't feel exhausted or fatigued while sleeping-ha! So, I sleep 9-10 hours and try to nap 1/2-3/4 hour once or twice/day. "They" say drink lots of fluid, so I do, about 75 oz/day--not sure it helps with the fatigue, though; however, on the day I sat 1/1/2 hrs for 500cc of saline it did seem to give me a little relief.
-Dr. R in Boston said rubbing Olbas ointment on fingers and toes should help--i do rub occasionally, but I'm unconvinced.
-while on RVD I always take at least 100mgs of Ducosate Sulfate, frequently more. Often I add Miralax (about 1/4 tsp in the am--more if necessary). If I haven't been able to eliminate for 2 days, I go right to the Dulcolax suppositories--get relief in under 1 hour--it sure beats hemorrhoids and a bloody rear!
-I think I get some relief from itchy scalp with 1 reg Claritan in the am and 1 Benadrly at bedtime.
-re the other symptoms, I do my best to keep a positive disposition: go to the movies, Netflix/Amazon, listen to my fav music, talk to friends.
Jan
Side effects: extreme fatigue/exhaustion, mild-to-moderate finger and toe neuropathy (especially within 1-2 days of Vel, constipation-worst during the period my body is being ravaged by both R and V at the same time), itchy scap, slightly more irritable. And chemo brain--it's not at 100% both analytically and in response time.
Antidotes:
-I don't feel exhausted or fatigued while sleeping-ha! So, I sleep 9-10 hours and try to nap 1/2-3/4 hour once or twice/day. "They" say drink lots of fluid, so I do, about 75 oz/day--not sure it helps with the fatigue, though; however, on the day I sat 1/1/2 hrs for 500cc of saline it did seem to give me a little relief.
-Dr. R in Boston said rubbing Olbas ointment on fingers and toes should help--i do rub occasionally, but I'm unconvinced.
-while on RVD I always take at least 100mgs of Ducosate Sulfate, frequently more. Often I add Miralax (about 1/4 tsp in the am--more if necessary). If I haven't been able to eliminate for 2 days, I go right to the Dulcolax suppositories--get relief in under 1 hour--it sure beats hemorrhoids and a bloody rear!
-I think I get some relief from itchy scalp with 1 reg Claritan in the am and 1 Benadrly at bedtime.
-re the other symptoms, I do my best to keep a positive disposition: go to the movies, Netflix/Amazon, listen to my fav music, talk to friends.
Jan
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Yan
Re: Side effects of Revlimid as Maintenance Drug
I has an auto transplant 15 months ago and started Revlimid maintenance at 100 days. My most troubling side effect is incredible muscle stiffness and nighttime cramping. Have found relief with daily exercise and stretching but still find that getting up from a chair after sitting for ten minutes is tough secondary to stiffness. Fortunately this resolves in 2-3 minutes. I have no spine lesions and had only one hip lesion which is now gone. My symptoms improve dramatically on my Revlimid week off (doing 10 my 21 days on/7 off) so i feel certain it is a side effect of the medication.
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Hanna
Re: Side effects of Revlimid as Maintenance Drug
Hi Hanna. Hopefully I can help you with your cramping issues when on Revlimid.I am on the Rev too and initially the cramping was terrible, especially in the hands and calves. Then I was told at a Myeloma Support Group meeting that drinking Indian Tonic Water helps lessen the cramping. And since drinking half a glass before bed, which is shortly after taking my Rev tablet, I have had no issues at all with cramps.I also have a glass of 1/2 Tonic,1/2 water next to my bed which I sip on if I wake during the night. The Tonic must have quinine in it as this is the ingredient that stops the cramps. It's up to you if you put a dash of gin in with it too Hanna!
Cheers, and I hope my cure works for you. Let me know how you get on.
Cheers, and I hope my cure works for you. Let me know how you get on.
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bulldog32 - Name: Peter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 59
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