I've been on low dose Revlimid (10mg/day) and dex (8mg/wk) for about 8 weeks now after my transplant 6 months ago. I've noticed that I tend to dream a lot more than I normally do when I'm not taking Revlimid / dex. The dreams tend to be more bizarre than usual. I wonder if I just notice my dreams more because Revlimid doesn't allow me to get into a deep sleep.
I take Revlimid at night. Perhaps I should switch to taking it earlier in the day?? Maybe that would help.
Anyway, has anyone else noticed that they dream more when using Revlimid?
Forums
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Side effects of Revlimid as maintenance drug
Wayne K; Coach Hoke:
May 2013, after stem cells collected in March 2013, I re-started Revlimid and Zometa. A massive dose of Cytoxan, on top of the Cell stimulators, tore me up, during that process.( Aphoresis)
I take 10 mg Revlimid daily ....and just last month stopped the monthly Zometa, after 22 months.
I take the 10 mg Revlimid daily (28 days Rx) with No break.
I noted on the Zometa days I had nauseau, aches, cramps, GERD, extra fatigue and flu like symptoms--which passed after 5-8 days, gradually. Brain fog in there, too.
WBC/RBC, etc "recovered" generally in that same time frame.
M spike is .01 / .02 most months. SPEP is also good, low, and with a proper ratios.
Velcade tore me up during Induction ( Velcade and Dex).
MD allowed me to take DEX with Revlimid or pass...I passed, as long as my numbers bounced back each month. They did.
I did get low on a few numbers ( creatinine- Kidney)...such that Zometa had to be held for a couple of days to a week. Otherwise, Zometa went off without a hitch.
Constipation ( Moderate) and fatigue were encountered with both. (Eat Lots of fruit & Veggies)
On Zometa days I was extra tired--day after administration and for 7-8 days later...slowly getting stronger.
Weekends I slept more--especially on the heels of Zometa infusions.( Usually Thursdays or Fridays)
It indeed got better as time went along--for both Revlimid and Zometa.
I ran across a chart someone had ginned up, that showed Blood cell recovery following R & Z administrations. It showed the deepest dips were in Months 2-3...with a steady improvement/ monthly recovery, thereafter.
That was pretty much my overall experience--except for a respiratory infection in Feb' 14 --when I was placed on Prolosone (steroids) and Antibiotics.
I went on Loop Diuretics for awhile, as I fluid filled due to the steroids.( Furosemide)
Good luck.
PS--PLAIN OLD UNSALTED Saltines really kept my tummy acid / Nauseau down---but watch the sodium! ( Unsalted Saltines is redundant--excuse me !)
May 2013, after stem cells collected in March 2013, I re-started Revlimid and Zometa. A massive dose of Cytoxan, on top of the Cell stimulators, tore me up, during that process.( Aphoresis)
I take 10 mg Revlimid daily ....and just last month stopped the monthly Zometa, after 22 months.
I take the 10 mg Revlimid daily (28 days Rx) with No break.
I noted on the Zometa days I had nauseau, aches, cramps, GERD, extra fatigue and flu like symptoms--which passed after 5-8 days, gradually. Brain fog in there, too.
WBC/RBC, etc "recovered" generally in that same time frame.
M spike is .01 / .02 most months. SPEP is also good, low, and with a proper ratios.
Velcade tore me up during Induction ( Velcade and Dex).
MD allowed me to take DEX with Revlimid or pass...I passed, as long as my numbers bounced back each month. They did.
I did get low on a few numbers ( creatinine- Kidney)...such that Zometa had to be held for a couple of days to a week. Otherwise, Zometa went off without a hitch.
Constipation ( Moderate) and fatigue were encountered with both. (Eat Lots of fruit & Veggies)
On Zometa days I was extra tired--day after administration and for 7-8 days later...slowly getting stronger.
Weekends I slept more--especially on the heels of Zometa infusions.( Usually Thursdays or Fridays)
It indeed got better as time went along--for both Revlimid and Zometa.
I ran across a chart someone had ginned up, that showed Blood cell recovery following R & Z administrations. It showed the deepest dips were in Months 2-3...with a steady improvement/ monthly recovery, thereafter.
That was pretty much my overall experience--except for a respiratory infection in Feb' 14 --when I was placed on Prolosone (steroids) and Antibiotics.
I went on Loop Diuretics for awhile, as I fluid filled due to the steroids.( Furosemide)
Good luck.
PS--PLAIN OLD UNSALTED Saltines really kept my tummy acid / Nauseau down---but watch the sodium! ( Unsalted Saltines is redundant--excuse me !)
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Rneb
Re: Side effects of Revlimid as maintenance drug
DallasGG asked: "Has anyone else noticed that they dream more when using Revlimid?"
Not from Revlimid, but I sure did with Ambien, and they were bad dreams too. Years ago, I tried using Ambien to counter the effects of the dex I was taking with Velcade. The Ambien did little to help me sleep and I stopped using it because of really bad dreams.
I have been taking Revlimid for 2.5 years and I still have dreams, but rarely bad ones. After 2.5 years, though, maybe I do not remember what it was like before for comparison.
Not from Revlimid, but I sure did with Ambien, and they were bad dreams too. Years ago, I tried using Ambien to counter the effects of the dex I was taking with Velcade. The Ambien did little to help me sleep and I stopped using it because of really bad dreams.
I have been taking Revlimid for 2.5 years and I still have dreams, but rarely bad ones. After 2.5 years, though, maybe I do not remember what it was like before for comparison.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Side effects of Revlimid as maintenance drug
Hi Eric.
I didn't like Ambien either. My nephrologist suggested I take Benadryl instead. I usually fall asleep with no problem but often wake at 2 and if I don't fall back to sleep fairly quickly, I take 1/2 Benadryl.
By the way, I went back on Revlimid because of one of your posts. I am the one who is excited about the ketogenic diet. But you said it is foolish to not use the conventional treatment that is available.
I appreciated you saying that and my oncologist had encouraged me to continue to take Revlimid too.
I didn't like Ambien either. My nephrologist suggested I take Benadryl instead. I usually fall asleep with no problem but often wake at 2 and if I don't fall back to sleep fairly quickly, I take 1/2 Benadryl.
By the way, I went back on Revlimid because of one of your posts. I am the one who is excited about the ketogenic diet. But you said it is foolish to not use the conventional treatment that is available.
I appreciated you saying that and my oncologist had encouraged me to continue to take Revlimid too.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Side effects of Revlimid as maintenance drug
Diagnosed with multiple myeloma in Jan 2011. T7-11 vertebrae involved, with T9 pretty much gone. Radiation to kill spot lesions, surgery for rods/screws to keep my vertebrae apart and stable, pamidronate [Aredia] (bone stimulating infusion) 1x / month for 2 years, then Velcade / Revlimid / dex for 4 months, ending up with a SCT in Aug.
Great results, kappa numbers back down to 'normal levels', once I got through the rigors of the post-transplant phase (no picnic, but you all know that). No maintenance meds after the SCT, and got 2.5 years of 'freedom'.
Relapsed in February of this year, this time showing up in my shoulder; "No golf, buddy, till it heals itself." Radiation of the shoulder (every day for a week), then on to Revlimid / dex maintenance routine (21 days on, 7 days off). As well, back on pamidronate again once a month.
Side effects for me are different than last time. VERY tired, leg and hand cramping, hot flashes, blood spots on my hands (we think it's the dex), some back spasming, hard time staying asleep, and a little more clumsy.
Chemo-brain never left, so can't blame that on the drugs this time. My wife has noticed I've turned from a glass half full guy, to a glass half empty guy. It's only been a month, so I'll report back in a bit.
Anyone else have similar side effects?
Great results, kappa numbers back down to 'normal levels', once I got through the rigors of the post-transplant phase (no picnic, but you all know that). No maintenance meds after the SCT, and got 2.5 years of 'freedom'.
Relapsed in February of this year, this time showing up in my shoulder; "No golf, buddy, till it heals itself." Radiation of the shoulder (every day for a week), then on to Revlimid / dex maintenance routine (21 days on, 7 days off). As well, back on pamidronate again once a month.
Side effects for me are different than last time. VERY tired, leg and hand cramping, hot flashes, blood spots on my hands (we think it's the dex), some back spasming, hard time staying asleep, and a little more clumsy.
Chemo-brain never left, so can't blame that on the drugs this time. My wife has noticed I've turned from a glass half full guy, to a glass half empty guy. It's only been a month, so I'll report back in a bit.
Anyone else have similar side effects?
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Golf addict
Re: Side effects of Revlimid as maintenance drug
Cathy,
I was using Benadryl a few years ago to help with getting to sleep and I do not know how much it helped with all the other drugs I was taking at the time, but it did not seem to cause any side effects that were bad.
I am glad to see you have decided to continue treatment with your oncologist and I hope you continue to see good results in your health from your diet efforts as well. Though I am a believer in conventional treatment, I am not completely closed minded to other things like curcumin. In my Google searches there seems to be a lot of evidence that curcumin is effective in killing or slowing myeloma cell lines in lab experiments and even works well when combined with Revlimid, but a lot less on whether that effectiveness seen in lab translates to the same effectiveness in the body fighting myeloma.
But curcumin is not expensive and I do not see what harm it can do. I would never use curcumin in lieu of the novel agent myeloma therapies my oncologist can offer. The effectiveness of those treatments are known and proven with clinical trials.
I was using Benadryl a few years ago to help with getting to sleep and I do not know how much it helped with all the other drugs I was taking at the time, but it did not seem to cause any side effects that were bad.
I am glad to see you have decided to continue treatment with your oncologist and I hope you continue to see good results in your health from your diet efforts as well. Though I am a believer in conventional treatment, I am not completely closed minded to other things like curcumin. In my Google searches there seems to be a lot of evidence that curcumin is effective in killing or slowing myeloma cell lines in lab experiments and even works well when combined with Revlimid, but a lot less on whether that effectiveness seen in lab translates to the same effectiveness in the body fighting myeloma.
But curcumin is not expensive and I do not see what harm it can do. I would never use curcumin in lieu of the novel agent myeloma therapies my oncologist can offer. The effectiveness of those treatments are known and proven with clinical trials.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Side effects of Revlimid as maintenance drug
Hi Eric.
I will have to look into curcumin. I thought you were wise to advise us not to reject conventional treatments - when you said that some people consider Revlimid poisonous, I recognized I had been thinking of it as poisonous and not as one of my tools.
I have wanted to build up my WBC and ANC count, because it has been so low, and I know the Revlimid suppresses it. My oncologist approved my idea to take 5 mg Revlimid once a week as long as I stay in remission. We agreed that when my kappa FLC go up, I will increase the dosage.
In fact, I just got back from oncologist and my kappa FLC were in the normal range for the second month in a row.
Kappa Free Light Chain (normal is 3.30-19.40 with this lab) Mine = 12.23
Lambda FLC (normal as 5.71-26.30) mine = 12.98
Ratio (normal .26-1.65) mine = .94
My WBC was up to 3.36 and my ANC is around 1350 - which is better than it has been.
My creatinine is 1.403098
Before you try 25 mg Revlimid, you should try staying at your current dose and cutting back on carbs. Just try it for one month - lots of salads and vegetables and a normal amount of meat and more fat than usual - I have coconut oil every day in something - coffee, or to sauté vegetables etc.
I think there are 3 things at work: Glucose seems to stimulate tumor cells, insulin seems to stimulate tumor cells, and ketones seem to suppress tumor cells. Some of the research I have read says that a person who has cancer often has "metabolic syndrome" - which means their body becomes somewhat carbohydrate intolerant - like someone with diabetes.
Hope you don't think I am being pushy. I am praying for you, too!!!
I will have to look into curcumin. I thought you were wise to advise us not to reject conventional treatments - when you said that some people consider Revlimid poisonous, I recognized I had been thinking of it as poisonous and not as one of my tools.
I have wanted to build up my WBC and ANC count, because it has been so low, and I know the Revlimid suppresses it. My oncologist approved my idea to take 5 mg Revlimid once a week as long as I stay in remission. We agreed that when my kappa FLC go up, I will increase the dosage.
In fact, I just got back from oncologist and my kappa FLC were in the normal range for the second month in a row.
Kappa Free Light Chain (normal is 3.30-19.40 with this lab) Mine = 12.23
Lambda FLC (normal as 5.71-26.30) mine = 12.98
Ratio (normal .26-1.65) mine = .94
My WBC was up to 3.36 and my ANC is around 1350 - which is better than it has been.
My creatinine is 1.403098
Before you try 25 mg Revlimid, you should try staying at your current dose and cutting back on carbs. Just try it for one month - lots of salads and vegetables and a normal amount of meat and more fat than usual - I have coconut oil every day in something - coffee, or to sauté vegetables etc.
I think there are 3 things at work: Glucose seems to stimulate tumor cells, insulin seems to stimulate tumor cells, and ketones seem to suppress tumor cells. Some of the research I have read says that a person who has cancer often has "metabolic syndrome" - which means their body becomes somewhat carbohydrate intolerant - like someone with diabetes.
Hope you don't think I am being pushy. I am praying for you, too!!!
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Side effects of Revlimid as maintenance drug
I was put on vacation from Revlimid Tuesday. The side effects are starting to effect other necessary functions, mainly fluid and nutrition intake, but my energy level is also in free fall. My creatinine is rising and my WBC are near the bottom.
I think part of the reasoning is at this point they need to make sure all of my symptoms are from the agent.
I think part of the reasoning is at this point they need to make sure all of my symptoms are from the agent.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Side effects of Revlimid as maintenance drug
Hi Wayne.
I am sorry to hear your WBC counts and energy are down and your Creatinine is rising.
My oncologist put me "on vacation from Revlimid" when I got a kidney infection. I think it is wise for them to see the big picture and try to help your body fight an infection.
How long have you been taking Revlimid? Didn't you go a couple of years without taking Revlimid?
Cathy
I am sorry to hear your WBC counts and energy are down and your Creatinine is rising.
My oncologist put me "on vacation from Revlimid" when I got a kidney infection. I think it is wise for them to see the big picture and try to help your body fight an infection.
How long have you been taking Revlimid? Didn't you go a couple of years without taking Revlimid?
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Side effects of Revlimid as maintenance drug
I have been on Revlimid through 4 cycles and on my fifth when they stopped it. I didn't take any maintenance for 3 1/2 years following my SCT.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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