2:36 a.m., back on Revlimid, with a chaser of dex steroids. No sleep tonight.
Like I stated before, I was diagnosed before any symptoms due to a pre-surgery blood test. I started with Velcade and Revlimid, and I got a virus after the second cycle. I was in the hospital for a week, ICU two days, I came out 30 lbs [14kg] lighter, and severe neuropathy in my feet.
The upside: my multiple myeloma was knocked back, enough so they could harvest the stem cells, which they did, even though I could barely stand due to slow recovery.
Long story short, I've been on maintenance of Revlimid when my multiple myeloma numbers went up. I've had severe sweating, which they decided to check my testosterone, which the Revlimid has a way of decreasing it, and then low testosterone causes sweating. The normal range is 10-42, mine is 10.7.
My biggest problem was shortness of breath, I couldn't walk up a flight of steps, or walk across a yard, without stopping and hanging on to something to recover. The oncologist stopped treatment.
He wanted me to do a catheterization to check my heart.
We were going on a cruise to Alaska, which we decided to do. I progressively improved, from when went on our way, I couldn't keep up with my wife in the airport, to running with both carry ons, and my wife couldn't keep up.
Doc still made me get the cath. I'm clean, as he put it. And I resumed the Revlimid today.
Is this shortness of breath a common side effect?
Don
Forums
Re: Shortness of breath - common Revlimid side effect?
Revlimid can cause anemia which, in turn, can cause shortness of breath. Do you know what your blood counts are?
-
Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Shortness of breath - common Revlimid side effect?
I can sympathize with the Velcade reactions. I did two courses of Velcade and wound up with severe neuropathy and pneumonia. It worked though and I'm here 10 years later.
I have had several courses of Revlimid, most of the time I took dexamethasone with it. That I found had the most effect on me. Together, they are powerful. I've been hospitalized twice with blood clots. I currently take Coumadin. I used to take aspirin but it wasn't enough to do the trick.
Anyway, the shortness of breath, I've experienced that, but I always thought it was more due to the dex than the Revlimid. I found too that it got better for me when I started an exercise program and addressed my eating. I think that helped put my body in shape to fight the disease and effects of the drugs.
That reminds me, I talked to friends who were also on Revlimid and we had all found that our "motivators" were broken. It seemed like the get up and go we had just went.
I wish you well and will say a prayer for you. God bless you. Joe
I have had several courses of Revlimid, most of the time I took dexamethasone with it. That I found had the most effect on me. Together, they are powerful. I've been hospitalized twice with blood clots. I currently take Coumadin. I used to take aspirin but it wasn't enough to do the trick.
Anyway, the shortness of breath, I've experienced that, but I always thought it was more due to the dex than the Revlimid. I found too that it got better for me when I started an exercise program and addressed my eating. I think that helped put my body in shape to fight the disease and effects of the drugs.
That reminds me, I talked to friends who were also on Revlimid and we had all found that our "motivators" were broken. It seemed like the get up and go we had just went.
I wish you well and will say a prayer for you. God bless you. Joe
Re: Shortness of breath - common Revlimid side effect?
Are you still on dex? My husband did not have shortness of breath while on Revlimid alone, but does have it while on Revlimid and dex.
He just was off meds for 2 weeks while on vacation. With LOTS of walking and stair climbing he was pleased to have no shortness of breath. The day after coming home he was very disappointed to see that his hemoglobin has fallen to 8 - actually pretty surprised that he is not having any shortness of breath being that anemic.
He just was off meds for 2 weeks while on vacation. With LOTS of walking and stair climbing he was pleased to have no shortness of breath. The day after coming home he was very disappointed to see that his hemoglobin has fallen to 8 - actually pretty surprised that he is not having any shortness of breath being that anemic.
-
rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Shortness of breath - common Revlimid side effect?
My husband has been on Revlimid / dex since February. He suffers from fatigue, shortness of breath, and both diarrhea and constipation in the same day. He also hiccups for three to four days after he takes his dex, and lately we can add dizziness to the mix.
He can no longer climb a flight of stairs without getting winded, nor can he do anything physical (i.e., gardening or any kind of work around the house) because he tires after 15-20 minutes and has to go back to bed.
This has not been fun!
Joanna
He can no longer climb a flight of stairs without getting winded, nor can he do anything physical (i.e., gardening or any kind of work around the house) because he tires after 15-20 minutes and has to go back to bed.
This has not been fun!
Joanna
Re: Shortness of breath - common Revlimid side effect?
I have started to exercise in the hope to counteract the shortness of breath from the meds. Three days in, and I seem to be ahead of it so far. Red face and chest only thing that's changed.
My blood counts are good. The reason I want to stay on this regimen is because I respond so well. My light chains were more than a 1,000. Last test after being off a month were 90. If I can tolerate the drugs, the next test usually shows normal. That's why I hope to have a decent quality of life, while dealing with side effects.
Thanks for the feedback.
My blood counts are good. The reason I want to stay on this regimen is because I respond so well. My light chains were more than a 1,000. Last test after being off a month were 90. If I can tolerate the drugs, the next test usually shows normal. That's why I hope to have a decent quality of life, while dealing with side effects.
Thanks for the feedback.
Re: Shortness of breath - common Revlimid side effect?
Don,
I hope all is going well for you. I was on 25 mg Revlimid, 21 days on with 7 off, and 40 mg dexamethasone, once per week, for 7 months. I didn't get short of breath during that treatment, but a few months after starting, I was drained by day 19 or 20 of my 21-day cycle. I was so tired, and if I sat down, I would just fall asleep. My energy would come back a day or so after the 21-day cycle ended.
I decided to not just hang around the house when I was tired like that, so I decided to start going for walks and exercising. Oddly enough, it helped. I was still a little tired, but nothing like before when I didn't exercise. I think your exercise idea might be good one.
I had to stop the Revlimid due to a rash. I just wanted to add to your comment about having a red face and chest. I started out with a slight red face and a little redness of the chest and stomach area. Then a month later, I had a rash at my neck, shoulders and stomach. My oncologist thought it was due to a new laundry detergent that we were using, because it was only where my clothes came in contact with my body. I always wear shorts and t-shirts.
But the next month, I had an extremely bad rash, and this time my skin would sweat and feel like I was out at the lake with no sun screen all day. Blisters and all. Plus my legs and ankles were swollen.
So I am now on subcutaneous Velcade and dex.
I would watch the redness and make sure it doesn't turn into a rash. My Eos% during that rash was 35.5. The normal range is 0.0-5.0.
My oncologist said it was an allergic reaction to the Revlimid. Go figure, this happened after about 6 months on Revlimid. Maybe my dose was too high for too long.
Anyway, two weeks after stopping the Revlimid, it has dropped to 2.1. I only say this because of my one and only bad experience with the Revlimid. The Revlimid was convenient to take as a pill, and it was working very well with the dex.
Good luck on the exercising.
Castaway
I hope all is going well for you. I was on 25 mg Revlimid, 21 days on with 7 off, and 40 mg dexamethasone, once per week, for 7 months. I didn't get short of breath during that treatment, but a few months after starting, I was drained by day 19 or 20 of my 21-day cycle. I was so tired, and if I sat down, I would just fall asleep. My energy would come back a day or so after the 21-day cycle ended.
I decided to not just hang around the house when I was tired like that, so I decided to start going for walks and exercising. Oddly enough, it helped. I was still a little tired, but nothing like before when I didn't exercise. I think your exercise idea might be good one.
I had to stop the Revlimid due to a rash. I just wanted to add to your comment about having a red face and chest. I started out with a slight red face and a little redness of the chest and stomach area. Then a month later, I had a rash at my neck, shoulders and stomach. My oncologist thought it was due to a new laundry detergent that we were using, because it was only where my clothes came in contact with my body. I always wear shorts and t-shirts.
But the next month, I had an extremely bad rash, and this time my skin would sweat and feel like I was out at the lake with no sun screen all day. Blisters and all. Plus my legs and ankles were swollen.
So I am now on subcutaneous Velcade and dex.
I would watch the redness and make sure it doesn't turn into a rash. My Eos% during that rash was 35.5. The normal range is 0.0-5.0.
My oncologist said it was an allergic reaction to the Revlimid. Go figure, this happened after about 6 months on Revlimid. Maybe my dose was too high for too long.
Anyway, two weeks after stopping the Revlimid, it has dropped to 2.1. I only say this because of my one and only bad experience with the Revlimid. The Revlimid was convenient to take as a pill, and it was working very well with the dex.
Good luck on the exercising.
Castaway
-
Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Shortness of breath - common Revlimid side effect?
Briefly:
Per my pharmacist, about 24 to 30 percent of people taking Revlimid experience nausea. My experience is: Get rid of the nausea, and you'll get rid of the shortness of breath.
Detail:
I've been to the ER four times with extreme shortness of breath and chest discomfort. Once while waiting for an x-ray I walked to the bathroom ... and let out a good burp along the way. Very soon, the shortness of breath went away. A very experienced nurse said that is common.
For a while, I followed the nurse's suggestion: simethicone, water, force burp, and sucked on some ginger mints. That helped a lot.
More recently: With about a dozen pills per day, I've been getting daily nausea. I asked the pharmacist for help. She split them into morning and evening. Revlimid was put in the evening bunch, the biggest meal of the day. Nausea is greatly reduced, as is the shortness of breath. If I have any shortness of breath, it is in the evening, when I'm not very active anyway. No problem in the morning or through the day. Fatigue is still there, as always, but at least not shortness of breath.
Also, learned that Revlimid can cause drowsiness. Much better in the evening / night than in the middle of the day. I don't fall asleep in the middle of the afternoon often anymore.
None of my pills recommend a particular time of day. The pharmacist identified reasons for most of my pills to be taken at a particular time of day, or not to be taken at the same time as something else. Much of it was keeping calcium containing things away from things that need stomach acid for digestion. Since many of us take calcium supplements, it's an important factor.
The pharmacist provided the information within about 24 hours. Great resource. I could not have figured it out by myself. I am so thankful for her guidance.
I should point out that the pharmacist I use is an oncology pharmacist at a medical school. I don't know if a retail pharmacist will have time to gather the information. It was stuff like: vitamin D at largest meal of the day, ALA 30 minutes before first meal of the day, etc.
Per my pharmacist, about 24 to 30 percent of people taking Revlimid experience nausea. My experience is: Get rid of the nausea, and you'll get rid of the shortness of breath.
Detail:
I've been to the ER four times with extreme shortness of breath and chest discomfort. Once while waiting for an x-ray I walked to the bathroom ... and let out a good burp along the way. Very soon, the shortness of breath went away. A very experienced nurse said that is common.
For a while, I followed the nurse's suggestion: simethicone, water, force burp, and sucked on some ginger mints. That helped a lot.
More recently: With about a dozen pills per day, I've been getting daily nausea. I asked the pharmacist for help. She split them into morning and evening. Revlimid was put in the evening bunch, the biggest meal of the day. Nausea is greatly reduced, as is the shortness of breath. If I have any shortness of breath, it is in the evening, when I'm not very active anyway. No problem in the morning or through the day. Fatigue is still there, as always, but at least not shortness of breath.
Also, learned that Revlimid can cause drowsiness. Much better in the evening / night than in the middle of the day. I don't fall asleep in the middle of the afternoon often anymore.
None of my pills recommend a particular time of day. The pharmacist identified reasons for most of my pills to be taken at a particular time of day, or not to be taken at the same time as something else. Much of it was keeping calcium containing things away from things that need stomach acid for digestion. Since many of us take calcium supplements, it's an important factor.
The pharmacist provided the information within about 24 hours. Great resource. I could not have figured it out by myself. I am so thankful for her guidance.
I should point out that the pharmacist I use is an oncology pharmacist at a medical school. I don't know if a retail pharmacist will have time to gather the information. It was stuff like: vitamin D at largest meal of the day, ALA 30 minutes before first meal of the day, etc.
-
faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Shortness of breath - common Revlimid side effect?
I recently tried N-acetylecysteine hoping to improve energy. Surprisingly it helped my breathing.
It's cheap.
Warning: It is also used to treat many psychotic disorders. Take it slow. I cut the 600 mg capsule and mix with a quart of water. That quart of water then lasts a full day.
It's cheap.
Warning: It is also used to treat many psychotic disorders. Take it slow. I cut the 600 mg capsule and mix with a quart of water. That quart of water then lasts a full day.
-
faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Shortness of breath - common Revlimid side effect?
I was on the Revlimid and dexamethasone regimen for from January 2014 to April 2016. I am now on Ninlaro and dexamethasone and, from a quality of living perspective, I like Ninlaro much better. Other than low platelets, my labs are all in the normal ranges. During my Revlimid and dexamethasone days, my WBC were often critically low.
One bit of caution I want to point out is that Revlimid can cause pulmonary embolisms to occur, and these can come on very suddenly with little warning. Shortness of breath is one of the main symptoms. This happened to me and I had to be taken to the hospital and treated in an urgent fashion. I was fortunate that my recovery was swift and my inpatient stay very short, less than a week. I was taken off the Revlimid at that time.
Just a word of warning. The incidence of this happening due to Revlimid is very low according to my myeloma specialist, so I don't want to overstate this, but just be aware.
One bit of caution I want to point out is that Revlimid can cause pulmonary embolisms to occur, and these can come on very suddenly with little warning. Shortness of breath is one of the main symptoms. This happened to me and I had to be taken to the hospital and treated in an urgent fashion. I was fortunate that my recovery was swift and my inpatient stay very short, less than a week. I was taken off the Revlimid at that time.
Just a word of warning. The incidence of this happening due to Revlimid is very low according to my myeloma specialist, so I don't want to overstate this, but just be aware.
-
indy mike - Name: Mike Mathias
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 51
14 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects