Hi everyone,
I've posted on here before but it was a while ago. My dad is 50 years old and was diagnosed with Stage 3a myeloma in April of 2014. Up until now, he's been getting a Velcade shot in his stomach, but they want him to try Revlimid because the Velcade has stopped working.
Has anyone had good results with this drug and also were the side effects horrible?
He's scared because some of the side effects include the possibility of him getting new cancers like lymphoma or ALS.
Anyways, just curious about how you responded with this drug and if you ended up with a secondary cancer. Thanks in advance!
Forums
10 posts
• Page 1 of 1
-
concerneddaughter - Name: Amber
- Who do you know with myeloma?: My daddy
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 48
Re: Revlimid side effects and success rate?
I am on Revlimid and dex. My side effects of Revlimid is neuropathy in the feet and hands. If your father has had measles, he might get a horrible outbreak of shingles. The pain from the shingles is worse than the bone pain from myeloma.
Was on Velcade but it affected my nervous system so the oncologist stopped the Velcade. According to my doctor, Revlimid is the best drug for multiple myeloma.
Good luck and stay positive.
Tom74
Was on Velcade but it affected my nervous system so the oncologist stopped the Velcade. According to my doctor, Revlimid is the best drug for multiple myeloma.
Good luck and stay positive.
Tom74
-
Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Revlimid side effects and success rate?
I can only speak for myself, but I started on Revlimid in May of 2012, stopping in December of that year in preparation for an auto stem cell transplant. Once I was through the transplant, I started back on Revlimid for maintenance (10 mg/day) in June of 2013. I have been on it ever since and have not been able to link any health-related problems to it. That's not to say that it will turn out to be harmless for me in the long run, but I have had no side effects at any time. For what it's worth, I'm 57, so not much older than your dad.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Revlimid side effects and success rate?
I, too, have been taking Revlimid for my myeloma. During induction therapy I took 15 mg 21/7 with 40 mg of dexamethasone once a week for 8 months. I had some fatigue, but nothing else from this regimen. Then I had a stem cell transplant and had no drugs for almost 3 years following the transplant other than Zometa every 6 weeks. I relapsed and started treatment with Revlimid 15 mg and dex 20 mg. My only side effect was fatigue for about 18 months. Then I developed low blood counts. My oncologist decreased my Revlimid dose to 10 mg and my blood counts recovered and my M-spike remained stable at about 0.5 g/dl.
After about a year on the 10 mg dose of Revlimid I started to develop GI issues and also developed clots in my lungs. I had been taking a full strength aspirin daily to prevent blood clots, but they developed anyway. I was put on an anticoagulant, Xarelto (rivaroxaban), and my Revlimid dose was changed to 10 mg every other day. Last fall I started to have some side effects from long-term steroid use. My oncologist and I decided to increase my Revlimid to 10 mg daily and decrease the dex to 12 mg once a week. The steroid side effects have lessened. The Revlimid side effects are about the same with fatigue and GI problems. And, my M-spike remains stable.
So, over time I have developed various different side effects that my oncologist is working with me to minimize while also keeping my myeloma in check. The things that I have experienced haven't interfered with my life too much. I was able to work full time, travel and do pretty much what I wanted to do during all of these occurrances. Hopefully your Dad will have good results with the Revlimid with little trouble.
Nancy in Phila
After about a year on the 10 mg dose of Revlimid I started to develop GI issues and also developed clots in my lungs. I had been taking a full strength aspirin daily to prevent blood clots, but they developed anyway. I was put on an anticoagulant, Xarelto (rivaroxaban), and my Revlimid dose was changed to 10 mg every other day. Last fall I started to have some side effects from long-term steroid use. My oncologist and I decided to increase my Revlimid to 10 mg daily and decrease the dex to 12 mg once a week. The steroid side effects have lessened. The Revlimid side effects are about the same with fatigue and GI problems. And, my M-spike remains stable.
So, over time I have developed various different side effects that my oncologist is working with me to minimize while also keeping my myeloma in check. The things that I have experienced haven't interfered with my life too much. I was able to work full time, travel and do pretty much what I wanted to do during all of these occurrances. Hopefully your Dad will have good results with the Revlimid with little trouble.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Revlimid side effects and success rate?
I took Revlimid along with dexamethasone for six months after being diagnosed and am currently taking a lower does now for maintenance. I've had a good response to this drug and the side effects have been very manageable – mostly some fatigue the last week of each cycle. I've continued to work, travel, and do nearly everything I did before. I think your father will do fine.
Re: Revlimid side effects and success rate?
Thanks for the replies, everyone!
-
concerneddaughter - Name: Amber
- Who do you know with myeloma?: My daddy
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 48
Re: Revlimid side effects and success rate?
My protein is up so they are starting me on new program. Doctor asked if I wanted to go to MD Anderson for second opinion, but I said no, I'll stay with him and Lourdes Hospital. Will post next week my new drugs and program.
Stay positive
Tom74
Stay positive
Tom74
-
Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Revlimid side effects and success rate?
I started taking Revlimid after I was staged IIA in February 2015. First cycle was Revlimid 25 mg, dexamethasone 40 mg per week, and Zometa every month. Side effect of Zometa was horrible. It was reduced to once in a three month and at lower dose with longer duration IV. Dexamethasone had equally terrible side effect, it was reduced to 20 mg. I still had multiple side effects which were tolerable including not able to close my eyes for at least forty eight hours after taking dexamethasone.
Now I am on my tenth cycle. Revlimid still continues at 25 mg. From ninth cycle, dexamethasone is 16 mg. I am going through terrible unstable blood pressure since I started my ninth cycle. My blood pressure in the morning was going 205/115 and after increasing the dose of blood pressure medicine by fifty percent it will go down to 165/95, but again it will start rising in the evening. My physician has added two more blood pressure medicines and hopes my blood pressure to stabilize in ten days. I also started getting tired easily, including on simple tasks such as putting clothes on to go for work. With blood pressure getting lower, but not stabilized yet, I am not getting tired that easily.
My hematologist hopes that I will be in CR or stable M-spike after twelve cycle of Revlimid. After eight cycles my M-spike dropped from 3.9 to 0.7. However, immunoelectrophoresis still shows IgG and kappa monoclonal band.
I hope my experience helps.
Thank you.
Now I am on my tenth cycle. Revlimid still continues at 25 mg. From ninth cycle, dexamethasone is 16 mg. I am going through terrible unstable blood pressure since I started my ninth cycle. My blood pressure in the morning was going 205/115 and after increasing the dose of blood pressure medicine by fifty percent it will go down to 165/95, but again it will start rising in the evening. My physician has added two more blood pressure medicines and hopes my blood pressure to stabilize in ten days. I also started getting tired easily, including on simple tasks such as putting clothes on to go for work. With blood pressure getting lower, but not stabilized yet, I am not getting tired that easily.
My hematologist hopes that I will be in CR or stable M-spike after twelve cycle of Revlimid. After eight cycles my M-spike dropped from 3.9 to 0.7. However, immunoelectrophoresis still shows IgG and kappa monoclonal band.
I hope my experience helps.
Thank you.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Revlimid side effects and success rate?
Hi there,
My mother is currently on her 5th cycle of Revlimid and dexamethasone.
Standard dose - 25 mg Revlimid + dexamethasone, 3 weeks on 1 off.
She went from an M-spike of 48 g/L (4.8 g/dL) to 8 g/L (0.8 g/dL) after her 4th cycle. So this combo seems to be pretty powerful and gives good results. We hope that she will achieve a very good partial response (VGPR) or complete response (CR) at least.
Side effects:
1) Diarrhea - Regularly ... annoying, because it prevents you from going out without wondering if you need to run to find a toilet! But it is relatively manageable with anti-diarrhea medication
2) Fatigue - My mother gets tired easily when on Revlimid.. It seems to improve with time and she just needs more regular rest after normal chores.
These side effects are with the maximum dose.. If the dose is lowered after several cycles, then I presume the side effects become more manageable.
Advantages:
1) It's convenient so its psychologically easier to accept.
Yeah taking a pill at home is not the same as going to hospital for injections... I know my mother hates going to the hospital, so taking a pill at home does feel much more like a chronic disease and its psycologically easier to accept.
2) It's effective. Most people get very good responses on Revlimid + dex.
3) It allows you to live a more "normal" life because you can travel, go visit friends in another city, etc
Best of luck!
My mother is currently on her 5th cycle of Revlimid and dexamethasone.
Standard dose - 25 mg Revlimid + dexamethasone, 3 weeks on 1 off.
She went from an M-spike of 48 g/L (4.8 g/dL) to 8 g/L (0.8 g/dL) after her 4th cycle. So this combo seems to be pretty powerful and gives good results. We hope that she will achieve a very good partial response (VGPR) or complete response (CR) at least.
Side effects:
1) Diarrhea - Regularly ... annoying, because it prevents you from going out without wondering if you need to run to find a toilet! But it is relatively manageable with anti-diarrhea medication
2) Fatigue - My mother gets tired easily when on Revlimid.. It seems to improve with time and she just needs more regular rest after normal chores.
These side effects are with the maximum dose.. If the dose is lowered after several cycles, then I presume the side effects become more manageable.
Advantages:
1) It's convenient so its psychologically easier to accept.
Yeah taking a pill at home is not the same as going to hospital for injections... I know my mother hates going to the hospital, so taking a pill at home does feel much more like a chronic disease and its psycologically easier to accept.
2) It's effective. Most people get very good responses on Revlimid + dex.
3) It allows you to live a more "normal" life because you can travel, go visit friends in another city, etc
Best of luck!
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Revlimid side effects and success rate?
I'm currently on 15 mg Revlimid for maintenance. It's very tolerable and it is keeping the myeloma under control. I take aspirin to avoid blood clots. During induction therapy I was on 25 mg, which caused terrible constipation and occasional fatigue. No other cancers at this point. Good luck to your dad.
-
Janet1520
10 posts
• Page 1 of 1
Return to Treatments & Side Effects