Forums
8 posts
• Page 1 of 1
Should older patients be on Revlimid and Decadron
My mother is 83 years old and has had multiple myeloma for about two years. She was taking Revlimid (15mg) and Decadron up until a month ago. She was having some nausea and weakness issues and the doctor took her off the drugs to determine if it was causing her problems. She is doing better but we're unsure if it is due to going off the drugs or some treatment the hospital gave her for low potassium and some blood transfusions. She is trying to determine whether to go back on the Revlimid and Decadron. The doctor has said she is in remission and does not think she should go back on the Revlimid and Decadron because of her age and because she hasn't been very ambulatory because of being weak but she is trying to walk again and build back up to where she was. Me and my mother aren't very comfortable with her not having any treatment He seems to think she'll stay in remission quite a while with no treatment. She goes on Procrit because she doesn't do blood transfusion when her HGB is low and he doesn't even think she should take that because of her not being very ambulatory and getting blood clots. I asked him what happens if her HGB drops and she doesn't have any treatment. He said she could have a stroke or heart attack. When I was concerned about that, his remark was that she'll die of something at her age. What are your thoughts on her going back on the Revlimid and Decadron but maybe a lower dose? I'm not very confident with what the doctor is saying and she doesn't have another doctor she can go to because she is with Kaiser and there are only 2 doctors near her and we had a bad experience with the other one.
Re: Should older patients be on Revlimid and Decadron
Hi Jojeda,
My mom is just about the same age as your mom. I know how upset I get when she is not feeling well, so I understand where you are coming from. But the good news is, your mom is in remission! It sounds like a good time for her to take a holiday for her treatment, and to give herself a rest. Although Revlimid and dex do wonderful things, they are hard on your body. And having a rest from the drugs may help her get her strength back. If her m-spike starts rising, or if something changes, she can always start back on treatment.
Good luck!
Lyn
My mom is just about the same age as your mom. I know how upset I get when she is not feeling well, so I understand where you are coming from. But the good news is, your mom is in remission! It sounds like a good time for her to take a holiday for her treatment, and to give herself a rest. Although Revlimid and dex do wonderful things, they are hard on your body. And having a rest from the drugs may help her get her strength back. If her m-spike starts rising, or if something changes, she can always start back on treatment.
Good luck!
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Should older patients be on Revlimid and Decadron
Hi there. My Mom is 73. She also had to go off of Rev/dex several times due to some pretty severe side effects. I agree with the other poster... being off of the medicines can be a good thing to give the body a break. And your doctor will watch her multiple myeloma markers, right (IgG, serum free light chains, M protein, beta 2 microglobulin, as well as creatinine, calcium, hemoglobin..).
Another consideration you might bring up to your doctor - whether to be on now or in the future, should your Mom need it, is the low-dose melphalan (brand name Alkeran) and prednisone. I suggest you ask about this only because of my Mom's experience. If you do an advanced search on this forum for either my name or the words melphalan and prednisone, some of my previous posts should come up with tons of info that I shared (only our experience) - and I would be glad to share more info with you in private message too. My Mom stopped responding to lower and lower doses of Rev/dex and had more and more side effects even with lower dose. My MOm's doctor really tried to work with her, lowering the dose of the Rev/dex each month, but it really didn't help my Mom's side effects... she was just not tolerant of that drug regimen at all.
Then the next regimen was Velcade./dex - her multiple myeloma did not respond to 7 cycles (7 weekly injections) Velcade/dex and she had lots of side effects. Her doctor then put her on this older treatment, mephalan and prednisone (high dose melphalan is used for those having stem cell transplants) - in general, it is very well tolerated in older patients with less side effects. My Mom is on her fourth cycle (a cycle is 4 days of pills at home, and then 3 weeks off. the pills dosage for my Mom each of those 4 days is 8 mg of melphalan and 60 mg of prednisone). She has responded VERY well to it and is now very close to a remission with very tolerable side effects. I'm not sure what the "standard" is with this treatment, but my Mom has seen two oncologists who both agree that once my Mom's multiple myeloma markers are in the normal range (i.e. a remission), she will NOT be on the drugs even in lowered doses for maintenance. They both said that with this particular regimen, she will go off the drugs and they will watch her numbers closely.
Anyway, keep the melphalan and prednisone regimen in mind for your Mom if she should need another regimen... and read/ask about how it is generally well tolerated by older patients. Also, I totally understand your and your mother's reluctance to not be on anything... but from what I have read and our experience, this is common for patients to be off of regimens for varying periods of time and are closely watched.
And, I agree, that is great your Mom is in remission!! With her multiple myeloma in remission, that hopefully will give her the ability to gain back her strength and get stronger each day.
Another consideration you might bring up to your doctor - whether to be on now or in the future, should your Mom need it, is the low-dose melphalan (brand name Alkeran) and prednisone. I suggest you ask about this only because of my Mom's experience. If you do an advanced search on this forum for either my name or the words melphalan and prednisone, some of my previous posts should come up with tons of info that I shared (only our experience) - and I would be glad to share more info with you in private message too. My Mom stopped responding to lower and lower doses of Rev/dex and had more and more side effects even with lower dose. My MOm's doctor really tried to work with her, lowering the dose of the Rev/dex each month, but it really didn't help my Mom's side effects... she was just not tolerant of that drug regimen at all.
Then the next regimen was Velcade./dex - her multiple myeloma did not respond to 7 cycles (7 weekly injections) Velcade/dex and she had lots of side effects. Her doctor then put her on this older treatment, mephalan and prednisone (high dose melphalan is used for those having stem cell transplants) - in general, it is very well tolerated in older patients with less side effects. My Mom is on her fourth cycle (a cycle is 4 days of pills at home, and then 3 weeks off. the pills dosage for my Mom each of those 4 days is 8 mg of melphalan and 60 mg of prednisone). She has responded VERY well to it and is now very close to a remission with very tolerable side effects. I'm not sure what the "standard" is with this treatment, but my Mom has seen two oncologists who both agree that once my Mom's multiple myeloma markers are in the normal range (i.e. a remission), she will NOT be on the drugs even in lowered doses for maintenance. They both said that with this particular regimen, she will go off the drugs and they will watch her numbers closely.
Anyway, keep the melphalan and prednisone regimen in mind for your Mom if she should need another regimen... and read/ask about how it is generally well tolerated by older patients. Also, I totally understand your and your mother's reluctance to not be on anything... but from what I have read and our experience, this is common for patients to be off of regimens for varying periods of time and are closely watched.
And, I agree, that is great your Mom is in remission!! With her multiple myeloma in remission, that hopefully will give her the ability to gain back her strength and get stronger each day.
-
Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Should older patients be on Revlimid and Decadron
My Mom is 85 and has had multiple myeloma for about 6+ years. She was first treated with Thalidomide and Dex. Went into remission for almost 3 years. multiple myeloma came back, she went on Velcade and Dex had some problems with very low WBC counts. But the spike was low enough that she went off treatment. Came back, she went on Rev. had some bad reaction with her eyes (she has glaucoma too). So she went off that and has just started back treatment a month ago on Kyprolis with a tiny bit of Dex. She has a lot of problems with the steroids so they give her a very small dose or none at all. The Kyprolis is working very slowly (The Dr. says because she can only tolerate a small dose of Dex.) But she has had to forgo 2 weeks of treatment because of a sinus infection.
My Mom is very weak most days, I think due to a combo of multiple myeloma, treatment and age. When she was first diagnosed years ago that Dr. told her that something else would kill her before the multiple myeloma did. But I don't think that will be the case as she has no other health problems. One of her Drs. is Dr. Voorhees from Chapel Hill who is a contributor on this forum. He told us there were other milder treatments that we can try if the side effects get to be too much. One is Melphalan. I would think that she could try a lower dose. They did that with Mom on the Velcade and Revlimid. Good Luck, I know how scary it is. (Dr. Voorhees, by the way, is very knowledgeable and very nice. We like him a bunch!)
My Mom is very weak most days, I think due to a combo of multiple myeloma, treatment and age. When she was first diagnosed years ago that Dr. told her that something else would kill her before the multiple myeloma did. But I don't think that will be the case as she has no other health problems. One of her Drs. is Dr. Voorhees from Chapel Hill who is a contributor on this forum. He told us there were other milder treatments that we can try if the side effects get to be too much. One is Melphalan. I would think that she could try a lower dose. They did that with Mom on the Velcade and Revlimid. Good Luck, I know how scary it is. (Dr. Voorhees, by the way, is very knowledgeable and very nice. We like him a bunch!)
-
Brownk
Re: Should older patients be on Revlimid and Decadron
If she is in remission, I'd recommend she be monitored and stay chemo free! These drugs are not like taking insulin for diabetes, they are toxic to more than the myeloma cells! She can always start up if she relapses. Meanwhile her body has a chance to build itself up again. I feel so much better after two and a half years off chemo after a near complete remission from a SCT. I recommend the break!
-
Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Should older patients be on Revlimid and Decadron
I agree with everyone above. My diagnoses of multiple myeloma was Nov., 2003, but decided to only be monitored due to recommendations from my oncologist at the time. I began my treatments May. '08, with Velcade/Revlimid/dex, Velcade/dex, Revlimid/dex, and an auto SCT Nov., '08. I had VGPR the first 3 cycles, but began a steady increase until my SCT. However, even the transplant did little to change my myeloma levels. But, I decided to Not go on any further chemo because my progression did seem to have been slowed. As stated above, my concern was with the toxic effect continual chemo might have. My doctors, myeloma and stem cell, did not recommend my approach, but did support me in my decision, as long as I was monitored at least ever 2 to 3 months. Thus, I did not have any chemo during 2009.
Whether this was the best thing to do I am not 100% sure. because when I did start back on chemo my rate of progression had gotten pretty bad. Due to my failure to respond to Velcade, Revlimid and dex, I entered into clinical trials beginning in 2010. The first two did little, and my progression add continued to the point that my prognoses did not look good. I even broke my hip Jun., 2010, due to my level of plasma cells in my bone marrow and lessons. So, Sept., 2010, I started my 3rd clinical trial. This started with 100mg thalomid, 25mg Revlimid and 160mg dex. The dex was reduced to 40mg beginning cycle 3 (each cycle being 28 days), then the thalomid was reduced to 50mg beginning cycle 9. I was on these doses thru cycle 27, Oct. 2012, but my dex was stopped due to side effects, which were mainly sever swelling and bruising. Then after completion of cycle 28 it was decided that all of my chemo would be stopped to my other side effects which had been steadily increasing, which included neuropathy in my feet and legs, continued swelling/bruising, memory changes and increased vision issues.
So, I took a little over a 6 week "Holiday" from chemo. It took my body 4 weeks to begin to feel sort of normal, but by 6 weeks I realized how bad the side effects had really been, just I had gotten sort of use to them over the many months I had been in treatment. When I went back for my lab work in Jan., 2013, and restarting of my chemo (50mg thalomid/25mg Revlimid - cycle 29), I was ready to tell my doctor that I wanted to continue my holiday. But, all of my labs showed slight increases in all of my myeloma, proteins, light chains, K/L ratio, etc.. Based on my past history of progression, I decided to continue treatment. I am currently in cycle 32, and although certainly can feel the difference from completion of 3 cycles of chemo, there are not side effects as sever as those that caused stoppage of my treatment. Even though my myeloma increased slightly due to my 6 weeks off chemo, it has been stable since restarting.
This has been a long story to say that taking a break from chemo can be a good thing. However, each of us with multiple myeloma are different, and is an individual decision. A decision in conjunction with the recommendation of your doctor. Taking a year off I would not do again, but a few weeks certainly helped me. The key is monitoring. Plus, having a doctor who has been with me through this roller coaster ride for almost 5 years, and knows me better than myself at times, certainly has helped me. I am one of those with multiple myeloma that will never reach remission, but if you are in remission I would think that a break could be good to regain your strength and even mental clarity. At least the mental clarity applied to me! Even, as I have said, only for a few weeks.
Whether this was the best thing to do I am not 100% sure. because when I did start back on chemo my rate of progression had gotten pretty bad. Due to my failure to respond to Velcade, Revlimid and dex, I entered into clinical trials beginning in 2010. The first two did little, and my progression add continued to the point that my prognoses did not look good. I even broke my hip Jun., 2010, due to my level of plasma cells in my bone marrow and lessons. So, Sept., 2010, I started my 3rd clinical trial. This started with 100mg thalomid, 25mg Revlimid and 160mg dex. The dex was reduced to 40mg beginning cycle 3 (each cycle being 28 days), then the thalomid was reduced to 50mg beginning cycle 9. I was on these doses thru cycle 27, Oct. 2012, but my dex was stopped due to side effects, which were mainly sever swelling and bruising. Then after completion of cycle 28 it was decided that all of my chemo would be stopped to my other side effects which had been steadily increasing, which included neuropathy in my feet and legs, continued swelling/bruising, memory changes and increased vision issues.
So, I took a little over a 6 week "Holiday" from chemo. It took my body 4 weeks to begin to feel sort of normal, but by 6 weeks I realized how bad the side effects had really been, just I had gotten sort of use to them over the many months I had been in treatment. When I went back for my lab work in Jan., 2013, and restarting of my chemo (50mg thalomid/25mg Revlimid - cycle 29), I was ready to tell my doctor that I wanted to continue my holiday. But, all of my labs showed slight increases in all of my myeloma, proteins, light chains, K/L ratio, etc.. Based on my past history of progression, I decided to continue treatment. I am currently in cycle 32, and although certainly can feel the difference from completion of 3 cycles of chemo, there are not side effects as sever as those that caused stoppage of my treatment. Even though my myeloma increased slightly due to my 6 weeks off chemo, it has been stable since restarting.
This has been a long story to say that taking a break from chemo can be a good thing. However, each of us with multiple myeloma are different, and is an individual decision. A decision in conjunction with the recommendation of your doctor. Taking a year off I would not do again, but a few weeks certainly helped me. The key is monitoring. Plus, having a doctor who has been with me through this roller coaster ride for almost 5 years, and knows me better than myself at times, certainly has helped me. I am one of those with multiple myeloma that will never reach remission, but if you are in remission I would think that a break could be good to regain your strength and even mental clarity. At least the mental clarity applied to me! Even, as I have said, only for a few weeks.
-
bbrown687782 - Name: Bill
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov. 2003
- Age at diagnosis: 56
Re: Should older patients be on Revlimid and Decadron
I was diagnosed 1n April of 09, received a stem cell transplant in Feb 2010, and have been in remission since. I elected not to go on maintenance therapy because of the fatigue and other side effects. I am 65 and so far doing OK.
-
barbsarb1
Re: Should older patients be on Revlimid and Decadron
Dear Jojeda,
Tough call with limited information. My advice would depend to some degree on whether the myeloma is low or high-risk, how many cycles she has already received and the depth of the remission of which your doctor speaks. Regardless, if the Revlimid and dexamethasone was principally responsible for her weakened state, than a break to rebound may be the right thing to do. I would not rule out the possibility of going back on treatment at the first signs of disease progression, perhaps at a 10 mg dose for starters and a cautious dose of dexamethasone. Older patients can most certainly be treated with these drugs but everyone reacts to them differently. There are a plethora of other choices as well. That and your mother's remission status are great things!
Best of luck and let us know how things go!
Pete V.
Tough call with limited information. My advice would depend to some degree on whether the myeloma is low or high-risk, how many cycles she has already received and the depth of the remission of which your doctor speaks. Regardless, if the Revlimid and dexamethasone was principally responsible for her weakened state, than a break to rebound may be the right thing to do. I would not rule out the possibility of going back on treatment at the first signs of disease progression, perhaps at a 10 mg dose for starters and a cautious dose of dexamethasone. Older patients can most certainly be treated with these drugs but everyone reacts to them differently. There are a plethora of other choices as well. That and your mother's remission status are great things!
Best of luck and let us know how things go!
Pete V.
-
Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
8 posts
• Page 1 of 1
Return to Treatments & Side Effects