I saw my hem/onc yesterday and got a very good report. My labs are all good ANC is back to 1700, so good. And my monoclonal protein is down to 0.2 g/dL, which is usually categorized on my labs as non detected. Well, we all know it's still there, but it is low.
So, I've been on Revlimid / dexamethasone for 13 months. I tolerate it well, except for the diarrhea, which I'm working on with Immodium and Metamucil. But, this is my third time on Revlimid. So he mentioned going off for a while.
I'm really unsure. I know it's good to give your body a break. But then I'd have to start all over once it starts climbing again. I think his approach is very non aggressive as long as everything is stable, which it is.
So, I'm asking for some opinions from people who have been on Revlimid before and stopped and then went back on and stopped again. Any ideas?
Thanks
Forums
Re: Stopping Revlimid?
I would not stop maintenance therapy for any reason. It is a long road back when your lab values climb. Stick with what works!!!
-
luvsuns - Name: Dianna Chiles
- Who do you know with myeloma?: Husband, Hunter
- When were you/they diagnosed?: 1995, MGUS, converted 2003
- Age at diagnosis: 65
Re: Stopping Revlimid?
Christina,
I agree with luvsuns. You have your myeloma on the run, I would suggest you keep it that way. You said "I tolerate it well". If you're not experiencing any major side effects, liver or kidney issues, I would think staying the course would be the wise decision.
Treatment always comes with some risk, and you need to weigh the risk / benefit ratio and decide what is better for you. Revlimid and dex for the most part are well tolerated by most patients. If diarrhea is your only issue, consider yourself lucky, and since you myeloma is under control at this point, I would be reluctant to change anything.
Of course the decision is always yours to make ... but keep in mind we still have no cure. Best of luck.
I agree with luvsuns. You have your myeloma on the run, I would suggest you keep it that way. You said "I tolerate it well". If you're not experiencing any major side effects, liver or kidney issues, I would think staying the course would be the wise decision.
Treatment always comes with some risk, and you need to weigh the risk / benefit ratio and decide what is better for you. Revlimid and dex for the most part are well tolerated by most patients. If diarrhea is your only issue, consider yourself lucky, and since you myeloma is under control at this point, I would be reluctant to change anything.
Of course the decision is always yours to make ... but keep in mind we still have no cure. Best of luck.
-
Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Stopping Revlimid?
Hi Chris,
I'm going to put in a vote the opposite of the 2 previous members. My reasoning behind this is two fold.
(1) If you never change your medical routine you will never know whether you could function without it , ~what Sacrilege they say ~ that all depends on your view point.
(2) In my own case. I was on thalidomide and dex for 10 months in 2004. My oncologist suggested stopping treatment as my blood readings were looking good. "No", not remission, but good readings. I was taken off the thalidomide & dex and have never returned to them - blood test readings remain about the same, good but not perfect, and I continue after 9+ years to go in every 6 months for blood tests. There has been no suggestion by my current oncologist to resume any sort of official medical treatment for my multiple myeloma. Am I out of the woods. No, not by a long shot. I have lots of other problems but so far manage to accommodate them.
Best of luck ~ of course in the long run it's your decision what course of action to take . N.G.
PS - I just had my 76th birthday. Had a great time, family and friends back yard barbecue
I'm going to put in a vote the opposite of the 2 previous members. My reasoning behind this is two fold.
(1) If you never change your medical routine you will never know whether you could function without it , ~what Sacrilege they say ~ that all depends on your view point.
(2) In my own case. I was on thalidomide and dex for 10 months in 2004. My oncologist suggested stopping treatment as my blood readings were looking good. "No", not remission, but good readings. I was taken off the thalidomide & dex and have never returned to them - blood test readings remain about the same, good but not perfect, and I continue after 9+ years to go in every 6 months for blood tests. There has been no suggestion by my current oncologist to resume any sort of official medical treatment for my multiple myeloma. Am I out of the woods. No, not by a long shot. I have lots of other problems but so far manage to accommodate them.
Best of luck ~ of course in the long run it's your decision what course of action to take . N.G.
PS - I just had my 76th birthday. Had a great time, family and friends back yard barbecue
-
Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Stopping Revlimid?
I might suggest investigating a compromise with your doc. What about just going to a very low dose like 5mg Revlimid maintenance (or a low dose Velcade) regimen without the Dex? Be clear that I am not speaking from any personal experience here.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stopping Revlimid?
I have the same question. I've been on 2.5 mg of Revlimid for 20 months with minimal side effects (one bout of DVT, insomnia, fatigue,diarrhea, bad taste in mouth). Is the Revlimid keeping me in partial remission - 0.2 continuous M-spike - or would I be the same without taking it? Why not stop taking it until actual disease progression?
I never had a transplant and don't plan to.
I never had a transplant and don't plan to.
-
coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Stopping Revlimid?
I was on Revlimid before and after my transplant in August of 2012.
For some reason, my WBC had dropped in 2005 (discovered on a yearly physical). Was sent to a hematologist / oncologist who said they would not treat it since I was not symptomatic and never did any other tests except a few CBCs spaced months apart. My WBC stayed between 1.8 to 2.2 all this time.
When I got my multiple myeloma diagnosis and was put on Revlimid, my WBC actually stayed about the same, but my oncologist kept saying the Revlimid was knocking my count down. It seemed like it took FOREVER for me to accept the fact that it was my NORMAL, so I just continued on it.
After transplant, I was put on 5 mg 21 day on / 7 day off schedule. My counts did not recover enough during my 'off' week to begin the next month, so I started getting Neupogen 5 days a week during the 'off' week. I moved this year and in April I had my 1st visit to my new oncologist. We discussed the fact that if I had to get Neupogen in order to take the Revlimid, the Revlimid and I did not 'get along'. Plus I had the fatigue and other side effects that it probably was not a great choice.
He also stated that when I went out of remission, chances were I might have a better response to the next round of meds I will have to take. I am currently getting my labs and Zometa every other month and am still in remission. I am happy with the decision and am hoping the rationale behind the decision will pay off!
Best of luck to you in whatever you decide!
For some reason, my WBC had dropped in 2005 (discovered on a yearly physical). Was sent to a hematologist / oncologist who said they would not treat it since I was not symptomatic and never did any other tests except a few CBCs spaced months apart. My WBC stayed between 1.8 to 2.2 all this time.
When I got my multiple myeloma diagnosis and was put on Revlimid, my WBC actually stayed about the same, but my oncologist kept saying the Revlimid was knocking my count down. It seemed like it took FOREVER for me to accept the fact that it was my NORMAL, so I just continued on it.
After transplant, I was put on 5 mg 21 day on / 7 day off schedule. My counts did not recover enough during my 'off' week to begin the next month, so I started getting Neupogen 5 days a week during the 'off' week. I moved this year and in April I had my 1st visit to my new oncologist. We discussed the fact that if I had to get Neupogen in order to take the Revlimid, the Revlimid and I did not 'get along'. Plus I had the fatigue and other side effects that it probably was not a great choice.
He also stated that when I went out of remission, chances were I might have a better response to the next round of meds I will have to take. I am currently getting my labs and Zometa every other month and am still in remission. I am happy with the decision and am hoping the rationale behind the decision will pay off!
Best of luck to you in whatever you decide!
-
CamsTeee - Name: Camille
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 53
Re: Stopping Revlimid?
There was a post not too long ago that Emory has the most successful plan on multiple myeloma. It breaks down like this:
1. Get remission with Revlimid
2. SCT
3. Maintenance with Revlimid for 3 years.
This they have found is the best program for survivor-ability in multiple myeloma. I was treated by Dr. Jellila at the Georgia College of Medicine prior to his move to Emory. He had this plan for me and I have stuck to it. So far I am in very good remission. And yes my regular oncologist used the remission word.
I did develop toxicity to Revlimid recently and so have stopped taking it. But in the past, I would have some sever reactions to the higher dose (25 mg). But on the lower maintenance dose, not so many.
I agree, if you are not having issues with the dose of Revlimid, I would continue and see a multiple myeloma specialist for further guidance.
Best of luck and sending you strength.
1. Get remission with Revlimid
2. SCT
3. Maintenance with Revlimid for 3 years.
This they have found is the best program for survivor-ability in multiple myeloma. I was treated by Dr. Jellila at the Georgia College of Medicine prior to his move to Emory. He had this plan for me and I have stuck to it. So far I am in very good remission. And yes my regular oncologist used the remission word.
I did develop toxicity to Revlimid recently and so have stopped taking it. But in the past, I would have some sever reactions to the higher dose (25 mg). But on the lower maintenance dose, not so many.
I agree, if you are not having issues with the dose of Revlimid, I would continue and see a multiple myeloma specialist for further guidance.
Best of luck and sending you strength.
-
Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Stopping Revlimid?
The study that Mary is referring to is discussed in this article published last fall in the Beacon:
"Extended Post-Transplant Treatment With Revlimid, Velcade, And Dexamethasone Yields High Survival Rates In High-Risk Myeloma," November 26, 2013.
It's a retrospective, single-institution study, so one has to be hesitant about drawing too many conclusions from it.
However, as we noted in the article, the results are certainly noteworthy given the response rates and survival times observed in the study and the fact that it involved high-risk patients.
"Extended Post-Transplant Treatment With Revlimid, Velcade, And Dexamethasone Yields High Survival Rates In High-Risk Myeloma," November 26, 2013.
It's a retrospective, single-institution study, so one has to be hesitant about drawing too many conclusions from it.
However, as we noted in the article, the results are certainly noteworthy given the response rates and survival times observed in the study and the fact that it involved high-risk patients.
Re: Stopping Revlimid?
Thanks everyone and the Beacon for also posting my question on the Beacon's Facebook page.
To be clear, this is not maintenance. I had my SCT in 2006. This is my 3rd relapse, and each time Revlimid has been used and brought my M protein down to very good partial remissions.
I know we are all different and I appreciate the input.
I just have to think about it and talk to him next month. I'm thinking he's wanting me not to become resistant to Revlimid and if I go off it, the chances are good I can use it again when my m proteins go back up. Last time, we waited till it was @ 0.6.
But I had 1 year off.
To be clear, this is not maintenance. I had my SCT in 2006. This is my 3rd relapse, and each time Revlimid has been used and brought my M protein down to very good partial remissions.
I know we are all different and I appreciate the input.
I just have to think about it and talk to him next month. I'm thinking he's wanting me not to become resistant to Revlimid and if I go off it, the chances are good I can use it again when my m proteins go back up. Last time, we waited till it was @ 0.6.
But I had 1 year off.
-
Christina1952
13 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects