I am not on Rev/Dex as maintenance at this time. We are using it to get my Immunoglobulin IgA and Free Kappa Light Chain in check before my allo sct. I have been suffering from almost every single side effect listed. I have been on it for 21 days and had my check up on Friday. I was ready to tell the doctor to take me off of this drug! But my numbers dropped by half in 21 days! So I said let's stay the course. I have only two more months before my transplant, I can get through this, I have gotten through worse. So the side effects are listed out for a reason. The doctor's don't like it when you experience almost all of them, but when the evidence is sitting right in front of them they cannot refute.
While sitting waiting for appts on Friday, I had the great pleasure to meet two wonderful women who shared their experiences with me. It was just what I needed and believe they were sent by angels. Now I am so ready for my next sct and making plans for the future.
Happy days and soon a new story.
Forums
Re: Side effects of Revlimid as Maintenance Drug
I'm really confused about what to do about Revlimid maintenance. There are clinical considerations, quality of life considerations, and also costs. I'd be willing to pay the price if I know I'm making the right decision otherwise, but I'm still going back and forth. Delaying progression with maintenance is definitely appealing. I was really hoping that at ASH some of these trials would be able to show a survival benefit so that the answer would be clear, but even without that, just the peace of mind that the myeloma isn't going to come back as quickly and then not needing to figure out the next treatment, that's definitely worthwhile. So I was leaning toward maintenance. Unfortunately, it seems like not much new about this issue was presented at ASH except that maybe there's a higher risk of developing another cancer after being on Revlimid maintenance for a while. I definitely don't want to have to go through that. Any advice? What are the rest of you doing?
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Sherri
Re: Side effects of Revlimid as Maintenance Drug
I've been on a maintence dose of Revlimid for three and a half years with no side effects. The drug iI believe has helped to reduce my counts significantly after my stem cell transplants.Personally I think the benifits out way the risks.
Scott T.
Scott T.
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stierney1
Re: Side effects of Revlimid as Maintenance Drug
I was started on a maintenance dose of Revlimid 100 days after my transplant. Within 5 days I developed some pretty nasty side effects. My oncologist decided to discontinue the drug. He said that when, and if, I progressed that there were lots of other options that we could pursue so not doing maintenance would be ok. My numbers continued to drop even without the maintenance drug.
I don't think that anyone can really tell you which is the right way to go with this issue. Revlimid hasn't been on the market long enough to give long term survival data. Today one of the people in my support group stated that he has been on Revlimid for 9 years. He was in one of the original trials of the drug before FDA approval.
Good luck in deciding what to do.
Nancy
I don't think that anyone can really tell you which is the right way to go with this issue. Revlimid hasn't been on the market long enough to give long term survival data. Today one of the people in my support group stated that he has been on Revlimid for 9 years. He was in one of the original trials of the drug before FDA approval.
Good luck in deciding what to do.
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Side effects of Revlimid as Maintenance Drug
Hi,
I was asked to reply to the question from Sherri. The CALGB 100104 and IFM 05-02 studies showed a benefit in terms of time to progression improvement in patients receiving lenalidomide when compared to placebo. The CALGB 100104 study allowed cross over to lenalidomide from placebo at the time of the unblinding of the study in Dec of 2009 since the primary endpoint of the study, time to progression improvement had been met. Of interest the placebo patients on IFM 05-02 study have not crossed over to lenalidomide so there may be a survival benefit but this remains to be seen. Of note, patients on MM-015 receiving MPR followed by R maintenance, versus MP, versus MPR without R maintenance showed an improved progression free survival when receiving MPR with R maintenance but at three years, there is no survival difference. What these studies tell us is that patients are living longer with multiple myeloma and that the salvage regimens (treatments after relapse or progression) are effective at controlling the disease and inducing good responses. For a high risk patient, I think it is reasonable to consider lenalidomide maintenance after autotransplant. In particular, this would be those patients whose disease expressed chromosome13 deletions, 17p deletions and t 4:14 cytogenetic abnormalities especially the latter two abnormalities.
With regard to second malignancies, there were 25 second malignancies reported on CALGB 100104 of which 15 cases were seen on the lenalidomide arm, 6 on the placebo arm and 4 in patients who were not randomized (they did not see lenalidomide or placebo). These are prelminary data and have to be reviewed in detail and confirmed. Of note, multiple myeloma patients are at risk of developing second cancers as a consequence of developing myeloma and due to some of the myeloma therapies. The National Cancer Institute (NCI) is closely monitoring all USA lenalidomide studies and so far there is not a statistically significant increase in the development of second cancers. This points out the importance of participating in clinical trials. The patients on studies such as MM-015, IFM 05-02 and CALGB 100104 have been and will be closely monitored for long term effects. This also points out the importance of routine health care screenng.
I was asked to reply to the question from Sherri. The CALGB 100104 and IFM 05-02 studies showed a benefit in terms of time to progression improvement in patients receiving lenalidomide when compared to placebo. The CALGB 100104 study allowed cross over to lenalidomide from placebo at the time of the unblinding of the study in Dec of 2009 since the primary endpoint of the study, time to progression improvement had been met. Of interest the placebo patients on IFM 05-02 study have not crossed over to lenalidomide so there may be a survival benefit but this remains to be seen. Of note, patients on MM-015 receiving MPR followed by R maintenance, versus MP, versus MPR without R maintenance showed an improved progression free survival when receiving MPR with R maintenance but at three years, there is no survival difference. What these studies tell us is that patients are living longer with multiple myeloma and that the salvage regimens (treatments after relapse or progression) are effective at controlling the disease and inducing good responses. For a high risk patient, I think it is reasonable to consider lenalidomide maintenance after autotransplant. In particular, this would be those patients whose disease expressed chromosome13 deletions, 17p deletions and t 4:14 cytogenetic abnormalities especially the latter two abnormalities.
With regard to second malignancies, there were 25 second malignancies reported on CALGB 100104 of which 15 cases were seen on the lenalidomide arm, 6 on the placebo arm and 4 in patients who were not randomized (they did not see lenalidomide or placebo). These are prelminary data and have to be reviewed in detail and confirmed. Of note, multiple myeloma patients are at risk of developing second cancers as a consequence of developing myeloma and due to some of the myeloma therapies. The National Cancer Institute (NCI) is closely monitoring all USA lenalidomide studies and so far there is not a statistically significant increase in the development of second cancers. This points out the importance of participating in clinical trials. The patients on studies such as MM-015, IFM 05-02 and CALGB 100104 have been and will be closely monitored for long term effects. This also points out the importance of routine health care screenng.
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Dr. Philip McCarthy - Name: Philip McCarthy Jr., M.D.
Re: Side effects of Revlimid as Maintenance Drug
Thank you Scott and Nancy for sharing your experiences with Revlimid maintenance, and thank you very much Dr. McCarthy for explaining the results of the Revlimid maintenance trials. I really appreciate everyone's input. I think I'm going to have to digest this information for a while.
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Sherri
Re: Side effects of Revlimid as Maintenance Drug
Hello folks - your postings have been very useful thus far - my mom is suffering from multiple myeloma - she's 86 and was diagnosed almost 3 years now. she was previously on Thalidomide and Velcade and has just this week started Revlimid. first of all the price here in the islands is ridiculous, US$16,000 for 21 days of 25mg tablets and she has NO insurance!! secondly, today is the 3rd day and she's is now feeling really bad - contained to bed and feeling the same out of body experience some of u refer to; also diarrehea, weakness - the whole 9 yards. just to add - on Velcade she was doing pretty well, but that's only offered intravenously and she was tired of being injected between that and blood tests and blood transfusions!! her legs got weak and she blamed the Velcade, which we knew wasn't the cause, but she was insisting on Rev, which she had heard about. hence here we are!
she's older than most of you, but I would appreciate any advice or suggestions you may have to help me continue to care for her as best we can. Thanks and may God Bless u all.
she's older than most of you, but I would appreciate any advice or suggestions you may have to help me continue to care for her as best we can. Thanks and may God Bless u all.
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Island Ozzie
Re: Side effects of Revlimid as Maintenance Drug
Hi
I was diagnosed in Jan 2009. I had 5 months CDT and then a Auto transplant with Melphalan.
At diagnosis my PP was 64 (IGG 77.3) and CDT brought this down to about 6.5 within 4 months. Within 12 months of the Auto transplant my PP started rising. I have the 4.14 gene abnormality.
In January this year (PP up to 16) I went on CRD (Cyclo, Rev, Dex) and this bought it down to 7 within 4-5 months again. I have now dropped Cyclo and am on Rev & Dex maintenance. I have no side effects except on the day or two after taking dex I have a horrible taste in my mouth. I guess I will be on Rev / Dex for ever. I took my dex down to 20mg and Reis 25mg as usual. Good luck everyone out there. Cheers. Chris
I was diagnosed in Jan 2009. I had 5 months CDT and then a Auto transplant with Melphalan.
At diagnosis my PP was 64 (IGG 77.3) and CDT brought this down to about 6.5 within 4 months. Within 12 months of the Auto transplant my PP started rising. I have the 4.14 gene abnormality.
In January this year (PP up to 16) I went on CRD (Cyclo, Rev, Dex) and this bought it down to 7 within 4-5 months again. I have now dropped Cyclo and am on Rev & Dex maintenance. I have no side effects except on the day or two after taking dex I have a horrible taste in my mouth. I guess I will be on Rev / Dex for ever. I took my dex down to 20mg and Reis 25mg as usual. Good luck everyone out there. Cheers. Chris
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reescj1
Re: Side effects of Revlimid as Maintenance Drug
I was in the CALGB study and I crossed over from the placebo to Revlimid in Jan, 2010. My biggest side effects are diarrhea so bad it is a form if IBS, and I do have a sore mouth. Neuropathy just starting. For my mouth I keep away from all foods medium to hard texture, gargle with salt, use Biotene gel, and Orajel. Nothing I've found has stopped these side effects for me.
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dubll2011
Re: Side effects of Revlimid as Maintenance Drug
I have also experienced the pain in legs and flexibility loss. In questioning my Doctors. They noted that the process involved thru treatment prior and after the stemcell transplant would take no less than 75% of my muscle mass. And that the ligaments and tendons would begin to shorten due to lack of streching. So as painful as it was I started doing every kind of stretching possible but really working on the legs. Wow it hurt but!!! it took all the pain out of my legs. To protect my back I did this laying on the floor, and standing with heels over the end of a step and lower and raise my self. This stretches the ligiments and tendons. One thing I found hard was maintaining a level of hydration. Revlimid really causes me to dehydrate. I have no idea it is happening until it is bad. So I have to watch that I drink plenty of fluids. This is difficult when you aren't thirsty,but very very important.
Would do the stemcell again it was nothing. It has been a year and am very healthy just have to watch the side effects of Revlimid!
Would do the stemcell again it was nothing. It has been a year and am very healthy just have to watch the side effects of Revlimid!
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Linz
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