Hello,
My mum was diagnosed in 2013. She was on thalidomide and dex and had a auto stem cell transplant that got her a complete response for 15 months. She was on maintenance for 3 months and the last 12 months has been treatment free.
In October we got the news that her M-spike was at 5 g/L (0.5 g/dL) and she would be taken off the trial (we are in Australia). Her myeloma specialist then applied to the government for Revlimid. It took them 6 weeks to approve it. Her m spike is now at 20 g/L (2.0 g/dL). She had just been treated for hypercalcaemia and is on day 5 of the Revlimid.
She is is feeling rather down, with side effects of fever and headache. She is feeling like she cannot carry on with treatment if this is how she will be spending her days feeling.
I am hoping that there are some positive stories of people who have taken the Revlimid?
Her myeloma specialist has said treatment with Revlimid could give her 2 years, while no treatment would give her 6 months. I am not ready for her to give up. She has been through hell and back in the last 2 years. She is such a fighter. I am hoping in time the side effects with the Revlimid with subside and she will get back to her 'normal' life?
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Re: Revlimid treatment - positive experiences?
Hello Reneeb,
I am sorry to hear that your mother has relapsed and is feeling upset about being on Revlimid again. When I relapsed in September 2014 at an 'M' spike of approx 11 g/l (1.1 g/dl), I started on 25 mg Revlimid (21 days on, 7 days off) and 20 mg dex / week. This has worked well for me, although it took until just last month to get to an 'M' spike below 1 g/l. The side effects can include tiredness, bowel problems, hyperactivity or other problems from the 'dex', cramping ... the list goes on sometimes. It took me a few months to figure out how to work around the side effects, and usually I am in a 'new normal' now. I don't mind being on the medications since it is keeping my myeloma under control, and my friends and family are really supportive too.
I don't like it when doctors give prognoses that include a time frame, and thankfully my doctor has never said 'You have 'x' amount of time left." For one thing, we really don't know that nowadays, since new treatments come along, either by drug approvals in a country, clinical trial, or compassionate release from a drug company. I hope that Revlimid is soon approved in Australia.
So I would just encourage your mother to try the Revlimid. It might take a while to see results, but hopefully you will after a few cycles. Funny you said that she 'has been through hell and back'. A friend told me that too, but that was about five years ago now and I am still here!
I am sorry to hear that your mother has relapsed and is feeling upset about being on Revlimid again. When I relapsed in September 2014 at an 'M' spike of approx 11 g/l (1.1 g/dl), I started on 25 mg Revlimid (21 days on, 7 days off) and 20 mg dex / week. This has worked well for me, although it took until just last month to get to an 'M' spike below 1 g/l. The side effects can include tiredness, bowel problems, hyperactivity or other problems from the 'dex', cramping ... the list goes on sometimes. It took me a few months to figure out how to work around the side effects, and usually I am in a 'new normal' now. I don't mind being on the medications since it is keeping my myeloma under control, and my friends and family are really supportive too.
I don't like it when doctors give prognoses that include a time frame, and thankfully my doctor has never said 'You have 'x' amount of time left." For one thing, we really don't know that nowadays, since new treatments come along, either by drug approvals in a country, clinical trial, or compassionate release from a drug company. I hope that Revlimid is soon approved in Australia.
So I would just encourage your mother to try the Revlimid. It might take a while to see results, but hopefully you will after a few cycles. Funny you said that she 'has been through hell and back'. A friend told me that too, but that was about five years ago now and I am still here!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Revlimid treatment - positive experiences?
Hi reeneb
I took my Revlimid at night. I don't know when she is taking hers but maybe she could try taking it in the evening.
Best of luck to your mom
Rhonda
I took my Revlimid at night. I don't know when she is taking hers but maybe she could try taking it in the evening.
Best of luck to your mom
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Revlimid treatment - positive experiences?
Hi, Reneeb, Nancy and Rhonda.
It sounds like Reneeb's mother is discouraged and depressed. We can all relate to that, though as Nancy said, she (Nancy) has enjoyed 5 more years of life through different treatments, and I have enjoyed 3 1/2 years since I was diagnosed.
I was diagnosed in May 2012 with beta-2 microglobulin at 8.5 (greater than 5.5 is stage 3) and light chain deposition disease that had destroyed 75% of my kidneys. I had an autologous stem cell transplant (ASCT) in November 2012 and was on Revlimid every other day for 1 year before I started my "diabetic diet" (my oncologist suggested) and I was able to cut back my Revlimid to once a week and I finally was able to stop taking Revlimid last summer. I know some people strongly disagree that diet has an impact on cancer. I take 6 g curcumin per day (4 x 1000 mg tabs and 4 x 500 mg tabs - I take "Doctor's Best with Bioperine," and I take it with omega 3 and or coconut oil).
I eat a very low carb diet to keep my blood glucose low and steady and avoid insulin spikes. I also eat low protein - about 2 oz at lunch and dinner (I am a small 58 years old woman). I eat at least 3 tablespoons of coconut oil per day.
My multiple myeloma has been steady since I started this. It should help any treatment for multiple myeloma to eat very low carb and take curcumin. It costs very little to buy curcumin and coconut oil at the health food store and your mother could ease into taking them slowly. These have felt empowering to me – to have something I can do to help myself.
I hope this encourages your Mother, Reneeb.
Cathy
It sounds like Reneeb's mother is discouraged and depressed. We can all relate to that, though as Nancy said, she (Nancy) has enjoyed 5 more years of life through different treatments, and I have enjoyed 3 1/2 years since I was diagnosed.
I was diagnosed in May 2012 with beta-2 microglobulin at 8.5 (greater than 5.5 is stage 3) and light chain deposition disease that had destroyed 75% of my kidneys. I had an autologous stem cell transplant (ASCT) in November 2012 and was on Revlimid every other day for 1 year before I started my "diabetic diet" (my oncologist suggested) and I was able to cut back my Revlimid to once a week and I finally was able to stop taking Revlimid last summer. I know some people strongly disagree that diet has an impact on cancer. I take 6 g curcumin per day (4 x 1000 mg tabs and 4 x 500 mg tabs - I take "Doctor's Best with Bioperine," and I take it with omega 3 and or coconut oil).
I eat a very low carb diet to keep my blood glucose low and steady and avoid insulin spikes. I also eat low protein - about 2 oz at lunch and dinner (I am a small 58 years old woman). I eat at least 3 tablespoons of coconut oil per day.
My multiple myeloma has been steady since I started this. It should help any treatment for multiple myeloma to eat very low carb and take curcumin. It costs very little to buy curcumin and coconut oil at the health food store and your mother could ease into taking them slowly. These have felt empowering to me – to have something I can do to help myself.
I hope this encourages your Mother, Reneeb.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Revlimid treatment - positive experiences?
Yes, Antelope and Reneeb, I do hope that Reneeb's mother can feel up to trying the Revlimid again, even though the side effects are a bit daunting at times, for some. I hope that I did not discourage you after my posting. I only meant to say that the treatments worked well to halt my myeloma in its tracks. We patients are all different, even in our reactions to the meds.
What dose of Revlimid is she taking, and what age is she, if you wouldn't mind sharing that? Antelope I know has worked consistently over the last few years to modify her diet for improvements to her own health.
What dose of Revlimid is she taking, and what age is she, if you wouldn't mind sharing that? Antelope I know has worked consistently over the last few years to modify her diet for improvements to her own health.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Revlimid treatment - positive experiences?
Thank all so much for your replies. It means a lot. I will definitely look into everything you have suggested.
My mum is 58 and is on 25 mg of the Revlimid. She is getting a lot of the side effects still and, yes, I think she is depressed because at the moment she isn't well enough to work or care for her grandchildren doing everything she loves. She said tonight that she feels that she is not strong enough and doesn't have anymore fight left in her. I know in the end it is her choice, but I feel she shouldn't give up just yet.
My mum is 58 and is on 25 mg of the Revlimid. She is getting a lot of the side effects still and, yes, I think she is depressed because at the moment she isn't well enough to work or care for her grandchildren doing everything she loves. She said tonight that she feels that she is not strong enough and doesn't have anymore fight left in her. I know in the end it is her choice, but I feel she shouldn't give up just yet.
Re: Revlimid treatment - positive experiences?
HI Reneeb:
Without knowing a lot of your mother's background, it would appear that the M-spike is going down, and at some point the doctor might go over to a maintenance level. A quick point that I had posted on before – at certain points when the treatments have had side effects, but the myeloma has gone down and is less of an issue, at that point a good few rounds of sessions with a good and knowledgeable physical therapist might help.
Several posters have observed that this is helpful. The physical therapist, however, would need to be knowledgeable and experienced in the general reconditioning required of certain cancer patients. Having someone support you in this effort when you are feeling weak is oftentimes the difference in getting back in shape. It should start slow with massages, stretches, and low-level strength building, and slowly build up.
It would appear that at this stage your mother might need to keep with the Revlimid at a lower maintenance level, and my guess is that the physical therapy sessions would be a great change of her day-to-day regimen, and would be very helpful, overall.
Good luck.
Without knowing a lot of your mother's background, it would appear that the M-spike is going down, and at some point the doctor might go over to a maintenance level. A quick point that I had posted on before – at certain points when the treatments have had side effects, but the myeloma has gone down and is less of an issue, at that point a good few rounds of sessions with a good and knowledgeable physical therapist might help.
Several posters have observed that this is helpful. The physical therapist, however, would need to be knowledgeable and experienced in the general reconditioning required of certain cancer patients. Having someone support you in this effort when you are feeling weak is oftentimes the difference in getting back in shape. It should start slow with massages, stretches, and low-level strength building, and slowly build up.
It would appear that at this stage your mother might need to keep with the Revlimid at a lower maintenance level, and my guess is that the physical therapy sessions would be a great change of her day-to-day regimen, and would be very helpful, overall.
Good luck.
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JPC - Name: JPC
Re: Revlimid treatment - positive experiences?
I was diagnosed with myeloma in 2008 at the smoldering stage and progressed to active myeloma in 2009. My induction regimen was 15 mg of Revlimid for 21 days on, 7 days off, and 40 mg of dex once a week. I had an autologous stem cell transplant (ASCT) in January 2010 followed by no maintenance treatment. I was drug free for almost 3 years when I relapsed.
At relapse, my M-spike was 3.8 g/dl (38 g/l). I restarted treatment with 15 mg Revlimid 21 days on, 7 days off, and 20 mg dex once a week. Over the 3 years I've been on treatment since relapse in December 2012, my Revlimid dose has been decreased to 10 mg 21/7, then 10 mg every other day for 21 days and now back up to 10 mg 21/7 and a reduction of dex to 12 mg once a week.
I responded quickly to the restart of Revlimid and dex and have remained steady at about 0.6 g/dl (6 g/l) for almost 2 1/2 years. Yes, I have had various side effects, such as fatigue and GI problems, but my oncologist and I have been managing them so they aren't really disruptive. Maybe your mother should talk with her oncologist about lowering her Revlimid dose so that she doesn't experience such debilitating side effects – especially if her M-spike has responded to the 25 mg dose.
All the best to your mother. The emotional hit from relapsing isn't fun, and then to have side effects that make her feel awful doesn't help.
Nancy in Phila
At relapse, my M-spike was 3.8 g/dl (38 g/l). I restarted treatment with 15 mg Revlimid 21 days on, 7 days off, and 20 mg dex once a week. Over the 3 years I've been on treatment since relapse in December 2012, my Revlimid dose has been decreased to 10 mg 21/7, then 10 mg every other day for 21 days and now back up to 10 mg 21/7 and a reduction of dex to 12 mg once a week.
I responded quickly to the restart of Revlimid and dex and have remained steady at about 0.6 g/dl (6 g/l) for almost 2 1/2 years. Yes, I have had various side effects, such as fatigue and GI problems, but my oncologist and I have been managing them so they aren't really disruptive. Maybe your mother should talk with her oncologist about lowering her Revlimid dose so that she doesn't experience such debilitating side effects – especially if her M-spike has responded to the 25 mg dose.
All the best to your mother. The emotional hit from relapsing isn't fun, and then to have side effects that make her feel awful doesn't help.
Nancy in Phila
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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: Revlimid treatment - positive experiences?
Hello Reneeb,
Thanks for getting back here and I am glad that you are finding the replies helpful too! I wouldn't think that at her age one would want to 'give up' if the treatments are working, or at least holding the myeloma back. I only started with treatments at age 58 actually!
Maybe part of the problem is that she still wants to do everything that she could previously, and that might not be do-able anymore. If she could cut back on some commitments and concentrate on getting more rest and prioritizing what is most important to her, that might help.
Good luck, and I hope that she soon feels better also.
Thanks for getting back here and I am glad that you are finding the replies helpful too! I wouldn't think that at her age one would want to 'give up' if the treatments are working, or at least holding the myeloma back. I only started with treatments at age 58 actually!
Maybe part of the problem is that she still wants to do everything that she could previously, and that might not be do-able anymore. If she could cut back on some commitments and concentrate on getting more rest and prioritizing what is most important to her, that might help.
Good luck, and I hope that she soon feels better also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Revlimid treatment - positive experiences?
Hi Reneeb,
I'm sorry to hear about your mother's situation. You've gotten good advice and suggestions from the previous commenters in this thread.
I especially like two of the comments Nancy S. made: Don't pay much attention when a doctor says you have X amount of time left. Multiple myeloma is so complicated, individualized, and unpredictable that nobody really knows how things will go.
And the other great point Nancy made is that your mother may be upset about not being able to do all of the things she used to do. That hits all of us to some extent. But I try to remember a sign that is posted on a wall at every meeting of the multiple myeloma support group that I belong to: "Don't let what you can't do stop you from doing what you can do."
That brings me to my first suggestion for your mother - are there any multiple myeloma support groups nearby that she could attend? Going to a meeting or two might help her feel better, meeting others going through the same thing she is experiencing and drawing some inspiration from them.
Second, is it possible that your mother could have access to any clinical trials in Australia where she might try some of the newest anti-myeloma drugs? She might have fewer side effects from some of them.
Finally, as a direct answer to the question you pose as the subject of this thread, I think Revlimid has helped me a lot. I was on RVD for induction and consolidation therapy before and after my SCT in the middle of 2013. And I have been on Revlimid maintenance for most of the time since Sept, 2013. I achieved sCR and MRD negative status while in maintenance, so it seems that I have responded well to Revlimid.
I should also mention that I have had some side effects including some heart issues, diarrhea, low platelets, and low white cells. But so far we've managed to deal with those reasonably well.
Best of luck to you and your mother.
Mike
I'm sorry to hear about your mother's situation. You've gotten good advice and suggestions from the previous commenters in this thread.
I especially like two of the comments Nancy S. made: Don't pay much attention when a doctor says you have X amount of time left. Multiple myeloma is so complicated, individualized, and unpredictable that nobody really knows how things will go.
And the other great point Nancy made is that your mother may be upset about not being able to do all of the things she used to do. That hits all of us to some extent. But I try to remember a sign that is posted on a wall at every meeting of the multiple myeloma support group that I belong to: "Don't let what you can't do stop you from doing what you can do."
That brings me to my first suggestion for your mother - are there any multiple myeloma support groups nearby that she could attend? Going to a meeting or two might help her feel better, meeting others going through the same thing she is experiencing and drawing some inspiration from them.
Second, is it possible that your mother could have access to any clinical trials in Australia where she might try some of the newest anti-myeloma drugs? She might have fewer side effects from some of them.
Finally, as a direct answer to the question you pose as the subject of this thread, I think Revlimid has helped me a lot. I was on RVD for induction and consolidation therapy before and after my SCT in the middle of 2013. And I have been on Revlimid maintenance for most of the time since Sept, 2013. I achieved sCR and MRD negative status while in maintenance, so it seems that I have responded well to Revlimid.
I should also mention that I have had some side effects including some heart issues, diarrhea, low platelets, and low white cells. But so far we've managed to deal with those reasonably well.
Best of luck to you and your mother.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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