Hello,
I am a reader from Russia and I have learned a lot from the forum!
My mom is 72 years old. She was diagnosed with multiple myeloma about two years ago after she fell and had a vertebral fractures. It took several month to find out that she had multiple myeloma.
Initially she received Velcade (bortezomib) with other meds. She had some sort of remission, but it did not last long and then she received 4 cycles of Revlimid lately. Blood tests are good, or at least she was told so. Yet MRI results showed worsening of bone conditions. I don't know if the doctors are hiding true results from her, or blood tests are indeed okay.
Anyways, she was supposed to take a break for a couple of months to come visit us, but the docs suddenly told her that she would have to receive two more cycles of Revlimid. Currently she has acute back pain and started losing hair along with anemia and drowsiness. She says it's a bad sign.
I live in a different city so I don't know all the details. But she seems to be in panic because of the fact that Revlimid has not helped a lot, if any, and she started feeling worse.
Please advise if you had similar experience. Might it be a side effect?
I appreciate your advice.
Roman
Forums
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Re: Revlimid - back pain, hair loss
Hi Roman,
I am sorry to hear that your mother is in distress and that her myeloma seems to be worsening. Without looking at blood tests it is difficult to know how her condition is though. Probably the MRI would give some information though. Will her doctor contact you directly by phone to discuss her problems?
One advantage of the drug Revlimid is that it is in an oral pill form, so perhaps she could visit you for the duration of one cycle? Or, if possible, you could travel to see her and go with her to her doctor's appointments too, to get a better understanding of what is going on with her myeloma.
I hope that helps, and wishing you the best.
I am sorry to hear that your mother is in distress and that her myeloma seems to be worsening. Without looking at blood tests it is difficult to know how her condition is though. Probably the MRI would give some information though. Will her doctor contact you directly by phone to discuss her problems?
One advantage of the drug Revlimid is that it is in an oral pill form, so perhaps she could visit you for the duration of one cycle? Or, if possible, you could travel to see her and go with her to her doctor's appointments too, to get a better understanding of what is going on with her myeloma.
I hope that helps, and wishing you the best.
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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 - back pain, hair loss
Hello Roman,
Sorry to hear about your mother's condition.
Please recognize that I am not a doctor and only providing my personal observation based on my own experience.
I was on Kyprolis (carfilzomib), Revlimid, and dex for 2 years, off treatment for about 9 months, then have been on Revlimid, then Revlimid plus dex for the past 2 1/2 years. I have had some very minor hair loss, but nothing noticeable. I also get some bone and muscle aches, primarily in my legs and chest, but nothing severe. I do not experience much drowsiness at all from the Revlimid, but others have indicated they do.
In my opinion, the acute bone pain and anemia you report seem more symptomatic of the myeloma, than side effects of the Revlimid. Even though the treatment has produced better blood test results, your mother may still have bone lesions that are causing the acute pain, particularly since she previously had vertebra fractures.
The Revlimid may also have provided as much benefit as it can, and it may be time to augment it with additional drugs or pursue different treatment. For example, when I relapsed, I started with just Revlimid and it only helped for a few months. Dex was added to the Revlimid, and it's been working for another two years so far.
I'm not familiar with how the doctor/patient relationship works in Russia, but if she can, your mother (and you if you can help) need to be an advocate for her and ask for more information. Find out if she's still responding to the Revlimid, if there are bone lesions causing the pain, and what are her options.
Sorry to hear about your mother's condition.
Please recognize that I am not a doctor and only providing my personal observation based on my own experience.
I was on Kyprolis (carfilzomib), Revlimid, and dex for 2 years, off treatment for about 9 months, then have been on Revlimid, then Revlimid plus dex for the past 2 1/2 years. I have had some very minor hair loss, but nothing noticeable. I also get some bone and muscle aches, primarily in my legs and chest, but nothing severe. I do not experience much drowsiness at all from the Revlimid, but others have indicated they do.
In my opinion, the acute bone pain and anemia you report seem more symptomatic of the myeloma, than side effects of the Revlimid. Even though the treatment has produced better blood test results, your mother may still have bone lesions that are causing the acute pain, particularly since she previously had vertebra fractures.
The Revlimid may also have provided as much benefit as it can, and it may be time to augment it with additional drugs or pursue different treatment. For example, when I relapsed, I started with just Revlimid and it only helped for a few months. Dex was added to the Revlimid, and it's been working for another two years so far.
I'm not familiar with how the doctor/patient relationship works in Russia, but if she can, your mother (and you if you can help) need to be an advocate for her and ask for more information. Find out if she's still responding to the Revlimid, if there are bone lesions causing the pain, and what are her options.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Revlimid - back pain, hair loss
In addition to what Kevin J suggested, do you know if your mother has been receiving a bisphosphonate infusion for her bones? The 2 drugs used here in the US are Aredia (pamidronate) and Zometa (zoledronic acid). One, or the other, is given regularly to people who have had fractures because of myeloma lesions in the bones and/or have documented lesions in the bones without fractures. Since your mother's myeloma was discovered because of a fracture, it would seem that she should be getting one of the bisphosphonates to strengthen her bones. As a side effect of the drug often the bone pain resolves.
One other thing that could be happening is that the Revlimid dose is too high for your mother to manage. She might do better on a lower dose and with another drug such as dexamethasone and/or Velcade added to the treatment regimen. Research has found that even when a single drug stops being effective that when it is given again with another drug, it often works again. So, a regimen of Revlimid, Velcade, and dexamethasone (RVd) could be effective when Revlimid or Velcade by itself isn't working.
It seems that someone should go with your mother when she sees her oncologist to get more information about her condition. If possible see if she, or you, can get copies of her test results each time she goes.
All the best to your mother and to you in getting more information about your mother's condition and her treatment regimen,
Nancy in Phila
One other thing that could be happening is that the Revlimid dose is too high for your mother to manage. She might do better on a lower dose and with another drug such as dexamethasone and/or Velcade added to the treatment regimen. Research has found that even when a single drug stops being effective that when it is given again with another drug, it often works again. So, a regimen of Revlimid, Velcade, and dexamethasone (RVd) could be effective when Revlimid or Velcade by itself isn't working.
It seems that someone should go with your mother when she sees her oncologist to get more information about her condition. If possible see if she, or you, can get copies of her test results each time she goes.
All the best to your mother and to you in getting more information about your mother's condition and her treatment regimen,
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 - back pain, hair loss
Hi Roman,
You've gotten some good feedback, so I have just a few additional thoughts.
It's possible that the increasing pain your mother is experiencing is because she's been taken off of steroids. You say she originally was treated with Velcade. It may have been given with dexamethasone (a steroid), or with melphalan and prednisone (also a steroid).
Then she was switched to Revlimid. If she didn't stay on a steroid when she was switched to the Revlimid, which is possible, then she may have started experiencing pain that was hidden by the steroids while she was taking them.
Hair loss is not a common side effect of Revlimid, and it's also not a common side effect of any of the other medications your mother seems to have been receiving, or probably received, in the doses she probably received. BUT, if your mother was given a high dose of cyclophosphamide recently to stimulate stem cell production for a stem cell harvest, then that would cause hair loss.
I hope your mother starts to feel better soon.
You've gotten some good feedback, so I have just a few additional thoughts.
It's possible that the increasing pain your mother is experiencing is because she's been taken off of steroids. You say she originally was treated with Velcade. It may have been given with dexamethasone (a steroid), or with melphalan and prednisone (also a steroid).
Then she was switched to Revlimid. If she didn't stay on a steroid when she was switched to the Revlimid, which is possible, then she may have started experiencing pain that was hidden by the steroids while she was taking them.
Hair loss is not a common side effect of Revlimid, and it's also not a common side effect of any of the other medications your mother seems to have been receiving, or probably received, in the doses she probably received. BUT, if your mother was given a high dose of cyclophosphamide recently to stimulate stem cell production for a stem cell harvest, then that would cause hair loss.
I hope your mother starts to feel better soon.
Re: Revlimid - back pain, hair loss
Hello, Roman
My sister who has multiple myeloma is also in Russia. It would be interesting to compare treatments, though my sister is younger than your mother, so her treatment protocol would be different. Where in Russia is your mother?
My sister is now experiencing hair loss from her induction chemo (doxorubicin, Velcade, dex). I cannot yet say anything about Revlimid, as she has not had it. Did you mum have hair loss from her initial treatment? How long ago was it? Could it be still the consequence of earlier chemo?
I can understand your frustration being so far from your mother. I am also far from my sister and it's really hard.
My sister who has multiple myeloma is also in Russia. It would be interesting to compare treatments, though my sister is younger than your mother, so her treatment protocol would be different. Where in Russia is your mother?
My sister is now experiencing hair loss from her induction chemo (doxorubicin, Velcade, dex). I cannot yet say anything about Revlimid, as she has not had it. Did you mum have hair loss from her initial treatment? How long ago was it? Could it be still the consequence of earlier chemo?
I can understand your frustration being so far from your mother. I am also far from my sister and it's really hard.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
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