I am a 62 year old practicing physician diagnosed with kappa light chain multiple myeloma in September 2014. I was classified as stage 1 with no high risk features or chromosomal abnormalities. I have received 3 courses of Zometa and was started on dex 40 mg weekly and Revlimid 25 mg. After my first cycle, my M spike decreased from 3.2 g/dL to 1.7 and total protein from 9.5 g to 7.2.
My problem is that I have suffered from all the frequently discussed side effects in these forums. In addition, I have experienced 3 episodes of passing out after meals during the last 3 days before my next dex dose, which I suspect are from insulin overshoot while having higher blood sugars during the first 4 days caused by the dex. Although I wonder if it also was caused by Rev.
I am now monitoring my blood sugars with a glucose meter even though I have never suffered from diabetes. I have experienced severe fatigue and a feeling of exhaustion that makes difficult to keep with my work load. These symptoms improved greatly the week I was off Revlimid!
I just finished the first week of my second cycle and the level of fatigue and mind fog was brutal! My oncologist just reduced the dose of Revlimid to 20 mg, which I am waiting to receive and start. The last 3 days off Revlimid but on dex have been much better.
I am concerned that slightly reducing the Revlimid dose may not cause as good a response as I was experiencing, and wonder if others have been in my situation and will like to share their experience.
It seems that the overall side effects are worse during the first week after the Zometa infusion.
Going through this experience as physician and patient has been a learning experience that is making me a more caring and understanding than I have ever been.
Thanks. Dr Santiago
Forums
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rafaelmsantiagomd - Name: Rafael M Santiago MD
- Who do you know with myeloma?: Myself, some of my patients
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 62
Re: Recently diagnosed with multiple myeloma
I took Revlimid for about a week but had to stop due to breaking out in a rash on my head and face. This went away in about 10 days after I stopped taking Revilmid.
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chade213
Re: Recently diagnosed with multiple myeloma
Rafael,
Yes, it could be the Revlimid. I was on varying doses over the course of 3 plus years of maintenance. I also took dex the first round to assist in preparing for my stem cell transplant. Revlimid does cause fatigue and it can cause your sugar to drop. I have been borderline hyperglycemic (normal blood sugar but when it gets low I get shaky and dizzy and sweaty), and the Revlimid made this condition worse. So I had to make sure I ate small meals all through the day to keep from being sick.
And the fatigue was rough. It took all I could do to get going everyday. I loved my job and looked forward to going everyday, but the Revlimid made it hard to be "up" all day. I needed a nap in the afternoon. Even now, after being off of the Revlimid for 8 plus months, I am still fatigued in the afternoon and find myself dozing in the chair in the late afternoon.
But slowly I got used to the regimen and was able to continue to work until my position was terminated and I was laid off. But by this time, I had become so toxic to Revlimid, that I was having a nose bleed that lasted 3 weeks, off and on, to the point that I had to have a transfusion just so I could get the bleeder cauterized to stop the nose bleed. I had lost over 35 pounds and had no appetite and my bowels were in a mess. So you will need to be aware of the constipation that Revlimid can cause, or you may be the one that gets the diarrhea.
I wish you health and be strong. I know as a physician, you may know it all, but with this cancer, you must get a specialist in multiple myeloma and rely on their knowledge to survive and even thrive with this cancer.
Much luck.
Mary
Yes, it could be the Revlimid. I was on varying doses over the course of 3 plus years of maintenance. I also took dex the first round to assist in preparing for my stem cell transplant. Revlimid does cause fatigue and it can cause your sugar to drop. I have been borderline hyperglycemic (normal blood sugar but when it gets low I get shaky and dizzy and sweaty), and the Revlimid made this condition worse. So I had to make sure I ate small meals all through the day to keep from being sick.
And the fatigue was rough. It took all I could do to get going everyday. I loved my job and looked forward to going everyday, but the Revlimid made it hard to be "up" all day. I needed a nap in the afternoon. Even now, after being off of the Revlimid for 8 plus months, I am still fatigued in the afternoon and find myself dozing in the chair in the late afternoon.
But slowly I got used to the regimen and was able to continue to work until my position was terminated and I was laid off. But by this time, I had become so toxic to Revlimid, that I was having a nose bleed that lasted 3 weeks, off and on, to the point that I had to have a transfusion just so I could get the bleeder cauterized to stop the nose bleed. I had lost over 35 pounds and had no appetite and my bowels were in a mess. So you will need to be aware of the constipation that Revlimid can cause, or you may be the one that gets the diarrhea.
I wish you health and be strong. I know as a physician, you may know it all, but with this cancer, you must get a specialist in multiple myeloma and rely on their knowledge to survive and even thrive with this cancer.
Much luck.
Mary
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Recently diagnosed with multiple myeloma
I have Kappa light chain myeloma, stage 1, and am standard risk. I was diagnosed in Sept. 2013. I started on 25mg of Revlimid in Nov. 2013. After two weeks, my absolute neutrophils had gone down to 0.3. My doctor stopped the course and lowered the dose to 15mg, which I began when the second cycle would normally have begun. I have had no problem since then. I am in a clinical trial and take the ID/placebo, the 15mg Rev. and 40mg Dex. I have had few side affects (constipation), and until recently, no fatigue. I have no co-morbidities and was taking no other drugs at the time I started the regimen, or currently.
I just recently have begun to have a problem with peripheral neuropathy in both feet. It is currently considered mild, but is very worrisome to me. The investigational drug is a pill form of Velcade, but I'm not sure I am getting it. If I am on the placebo, is the neuropathy coming from the Revlimid? It is in the same family as Thalidomide, which can cause neuropathy. Anybody on Relimid have any experience with such neuropathy?
I just recently have begun to have a problem with peripheral neuropathy in both feet. It is currently considered mild, but is very worrisome to me. The investigational drug is a pill form of Velcade, but I'm not sure I am getting it. If I am on the placebo, is the neuropathy coming from the Revlimid? It is in the same family as Thalidomide, which can cause neuropathy. Anybody on Relimid have any experience with such neuropathy?
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monty - Name: monty
- Who do you know with myeloma?: self
- When were you/they diagnosed?: September 5, 2013
- Age at diagnosis: 69
Re: Recently diagnosed with multiple myeloma
Rafael, forgive me if I jump on your thread to ask Monty a question.
Monty,
So, you are in one of the ixazomib (ML9708) trials? Do you mind me asking which specific trial you are in? I was always under the impression that with cancer trials the patients would typically know which arm of the trial they were in. Am I mistaken about this?
One of the hopes of ixazomib is that it will result in fewer and milder cases of PN in patients than what folks experience with the current IV and subq Velcade options. But the early studies show that there are still some patients that experience some level of PN with ixazomib.
Monty,
So, you are in one of the ixazomib (ML9708) trials? Do you mind me asking which specific trial you are in? I was always under the impression that with cancer trials the patients would typically know which arm of the trial they were in. Am I mistaken about this?
One of the hopes of ixazomib is that it will result in fewer and milder cases of PN in patients than what folks experience with the current IV and subq Velcade options. But the early studies show that there are still some patients that experience some level of PN with ixazomib.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Recently diagnosed with multiple myeloma
Hi Monty,
On the topic of neuropathy, i did develop mild neuropathy in my toes from the IV Velcade I took five years ago. It never totally disappeared, but now that I have been taking 25 mg. Rev. for two cycles, it is a bit more pronounced. My doctor does ask about this, and I will keep reporting on it. I hope that it does not get worse, but you never know about that! I am fortunate to not yet have had really painful, debilitating PN. Apparently both Rev. and Velcade can cause neuropathy. Now of course Velcade is available in a sub-Q injection, which is supposed to reduce PN.
On the topic of neuropathy, i did develop mild neuropathy in my toes from the IV Velcade I took five years ago. It never totally disappeared, but now that I have been taking 25 mg. Rev. for two cycles, it is a bit more pronounced. My doctor does ask about this, and I will keep reporting on it. I hope that it does not get worse, but you never know about that! I am fortunate to not yet have had really painful, debilitating PN. Apparently both Rev. and Velcade can cause neuropathy. Now of course Velcade is available in a sub-Q injection, which is supposed to reduce PN.
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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: Recently diagnosed with multiple myeloma
To Rafael - I forgot to mention that my M-spike was 3.0 when I started, and it is now 0.2! So the regimen is working very well.
To Nancy s. - Thanks, it is interesting to note that your neuropathy is more pronounced now that you are on Rev.
As for the clinical trial, yes it is MLN9708. It is a double blind trial (all good ones are) which means that neither the patient nor your doctor knows if you are on the investigational drug or the placebo. You are randomly assigned by computer. If you have significant problems and they need to break the code for your health's sake, they will. That usually means you are no longer in the clinical trial.
Happy Thanksgiving, everyone.
To Nancy s. - Thanks, it is interesting to note that your neuropathy is more pronounced now that you are on Rev.
As for the clinical trial, yes it is MLN9708. It is a double blind trial (all good ones are) which means that neither the patient nor your doctor knows if you are on the investigational drug or the placebo. You are randomly assigned by computer. If you have significant problems and they need to break the code for your health's sake, they will. That usually means you are no longer in the clinical trial.
Happy Thanksgiving, everyone.
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monty - Name: monty
- Who do you know with myeloma?: self
- When were you/they diagnosed?: September 5, 2013
- Age at diagnosis: 69
Re: Recently diagnosed with multiple myeloma
I am glad to hear that you were able to participate in this clinical trial with ixazomib / MLN9708 in combination with Revlimid and dex and that you have had a very good partial response (VGPR: M-spike reduction from 3 g/dL to 0.2 g/dL). It is always an excellent opportunity for all patients to participate in trials to develop new drugs and drug combinations and hopefully contribute to the eventual approval of new therapeutic options for all multiple myeloma patients.
I am sorry that you are developing peripheral neuropathy (PN). As you have heard, there is a small percentage of patients that develop peripheral neuropathy even with ixazomib (though much less than with Velcade [bortezomib]). It is important that you let your MD and CTC (clinical trial coordinator) know of the symptoms so that they can be recorded, your dosing can be amended appropriately, and supportive care can be implemented appropriately. There are numerous supportive care measure to help when necessary. However, as your are on study, I would not start until you have discussed this with the parties above. Further, although quite rare with Revlimid, neuropathy can result. However, I would argue that the cumulative dosing of MLN9708 is likely the culprit.
Happy Thanksgiving.
I am sorry that you are developing peripheral neuropathy (PN). As you have heard, there is a small percentage of patients that develop peripheral neuropathy even with ixazomib (though much less than with Velcade [bortezomib]). It is important that you let your MD and CTC (clinical trial coordinator) know of the symptoms so that they can be recorded, your dosing can be amended appropriately, and supportive care can be implemented appropriately. There are numerous supportive care measure to help when necessary. However, as your are on study, I would not start until you have discussed this with the parties above. Further, although quite rare with Revlimid, neuropathy can result. However, I would argue that the cumulative dosing of MLN9708 is likely the culprit.
Happy Thanksgiving.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Recently diagnosed with multiple myeloma
Rafael-
There are so many different regimens for dosing of Revlimid and of dex that those of us who are taking this combination have varying degrees of what you are experiencing.
I started on 15 mg of Revlimid and 40 mg of dex once a week. I had quite a bit of fatigue with the dex crash and with the Revlimid. Working was difficult from a cognitive aspect, writing patient notes, etc. I was a PT. I also had severe cramping at night in my legs, feet, abdomen, back, etc. During the day I would get hand cramping when I used my hands for extended periods of time in patient care and in computer work.
I also had episodes of light headedness. I have high BP and take a BP medication. At one of my appointments where I received my Zometa infusion, my BP was quite low. I monitored it daily for a couple of weeks and found that it was low all of the time. I talked with my GP about it and asked him to lower my BP medication. He suggested that I stop it for a while to see what would happen. About 3 months later my BP began to be elevated again. I was put back on medication, but at a much lower dose. The episodes of light headedness haven't returned and my BP is good with the lower dose of medication.
I relapsed about 3 years after having a stem cell transplant. When I restarted treatment with Revlimid and dex again, I took 15 mg of Revlimid and a reduced dose of dex (20 mg). The side effects from the dex are relatively minimal now with only the occasional cramping episode. The brain fog and fatigue are less now, but they were interfering with my ability to do my documentation efficiently because I had to be so careful about mistakes and had word finding problems. It was one of the many reasons that I decided to retire.
Remember that if you are anemic that that will contribute to your fatigue level. Lowering of your Revlimid dose shouldn't hurt your response to the drug. Your oncologist will keep a sharp eye on your numbers, as I'm sure you will. And s/he will make adjustments to your regimen as needed. I'm now on 10 mg of Revlimid and it is managing my myeloma quite well.
I wish you well in finding the right levels of drugs for you and in being able to continue to work as a physician. I know that living with myeloma really helped me relate to my patients and they to me. I specialized in treating people with cancer.
Nancy in Phila
There are so many different regimens for dosing of Revlimid and of dex that those of us who are taking this combination have varying degrees of what you are experiencing.
I started on 15 mg of Revlimid and 40 mg of dex once a week. I had quite a bit of fatigue with the dex crash and with the Revlimid. Working was difficult from a cognitive aspect, writing patient notes, etc. I was a PT. I also had severe cramping at night in my legs, feet, abdomen, back, etc. During the day I would get hand cramping when I used my hands for extended periods of time in patient care and in computer work.
I also had episodes of light headedness. I have high BP and take a BP medication. At one of my appointments where I received my Zometa infusion, my BP was quite low. I monitored it daily for a couple of weeks and found that it was low all of the time. I talked with my GP about it and asked him to lower my BP medication. He suggested that I stop it for a while to see what would happen. About 3 months later my BP began to be elevated again. I was put back on medication, but at a much lower dose. The episodes of light headedness haven't returned and my BP is good with the lower dose of medication.
I relapsed about 3 years after having a stem cell transplant. When I restarted treatment with Revlimid and dex again, I took 15 mg of Revlimid and a reduced dose of dex (20 mg). The side effects from the dex are relatively minimal now with only the occasional cramping episode. The brain fog and fatigue are less now, but they were interfering with my ability to do my documentation efficiently because I had to be so careful about mistakes and had word finding problems. It was one of the many reasons that I decided to retire.
Remember that if you are anemic that that will contribute to your fatigue level. Lowering of your Revlimid dose shouldn't hurt your response to the drug. Your oncologist will keep a sharp eye on your numbers, as I'm sure you will. And s/he will make adjustments to your regimen as needed. I'm now on 10 mg of Revlimid and it is managing my myeloma quite well.
I wish you well in finding the right levels of drugs for you and in being able to continue to work as a physician. I know that living with myeloma really helped me relate to my patients and they to me. I specialized in treating people with cancer.
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: Recently diagnosed with multiple myeloma
Dear Nancy, Chade, Mary and Monty:
Thanks for responding to my introductory post. I found your comments helpful and insightful.
I tried posting something yesterday but I think I might had done something wrong since it did not come out.
As a pulmonary physician I am familiar with the early and late side effects of corticosteroids like dexamethasone, particularly when prescribed in high doses and for pronged periods of time. I have experienced the typical anxiety , insomnia, moodiness, heartburn, mild weight gain and typical crash that so many of you have described so well in the many posts I have read.
Drugs like Revlimid and some others currently used to treat myeloma are a different beast altogether, as far as I am concerned. These are immunomodulating drugs, some which we do not clearly understand how they work in myeloma. These drugs can cause the release of cytokines and affect our bodies in many different ways that may not be easily predictable. I believe this is why a dose of this drug may not be optimal for some and too toxic for others. I am also having the extreme fatigue, slowing of my gastrointestinal tract and low mood when on the drug -- side effects that improve on my week off.
I am not naive and unrealistic to think that we can can go through this treatment without experiencing side effects. I am starting my slightly lower dose of Revlimid (20 mg) today and hope I can tolerate this dose better.
When I see my patients with lung cancers, aggressive refractory lymphomas and leukemias and other solid tumors and the toll that their bodies take during treatment , I thank The Lord that I (we) have an illness that can be treated and controlled more effectively these days, although not cured yet (I am hopeful there will be a cure in the future).
I wish everyone who suffers from this illness luck in keeping their disease controlled or in remission. I a also want to wish their caregivers, including my wife, the emotional and physical strength to keep us emotionally and physically strong during this trying times. May God Bless you all!
Until next time , stay strong!
Rafael
Thanks for responding to my introductory post. I found your comments helpful and insightful.
I tried posting something yesterday but I think I might had done something wrong since it did not come out.
As a pulmonary physician I am familiar with the early and late side effects of corticosteroids like dexamethasone, particularly when prescribed in high doses and for pronged periods of time. I have experienced the typical anxiety , insomnia, moodiness, heartburn, mild weight gain and typical crash that so many of you have described so well in the many posts I have read.
Drugs like Revlimid and some others currently used to treat myeloma are a different beast altogether, as far as I am concerned. These are immunomodulating drugs, some which we do not clearly understand how they work in myeloma. These drugs can cause the release of cytokines and affect our bodies in many different ways that may not be easily predictable. I believe this is why a dose of this drug may not be optimal for some and too toxic for others. I am also having the extreme fatigue, slowing of my gastrointestinal tract and low mood when on the drug -- side effects that improve on my week off.
I am not naive and unrealistic to think that we can can go through this treatment without experiencing side effects. I am starting my slightly lower dose of Revlimid (20 mg) today and hope I can tolerate this dose better.
When I see my patients with lung cancers, aggressive refractory lymphomas and leukemias and other solid tumors and the toll that their bodies take during treatment , I thank The Lord that I (we) have an illness that can be treated and controlled more effectively these days, although not cured yet (I am hopeful there will be a cure in the future).
I wish everyone who suffers from this illness luck in keeping their disease controlled or in remission. I a also want to wish their caregivers, including my wife, the emotional and physical strength to keep us emotionally and physically strong during this trying times. May God Bless you all!
Until next time , stay strong!
Rafael
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rafaelmsantiagomd - Name: Rafael M Santiago MD
- Who do you know with myeloma?: Myself, some of my patients
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 62
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