Hi!
I was directed to the Beacon by one of my nurse practitioners two years ago. I finally have decided it was time to register. I was diagnosed with multiple myeloma 3 years ago after a painful bone marrow biopsy by (possibly) not the best doctor around. He told me I was smoldering and wanted to start me on treatment almost immediately. This scared me enough to call the top cancer hospital in the area, where I've been through all the tests we all know about.
Last year (June 2015) I volunteered for a clinical trial, which brought down my multiple myeloma numbers overall, but caused blood clots in my lungs. After 8 days in the hospital on heparin, I decided to drop out of the trial. I'm currently on maintenance of 10 mg of Revlimid without any steroids. I will soon be on 15 mg of Revlimid as my M-spike has slowly increased since January.
I feel very lucky in that I'm relatively healthy otherwise and don't have any other medical issues other than multiple myeloma. So far so good, but as you all know, that Revlimid wreaks havoc on your intestines. Ugh!
Looking forward to advice and support. Thank you all.
Forums
7 posts
• Page 1 of 1
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Pat Tesone - Name: Pat Tesone
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 24, 2013
- Age at diagnosis: 62
Re: Diagnosed 3 years ago, on Revlimid maintenance
Hi Pat:
If you do not mind me asking, what was the initial regimen that caused the blood clots in your case?
Regards
If you do not mind me asking, what was the initial regimen that caused the blood clots in your case?
Regards
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JPC - Name: JPC
Re: Diagnosed 3 years ago, on Revlimid maintenance
Hi JPC!
I was on a clinical trial at Memorial Sloan Kettering June 26, 2015 until September 2, 2015. I was on 25 mg Revlimid 21 days on and 7 off, along with 40 mg of dexamethasone once weekly for four cycles. The object of the trial was to see which was more effective: meds alone, or meds in combination with a stem cell transplant. The actual trial is listed as IRB Protocol #08-121 A(18).
With the exception of being an overweight woman, I am in relative good health: normal blood pressure, no diabetes, and no cholesterol issues.
Altogether there were other meds that were a part of the trial. To mitigate blood clots, one of the meds on the trial was one baby aspirin daily. For me that was not strong enough. As of October 2015, I was put on a maintenance dosage of 10 mg of Revlimid and injectible blood thinner, Lovenox (enoxaparin). I've been off Lovenox for the last five months and switched to Eliquis (apixaban).
I could go on, but won't - for now. Let me know if you have any other questions.
I was on a clinical trial at Memorial Sloan Kettering June 26, 2015 until September 2, 2015. I was on 25 mg Revlimid 21 days on and 7 off, along with 40 mg of dexamethasone once weekly for four cycles. The object of the trial was to see which was more effective: meds alone, or meds in combination with a stem cell transplant. The actual trial is listed as IRB Protocol #08-121 A(18).
With the exception of being an overweight woman, I am in relative good health: normal blood pressure, no diabetes, and no cholesterol issues.
Altogether there were other meds that were a part of the trial. To mitigate blood clots, one of the meds on the trial was one baby aspirin daily. For me that was not strong enough. As of October 2015, I was put on a maintenance dosage of 10 mg of Revlimid and injectible blood thinner, Lovenox (enoxaparin). I've been off Lovenox for the last five months and switched to Eliquis (apixaban).
I could go on, but won't - for now. Let me know if you have any other questions.
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Pat Tesone - Name: Pat Tesone
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 24, 2013
- Age at diagnosis: 62
Re: Diagnosed 3 years ago, on Revlimid maintenance
Good morning, Pat:
I am sorry that you had the blood clots on Revlimid. You have some issues similar to my wife's case, but differences, too. She is also at Sloan-Kettering. She was MGUS for about 8 years, but only lasted a year in smoldering, as she advanced quickly. After the fact, it did appear that she was one of the cases that may have benefited from treatment at smoldering. However, there were few trials three year ago. We were at another hospital (where we were generally pleased) but moved to Sloan-Kettering when she progressed to active multiple myeloma. We are quite happy overall with MSKCC. There are little issues here and there related to scheduling and long waits, but very good at the important things.
My recent reading is that the Revlimid given at smoldering does appear to delay the onset of multiple myeloma. There is not a huge amount of data, but what I have seen does suggest that it might be something like 5 years (an update of a study done this year by Dr. Mateos's group in Spain) on an overall average basis. Once progressing to active multiple myeloma, the early data appears that you would be roughly on an equal footing to those newly diagnosed, but not having early treatment, so you do seem to gain some time in an overall sense. Were you (and the doctors) happy with the response that you got on the Revlimid / dex treatment? Did it knock down the M-spike a lot?? My other question would be whether or not they intend to extend the Revlimid maintenance indefinitely.
I was aware that MSKCC had a smoldering clinical trial that was started about a year or two ago, but I was not aware that it had an autologous stem cell transplant arm. It would seem to me that one of the points of getting treatment at smoldering would be to reduce the possibility of requiring a potentially difficult stem cell transplant in the future.
I don't have any specific advice for you. I hope you maintain positive numbers for a long long time. I would only say that other multiple myeloma treatments also cause blood clots, and if you are generally susceptible to that, you may want to investigate if there are approaches that you could take (stronger drugs, diet, etc.) that could improve that aspect.
Thank you for the information and good luck to you. Regards,
I am sorry that you had the blood clots on Revlimid. You have some issues similar to my wife's case, but differences, too. She is also at Sloan-Kettering. She was MGUS for about 8 years, but only lasted a year in smoldering, as she advanced quickly. After the fact, it did appear that she was one of the cases that may have benefited from treatment at smoldering. However, there were few trials three year ago. We were at another hospital (where we were generally pleased) but moved to Sloan-Kettering when she progressed to active multiple myeloma. We are quite happy overall with MSKCC. There are little issues here and there related to scheduling and long waits, but very good at the important things.
My recent reading is that the Revlimid given at smoldering does appear to delay the onset of multiple myeloma. There is not a huge amount of data, but what I have seen does suggest that it might be something like 5 years (an update of a study done this year by Dr. Mateos's group in Spain) on an overall average basis. Once progressing to active multiple myeloma, the early data appears that you would be roughly on an equal footing to those newly diagnosed, but not having early treatment, so you do seem to gain some time in an overall sense. Were you (and the doctors) happy with the response that you got on the Revlimid / dex treatment? Did it knock down the M-spike a lot?? My other question would be whether or not they intend to extend the Revlimid maintenance indefinitely.
I was aware that MSKCC had a smoldering clinical trial that was started about a year or two ago, but I was not aware that it had an autologous stem cell transplant arm. It would seem to me that one of the points of getting treatment at smoldering would be to reduce the possibility of requiring a potentially difficult stem cell transplant in the future.
I don't have any specific advice for you. I hope you maintain positive numbers for a long long time. I would only say that other multiple myeloma treatments also cause blood clots, and if you are generally susceptible to that, you may want to investigate if there are approaches that you could take (stronger drugs, diet, etc.) that could improve that aspect.
Thank you for the information and good luck to you. Regards,
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JPC - Name: JPC
Re: Diagnosed 3 years ago, on Revlimid maintenance
Hallo Pat,
I have been on Revlimid maintenance for nearly 6 years and managed to solve my intestinal problems thanks to a blog that I read. I regularly got unpredictable attacks of diarrhoea that affected everything I did outside home. I now take Questran (cholestyramine) daily and the result is magical. Might work for you too.
Best wishes,
Annette
I have been on Revlimid maintenance for nearly 6 years and managed to solve my intestinal problems thanks to a blog that I read. I regularly got unpredictable attacks of diarrhoea that affected everything I did outside home. I now take Questran (cholestyramine) daily and the result is magical. Might work for you too.
Best wishes,
Annette
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AnnettevT
Re: Diagnosed 3 years ago, on Revlimid maintenance
Hi Annette,
Thanks for the advice regarding Questran. My next appointment with the oncologist is early October, so I'll mention it. For now I've taken Imodium (loperamide), which has worked. I've taken one first thing in the morning and haven't had any of those unpredictable episodes.
What dosage of Revlimid are you taking? During my brief stint on the clinical trial last year, I was on 25 mg plus 40 mg dex. Since October, I've been on 10 mg, but because the M1 spike has gone up a bit, my doctor has increased the dosage to 15 mg. If it keeps those numbers down I'll just go with the doctor's recommendation.
Thanks for your response and recommendation for a solution to those "Revlimid episodes," as I call them.
Thanks for the advice regarding Questran. My next appointment with the oncologist is early October, so I'll mention it. For now I've taken Imodium (loperamide), which has worked. I've taken one first thing in the morning and haven't had any of those unpredictable episodes.
What dosage of Revlimid are you taking? During my brief stint on the clinical trial last year, I was on 25 mg plus 40 mg dex. Since October, I've been on 10 mg, but because the M1 spike has gone up a bit, my doctor has increased the dosage to 15 mg. If it keeps those numbers down I'll just go with the doctor's recommendation.
Thanks for your response and recommendation for a solution to those "Revlimid episodes," as I call them.
-
Pat Tesone - Name: Pat Tesone
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 24, 2013
- Age at diagnosis: 62
Re: Diagnosed 3 years ago, on Revlimid maintenance
Hi JPC!
Thank you for sharing information. I became a patient at Sloan Kettering in October 2013 but didn't start treatment until June 2015. My doctor told me that he was going to start me on "standard treatment" for multiple myeloma, so "you might as well go on a clinical trial". At the time, my M1 spike was 3.8 g/dL (38 g/l). I started the trial around June 26, 2015 and by August 18, 2015, it was down to 1.09 g/dL. By that time, I was walking with a cane and had very little energy to do anything.
On September 2, 2015 I was admitted to the hospital near where I live with a deep vein thrombosis (DVT) in my left leg and clots in both lungs. I was taken off Revlimid immediately and put on a 10 mg dose sometime in October 2015.
From the time I was given the 40+ page informed consent prior to joining the clinical trial, I began my own research into stem cell transplantation. I'm not a scientist, but the more I read, the more questions I had, and the more alarm bells went off in my brain. The trial I was on consisted of 4 months on Revlimid and dex (plus all the other support drugs), and then harvesting stem cells, after which through a coin toss I'd either have a stem cell transplant or not.
I decided I would stay on the trial for the four months and then drop out prior to going through with the harvesting of my stem cells. Except, as stated earlier, after about two months I wound up with those clots. I dropped out of the trial at that point. I have no regrets for that decision. I've been told by a trusted medical professional in the multiple myeloma specialty (not at Sloan) that in a few years stem cell transplantation will no longer be done as a treatment.
I consider myself very lucky: I'm relatively healthy, have no other medical issues and have never smoked. Being overweight has been a plus, as I've lost almost 50 lbs since the clinical trial and was glad for all that "extra"weight that I could afford to lose that much. My multiple myeloma was diagnosed early. Another bit of luck there.
The last sentence on the first page of the informed consent stays in my mind, "Whether treatment starts early or is delayed, multiple myeloma always recurs and is not curable." I'd rather not give up the health I have now for a stem cell transplant that may or may not slow the progress.
My M1 spike has gone up slightly since last year and is now 1.55 g/dL. I asked my oncologist if I'd be on Revlimid and a blood thinner for the rest of my life, and he nodded in assent. I try to maintain a positive attitude. I told my nearby oncologist that none of us are immortal, so it doesn't pay for me to dwell on the "what ifs" of multiple myeloma. A beloved co-worker of mine used to say "Man plans and God laughs". Very true.
I see my oncologist at the Sloan outpatient facility in West Harrison, New York. It's so much more convenient than going down to New York City.
Again, thanks for sharing your knowledge. I appreciate any information I can get. Seems you can't know enough about this diagnosis.
Thank you for sharing information. I became a patient at Sloan Kettering in October 2013 but didn't start treatment until June 2015. My doctor told me that he was going to start me on "standard treatment" for multiple myeloma, so "you might as well go on a clinical trial". At the time, my M1 spike was 3.8 g/dL (38 g/l). I started the trial around June 26, 2015 and by August 18, 2015, it was down to 1.09 g/dL. By that time, I was walking with a cane and had very little energy to do anything.
On September 2, 2015 I was admitted to the hospital near where I live with a deep vein thrombosis (DVT) in my left leg and clots in both lungs. I was taken off Revlimid immediately and put on a 10 mg dose sometime in October 2015.
From the time I was given the 40+ page informed consent prior to joining the clinical trial, I began my own research into stem cell transplantation. I'm not a scientist, but the more I read, the more questions I had, and the more alarm bells went off in my brain. The trial I was on consisted of 4 months on Revlimid and dex (plus all the other support drugs), and then harvesting stem cells, after which through a coin toss I'd either have a stem cell transplant or not.
I decided I would stay on the trial for the four months and then drop out prior to going through with the harvesting of my stem cells. Except, as stated earlier, after about two months I wound up with those clots. I dropped out of the trial at that point. I have no regrets for that decision. I've been told by a trusted medical professional in the multiple myeloma specialty (not at Sloan) that in a few years stem cell transplantation will no longer be done as a treatment.
I consider myself very lucky: I'm relatively healthy, have no other medical issues and have never smoked. Being overweight has been a plus, as I've lost almost 50 lbs since the clinical trial and was glad for all that "extra"weight that I could afford to lose that much. My multiple myeloma was diagnosed early. Another bit of luck there.
The last sentence on the first page of the informed consent stays in my mind, "Whether treatment starts early or is delayed, multiple myeloma always recurs and is not curable." I'd rather not give up the health I have now for a stem cell transplant that may or may not slow the progress.
My M1 spike has gone up slightly since last year and is now 1.55 g/dL. I asked my oncologist if I'd be on Revlimid and a blood thinner for the rest of my life, and he nodded in assent. I try to maintain a positive attitude. I told my nearby oncologist that none of us are immortal, so it doesn't pay for me to dwell on the "what ifs" of multiple myeloma. A beloved co-worker of mine used to say "Man plans and God laughs". Very true.
I see my oncologist at the Sloan outpatient facility in West Harrison, New York. It's so much more convenient than going down to New York City.
Again, thanks for sharing your knowledge. I appreciate any information I can get. Seems you can't know enough about this diagnosis.
-
Pat Tesone - Name: Pat Tesone
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 24, 2013
- Age at diagnosis: 62
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