Hi,
I'm Sandra, I'm 53 and was diagnosed with multiple myeloma about a month ago. I had never heard of it before.
I will soon start my treatment with the Revlimid, and the others on February 29th.
I was wondering how soon will I feel the adverse reactions to the meds?
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sandrafaith - Who do you know with myeloma?: myself
- When were you/they diagnosed?: January 18, 2016
- Age at diagnosis: 53
Re: When do the side effects of treatment start?
Hi Sandra,
I guess this is very different from person to person.
I started induction treatment with Velcade, thalidomide, and dex 10 days ago and was told by the doctor that most people did not get very much side effects of this treatment.
I was surprised then when just after 2-3 days I felt dizzy, unbalanced, something like the head not really connected to the body, foggy thinking, and dry mouth. Not really being present.
Now in my week two I feel these side effects are getting much weaker, and that my body is normalizing again. I hope this was just a "start up" reaction.
I guess your doctor has given some information regarding your specific treatment, and hope it works without much side effects to you.
Best regards,
John C
I guess this is very different from person to person.
I started induction treatment with Velcade, thalidomide, and dex 10 days ago and was told by the doctor that most people did not get very much side effects of this treatment.
I was surprised then when just after 2-3 days I felt dizzy, unbalanced, something like the head not really connected to the body, foggy thinking, and dry mouth. Not really being present.
Now in my week two I feel these side effects are getting much weaker, and that my body is normalizing again. I hope this was just a "start up" reaction.
I guess your doctor has given some information regarding your specific treatment, and hope it works without much side effects to you.
Best regards,
John C
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JohnC - Name: JohnC
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 47
Re: When do the side effects of treatment start?
Sandra,
My husband is being treated with cyclophosphamide, Velcade, and dexamethasone (CyBorD) four-month induction therapy once a week, with a stem cell transplant to follow.
Actually, after the first month of treatment he feels much better than before he started. Bone pain is gone, he is eating and putting back on some of his weight, and is working every day but his treatment day. He feels sluggish and blah, as he puts it, the second day after treatment due to the dex (steroid) leaving his system, and his "taste is off", so his appetite is not quite as good, but by the third day he is back to normal.
I hope this keeps up for the entire four month treatment period. I wish you similar results with whatever treatment course you are on.
My husband is being treated with cyclophosphamide, Velcade, and dexamethasone (CyBorD) four-month induction therapy once a week, with a stem cell transplant to follow.
Actually, after the first month of treatment he feels much better than before he started. Bone pain is gone, he is eating and putting back on some of his weight, and is working every day but his treatment day. He feels sluggish and blah, as he puts it, the second day after treatment due to the dex (steroid) leaving his system, and his "taste is off", so his appetite is not quite as good, but by the third day he is back to normal.
I hope this keeps up for the entire four month treatment period. I wish you similar results with whatever treatment course you are on.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: When do the side effects of treatment start?
Hi Sandra,
I have completed 4 rounds of CyBorD (cyclophosphamide, Velcade, and dexamethasone) and once a month Zometa. During that entire time, I continued to teach my Zumba classes, babysit my toddler grandkids, ride my horse, and take on projects (such as moving, packing, lifting things). I know that I was very lucky, but I didn't seem to experience any real negative affects.
Yes, the dex on day 1 and 2 gave me a 'speedy' high, but I used it to my advantage and actually planned to take on projects those days. I have had insomnia for 10 years – I attributed it to menopause and hormones – so that isn't anything new. I use Ambien (zolpidem) on occasion or listen to old TV shows with my eyes closed to take my mind off of things and lull to sleep.
I did experience some 'creeky' arthritis-like bone pain with the Zometa, but all in all the treatments didn't really affect my life in a negative way. I hope that your husband has a similar experience!
I have oste-sclerotic myeloma (sclerotic lesions instead of lytic), so I may not have quite as many bone-related complications as some.
I have completed 4 rounds of CyBorD (cyclophosphamide, Velcade, and dexamethasone) and once a month Zometa. During that entire time, I continued to teach my Zumba classes, babysit my toddler grandkids, ride my horse, and take on projects (such as moving, packing, lifting things). I know that I was very lucky, but I didn't seem to experience any real negative affects.
Yes, the dex on day 1 and 2 gave me a 'speedy' high, but I used it to my advantage and actually planned to take on projects those days. I have had insomnia for 10 years – I attributed it to menopause and hormones – so that isn't anything new. I use Ambien (zolpidem) on occasion or listen to old TV shows with my eyes closed to take my mind off of things and lull to sleep.
I did experience some 'creeky' arthritis-like bone pain with the Zometa, but all in all the treatments didn't really affect my life in a negative way. I hope that your husband has a similar experience!
I have oste-sclerotic myeloma (sclerotic lesions instead of lytic), so I may not have quite as many bone-related complications as some.
Re: When do the side effects of treatment start?
Sandrafaith-
Although you mention Revlimid, you don't mention what the "others" are. I assume you will be taking dexamethasone - what dose and how often? Will you be taking any other drug, such as Velcade?
Knowing precisely what your regimen will be will help others answer you better. But, one of the things that you will learn very quickly is that every one is different with their myeloma and with their reactions to their treatment regimen.
I really didn't have any side effects from the Revlimid, 15 mg 21 days on / 7 days off, other than fatigue, which always has been manageable during my induction phase. Dexamethasone, 40 mg once a week, was another story. I took it in the morning and really wasn't able to sleep for 2 nights and was hyperactive for about 2 days. Then I crashed and couldn't do much for a day and then gradually my energy improved. The pain that I was experiencing from my broken arm began to improve within a couple of weeks of starting treatment. This was because the bone lesions that I had were being positively affected by the cancer treatment. I began to feel much better than prior to treatment.
So, if you can, give us more detail about your treatment regimen and what you have learned about details of your diagnosis. What did your bone marrow biopsy reveal? What is your M-spike level and what type of immunoglobulin is affected, i.e., IgG, igA, IgM, etc, and kappa or lambda? All of this information and maybe even your blood test results will help us respond to your questions. Always include the units of measurement for any test results. There are different measurement units used in countries other than the U.S., and there are a lot of people on this forum who are not in the U.S.
All the best,
Nancy in Phila
Although you mention Revlimid, you don't mention what the "others" are. I assume you will be taking dexamethasone - what dose and how often? Will you be taking any other drug, such as Velcade?
Knowing precisely what your regimen will be will help others answer you better. But, one of the things that you will learn very quickly is that every one is different with their myeloma and with their reactions to their treatment regimen.
I really didn't have any side effects from the Revlimid, 15 mg 21 days on / 7 days off, other than fatigue, which always has been manageable during my induction phase. Dexamethasone, 40 mg once a week, was another story. I took it in the morning and really wasn't able to sleep for 2 nights and was hyperactive for about 2 days. Then I crashed and couldn't do much for a day and then gradually my energy improved. The pain that I was experiencing from my broken arm began to improve within a couple of weeks of starting treatment. This was because the bone lesions that I had were being positively affected by the cancer treatment. I began to feel much better than prior to treatment.
So, if you can, give us more detail about your treatment regimen and what you have learned about details of your diagnosis. What did your bone marrow biopsy reveal? What is your M-spike level and what type of immunoglobulin is affected, i.e., IgG, igA, IgM, etc, and kappa or lambda? All of this information and maybe even your blood test results will help us respond to your questions. Always include the units of measurement for any test results. There are different measurement units used in countries other than the U.S., and there are a lot of people on this forum who are not in the U.S.
All the best,
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: When do the side effects of treatment start?
I was just diagnosed (complete surprise!) and I don't know what to expect in terms of the timing of treatment side effects. I'm used to going full-on, exercising hard daily. I'll be on Revlimid, Velcade, and dexamethasone. I'll have a pill daily and shots twice a week. I'm so worried about gaining weight even though I'm very healthy now (in regards to diet and exercise).
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tugboatjulie - Name: tugboatjulie
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 48
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