Hello,
I'm newly diagnosed 3 months ago at age 41, and my head has been spinning ever since. I'm so excited to see this group is here, because I've never felt so lost! I had never heard of multiple myeloma before my doctor broke the news to my husband and I. And I hear how rare it is to be diagnosed at my age.
My current treatment plan is Velcade and dexamethasone. I was on the Revlimid, but it had too many side effects so I couldn't continue with it.
Has anyone ever tried Cytoxan, and how has a stem cell transplant worked for anyone?
Any info or advice will really help. Thanks so much
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6 posts
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Re: Newly diagnosed with multiple myeloma at age 41
We're sorry to hear about your diagnosis, College, but glad you found The Beacon.
Cytoxan, a drug that has the generic name cyclophosphamide, is frequently used in combination with Velcade and dexamethasone as a treatment for newly diagnosed multiple myeloma patients. You'll find a lot of people here in the forum who have taken the drug. (The combination is often abbreviated "CyBorD", and sometimes "VCD." )
A lot of people here also have had stem cell transplants. While many myeloma specialists consider it standard therapy for someone who is newly diagnosed and physically fit enough to undergo the treatment, there is some controversy as to whether or not it should be a routine part of initial therapy.
You can find links to previous discussions here in the forum about common treatments and treatment-related issues in this forum posting: "Useful links to existing forum discussions."
There are also links at the top of the Beacon's news page that will take you to news and opinion articles with information on specific topics.
Others here in the forum are sure to have some additional perspectives useful to you. We just thought we'd point you in some helpful directions from the start.
Best wishes,
The Myeloma Beacon Staff
Cytoxan, a drug that has the generic name cyclophosphamide, is frequently used in combination with Velcade and dexamethasone as a treatment for newly diagnosed multiple myeloma patients. You'll find a lot of people here in the forum who have taken the drug. (The combination is often abbreviated "CyBorD", and sometimes "VCD." )
A lot of people here also have had stem cell transplants. While many myeloma specialists consider it standard therapy for someone who is newly diagnosed and physically fit enough to undergo the treatment, there is some controversy as to whether or not it should be a routine part of initial therapy.
You can find links to previous discussions here in the forum about common treatments and treatment-related issues in this forum posting: "Useful links to existing forum discussions."
There are also links at the top of the Beacon's news page that will take you to news and opinion articles with information on specific topics.
Others here in the forum are sure to have some additional perspectives useful to you. We just thought we'd point you in some helpful directions from the start.
Best wishes,
The Myeloma Beacon Staff
Re: Newly diagnosed with multiple myeloma at age 41
Welcome, College, although I am sure you'd rather not be here! (Me neither!!)
I recently completed a seven-month treatment program of dex, Velcade and Revlimid. At the midway point, I had a stem cell harvest (NOT transplant; I was in a research study where half had the transplant right away, and half did not - the end goal is to see which process, if either, better stems off a relapse) where Cytoxan was administered.
It was rotten. I had pretty much zero side effects until the Cytoxan was introduced. Then I lost my hair, had intense lower back pain, etc. That said, the harvest only took two afternoons, and I am now in remission. Pretty amazing, really.
Obviously, everyone experiences things differently, and everyone's body reacts differently. But I think Cytoxan is an important tool in the fight against multiple myeloma.
Yes, 41 is young to be diagnosed. But the advances in treatment are incredible and a good prognosis is more and more common these days. While not currently curable, I would not be shocked to see that change in our lifetimes.
I recently completed a seven-month treatment program of dex, Velcade and Revlimid. At the midway point, I had a stem cell harvest (NOT transplant; I was in a research study where half had the transplant right away, and half did not - the end goal is to see which process, if either, better stems off a relapse) where Cytoxan was administered.
It was rotten. I had pretty much zero side effects until the Cytoxan was introduced. Then I lost my hair, had intense lower back pain, etc. That said, the harvest only took two afternoons, and I am now in remission. Pretty amazing, really.
Obviously, everyone experiences things differently, and everyone's body reacts differently. But I think Cytoxan is an important tool in the fight against multiple myeloma.
Yes, 41 is young to be diagnosed. But the advances in treatment are incredible and a good prognosis is more and more common these days. While not currently curable, I would not be shocked to see that change in our lifetimes.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Newly diagnosed with multiple myeloma at age 41
College-
It's good that you found this forum. There are lots of people who have been on the regimen of Velcade and Dex with Cytoxan. The dose level of Cytoxan used in induction therapy is a lot lower than that used to prepare for stem cell harvesting. From what I've read the side effects are minimal and people don't lose their hair, although it might thin some.
There also are quite a few people who are in their 40's, 30's and few in their 20's who regularly post and lurk here. So, don't feel like you can't ask your questions that are really relevant for the younger group of people with myeloma. Often your concerns are a little different from those of us who were diagnosed at a much older age.
My induction therapy was Revlimid and Dex. I responded well and went on to a stem cell transplant. I only had one day of harvesting after having an infusion of Cytoxan and 10 days of Neupogen injections to mobilize my stem cells into my blood, and then admission to the hospital for the high dose chemo and re-infusion of my stem cells. I was in the hospital for a total of 17 days with minimal problems other than nausea and vomiting that lasted for a couple of months. The biggest hurdle for me with the transplant was the fatigue that lasted for several months on a significant level and on a moderate level for about a year. Part of this was due to the fact that I had to go back to work full time 10 weeks after my transplant to a physically and cognitively demanding job. I relapsed almost 3 years after my transplant. I didn't do any maintenance because I had a bad reaction to Revlimid when started for maintenance at 100 days post transplant. I currently have been back on Revlimid and Dex for treatment for over 2 1/2 years with a good response once again and only minor side effects.
I wish you well as you begin your new life with myeloma in the mix. If you aren't already being seen by a myeloma specialist, I would suggest that you do so since you are so young. You want to have the latest and greatest research known by your oncologist and knowledge of what clinical trials are available. A specialist will work with a local oncologist to recommend treatment strategies and to recommend what blood work and other tests should be done.
Nancy in Phila
It's good that you found this forum. There are lots of people who have been on the regimen of Velcade and Dex with Cytoxan. The dose level of Cytoxan used in induction therapy is a lot lower than that used to prepare for stem cell harvesting. From what I've read the side effects are minimal and people don't lose their hair, although it might thin some.
There also are quite a few people who are in their 40's, 30's and few in their 20's who regularly post and lurk here. So, don't feel like you can't ask your questions that are really relevant for the younger group of people with myeloma. Often your concerns are a little different from those of us who were diagnosed at a much older age.
My induction therapy was Revlimid and Dex. I responded well and went on to a stem cell transplant. I only had one day of harvesting after having an infusion of Cytoxan and 10 days of Neupogen injections to mobilize my stem cells into my blood, and then admission to the hospital for the high dose chemo and re-infusion of my stem cells. I was in the hospital for a total of 17 days with minimal problems other than nausea and vomiting that lasted for a couple of months. The biggest hurdle for me with the transplant was the fatigue that lasted for several months on a significant level and on a moderate level for about a year. Part of this was due to the fact that I had to go back to work full time 10 weeks after my transplant to a physically and cognitively demanding job. I relapsed almost 3 years after my transplant. I didn't do any maintenance because I had a bad reaction to Revlimid when started for maintenance at 100 days post transplant. I currently have been back on Revlimid and Dex for treatment for over 2 1/2 years with a good response once again and only minor side effects.
I wish you well as you begin your new life with myeloma in the mix. If you aren't already being seen by a myeloma specialist, I would suggest that you do so since you are so young. You want to have the latest and greatest research known by your oncologist and knowledge of what clinical trials are available. A specialist will work with a local oncologist to recommend treatment strategies and to recommend what blood work and other tests should be done.
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: Newly diagnosed with multiple myeloma at age 41
Hi College,
I too was just diagnosed at 41. I keep on reminding myself how awesome science. Hang in there and know there are others that are young out there too.
Colleen
I too was just diagnosed at 41. I keep on reminding myself how awesome science. Hang in there and know there are others that are young out there too.
Colleen
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ColleenM - Name: Colleen Mabasa
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 41
Re: Newly diagnosed with multiple myeloma at age 41
For my stories, click to the "advanced search" link at the top right. In advanced search, go to "search for author" and type in my user name, which is "Mister Dana". I have written about my induction chemo with dex, Velcade and Cytoxan, and in a separate story about my stem cell transplant. Both were good luck stories. I was actually going through the transplant when I wrote those accounts, so that part is my diary from one year ago.
Good luck to you!
Good luck to you!
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
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