Did anyone eperience hair loss while being treated for multiple myeloma?
I more than likely will need to start chemo treatment soon since this last round of radiation wasn't enough. I have read about hair loss with a SCT [stem cell transplant] but not with general treatments such a Velcade etc.
Also is their hair loss while the stem cells are being harvested or only when you have the actual transplant?
I know this sounds so unimportant to many people but it will be something that will really bother me I am sure. So I always like to know what is the worst that can happen, the usual side effects & the minor ones before going in to things.
Thanks for all of your help,
Appreciate your fight & the knowledge you share
Terri
Forums
Re: Hair loss during multiple myeloma treatment?
Hi-my dad has had 2 stem cell transplants and he did lose his hair during both. His beard as well 
. It didn't happen right away but it will.
During treatments like Velcade, thalidomide and Revlimid he did not lose his hair. It grows back pretty quick though and my dads was thick and curly.
Hang in there the road is long but the hope at the end is worth it. My dad has lived a full life for 8 years with multiple myeloma. His main issue were with peripheral neuropathy in his feet. The new drugs are so much better at minimizing this.
There is so much hope with myeloma! God bless you on your journey.
. It didn't happen right away but it will. During treatments like Velcade, thalidomide and Revlimid he did not lose his hair. It grows back pretty quick though and my dads was thick and curly.
Hang in there the road is long but the hope at the end is worth it. My dad has lived a full life for 8 years with multiple myeloma. His main issue were with peripheral neuropathy in his feet. The new drugs are so much better at minimizing this.
There is so much hope with myeloma! God bless you on your journey.
Re: Hair loss during multiple myeloma treatment?
Hair loss is not an unimportant issue. It is a good question that you ask.
Velcade, Revlimid and dexamethasone do not cause hair loss.
Hair loss with transplant occurs around 14 to 17 days after high dose chemotherapy. It starts to grow back about 2 months after.
Velcade, Revlimid and dexamethasone do not cause hair loss.
Hair loss with transplant occurs around 14 to 17 days after high dose chemotherapy. It starts to grow back about 2 months after.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Hair loss during multiple myeloma treatment?
I began to lose my hair about 10 days after getting IV Cytoxan in preparation for stem cell harvesting. I had been advised that it would start to come out about that time. I put my hairdresser on notice that I might call him to have him shave my head quickly. He gave me a nice clean, shaved head that I covered with beautiful scarves when I went out. An African American neighbor taught me how to do head wraps with them. If it hadn't been a very cold, snowy winter I probably would have gone without head coverings when I went out. My hair was about 1 inch long 4 months later. At that point I stopped wearing head coverings.
Because I had about 6 months from the time that my oncologist told me that I would probably lose my hair from the transplant until I began the preparation for the transplant, I had had time to get used to the idea of losing my hair. I already had dealt with the emotional part of it. So, when it happened I was ready.
The most that I have heard from people about their hair who are taking Revlimid and/or Velcade is that their hair may thin. I know mine is thinner than it was previously, but the thinning may also be age related. Again, I don't spend time worrying about it.
Getting your cancer treated and living as normal a life as possible is much more important in my eyes than worrying about the state of my hair. Wigs, scarves, hats and nothing can take care of any changes in your hair.
You will make the right decision for you,
Nancy in Phila
Because I had about 6 months from the time that my oncologist told me that I would probably lose my hair from the transplant until I began the preparation for the transplant, I had had time to get used to the idea of losing my hair. I already had dealt with the emotional part of it. So, when it happened I was ready.
The most that I have heard from people about their hair who are taking Revlimid and/or Velcade is that their hair may thin. I know mine is thinner than it was previously, but the thinning may also be age related. Again, I don't spend time worrying about it.
Getting your cancer treated and living as normal a life as possible is much more important in my eyes than worrying about the state of my hair. Wigs, scarves, hats and nothing can take care of any changes in your hair.
You will make the right decision for you,
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: Hair loss during multiple myeloma treatment?
Does anyone know if it is common for hair loss to occur during melphalan treatment. (VMP treatment) Thanks so much.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Hair loss during multiple myeloma treatment?
Older chemo drugs like melphalan and cytoxan, which are alkylating agents, typically cause you to lose your hair. This is because they attack fast-dividing cells. Cancer cells are fast-dividing cells, but so are hair cells and fingernails and toenails. And also some gastrointestinal cells. Newer targeted therapies like Velcade and Revlimid work in other ways against multiple myeloma and don't normally cause hair loss.
I got Cytoxan in preparation for the stem cell harvesting, and I lost my hair a few weeks after getting it. I was without hair for about 4 months, and I have to admit that every time I happened to look at myself in the mirror while washing my hands, it sort of startled me. I never got used to seeing myself with no hair.
Four months seemed like a long time back then (last summer!), but now it seems like nothing. Losing your hair is sort of big deal (even for a guy), but as Nancy said, it's more important to get the treatment you need. Your hair will grow back, but you want to keep those myeloma cells from growing back for as long as possible!
I got Cytoxan in preparation for the stem cell harvesting, and I lost my hair a few weeks after getting it. I was without hair for about 4 months, and I have to admit that every time I happened to look at myself in the mirror while washing my hands, it sort of startled me. I never got used to seeing myself with no hair.
Four months seemed like a long time back then (last summer!), but now it seems like nothing. Losing your hair is sort of big deal (even for a guy), but as Nancy said, it's more important to get the treatment you need. Your hair will grow back, but you want to keep those myeloma cells from growing back for as long as possible!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Hair loss during multiple myeloma treatment?
Thanks for much for the quick reply. I'll have to give myself a real "pep talk" since I lost all my hair with thyroid cancer & just got it back. It was a real pain in the neck. Next time around I guess I'll ask for newer drugs.
Thanks so much.
Thanks so much.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Hair loss during multiple myeloma treatment?
Hi Barb. I think how we feel about ourselves is important, so the possibility of losing our hair as a result of treatment is a very legitimate issue. My hair was long before treatment, and I used to wear it braided, with the braid thrown over my shoulder. That was part of who I was.
My initial treatment was thalidomide, which caused my hair to become brittle and start to thin. I knew it was thinning because my braid became thinner and thinner. However, it was the chemo from the SCT that caused it all to fall out. It's now 4 years later, and my hair has grown back. I'm going to keep it down on my shoulders but not as long as it was because I can't handle the thought of losing it again.
However, if I do lose it again, I'll handle it the same way I did the first time -- with humor. My daughter and I made jokes about my "beautifully shaped head" -- my mother's inane comment. I'll wear the caps my sister knitted for me. And I'll deal with it growing back in and my look changing over time.
Myeloma has cost us a lot. I refuse to let it take away my sense of self, so much as my long hair is part of me, it's not all of me, and I can cope.
I hope you find some wonderful caps or scarves to wear!
Dana
My initial treatment was thalidomide, which caused my hair to become brittle and start to thin. I knew it was thinning because my braid became thinner and thinner. However, it was the chemo from the SCT that caused it all to fall out. It's now 4 years later, and my hair has grown back. I'm going to keep it down on my shoulders but not as long as it was because I can't handle the thought of losing it again.
However, if I do lose it again, I'll handle it the same way I did the first time -- with humor. My daughter and I made jokes about my "beautifully shaped head" -- my mother's inane comment. I'll wear the caps my sister knitted for me. And I'll deal with it growing back in and my look changing over time.
Myeloma has cost us a lot. I refuse to let it take away my sense of self, so much as my long hair is part of me, it's not all of me, and I can cope.
I hope you find some wonderful caps or scarves to wear!
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Hair loss during multiple myeloma treatment?
Hi,
I am in my fourth cycle of Velcade, Revlimid and dex and have not lost my hair, which is what I was told to expect. However, I am going to be receiving high dose Cytoxan in April and am told I am going to lose my hair. It does kind of shake you up, in spite of knowing it is the least of our problems. As someone mentioned though, I have had time to prepare for it so I think I will be ok -- I think I am going to get a wig, just in case.
I have also talked to my hairdresser about it and she is ready to help me with whatever I want to do -- scarves, wigs, etc. I have a 13 year old daughter, which is a pretty sensitive age, so I wanted to prepare her this event. She is ok with it now that she's had time to think about it.
The thing is, I have been so incredibly fortunate with my treatment so far that not everyone knows what's going on and the hair loss will be like wearing a sign!. This happened to me when I had Hodgkins 25 years ago -- I didn't tell everyone and then my hair started to fall out! Back then I wasn't given any information and there was no Internet to Google this stuff!
I hope this helps. This place is a great forum, so keep checking back. We'll be thinking of you!
I am in my fourth cycle of Velcade, Revlimid and dex and have not lost my hair, which is what I was told to expect. However, I am going to be receiving high dose Cytoxan in April and am told I am going to lose my hair. It does kind of shake you up, in spite of knowing it is the least of our problems. As someone mentioned though, I have had time to prepare for it so I think I will be ok -- I think I am going to get a wig, just in case.
I have also talked to my hairdresser about it and she is ready to help me with whatever I want to do -- scarves, wigs, etc. I have a 13 year old daughter, which is a pretty sensitive age, so I wanted to prepare her this event. She is ok with it now that she's had time to think about it.
The thing is, I have been so incredibly fortunate with my treatment so far that not everyone knows what's going on and the hair loss will be like wearing a sign!. This happened to me when I had Hodgkins 25 years ago -- I didn't tell everyone and then my hair started to fall out! Back then I wasn't given any information and there was no Internet to Google this stuff!
I hope this helps. This place is a great forum, so keep checking back. We'll be thinking of you!
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patden
Re: Hair loss during multiple myeloma treatment?
P.S. Hair loss during the stem cell transplant is because of the chemo given prior to the transplant. It has nothing to do with the actual transplant process. Timing wise it may happen during the transplant but that's a coincidence. I am not doing the transplant yet -- just the collection, and they said I will lose my hair. At least it won't be 10 degrees out anymore! 
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patden
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