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Radiation for skull plasmacytoma & hair loss
A PET/CT scan almost two years post-transplant found a plasmacytoma in my skull. I will probably have to have radiation to the skull. Will this cause hair loss?
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Radiation for skull plasmacytoma & hair loss
My husband developed a plasmacytoma on the skull after 2 years of complete response (CR). He had radiation in October and did lose hair on and around the radiation site. We're expecting that's permanent, but would be pleasantly surprised if it's not.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Radiation for skull plasmacytoma & hair loss
Hello all,
This is my first post to this site and I'm happy to be surrounded with fellow travelers.
I had a plasmacytoma (8 cm x 8 cm x 3 cm) in my skull that was surgically removed and then radiated. I did lose my hair in the site, but it has since grown back, not as thick, certainly super curly, but I'm sure glad that it's there.
Having said that, a follow-up MRI indicates that the tumor is regrowing, but there is zero indication that it has morphed into multiple myeloma. Because this situation is so unusual, the doctors are conferring about the optimal treatment. I'm going on Thursday to hear the outcome.
Best to all.
This is my first post to this site and I'm happy to be surrounded with fellow travelers.
I had a plasmacytoma (8 cm x 8 cm x 3 cm) in my skull that was surgically removed and then radiated. I did lose my hair in the site, but it has since grown back, not as thick, certainly super curly, but I'm sure glad that it's there.
Having said that, a follow-up MRI indicates that the tumor is regrowing, but there is zero indication that it has morphed into multiple myeloma. Because this situation is so unusual, the doctors are conferring about the optimal treatment. I'm going on Thursday to hear the outcome.
Best to all.
Re: Radiation for skull plasmacytoma & hair loss
I'm on Darzalex and Revlimid, and my numbers are really, really good, with no M-spike.
Unfortunately, I have a plasmacytoma in my skull and one on my ribs (no place else so far, I hope). I had radiation for the one on my ribs last fall when it attached itself to my lung and became extremely painful. The radiation not only worked well, it worked really fast! I had radiation at 2 p.m., and by that night I was pain free and could raise my arm and sleep. Super!
Now, though, that plasmacytoma in the skull is acting up. The MRI says that it has grown something like a centimeter and a half in four weeks, and is invading a couple of the sinuses that transport oxygen-depleted blood (veins) from the brain to the heart. This could be a problem. So my doctor talked to the neurosurgery department about having it removed. They said try radiation first, especially since my multiple myeloma seems to be so responsive to radiation. You know, a little like water thrown on the Wicked Witch of the West. It screams "I'm meeeeeelting!" and pretty much goes away.
So that's what we did. Two and a half weeks later, I'm losing my hair where they radiated me. Started yesterday morning; I've lost enough hair, I swear, to line the nest of a courting pair of California condors. Sheesh! My next MRI will look at it more closely to see if this did the job.
Dunno what we'll do if it doesn't, but I'll burn that bridge when I cross it.
So now I'm trying to figure out how to pull a comb over to hide the thing. Interesting problem. Good thing I have a lot of hair, and I haven't cut it since my last stem cell transplant a couple of years ago. It's long, so I might have a chance. Either that, or I'm shaving my head right down to the skin and starting over.
Maybe hair extensions will work? It's easier, I think, to be all the way bald! I mean, I've done that twice now.
Ah, well. Just to let those who might be interested that: A: Radiation works, and B; You can solve most problems with a little ingenuity and a lot of hair gel. Or scarves. And, I'm told, it will grow back.
Oh, and they let me keep the mask that held my head still. I'm going to make a Mrs. Santa display with it. It's perfect, and I have a lot of paint!
Unfortunately, I have a plasmacytoma in my skull and one on my ribs (no place else so far, I hope). I had radiation for the one on my ribs last fall when it attached itself to my lung and became extremely painful. The radiation not only worked well, it worked really fast! I had radiation at 2 p.m., and by that night I was pain free and could raise my arm and sleep. Super!
Now, though, that plasmacytoma in the skull is acting up. The MRI says that it has grown something like a centimeter and a half in four weeks, and is invading a couple of the sinuses that transport oxygen-depleted blood (veins) from the brain to the heart. This could be a problem. So my doctor talked to the neurosurgery department about having it removed. They said try radiation first, especially since my multiple myeloma seems to be so responsive to radiation. You know, a little like water thrown on the Wicked Witch of the West. It screams "I'm meeeeeelting!" and pretty much goes away.
So that's what we did. Two and a half weeks later, I'm losing my hair where they radiated me. Started yesterday morning; I've lost enough hair, I swear, to line the nest of a courting pair of California condors. Sheesh! My next MRI will look at it more closely to see if this did the job.
Dunno what we'll do if it doesn't, but I'll burn that bridge when I cross it.
So now I'm trying to figure out how to pull a comb over to hide the thing. Interesting problem. Good thing I have a lot of hair, and I haven't cut it since my last stem cell transplant a couple of years ago. It's long, so I might have a chance. Either that, or I'm shaving my head right down to the skin and starting over.
Maybe hair extensions will work? It's easier, I think, to be all the way bald! I mean, I've done that twice now. Ah, well. Just to let those who might be interested that: A: Radiation works, and B; You can solve most problems with a little ingenuity and a lot of hair gel. Or scarves. And, I'm told, it will grow back.
Oh, and they let me keep the mask that held my head still. I'm going to make a Mrs. Santa display with it. It's perfect, and I have a lot of paint!
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Radiation for skull plasmacytoma & hair loss
Diana,
It is always great to find a new post from you!
As a fellow Darzalex user, I'm intrigued to hear about your experience.
Your first sentence was so encouraging, and then you dropped the bombshell about the new tumors. I'm so sorry!
I admire your brave attitude and will watch anxiously to find that the tumors are successfully treated!
It is always great to find a new post from you!
As a fellow Darzalex user, I'm intrigued to hear about your experience.
Your first sentence was so encouraging, and then you dropped the bombshell about the new tumors. I'm so sorry!
I admire your brave attitude and will watch anxiously to find that the tumors are successfully treated!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Radiation for skull plasmacytoma & hair loss
Hi!
I was diagnosed with IgA kappa multiple myeloma in 2010. In 2018 I developed a plasmacytoma on my skull. 10 days of radiation worked very well. Then a couple of months later I had double vision. Another plasmacytoma was found in in my clivus. I did not know I had one. I got another 10 days of radiation. By Day 7, my vision returned to normal! The hair loss was minimal. No biggie. Good luck of course.
I was diagnosed with IgA kappa multiple myeloma in 2010. In 2018 I developed a plasmacytoma on my skull. 10 days of radiation worked very well. Then a couple of months later I had double vision. Another plasmacytoma was found in in my clivus. I did not know I had one. I got another 10 days of radiation. By Day 7, my vision returned to normal! The hair loss was minimal. No biggie. Good luck of course.
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Rssutherland - Name: R. Scott Sutherland
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2010
- Age at diagnosis: 58
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