I am currently receiving carfilzomib (Kyprolis) and dex for my multiple myeloma, which was diagnosed last March. I have so far tried lenalidomide (Revlimid) and bortezomib (Velcade), but did not respond to either. Due to various factors, I am not currently a candidate for a stem cell procedure.
I wonder about radiation therapy. This is often listed as a treatment modality, but I have not read of anyone's experience with it on the Beacon forum.
Does anyone have information about the radiation option, either through personal experience or otherwise? The one thing I have read is that radiation to treat myeloma can rule out subsequent stem cell transplants for some reason.
Thanks everyone.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Radiation for Multiple Myeloma
Spud:
Diagnosed 5/12/12. Surgically removed large Plasmacytoma in left Frontal Duct and re-construction. Myeloma Worked up, FISH, Bence-Jackson, Bone marrow x2, etc.
I then had radiation--forehead and inner hip. 45 GY -42 (?) sessions.
Thereafter had Induction w/ Velcade, etc.
Thereafter--prepped for and underwent Stem cell collection. Stems are on Ice.
PET and MRI scans.
On Revlimid Maintenance. Zometa.
No Stem cell transplant. My choice.
Currently 0.0 on M spike and SPEP is very good.
Yes, Radiation is a component that some order as part of treatment.
It didn't stop me from SCT eligibility--in fact, the MD's were pushing it.
Good Luck.
Diagnosed 5/12/12. Surgically removed large Plasmacytoma in left Frontal Duct and re-construction. Myeloma Worked up, FISH, Bence-Jackson, Bone marrow x2, etc.
I then had radiation--forehead and inner hip. 45 GY -42 (?) sessions.
Thereafter had Induction w/ Velcade, etc.
Thereafter--prepped for and underwent Stem cell collection. Stems are on Ice.
PET and MRI scans.
On Revlimid Maintenance. Zometa.
No Stem cell transplant. My choice.
Currently 0.0 on M spike and SPEP is very good.
Yes, Radiation is a component that some order as part of treatment.
It didn't stop me from SCT eligibility--in fact, the MD's were pushing it.
Good Luck.
-
Rneb
Re: Radiation for multiple myeloma
Many thanks, Rneb.
It looks less and less likely that I will do the stem cell thing. I'm grateful that there are many other options.
It looks less and less likely that I will do the stem cell thing. I'm grateful that there are many other options.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Radiation for multiple myeloma
Hi MrPotatoHead,
I think radiation is used in treating multiple myeloma only to deal with specific bone lesions or plasmacytomas, not to deal with the multiple myeloma itself. In other words, to reduce some of the effects of the myeloma only. It is not used to kill myeloma cells themselves. I think that's because the myeloma cells are assumed to be distributed throughout the major bones in your body. So you can't "aim" the radiation at any one spot to nail the myeloma.
And I guess whole body radiation would be too rough. The SCT sort of accomplishes the same thing that whole body radiation might aim to do - killing as many myeloma cells as possible. But at the cost of having the side effect of wiping out your bone marrow, which I guess whole body radiation would do too.
Glad to hear from Rneb's post that radiation therapy does not rule out stem cell collection. That was my assumption, but it's good to hear that verified.
I hope that helps...
Mike
I think radiation is used in treating multiple myeloma only to deal with specific bone lesions or plasmacytomas, not to deal with the multiple myeloma itself. In other words, to reduce some of the effects of the myeloma only. It is not used to kill myeloma cells themselves. I think that's because the myeloma cells are assumed to be distributed throughout the major bones in your body. So you can't "aim" the radiation at any one spot to nail the myeloma.
And I guess whole body radiation would be too rough. The SCT sort of accomplishes the same thing that whole body radiation might aim to do - killing as many myeloma cells as possible. But at the cost of having the side effect of wiping out your bone marrow, which I guess whole body radiation would do too.
Glad to hear from Rneb's post that radiation therapy does not rule out stem cell collection. That was my assumption, but it's good to hear that verified.
I hope that helps...
Mike
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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: Radiation for multiple myeloma
Thanks so much, Mike. What you say makes sense. And it is encouraging that using radiation can be consistent with a subsequent stem cell transplant.
However, it appears that there are applications where radiation is used in a less targeted way against multiple myeloma, as in this article I came across:
http://www.tomotherapy.com/profiles/pt_cramnarine/
I guess this goes into the queue of questions for my oncologist. I will post any clarification I am able to get.
However, it appears that there are applications where radiation is used in a less targeted way against multiple myeloma, as in this article I came across:
http://www.tomotherapy.com/profiles/pt_cramnarine/
I guess this goes into the queue of questions for my oncologist. I will post any clarification I am able to get.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Radiation for multiple myeloma
Hi MrP,
Thanks for sharing that information.
Radiation can kill myeloma cells. A perfect example of this is how radiation is used very frequently, perhaps almost always, in people diagnosed with a solitary plasmacytoma. "Solitary plasmacytoma" is just a description for myeloma being in a very specific, localized area, which is an ideal situation for radiation therapy.
(Someone with a solitary plasmacytoma has myeloma cells in their body, just like someone with multiple myeloma. But the disease is, as I said, localized to a very specific area. That's why it's a diagnosis separate from multiple myeloma.)
You'll also hear about radiation being used in myeloma patients to treat bone lesions that are proving difficult to treat with normal therapy, and where the lesion could cause the bone to break. Again, though, radiation is being used in this case to treat the myeloma in a very specific area. It's not being used to treat the myeloma more generally.
Finally, you do hear sometimes about "total body irradiation" (TBI) being used in myeloma patients as part of the "conditioning regimen" prior to an allogeneic stem cell transplant. I think it's usually used, though, together with drug treatments to suppress the myeloma as much as possible prior to the transplant.
So, yes, radiation can kill myeloma cells, but I think it's been hard to use for most cases of myeloma, where the disease is spread throughout the body, because the amount of radiation that would be necessary to effectively treat myeloma like that would be dangerous to many other parts of the body. The new treatment you found may have use a way to focus the radiation specifically on the bones so that damage to the rest of the body is limited.
Thanks for sharing that information.
Radiation can kill myeloma cells. A perfect example of this is how radiation is used very frequently, perhaps almost always, in people diagnosed with a solitary plasmacytoma. "Solitary plasmacytoma" is just a description for myeloma being in a very specific, localized area, which is an ideal situation for radiation therapy.
(Someone with a solitary plasmacytoma has myeloma cells in their body, just like someone with multiple myeloma. But the disease is, as I said, localized to a very specific area. That's why it's a diagnosis separate from multiple myeloma.)
You'll also hear about radiation being used in myeloma patients to treat bone lesions that are proving difficult to treat with normal therapy, and where the lesion could cause the bone to break. Again, though, radiation is being used in this case to treat the myeloma in a very specific area. It's not being used to treat the myeloma more generally.
Finally, you do hear sometimes about "total body irradiation" (TBI) being used in myeloma patients as part of the "conditioning regimen" prior to an allogeneic stem cell transplant. I think it's usually used, though, together with drug treatments to suppress the myeloma as much as possible prior to the transplant.
So, yes, radiation can kill myeloma cells, but I think it's been hard to use for most cases of myeloma, where the disease is spread throughout the body, because the amount of radiation that would be necessary to effectively treat myeloma like that would be dangerous to many other parts of the body. The new treatment you found may have use a way to focus the radiation specifically on the bones so that damage to the rest of the body is limited.
Re: Radiation for multiple myeloma
Thank you, TerryH
That does make sense. When I had kyphoplasty a few months ago, the orthopedic surgeon told me that he would also "zap" some of the myeloma where he could. And then I read (somewhere) that radiation can destroy stem cells, implying that it would interfere with a stem cell transplant.
That does make sense. When I had kyphoplasty a few months ago, the orthopedic surgeon told me that he would also "zap" some of the myeloma where he could. And then I read (somewhere) that radiation can destroy stem cells, implying that it would interfere with a stem cell transplant.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Radiation for multiple myeloma
Spud, et al:
Perhaps I best be specific...to demonstrate that radiation can be used "widely" and " in multiples", in the same patient.
5/12/12--I had a walnut sized plasmacytoma removed from the Front left Sinus ( Above the eye), that had eaten the bone surrounding the forehead, sinus, had grown well into the left orbit, skull, and posteriorly, nearly into the brain cavity. It was a real bone eating tumor, that had been at work for awhile. They used Iowa Protocols ( Head & Neck) to cut me "ear to ear over the top", and separated the galea, from the skull and controlled bleeders, and flopped my scalp / forehead/ eyebrows, etc --down over my nose, so they could access all necessary areas.
Surgically, they removed the tumor, and removed much bone and tissue ( Margins) widely. They removed pieces of bone formerly comprising the inner 2/3 of my left eye socket. They re-aligned the eye and re-positioned it. They reconstructed the inner nose defects. ( Foraminal, mostly) They removed most of the bone that comprises / underlies the eyebrow and the upper eye socket. They removed the thin segment of bones, underlying what is known as the forehead, and up to the scalp line. They moved laterally and removed bone(s) over to my "Temple area". (There are several films on YouTube that show the surgery, in all it's gory detail.)
I had Russell Smith ( Surgical Oncological Otolarynologist and Dan Long (neurosurgery) as lead surgeons ...and they did a hell of a job. It was a 5 hour procedure.
At the end of resection and cutting back tissue and obtaining "adequate Margins", I had a hole the size of my fist, that you could stick your fist into and touch the Dura of the Brain. They packed this full of fat and ...quite possibly the resident's sandwich. ( Joke).
To close the large bony deficits, they used and shaped Titanium and space age plastic patches, utilizing a number of small bone screws. Then finally they filled in holes/ rough areas of the "Patches" with substantial synthetic bone amounts and ( ie. Hydoxyapetite) and sanded/ ground down the rough edges--much like you would do to a reconstruction of a car fender, using "Bondo".
Then they folded the flap of my scalp / forehead/ eyebrows / etc back up over the surgical area and fastened it with 32 small brass looking "staples"...and applied drains and bandages.
In total, the area involved was below eyebrow to hairline; middle of forehead to left temple; Middle of the eye socket from base of nare to lateral eye crease. That all had to be irridated, and the related areas.
When I awoke, I was told the surgery was much more involved, due to malignancy ( Multiple Myeloma) and more extensive surgery / Margins required...and that I'd likely be dead in 4 years.
I later had radiation over this entire area ( Left upper skull) . Not exactly a specific spot--like a spinal pedicle plasmacytoma.
My unfortunate luck was that a young Radiologist armed with an MRI, swore he saw a plasmacytoma in the inner ring of my hip ( Superior pole of the infra ramus-right hip).
My oncologist armed with a recent PET scan (no activity) swore he was blind. ( as some Radiologists are..!)
But what are you going to do ?? More than one P-toma = Myeloma----forget Solitary P-Toma and it's 90 % survival rate ; ignoring hip lesion could be lethal--so we agreed on Biopsy .
Radiologist couldn't find "his P-Toma". No biopsy result....but ignoring hip could be lethal....so I got radiation on the RIGHT Hip and the left side of my head, at the same time. The hip was fairly localized, but the anterior skull was widely irradiated..and some areas were razor thin radiated, right next to the eye. Yes, I'm on the watch for cataracts.
So, to be clear--from someone who has been there--wide and narrow beam radiation is sometimes used to irradiate wide areas, following surgical resection of a P-Toma. And it is used (WIDELY) for pelvic lesions, as well.
They radiated the margins--being careful around the eye, vessels, and Brain. ( Think 3 dimensional--like the dosimetrists / radiation oncologist must)
I had my right hip replaced 14 months later, thank you very little ,...( my young Radiologist !) The hip degenerated very quickly following radiation, requiring total replacement at 56 . ( Used a Moore or Southern approach / technique.) Left hip looks like a 35 year olds-- acetablum and trochanter are like new.
Go figure.
In summary, maybe you should consult a "Wheelless on Orthopedics" (Duke University); or other such reference material. Some times radiation ( widely ) is all you can use,.... in conjunction with Standard Induction ( Velcade) / Maintenance (Revlimid).
Even with solitary P-Toma's ..they will irridate widely ( Margins, you know).
This is a nasty disease....and the treatments (trephinations) can be barbaric.
Potato--I hope things turn around for you.
Good luck.
PS--U of Arkansas --Used / Uses total body irradiation for certain patients. FISH defined, I believe.
Perhaps I best be specific...to demonstrate that radiation can be used "widely" and " in multiples", in the same patient.
5/12/12--I had a walnut sized plasmacytoma removed from the Front left Sinus ( Above the eye), that had eaten the bone surrounding the forehead, sinus, had grown well into the left orbit, skull, and posteriorly, nearly into the brain cavity. It was a real bone eating tumor, that had been at work for awhile. They used Iowa Protocols ( Head & Neck) to cut me "ear to ear over the top", and separated the galea, from the skull and controlled bleeders, and flopped my scalp / forehead/ eyebrows, etc --down over my nose, so they could access all necessary areas.
Surgically, they removed the tumor, and removed much bone and tissue ( Margins) widely. They removed pieces of bone formerly comprising the inner 2/3 of my left eye socket. They re-aligned the eye and re-positioned it. They reconstructed the inner nose defects. ( Foraminal, mostly) They removed most of the bone that comprises / underlies the eyebrow and the upper eye socket. They removed the thin segment of bones, underlying what is known as the forehead, and up to the scalp line. They moved laterally and removed bone(s) over to my "Temple area". (There are several films on YouTube that show the surgery, in all it's gory detail.)
I had Russell Smith ( Surgical Oncological Otolarynologist and Dan Long (neurosurgery) as lead surgeons ...and they did a hell of a job. It was a 5 hour procedure.
At the end of resection and cutting back tissue and obtaining "adequate Margins", I had a hole the size of my fist, that you could stick your fist into and touch the Dura of the Brain. They packed this full of fat and ...quite possibly the resident's sandwich. ( Joke).
To close the large bony deficits, they used and shaped Titanium and space age plastic patches, utilizing a number of small bone screws. Then finally they filled in holes/ rough areas of the "Patches" with substantial synthetic bone amounts and ( ie. Hydoxyapetite) and sanded/ ground down the rough edges--much like you would do to a reconstruction of a car fender, using "Bondo".
Then they folded the flap of my scalp / forehead/ eyebrows / etc back up over the surgical area and fastened it with 32 small brass looking "staples"...and applied drains and bandages.
In total, the area involved was below eyebrow to hairline; middle of forehead to left temple; Middle of the eye socket from base of nare to lateral eye crease. That all had to be irridated, and the related areas.
When I awoke, I was told the surgery was much more involved, due to malignancy ( Multiple Myeloma) and more extensive surgery / Margins required...and that I'd likely be dead in 4 years.
I later had radiation over this entire area ( Left upper skull) . Not exactly a specific spot--like a spinal pedicle plasmacytoma.
My unfortunate luck was that a young Radiologist armed with an MRI, swore he saw a plasmacytoma in the inner ring of my hip ( Superior pole of the infra ramus-right hip).
My oncologist armed with a recent PET scan (no activity) swore he was blind. ( as some Radiologists are..!)
But what are you going to do ?? More than one P-toma = Myeloma----forget Solitary P-Toma and it's 90 % survival rate ; ignoring hip lesion could be lethal--so we agreed on Biopsy .
Radiologist couldn't find "his P-Toma". No biopsy result....but ignoring hip could be lethal....so I got radiation on the RIGHT Hip and the left side of my head, at the same time. The hip was fairly localized, but the anterior skull was widely irradiated..and some areas were razor thin radiated, right next to the eye. Yes, I'm on the watch for cataracts.
So, to be clear--from someone who has been there--wide and narrow beam radiation is sometimes used to irradiate wide areas, following surgical resection of a P-Toma. And it is used (WIDELY) for pelvic lesions, as well.
They radiated the margins--being careful around the eye, vessels, and Brain. ( Think 3 dimensional--like the dosimetrists / radiation oncologist must)
I had my right hip replaced 14 months later, thank you very little ,...( my young Radiologist !) The hip degenerated very quickly following radiation, requiring total replacement at 56 . ( Used a Moore or Southern approach / technique.) Left hip looks like a 35 year olds-- acetablum and trochanter are like new.
Go figure.
In summary, maybe you should consult a "Wheelless on Orthopedics" (Duke University); or other such reference material. Some times radiation ( widely ) is all you can use,.... in conjunction with Standard Induction ( Velcade) / Maintenance (Revlimid).
Even with solitary P-Toma's ..they will irridate widely ( Margins, you know).
This is a nasty disease....and the treatments (trephinations) can be barbaric.
Potato--I hope things turn around for you.
Good luck.
PS--U of Arkansas --Used / Uses total body irradiation for certain patients. FISH defined, I believe.
-
Rneb
Re: Radiation for multiple myeloma
Thanks MrPotatoHead,TerryH, and Rneb for your recent posts in this thread. I've learned something from each of you. And that's one of the things that's so great about the Beacon.
MrP, I had not heard of TomoTherapy before. That's an interesting story at the link you provided. It will be interesting to see how widely TomoTherapy is used to treat multiple myeloma in the future.
TerryH, good point about the use of Total Body Irradiation as a conditioning regimen before allo transplants. I had forgotten about that. And that's extra stupid of me because a good friend went through that before an allo BMT for acute myeloid leukemia.
Rneb, all I can say is Yikes! You sure have gone through a lot. I admire you and feel like a myeloma amateur when comparing our experiences.
Best wishes to all of you.
Mike
MrP, I had not heard of TomoTherapy before. That's an interesting story at the link you provided. It will be interesting to see how widely TomoTherapy is used to treat multiple myeloma in the future.
TerryH, good point about the use of Total Body Irradiation as a conditioning regimen before allo transplants. I had forgotten about that. And that's extra stupid of me because a good friend went through that before an allo BMT for acute myeloid leukemia.
Rneb, all I can say is Yikes! You sure have gone through a lot. I admire you and feel like a myeloma amateur when comparing our experiences.
Best wishes to all of you.
Mike
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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: Radiation for multiple myeloma
My G-d, Rneb! I can't believe what you have been through! I can only hope things are much hetter for you now. That is an unbelievable ordeal you endured.
I am still in early days of this illness - my problem is that my doctor missed the diagnosis by a few years so my multiple myeloma was munching away at my bones until we finally ran the right tests last March. So now I have a lot of bone pain, along with fatigue.
So I am still in learning mode, and read that radiation can stop the pain in some cases but may compromise further treatment - like a stem cell transplant. Right now I have been told by both my oncologist and a myeloma center of excellence I contacted for a second opinion, that I am not a candidate for a stem cell procedure, but that may change in the future. There is a mini-stem cell procedure I just read about on the City of Hope web page that may be a possibility for me.
My current treatment is carfilzomib and dex, so we will see how that goes.
Rneb, I think I have to echo Mike when I say yikes! concerning what you have endured. May your road ahead be easy and tranquil. Thanks so much for sharing your experience.
Mike, thanks for all the info. I see my oncologist later today and will post anything enlightening I learn from him concerning radiation and multiple myeloma.
I am still in early days of this illness - my problem is that my doctor missed the diagnosis by a few years so my multiple myeloma was munching away at my bones until we finally ran the right tests last March. So now I have a lot of bone pain, along with fatigue.
So I am still in learning mode, and read that radiation can stop the pain in some cases but may compromise further treatment - like a stem cell transplant. Right now I have been told by both my oncologist and a myeloma center of excellence I contacted for a second opinion, that I am not a candidate for a stem cell procedure, but that may change in the future. There is a mini-stem cell procedure I just read about on the City of Hope web page that may be a possibility for me.
My current treatment is carfilzomib and dex, so we will see how that goes.
Rneb, I think I have to echo Mike when I say yikes! concerning what you have endured. May your road ahead be easy and tranquil. Thanks so much for sharing your experience.
Mike, thanks for all the info. I see my oncologist later today and will post anything enlightening I learn from him concerning radiation and multiple myeloma.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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