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Re: Radiation for multiple myeloma
My dad had about 25 sessions of radiation (5 weeks) to kill off the remaining myeloma cells post-SP vertebroplasty, but it was a very targeted form; first half of the doses he didn't feel much in the way of side-effects, the second-half of the doses, he felt somewhat unwell and had been prescribed a pill to take before each dose.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Radiation for multiple myeloma
Mr. Potatohead-
Radiation in people with myeloma is often used for pain control where there are symptomatic bone lesions. I had 6 sessions of radiation to my left fibula a couple of years ago because of immense pain. I have bone lesions everywhere, but none of them have been symptomatic other than a fracture of the left humerus and the left fibular pain. Most often you will hear people talk about having radiation for lesions of the spine because of pain. It can also prevent the lesion from worsening by killing the myeloma cells that are causing the lesion.
I would think that radiation might make a harvesting of stem cells more difficult if it was done to an area of the body where there is high bone marrow production, ie hip and sternum. But, I'm just thinking that this is the case without anything to back up my thoughts.
Thanks for asking the questions. They started an interesting discussion.
Nancy in Phila
Radiation in people with myeloma is often used for pain control where there are symptomatic bone lesions. I had 6 sessions of radiation to my left fibula a couple of years ago because of immense pain. I have bone lesions everywhere, but none of them have been symptomatic other than a fracture of the left humerus and the left fibular pain. Most often you will hear people talk about having radiation for lesions of the spine because of pain. It can also prevent the lesion from worsening by killing the myeloma cells that are causing the lesion.
I would think that radiation might make a harvesting of stem cells more difficult if it was done to an area of the body where there is high bone marrow production, ie hip and sternum. But, I'm just thinking that this is the case without anything to back up my thoughts.
Thanks for asking the questions. They started an interesting discussion.
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: Radiation for multiple myeloma
Little Monkey, Thanks for sharing your dad's experience.
Nancy,
Thank you very much for sharing your experience and knowledge. Can you tell me how your doctors determined that the right target to alleviate your pain was your left fibula?
Thanks,
Rob
Nancy,
Thank you very much for sharing your experience and knowledge. Can you tell me how your doctors determined that the right target to alleviate your pain was your left fibula?
Thanks,
Rob
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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
Rob: (Potato)
What is the source of your pain ?
Bone pain? Joint Pain? Spinal ? Other ?
Certain meds, including narcotics, can be quite effective in pain control. Exercise is also helpful. Many people swear by swimming and hydro therapy, etc. There are a number of posts herein, which discuss controlling ongoing pain issues, thru various modalities. Some Non-conventional.
Radiation tends to be : invasive, expensive,cumulative ....and often, irreversible. Not something to be taken lightly. The Fatigue generated by week 6 of radiation therapy, is pretty darn pervasive. It is also "cumulative". The worst times were in the 6 weeks following completion of Radiation--by then, I was in Induction w/ Velcade--which tore me up.
I was a zombie.
I'm no Iron Man--I glow from radiation --because given the complexities of multiple myeloma in 2012, and in my particular situation, I really had no other effective choice(s).
Perhaps you do ??
Nancy is a top notch Physical Therapist. She has many good ideas re: pain control and restoration of function. Maybe she has a few ideas.?
Good luck.
What is the source of your pain ?
Bone pain? Joint Pain? Spinal ? Other ?
Certain meds, including narcotics, can be quite effective in pain control. Exercise is also helpful. Many people swear by swimming and hydro therapy, etc. There are a number of posts herein, which discuss controlling ongoing pain issues, thru various modalities. Some Non-conventional.
Radiation tends to be : invasive, expensive,cumulative ....and often, irreversible. Not something to be taken lightly. The Fatigue generated by week 6 of radiation therapy, is pretty darn pervasive. It is also "cumulative". The worst times were in the 6 weeks following completion of Radiation--by then, I was in Induction w/ Velcade--which tore me up.
I was a zombie.
I'm no Iron Man--I glow from radiation --because given the complexities of multiple myeloma in 2012, and in my particular situation, I really had no other effective choice(s).
Perhaps you do ??
Nancy is a top notch Physical Therapist. She has many good ideas re: pain control and restoration of function. Maybe she has a few ideas.?
Good luck.
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Rneb
Re: Radiation for multiple myeloma
Rneb
According to my doctor, the source of my pain is twofold: First, there is nerve damage / impingement from vertebral fractures caused by the multiple myeloma. Some of this was alleviated by successful kyphoplasty, but not all of it.
And second, nerve damage from lytic lesions, of which I have many. He explained that there are nerves that run along the surface of one's bones, and the "punched holes" that are the myeloma-caused lytic lesions damage these nerves in the course of damaging the bones.
I feel the most pain in my lower back, ribs, pelvis, and legs. I wear a 100 mcg fentanyl patch and take two 15 mg oxycodone tablets a day, and the drugs reduce the pain level by 30-40%.
I have tried physical therapy, massage, relaxation exercises, meditation, and have not had success with any of that.
Today my oncologist told me that I will probably need to live with some level of this pain. I frankly do not know if that is possible. However, I have not gone to a pain specialist yet. My pain control has been handled by my primary care physician so far.
Thanks for asking, and thanks for all the great info and suggestions.
According to my doctor, the source of my pain is twofold: First, there is nerve damage / impingement from vertebral fractures caused by the multiple myeloma. Some of this was alleviated by successful kyphoplasty, but not all of it.
And second, nerve damage from lytic lesions, of which I have many. He explained that there are nerves that run along the surface of one's bones, and the "punched holes" that are the myeloma-caused lytic lesions damage these nerves in the course of damaging the bones.
I feel the most pain in my lower back, ribs, pelvis, and legs. I wear a 100 mcg fentanyl patch and take two 15 mg oxycodone tablets a day, and the drugs reduce the pain level by 30-40%.
I have tried physical therapy, massage, relaxation exercises, meditation, and have not had success with any of that.
Today my oncologist told me that I will probably need to live with some level of this pain. I frankly do not know if that is possible. However, I have not gone to a pain specialist yet. My pain control has been handled by my primary care physician so far.
Thanks for asking, and thanks for all the great info and suggestions.
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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,
I'm sorry to hear about the pain you're continuing to experience. I think going to see a pain specialist would be a good idea. A specialist is probably better equipped to come up with a cocktail of pain relievers that reduces your pain further without too many side effects.
Also, a specialist may be better able to prescribe you more pain killers than your GP. Primary care physicians are constantly under pressure not to over-prescribe prescription pain killers as a result of their abuse potential. Those issues shouldn't come into play in situations such as yours, but you never know.
Good luck!
I'm sorry to hear about the pain you're continuing to experience. I think going to see a pain specialist would be a good idea. A specialist is probably better equipped to come up with a cocktail of pain relievers that reduces your pain further without too many side effects.
Also, a specialist may be better able to prescribe you more pain killers than your GP. Primary care physicians are constantly under pressure not to over-prescribe prescription pain killers as a result of their abuse potential. Those issues shouldn't come into play in situations such as yours, but you never know.
Good luck!
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JimNY
Re: Radiation for multiple myeloma
Thanks, JimNY
Yes, I agree and my primary doc does as well. So hopefully I will get some additional relief. I think you may be right about the worry concerning abuse. I just want a reasonable QOL and this is probably the way to go right now.
This is such a complex illness that affects the body in so many ways. I am really grateful for the Beacon site and the opportunity to consult with others dealing with the same kinds of issues. It does go a long way toward alleviating the fear and sense of isolation.
Yes, I agree and my primary doc does as well. So hopefully I will get some additional relief. I think you may be right about the worry concerning abuse. I just want a reasonable QOL and this is probably the way to go right now.
This is such a complex illness that affects the body in so many ways. I am really grateful for the Beacon site and the opportunity to consult with others dealing with the same kinds of issues. It does go a long way toward alleviating the fear and sense of isolation.
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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
Rob:
Nerve ablation (sensory, not motor) is an option. Your Pain Specialist will lay it out for you.
ESI--Epidural Spine Injections seem to help many. I have had 2 myself, and they quieted down 2 bulging Lumbar discs, quite nicely for me.
Gamma Knife is an option--but if the 2 above procedures don't help--what are you going to cut with the Gamma Knife ?
Stretching and hydro rehab /swimming have helped many folks.
Sounds like you've been thru a lot, but are not ready to quit. I applaud your tenacity.
Good luck.
Nerve ablation (sensory, not motor) is an option. Your Pain Specialist will lay it out for you.
ESI--Epidural Spine Injections seem to help many. I have had 2 myself, and they quieted down 2 bulging Lumbar discs, quite nicely for me.
Gamma Knife is an option--but if the 2 above procedures don't help--what are you going to cut with the Gamma Knife ?
Stretching and hydro rehab /swimming have helped many folks.
Sounds like you've been thru a lot, but are not ready to quit. I applaud your tenacity.
Good luck.
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Rneb
Re: Radiation for multiple myeloma
Mr P,
Wow! ..."a 100 mcg fentanyl patch and ... two 15 mg oxycodone tablets a day, and the drugs [only!] reduce the pain level by 30-40%". I tried the same regimen shortly after I was first diagnosed in January of 2013. I found that the patch was the only thing that helped with the pain, but it was utterly debilitating, and the oxy only served to make me loopy but did nothing for the pain.
For whatever it's worth, I did find the BCM-95 formulas of curcumin to be very helpful with the pain – and I tried everything (yes, including cannabis!).
Seven weeks ago I completed a 10-round treatment protocol of targeted radiation for a relapse of myeloma that was happily munching away on my mid-thoracic vertebrae and causing me great pain. I was originally scheduled for 12 treatments, but the radiation was very debilitating for me. My radiation oncology specialist (considered the best in our little state) assured me that I would not experience any side effects.
My radiation treatments were scheduled for 12 rounds to be given daily (Mon-Fri). The good news is that my pain levels began to abate by the 4th radiation treatment. The bad news is that, by the 8th treatment, I was really sick. They were very insistent that I should continue the protocol anyway. I struggled through 2 more sessions and then refused further treatment.
In my mind, I'm convinced that re-initiating my Velcade / dex protocol would have given me the same relief, without those awful side effects. I have a history of responding very atypically to various treatments and drugs, so I am not suggesting that the same may be true for you. I am, however, suggesting that you consider your options carefully.
Wishing all the best,
Aloha
Daniel
Wow! ..."a 100 mcg fentanyl patch and ... two 15 mg oxycodone tablets a day, and the drugs [only!] reduce the pain level by 30-40%". I tried the same regimen shortly after I was first diagnosed in January of 2013. I found that the patch was the only thing that helped with the pain, but it was utterly debilitating, and the oxy only served to make me loopy but did nothing for the pain.
For whatever it's worth, I did find the BCM-95 formulas of curcumin to be very helpful with the pain – and I tried everything (yes, including cannabis!).
Seven weeks ago I completed a 10-round treatment protocol of targeted radiation for a relapse of myeloma that was happily munching away on my mid-thoracic vertebrae and causing me great pain. I was originally scheduled for 12 treatments, but the radiation was very debilitating for me. My radiation oncology specialist (considered the best in our little state) assured me that I would not experience any side effects.
My radiation treatments were scheduled for 12 rounds to be given daily (Mon-Fri). The good news is that my pain levels began to abate by the 4th radiation treatment. The bad news is that, by the 8th treatment, I was really sick. They were very insistent that I should continue the protocol anyway. I struggled through 2 more sessions and then refused further treatment.
In my mind, I'm convinced that re-initiating my Velcade / dex protocol would have given me the same relief, without those awful side effects. I have a history of responding very atypically to various treatments and drugs, so I am not suggesting that the same may be true for you. I am, however, suggesting that you consider your options carefully.
Wishing all the best,
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Radiation for multiple myeloma
Thank you, DanielR
I am going to be cautious about this. Thanks so much for sharing your experience.
No one is pushing radiation on me; in fact, no one has even suggested it. I uncovered the option myself in the course of researching treatments for multiple myeloma.
I will be careful.
I am going to be cautious about this. Thanks so much for sharing your experience.
No one is pushing radiation on me; in fact, no one has even suggested it. I uncovered the option myself in the course of researching treatments for multiple myeloma.
I will be careful.
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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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