Hi,
My sister has relapsed again with an extramedullary plasmacytoma that is growing rapidly on the scar tissue at her port side. Her oncologist referred her for radiation therapy. Unfortunately the radiologists in the Russian city she is in, though they have excellent equipment and experience with other cancers, have never treated a plasmacytoma.
My sister needs treatment urgently, but the radiologists think that the prescribed low dose is not going to cut it.
Can anyone point me to any protocols or guidelines for radiology treatments that target extramedullary multiple myeloma?
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Radiation therapy guidelines for extramedullary myeloma?
Hi Gala,
So sorry to hear about this development.
A quick google of "radiation treatment guidelines extramedullary plasmacytoma" brings up articles like this one:
http://emedicine.medscape.com/article/207233-treatment?pa=aWw5vo%2F0CvjjAb4eDB3ELOt%2BcP5o2zMbI%2BE3QXMB7RyLEzpUkxThU5lEGgkfkD4avrf3Syopv6WbdXAVomJLyc5tQIqSBXMeLFS1IOzvhsM%3D
So sorry to hear about this development.
A quick google of "radiation treatment guidelines extramedullary plasmacytoma" brings up articles like this one:
http://emedicine.medscape.com/article/207233-treatment?pa=aWw5vo%2F0CvjjAb4eDB3ELOt%2BcP5o2zMbI%2BE3QXMB7RyLEzpUkxThU5lEGgkfkD4avrf3Syopv6WbdXAVomJLyc5tQIqSBXMeLFS1IOzvhsM%3D
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Radiation therapy guidelines for extramedullary myeloma?
Hello Gala,
I am so sorry to hear of your sister's new struggle with an extra medullary plasmacytoma. I read the article that Multibilly just posted and the procedure sounded similar to what I recently went thru with breast cancer.
First there is surgery, which would clear the cancerous area away and leave 'margins' of healthy tissue. Then, a series of radiation treatments would be given. Maybe some others reading could explain what the procedure is for radiation of myeloma plasmacytomas.
I wish your sister good luck and hope that she can overcome this obstacle, as she has with her other myeloma problems.
I am so sorry to hear of your sister's new struggle with an extra medullary plasmacytoma. I read the article that Multibilly just posted and the procedure sounded similar to what I recently went thru with breast cancer.
First there is surgery, which would clear the cancerous area away and leave 'margins' of healthy tissue. Then, a series of radiation treatments would be given. Maybe some others reading could explain what the procedure is for radiation of myeloma plasmacytomas.
I wish your sister good luck and hope that she can overcome this obstacle, as she has with her other myeloma problems.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Radiation therapy guidelines for extramedullary myeloma?
Hello-
My husband's experience is that the low dose radiation is very effective- his plasmacytomas (and there have been dozens) have always responded very well to it and have always disappeared (usually the radiation is every day for 10 business days- the tumors can sometimes take a week or two after that to shrink). The areas that are radiated are also much less likely, on him, to have new tumors show up later. Myeloma doesn't need the same high levels as some other cancers.
Also, he has never had to have surgery for removal of the plasmacytoma before the radiation (it is different than how they treat breast cancer, I believe)- the radiation itself does all the work.
Good luck!
My husband's experience is that the low dose radiation is very effective- his plasmacytomas (and there have been dozens) have always responded very well to it and have always disappeared (usually the radiation is every day for 10 business days- the tumors can sometimes take a week or two after that to shrink). The areas that are radiated are also much less likely, on him, to have new tumors show up later. Myeloma doesn't need the same high levels as some other cancers.
Also, he has never had to have surgery for removal of the plasmacytoma before the radiation (it is different than how they treat breast cancer, I believe)- the radiation itself does all the work.
Good luck!
Re: Radiation therapy guidelines for extramedullary myeloma?
Ladyaero: thank you for sharing this. My sister has now had four sessions of radiation. I think the doctors decided to go with a higher overall dose, not sure how many days they are planning to treat. My sister does not like to ask questions, so I don't know the exact dose they decided upon, but I passed on all the info I could get.
Unfortunately, my sister has developed a bad cold now. It was not caused by the radiation, as it started just before she began the treatment. Now she is running a fever, and the docs said that if it is high (over 99.5) they would not treat. That would be another setback. I'll keep you posted.
Unfortunately, my sister has developed a bad cold now. It was not caused by the radiation, as it started just before she began the treatment. Now she is running a fever, and the docs said that if it is high (over 99.5) they would not treat. That would be another setback. I'll keep you posted.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Radiation therapy guidelines for extramedullary myeloma?
Multibilly, Nancy: thank you very much. I did find quite a bit of info through some Internet searches, but still remained confused as to what applies to extramedullary tumors in patients with multiple myeloma as opposed to solitary tumors (without multiple myeloma). The doctors decided to go with higher dosage. I'll let you know what happens.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Radiation therapy guidelines for extramedullary myeloma?
Just an update:
My sister had 9 sessions of radiotherapy at 2 Gy per session. Altogether she received 18 Gy. The tumor was gone and she has not experienced any side effects at all. The decision was to keep her port in place during the treatment, as the tumor was all around it. After the treatment, the doctor advised her to have the port removed, as there may be delayed complications of radiation and the damaged tissue may react badly to the port. Yesterday she had her port removed. It was in a very good condition and she felt sorry to let it go, however, the surgeon found the remains of the tumor attached to the line. He commented it looked like an old chewing gum. Well, good riddance.
She is now on Revlimid, Velcade, and dexamethasone (RVD), feeling OK, but low WBC. Hope she can continue with the treatment for the foreseeable future.
My sister had 9 sessions of radiotherapy at 2 Gy per session. Altogether she received 18 Gy. The tumor was gone and she has not experienced any side effects at all. The decision was to keep her port in place during the treatment, as the tumor was all around it. After the treatment, the doctor advised her to have the port removed, as there may be delayed complications of radiation and the damaged tissue may react badly to the port. Yesterday she had her port removed. It was in a very good condition and she felt sorry to let it go, however, the surgeon found the remains of the tumor attached to the line. He commented it looked like an old chewing gum. Well, good riddance.
She is now on Revlimid, Velcade, and dexamethasone (RVD), feeling OK, but low WBC. Hope she can continue with the treatment for the foreseeable future.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Radiation therapy guidelines for extramedullary myeloma?
Glad to hear she responded so well, Gala!
Re: Radiation therapy guidelines for extramedullary myeloma?
Thank you, Ladyaero!
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
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