Was diagnosed with myeloma in August 2014. The PET scan done at that time showed myeloma activity in the sternum, right collar bone, and a few other areas. I did 4 rounds of Revlimid, Velcade, and dexamethasone (RVD), which gave me good results and then had an auto stem cell transplant (SCT) at Mayo in February 2015.
At my 100 Day checkup in June, my bone marrow biopsy and bloodwork indicated I had reached stringent complete response (sCR). I have the high risk del(17p) abnormality, so I have begun Velcade every other week as my maintenance.
I have noticed increased bone pain in the right collar bone and I'm wondering, is it possible to be in sCR (according to blood and marrow results), but have active myeloma in the collar bone causing this pain?
If that is possible, what imaging test should I be asking my oncologist to have done?
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Bone pain while in stringent complete remission?
Hi CabinGirl,
While this doesn't completely answer your question, you should find Kevin's comments to be insightful.
Kevin Jones, "ME vs. multiple myeloma: Two Years Of Chemo - What Has It Done To Me?", The Myeloma Beacon, June 20, 2013
I would think that a localized MRI of that area would be used to help determine if the pain were due to lytic lesion activity - but I'm not a doc. A PET/CT would also catch it, but that seems like overkill (and a lot of radiation of your entire body), given you know where the pain is.
While this doesn't completely answer your question, you should find Kevin's comments to be insightful.
Kevin Jones, "ME vs. multiple myeloma: Two Years Of Chemo - What Has It Done To Me?", The Myeloma Beacon, June 20, 2013
I would think that a localized MRI of that area would be used to help determine if the pain were due to lytic lesion activity - but I'm not a doc. A PET/CT would also catch it, but that seems like overkill (and a lot of radiation of your entire body), given you know where the pain is.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Bone pain while in stringent complete remission?
Hi CabinGirl,
As usual, Multibilly has some good feedback. I also was sure this subject came up at some point in the past here in the forum, and found almost exactly your question asked here:
"Stringent complete response and bone pain" (started March 29, 2010)
It wasn't the forum discussion I was thinking of when I did my search, but it does answer a lot of your questions. The discussion I was thinking about was probably one of these:
"Remission, what does it mean?" (started Jan 3, 2013)
(see the response from Dr. Voorhees)
"Can myeloma-related bone lesions develop really fast?" (started Sep 13, 2014)
(see the response from Dr. Hoffman)
Has anything been going on with your free light chain levels and ratio since you noticed the bone pain? That's something I would be watching, although keep in mind that those results will vary a bit even if everything is fine.
Good luck!
As usual, Multibilly has some good feedback. I also was sure this subject came up at some point in the past here in the forum, and found almost exactly your question asked here:
"Stringent complete response and bone pain" (started March 29, 2010)
It wasn't the forum discussion I was thinking of when I did my search, but it does answer a lot of your questions. The discussion I was thinking about was probably one of these:
"Remission, what does it mean?" (started Jan 3, 2013)
(see the response from Dr. Voorhees)
"Can myeloma-related bone lesions develop really fast?" (started Sep 13, 2014)
(see the response from Dr. Hoffman)
Has anything been going on with your free light chain levels and ratio since you noticed the bone pain? That's something I would be watching, although keep in mind that those results will vary a bit even if everything is fine.
Good luck!
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JimNY
Re: Bone pain while in stringent complete remission?
Hello Cabin Girl:
Quick suggestion, many others have said that if multiple myeloma was not in the picture (you and I are in the same general age), that it is actually normal to start having certain aches and pains at our age.
One possibility is arthritis in the shoulder (has this been an area of a past injury?). Most insurances will allow another PET scan after one year. Since you are having some pain, you should probably get that. Another example is a targeted MRI. The targeted MRI would do a better job of picking up non-myeloma related conditions. In any case, I think you should have one of those two tests (or another suggested by a knowledgeable expert) for piece of mind.
You said that your treatment has driven the multiple myeloma to CR. My understanding is that, in your shoes, a myeloma-related bone tumor is possible, but rare. Good luck.
Quick suggestion, many others have said that if multiple myeloma was not in the picture (you and I are in the same general age), that it is actually normal to start having certain aches and pains at our age.
One possibility is arthritis in the shoulder (has this been an area of a past injury?). Most insurances will allow another PET scan after one year. Since you are having some pain, you should probably get that. Another example is a targeted MRI. The targeted MRI would do a better job of picking up non-myeloma related conditions. In any case, I think you should have one of those two tests (or another suggested by a knowledgeable expert) for piece of mind.
You said that your treatment has driven the multiple myeloma to CR. My understanding is that, in your shoes, a myeloma-related bone tumor is possible, but rare. Good luck.
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JPC - Name: JPC
Re: Bone pain while in stringent complete remission?
I to have pain in my hip where I had lesions years ago. You should do a local MRI. You may have muscle pain where the muscles attach to the bone. In my case, the lesions and subsequent healing have caused spurs that cause muscle pain.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
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