Went into my doctor to discuss treatment for my multiple myeloma today. The doc had me have 2 MRI a couple weeks ago & after I asked him some questions I had jotted down. He said he wanted to discuss my MRI's.
He told me they had found no tumors or anything related to myeloma on the bones in my spine; however, they had found lots of spinal stenoisis & arthritis & my spine had deteriorated a lot since my last MRI a year & a half ago. He said any pain I had (which is a lot) is not myeloma-related. He said he wanted to put any treatment for multiple myeloma on hold until I saw an orthopedic surgeon to see if I needed surgery or physical therapy.
I guess I was stunned since he was so anxious for me to start treatment the last time I was in. I did find out my M spike was 2.49 & when they did the whole body x ray they found no bone involvement; however, on the bone morrow biopsy I had 20 percent plasma cells & 10 is normal.
With all this in mind does anyone have a comment on this change in my treatment plan. Thanks for any comments anyone has.
Forums
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: I got a shock today - delay in treatment
Hello,
I am a little confused. With the M-spike and bone marrow numbers, I would think that while it may not be indicative of multiple myeloma, the numbers warrant further testing, even if there were no bone skeletal involvement.
Were other tests done?
Best wishes to you!
I am a little confused. With the M-spike and bone marrow numbers, I would think that while it may not be indicative of multiple myeloma, the numbers warrant further testing, even if there were no bone skeletal involvement.
Were other tests done?
Best wishes to you!
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: I got a shock today - delay in treatment
I guess I'm confused too. What classifies you as having symptomatic multiple myeloma that requires treatment? If there is no mm-related bone involvement , are you suffering from hypercalcemia, anemia or kidney issues as defined by the multiple myeloma CRAB standards? 20% plasma cell involvement and/or an M-Spike of 2.49 doesn't classify you as having symptomatic multiple myeloma.
I think in your situation, I would also consider getting a PET/CT scan to see if there might indeed be some bone involvement. PET/CTs are really good at picking up tumor activity. If this is not possible, I might suggest getting a second read from a different radiologist on your current MRI results.
You'd be surprised at how differently the same radiological images can be interpreted from one group to the next....at least I had the experience where I had one radiologist classify me as having multiple myeloma bone lesions and then two other radiologists couldn't find the slightest sign of a bone lesion...all of them using the exact same images.
For the sake of discussion, and assuming you do have symptomatic multiple myeloma for the moment, it seems very prudent to first understand what may be needed for treating the other conditions before embarking on any treatment for multiple myeloma. I would want to know the overall picture and what is required for each condition before starting one treatment or another.
I think in your situation, I would also consider getting a PET/CT scan to see if there might indeed be some bone involvement. PET/CTs are really good at picking up tumor activity. If this is not possible, I might suggest getting a second read from a different radiologist on your current MRI results.
You'd be surprised at how differently the same radiological images can be interpreted from one group to the next....at least I had the experience where I had one radiologist classify me as having multiple myeloma bone lesions and then two other radiologists couldn't find the slightest sign of a bone lesion...all of them using the exact same images.
For the sake of discussion, and assuming you do have symptomatic multiple myeloma for the moment, it seems very prudent to first understand what may be needed for treating the other conditions before embarking on any treatment for multiple myeloma. I would want to know the overall picture and what is required for each condition before starting one treatment or another.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: I got a shock today - delay in treatment
Thanks so much for the input.
I did have lots of blood work done & most of the blood work showed just a few slightly elevated levels such as the M spike of 2.49, positive for IgG, microglobulin 4.25 & everything else was in range. The bone morrow test showed 20 per cent plasma cells & the doc says that is 10 per cent too many. Full body scans & MRI showed no tumors or lesions on bones just degenerated disc disease from old age.
I do have kidney disease but have had that for 25 years & does not seem to be related to multiple myeloma or so the doc thinks since it has been pretty stable for the last 5 years. He has backed off from treatment that he lead my Husband & I to believe was very necessary early in the game. He seems to want me to see the orthopedic doc & maybe do PT & see him again in 6 weeks.
I am getting to feel that maybe he is questioning the diagnosis -- this is a very complex disease & he is a very good doc so I feel I want to follow whatever he tells me to do but I do think it is sort of strange.
I appreciate so much the input that you all have given me. I am so impressed with the knowledge of the patients on this board. It has been a real life saver to me.
I did have lots of blood work done & most of the blood work showed just a few slightly elevated levels such as the M spike of 2.49, positive for IgG, microglobulin 4.25 & everything else was in range. The bone morrow test showed 20 per cent plasma cells & the doc says that is 10 per cent too many. Full body scans & MRI showed no tumors or lesions on bones just degenerated disc disease from old age.
I do have kidney disease but have had that for 25 years & does not seem to be related to multiple myeloma or so the doc thinks since it has been pretty stable for the last 5 years. He has backed off from treatment that he lead my Husband & I to believe was very necessary early in the game. He seems to want me to see the orthopedic doc & maybe do PT & see him again in 6 weeks.
I am getting to feel that maybe he is questioning the diagnosis -- this is a very complex disease & he is a very good doc so I feel I want to follow whatever he tells me to do but I do think it is sort of strange.
I appreciate so much the input that you all have given me. I am so impressed with the knowledge of the patients on this board. It has been a real life saver to me.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: I got a shock today - delay in treatment
From what you are saying, it does sound very plausible that treatment is not (yet) warranted at this time.
However, if possible, I would still get a second opinion. With something this important, I think it's not a bad thing to do at all.
Regardless, best wishes going forward!
However, if possible, I would still get a second opinion. With something this important, I think it's not a bad thing to do at all.
Regardless, best wishes going forward!
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: I got a shock today - delay in treatment
hI Barbara, I would think that at the very least you might like to get another consult from a myeloma specialist. You do not mention whether you have had the serum free light chain testing done. Some patients are primarily monitored by this test, if they are 'non secretory , but most myeloma patients also get this blood test.
You may have one of the conditions that is a precursor to myeloma...MGUS or SMM. It would be nice to know that in advance of any full blown myeloma. Also a bit worrying that you do have problems with your kidney function too!
Best wishes with your investigations.
You may have one of the conditions that is a precursor to myeloma...MGUS or SMM. It would be nice to know that in advance of any full blown myeloma. Also a bit worrying that you do have problems with your kidney function too!
Best wishes with your investigations.
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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: I got a shock today - delay in treatment
Nancy Yes, I did have all the testing done for the free light & they all came back within the normal ranges. I'm beginning to think that maybe I have smoldering multiple myeloma instead of all out multiple myeloma. I have contacted my kidney Doc (he sent me to this cancer Doc to begin with) & asked him to review all of my test results. The last thing I want to do is to start chemo before I have to. The cancer Doc made my next appointment. for 6 weeks out so he doesn't seem in any hurry to start treatment. He just seems more concerned about checking out my back first & said the multiple myeloma treatment could wait. Thanks so much to responding. I'm findout out how difficult this disease is even for the Docs who deal with it each day.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: I got a shock today - delay in treatment
Hi Barbara, It's good to know that you are getting consultations from your specialists and hope you just have SMM too! However, if it is myeloma, there are good treatments available also.
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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: I got a shock today - delay in treatment
Since my doctor has delayed treatment if anyone on the Board has any results from alternative treatments I would love them sharing them with me. I have read "Outsmart your Cancer" & there are many alternative treatments in there but it's hard to know what will work for multiple myeloma so if anyone has had success with any please share. Thanks so much. If I could treat it without chemo I would be thrilled.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: I got a shock today - delay in treatment
Perhaps try curcumin supplements, as well as turmeric in your diet?
There are a number of people on the forum taking various forms of curcumin supplements, and there are some very informative threads about it.
As for other alternative types of treatments, there are multiple discussions of those as well, including one very recent one on the effects of dairy products.
You might still want to talk to your doctor about what you may be trying, supplements-wise, just to get his/her opinion, as well as to let him know.
My mom currently takes curcumin supplements, and she did this after consulting with her myeloma specialist.
There are a number of people on the forum taking various forms of curcumin supplements, and there are some very informative threads about it.
As for other alternative types of treatments, there are multiple discussions of those as well, including one very recent one on the effects of dairy products.
You might still want to talk to your doctor about what you may be trying, supplements-wise, just to get his/her opinion, as well as to let him know.
My mom currently takes curcumin supplements, and she did this after consulting with her myeloma specialist.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
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