I am wondering if anyone else has had the experience of new skull lesions while their lab results look pretty good. I've had one cycle of cytoxan, Velcade and Dex and 5 cycles of RVD. Last week I noticed 2 new skull bumps. Before treatment I had 3 or 4 and they went away after a couple of cycles of chemo. Now I'm preparing for mobilization and my numbers seem good but I don't know why I would have new bumps. My 24 hour urine collection (IPEP and UPEP) said "no M-spike detected". My Kappa/Lambda ratio is at 3.226 compared with the start number which was over 3,000! My total protein is at 6.9 and my IGG is 1280.
When I saw the myeloma specialist at Dana Farber, he didn't really have answers for me. He said that the cytoxan I'll get at mobilization would maybe take them down. He hadn't had time to examine my skeletal survey and all my lab numbers weren't in yet. I'm thinking this may mean that my myeloma is particularly aggressive. The doctor after that conversation mentioned that I might want to consider an allo in the future. He also said, "We are transplanters here, that's what we believe in and that's what we do. Go to a barber and you'll get a haircut."
I'm pretty scared about the transplant but I'm wavering whether these new bumps are telling me that the SCT is needed now more than ever, or just a procedure that will bring me a lot of negative side effects and not buy me much time.
Any feedback is appreciated.
Thanks.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: New skull lesions
Very sorry to hear about your worries, Joy. I'm also rather surprised about what your doctor at Dana-Farber told you. I didn't realize the doctors there consider themselves "transplanters." Do you think what you were told is the opinion of all doctors there, or just the specific doctor you met with?
You mentioned that you have new skull lesions, but your lab results aren't showing any new signs of disease.
Were these new lesions confirmed by x-rays?
Also, has there been any change in the calcium levels in your blood that might indicate that you are experiencing new bone loss?
You mentioned that you have new skull lesions, but your lab results aren't showing any new signs of disease.
Were these new lesions confirmed by x-rays?
Also, has there been any change in the calcium levels in your blood that might indicate that you are experiencing new bone loss?
Re: New skull lesions
Hi Terry,
I didn't even think about the calcium. I just checked and it looks to be stable and within normal range. I have the report from the skeletal survey but not the images and so I'm not sure what is different on an x-ray. The report mentions multiple skull lesions and that one is very large (2.7 by 1.9 cm) but it doesn't indicate where. But, I've had this problem (multiple lesions) since diagnosis, so I'm not sure how these are different. The report indicates that my ribs and other places are showing signs of healing but doesn't compare my skull to any previous images.
I believe that the general protocol at Farber is to transplant, but they don't force it on you. I haven't met with other myeloma doctors there so I don't know that for sure.
Thanks for your response.
My husband wonders if my blood numbers reflect an overall systemic average but the new skull bumps are isolated hot spots of myeloma. I wonder if that's possible.
I didn't even think about the calcium. I just checked and it looks to be stable and within normal range. I have the report from the skeletal survey but not the images and so I'm not sure what is different on an x-ray. The report mentions multiple skull lesions and that one is very large (2.7 by 1.9 cm) but it doesn't indicate where. But, I've had this problem (multiple lesions) since diagnosis, so I'm not sure how these are different. The report indicates that my ribs and other places are showing signs of healing but doesn't compare my skull to any previous images.
I believe that the general protocol at Farber is to transplant, but they don't force it on you. I haven't met with other myeloma doctors there so I don't know that for sure.
Thanks for your response.
My husband wonders if my blood numbers reflect an overall systemic average but the new skull bumps are isolated hot spots of myeloma. I wonder if that's possible.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: New skull lesions
Hello,
Did you have biophosphonates such as Aredia or Zometa? And yes, you can still have bone lesions even if the disease under control--that's what my Doctor told us. That's why we have IV Zometa every 2 months.
Did you have biophosphonates such as Aredia or Zometa? And yes, you can still have bone lesions even if the disease under control--that's what my Doctor told us. That's why we have IV Zometa every 2 months.
Re: New skull lesions
Well that's really upsetting that you can get lesions even if you are in cr, my dr never told mevthat
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Maria
Re: New skull lesions
Sometimes the disease is progressing slowly even if it's under control. Dad was in remission for two years but continued having Zometa every 2-3 months. I also do not understand what would happen if one is in CR state. His kappa FLC was 40ish (normal, upper cap is 20), but he still got Zometa a day before his ASCT.
Best of luck for us.
Best of luck for us.
Re: New skull lesions
Thanks everyone for responding!
Yes, I've been on Zometa since my diagnosis and have had the infusion every month.
Yes, I've been on Zometa since my diagnosis and have had the infusion every month.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: New skull lesions
This is a good question and certainly something that needs to be discussed with your doctor.
There is a chance of progression of disease in bone despite lack of change in the protein electrophoresis or light chain tests. The x-rays should be compared closely for new versus old lesions.
Ideally, the disease is not progressing at the time of transplant although it would not be wrong to proceed especially using chemotherapy as stem cell priming.
There is a chance of progression of disease in bone despite lack of change in the protein electrophoresis or light chain tests. The x-rays should be compared closely for new versus old lesions.
Ideally, the disease is not progressing at the time of transplant although it would not be wrong to proceed especially using chemotherapy as stem cell priming.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: New skull lesions
Thanks for responding Dr. Valent. The transplant is scheduled to move forward and I believe that if the chemo doesn't take care of the bumps, radiation will be considered. At least that was mentioned as a possibility. But I have not yet been informed as to how different the images look so it's still a guessing game I suppose (for now).
Your response makes sense to me. I'm doing well overall but have some potential "hot spots" is how I've interpreted that. What a strange disease. It seems like nothing is for certain when dealing with it.
Your response makes sense to me. I'm doing well overall but have some potential "hot spots" is how I've interpreted that. What a strange disease. It seems like nothing is for certain when dealing with it.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
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