Multibilly,
I did reach out to the doctor you recommended for what would amount to a third opinion. However, I never followed up to see him.
The trouble is that my oncologist does not think highly of pursuing this, to say the least. The quandry I have is that my onc is quite good - he has put me on a treatment regimen that is reducing my FLC number dramatically.
Beyond that, I have come to the conclusion that three different myeloma experts are likely to give you three different opinions. So where does that leave you?
Still, for initial diagnosis, and treatment recommendations, I agree with the consensus on this forum - that it is imperative to consult with a myeloma specialist. I went through that, and have consensus on my current diagnosis and treatment.
Once you have gotten that kind of feedback fom a myeloma expert, I'm not sure how helpful it is to continue to consult with multiple doctors as issues come up. It might lead to as much confusion as enlightenment.
Forums
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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: Extramedullary plasmacytoma
Thank you so much for your replies,Tracy J. I actually got your reply 15 minutes before my last onc appointment, which was great.I asked about whether he thought it was non secretory and he agrees that it probably is. However with such low readings on my bone marrow biopsies and low to nil m spike ( .09) and a kl ratio of 1.35 at highest, he was still cautious about diagnosing it as non secretory.
Multibilly, he agrees that it can present itself in many levels and can be ever changing so regardless of the type of myeloma. The quandary was whether to treat the individual lesions with radiation or go for the CyBorD and stem cell.
This decision was made pretty clear once the number of lesions went from 2 to 4 within a week, worth noting that a full body MRI only picked up 2 of the lesions but the PET CT a week later detected full activity in all 4. I had also had a skeletal survey 2 months prior that showed nothing.
The plan from here is now ASCT starting 5 January with a follow-up combination of either full body MRI or PET CT twice yearly.
From what I understand is that the MRI is still an imaging process while the PET CT uses radioactive glucose injected into the patient, the cancer cells take up the glucose faster than normal cells which allows the detection of actual active cancer cells. But as you say is a much higher level of radiation due to the injection hence a maximum of 2 per year.
Thank you for all of your information, it truly is priceless.
Multibilly, he agrees that it can present itself in many levels and can be ever changing so regardless of the type of myeloma. The quandary was whether to treat the individual lesions with radiation or go for the CyBorD and stem cell.
This decision was made pretty clear once the number of lesions went from 2 to 4 within a week, worth noting that a full body MRI only picked up 2 of the lesions but the PET CT a week later detected full activity in all 4. I had also had a skeletal survey 2 months prior that showed nothing.
The plan from here is now ASCT starting 5 January with a follow-up combination of either full body MRI or PET CT twice yearly.
From what I understand is that the MRI is still an imaging process while the PET CT uses radioactive glucose injected into the patient, the cancer cells take up the glucose faster than normal cells which allows the detection of actual active cancer cells. But as you say is a much higher level of radiation due to the injection hence a maximum of 2 per year.
Thank you for all of your information, it truly is priceless.
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
12 posts
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