In the meantime, my multiple myeloma specialist confirmed the result of the lymph node biopsies. They are indeed infiltrated with a lot of multiple myeloma plasma cells and there are also amyloïd deposits in the lymph nodes.
My doctor told me indeed that this is a very rare presentation of multiple myeloma and that treatment will be necessary. I asked them if the classic multiple myeloma treatments (in younger patients autologous transplantation) would be effective, as this is a rather rare presentation of multiple myeloma. My doctor answered that my question was justified and that he first needed to consult with his colleagues before he could explain me the treatment plan.
We are now 3 weeks further (since the appointment where I presented with the swollen lymph nodes) and I still haven't received a "plan of attack" – a treatment plan. My doctor says he still wants to wait for the results of the PET-scan, planned at the end of this week, and then we will discuss the treatment.
This is taking so long! Aren't we loosing some precious time here? Any thoughts?
Thank you!
Forums
Re: Multiple myeloma in lymph nodes?
Catharina,
So, you have a diagnosis of extramedullary disease (EMD) AND amyloidosis? Based on this article, it seems fairly rare for an EMD patients to have the disease present in one's lymph nodes, let alone have a concurrent diagnosis of amyloidosis.
https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/
Regarding your specialist taking a long time to come up with a treatment plan, I personally would be encouraged that he/she is being careful in coming up with a plan of attack and wanting to first have all possible test results in hand, given the very unique nature of your dual diagnosis. But that's just my two cents.
So, you have a diagnosis of extramedullary disease (EMD) AND amyloidosis? Based on this article, it seems fairly rare for an EMD patients to have the disease present in one's lymph nodes, let alone have a concurrent diagnosis of amyloidosis.
https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/
Regarding your specialist taking a long time to come up with a treatment plan, I personally would be encouraged that he/she is being careful in coming up with a plan of attack and wanting to first have all possible test results in hand, given the very unique nature of your dual diagnosis. But that's just my two cents.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Multiple myeloma in lymph nodes?
Dear Multibilly,
Thank you very much for your reply and the additional information! I do appreciate. Although very rare, extramedullary disease does happen in the lymph nodes according to the info.
Useful to read that according to the few studies / observations done, we rather need to think about the novel agents to treat my disease, rather than older medicines like thalidomide. This might be a challenge in my country Belgium, as those novel agents are not all approved / reimbursed yet.
Indeed, what you say about my doctor taking so much time before presenting a "plan of attack" is right. In fact, he told me on the phone that he needed to consult with other multiple myeloma specialists and with a multidisciplinary team before deciding on the treatment.
I will post an update as soon as I will have more info! Thanks again!
Catharina
Thank you very much for your reply and the additional information! I do appreciate. Although very rare, extramedullary disease does happen in the lymph nodes according to the info.
Useful to read that according to the few studies / observations done, we rather need to think about the novel agents to treat my disease, rather than older medicines like thalidomide. This might be a challenge in my country Belgium, as those novel agents are not all approved / reimbursed yet.
Indeed, what you say about my doctor taking so much time before presenting a "plan of attack" is right. In fact, he told me on the phone that he needed to consult with other multiple myeloma specialists and with a multidisciplinary team before deciding on the treatment.
I will post an update as soon as I will have more info! Thanks again!
Catharina
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