[greetjeParticipant]

Hello Dakota377,

Sorry for my late reply, I only find your message now. As my MM specialist considered the situation with the lymph nodes as a disease progression (although in a very unusual way), he advised to go for an autologous Stem Cell transplantation. I had 6 months induction therapy, followed by high dose chemo and the ASCT. Initially, the lymph nodes decreased in size after 2 months of induction therapy (VRD) but then they grew again. So my doctor switched therapy and replaced Revlimid by Caelyx for the remainder of the induction therapy. After the ASCT, the lymph nodes were remarkably smaller, but now I am 5 months post transplant and they start to increase again. Next week, a new biopsy of the lymph nodes is planned. Possibly, we will opt for radiation therapy. To be continued…How is your dad doing in the meantime? What treatment did he get? I look forward hearing from you! Thanks Xxx

[greetjeParticipant]

Hello ksee86, I only find your message now as I was looking for more information about myeloma showing up in the lymph nodes!

I have a similar story. I have had smoldering MM for 14 years but recently, a lot of lymph nodes started to swell. Some lymph nodes were removed for biopsy and the result showed that there were a lot of myeloma plasma cells and amyloidosis in the lymph nodes. I am still waiting for furter tests before we decide on a treatment plan. My doctor also confirms it is extremely rare to see this presentation of MM!

How is your husband doing in the meantime? Has he been treated with chemotherapy? I would love to hear from you.

I wish your husband and yourself all the best!

Greetje

• This reply was modified 8 years, 3 months ago by  greetje.

[greetjeParticipant]

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Dear Millie, sorry to hear about your recent diagnosis. I wish you that your treatment brings you quickly in a disease stable situation. After treatment, many patients stay stable for years with a good quality of life. I was curious about your initial disease symptoms. Apparently, it started with the lymph nodes? Did you have swollen lymph nodes? And did a biopsy reveal the presence of AL amyloidosis which led to further testing for MM? I have had smoldering MM for 14 years (no symptoms). Last month, I started to have a lot of swollen lymph nodes and a biopsy showed the presence of myeloma cells and amyloidosis in the lymph nodes. According to my MM specialist, this is a very rare presentation of the disease. Very few cases are known where myeloma cells and amyloidosis show up in the lymph nodes. What did you MM doctor say about this presentation? I would be interested to learn more about your situation! Because of this presentation in the lymph nodes, I will probably also start treatment soon (chemo and ASCT). So, we will be in this together! I wish you all the best! Greetje

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