[greetjeParticipant]

Hi, I have had smoldering MM for 14 years (diagnosed in 2002 at the age of 37). Up to now, I did not need treatment for the SMM. Lately, I started to have a lot of swollen lymph nodes. Removal and biopsy of some lymph nodes show that there are a lot of monoclonal plasma cells in the lymph nodes. Moreover, tests also revealed amyloidosis in the lymph nodes. According to my MM doctor, I have disease progression but in a very unusual way. It is very rare that MM shows up in the lymph nodes. Also the presence of amyloidosis in that location is rather exceptional. According to my doctor, I will probably need treatment now (chemo and ASCT). We are waiting for the results of more tests before deciding on the treatment plan. My question to you is if you heard of this unusual presentation of our disease in the lymph nodes? Anyone else with this disease pattern? Any thoughts? Thanks!! Greetje

[millie12Participant]

Hi,

I have not been on for a while, so just read your post.  I too have MM and amyloidosis.  I had amyloidosis in the lymph node and that was removed I then went on to have further tests and it was then discovered I had myeloma.  I have had 5 cycles of VDT and have one more to go.  I am also on the waiting list for a SCT.  I had 5 years of feeling that something was wrong my amyloidosis presented itself in a strange way.  I thought initially I had a food allergy as it affected my tongue, my eyes and skin also became sensative.  I then started to feel less energetic and bruised very easily.  I went from consultant to consultant until I finally had an answer.  It is hard to get your head around and it is something I am still struggling with myself.  But that is how my illness appeared.  I hope this helps.  Good luck with the tests.

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