[greetjeParticipant]

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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

[dakota377Participant]

hi, my dad was diagnosed in October with MM, kidneys fine with a few skeleton leisons, he started chemo and had great results, he went into remissions in February everything was going fine and he was feeling really good till he started to getting these stomach pains and the gland in his neck was swollen, a scan on his stomach showed a mass and they first thought it was lymphoma but it has come back as his MM becoming active, just like you they’ve told my dad they’ve never seen this before in myeloma patients and are quite confused as to why there in his lymph nodes, I’m just wantimg to know have you found out anything new since February , so I can pass this on, I’m desperate to find something something to help my dad many thanks xx

[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

[beetlejuice54321Participant]

Hi greetje

i was diagnosed with a large plasmacytoma in about a dozen lymph nodes in my collar bone area and in my chest in 2013 (I was aged 33 at the time of diagnosis).

I was was treated with two cycles of DT-PACE, followed by a stem cell transplant. That got rid of 90% of the mass. I was then put on velcade, thalidomide ad dexomethosone and have been on it ever since. I also received radiotherapy on all of the lymph nodes. I am about to start cycle 25 but reached remission just over 2 years ago. Just letting you know there are options available for this very rare presentation of myeloma.

good luck with your treatment.

• This reply was modified 7 years, 10 months ago by  beetlejuice54321.

[g4zz41983Participant]

Hi beetlejuice54321 glad you are doing well. My wife (age 32) was diagnosed back in October last year she was stage 3 and she is high risk she is also on VTD CYCLE how have you found the VTD CYCLE ? it has knocked my wife off her feet and she is going for a autologous stem cell transplant in February at some point how did you find the auto ?. What stage was you at and are you high risk? Hope you all the best in your myeloma journey.

[beetlejuice54321Participant]

Hi g4zz41983

when I was diagnosed back in June 2013 the doctors weren’t sure exactly what I had as the myeloma was in all my lymph nodes but barely in the bone marrow. A very rare presentation. I wasn’t given a staging for the disease but I was told if the stem cell transplant didn’t go well then I wouldn’t last long due to the nature of the plasmacytoma. Thankfully it did go well. The transplant itself is undoubtedly the hardest thing I’ve ever done and it made me feel terrible for the first two weeks (constant sickness, swollen throat) but after those two weeks had passed I began to feel better and better and was close to being back to normal (minus hair) at 6 weeks post transplant. It is do able and some people sail through it ok. Do not approach with fear as lots of us have done it and it is doable and once the first couple of weeks are over your wife will hopefully be ok. As she’s young (like I was) her body should recover more quickly. But be very careful and wary of infections. Your wife will need to wrapped up in cotton wool and avoid people with any sort of cold. I was very careful for period directly after transplant.

i have been on VD now for over 3 years and find it okay. I suffer a bit of fatigue around the time I have it but I only have it every fortnight now so most of the time I’m okay. The thalidomide got stopped because it caused problems. I have been fortunate in that the velcade hasn’t really affected me too much, some people suffer from nerve damage in their arms and legs. I get the occasional twinge but generally I’m fine. The dexomethosone does in my mind cause the fatigue and if you’re on VTD weekly it can be hard work feeling rough half the time.

Hopefully the treatment works for your wife and she gets through to remission. Then the doctors will reduce the doses and things will get easier.

 

good luck.

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