Hello All! New to this...anyone here diagnosed with plasmacytoma ?

Posted by tpenezic @tpenezic, Jan 6 1:08pm

hello all. This is my first interaction with this blog (seems very educational and motivational/encouraging.
Is there anyone here engaged in conversation diagnosed with solitary plasmacytoma.
Would like to hear other folks' experiences.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I was this past year, though a recent PET/CT showed diminished activity (didn't light up and shows the areas to be reduced in size), so now they are wondering if it may be something else, like an inflammatory reaction of some type. Since I am asymptomatic, we are just waiting and doing another PET/CT later this month (actually next week) along with more lab work. Biopsy of one of them did come back positive for the plasmacytoma, so things are weird somewhere. Feel like I am in limbo, lol. Maybe I will know more soon, but for now I am just along the lines of "wait and watch", I guess.
Yeah, lots of good info here about MM in general, though not much I have noticed with solitary plasmacytoma. Or I haven't found it, at least.

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Profile picture for aoifet @aoifet

I was this past year, though a recent PET/CT showed diminished activity (didn't light up and shows the areas to be reduced in size), so now they are wondering if it may be something else, like an inflammatory reaction of some type. Since I am asymptomatic, we are just waiting and doing another PET/CT later this month (actually next week) along with more lab work. Biopsy of one of them did come back positive for the plasmacytoma, so things are weird somewhere. Feel like I am in limbo, lol. Maybe I will know more soon, but for now I am just along the lines of "wait and watch", I guess.
Yeah, lots of good info here about MM in general, though not much I have noticed with solitary plasmacytoma. Or I haven't found it, at least.

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@aoifet Thank you for checking in. Very much appreciated. Your input certainly helps, and it does provide hopes and encouragement.
I was diagnosed with solitary plasmacytoma last April. After having very complexed spine surgery (L3 completely 'disintegrated' by the presence of tumor) where the samples of tumor were sent to lab and following the bone marrow biopsy, the results came back positive.
Did 25 of the radiation treatments last summer...no chemo necessary.
However, after last two PET/CTs (doing it every three months) and the recent lab tests, the 'picture' looked good. Per oncologist's statement, the first 18 months are crucial. The survival rate 50/50... needless to say, moving forward with the positive mindset (and the help of meds against anxiety lol) to beat the odds!!
Yes, I did a good amount of research (which, need to admit, didn't seem encouraging) and figure out that plasmacytoma IS very rare form of cancer...
Hope your tests will show it was "just" some form of inflammatory reaction (that's how my latest PET/CT images looked like, per radiologist's findings), which I'd read, that happens too.

Stay in touch 🙂
best.

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Welcome to Mayo Connect, @tpenezic. Goodness, you’ve been going through a rough patch lately! The latest results of your PET/CT sound encouraging so hopefully 2026 is your year to put all of this in the rear view mirror!

We do have other members in the forum who have been diagnosed with solitary plasmacytoma, which is a rare type of cancer involving plasma cells (B-cells), that for unknown reasons turn into abnormal cells. These can multiply and become single tumors in the body.
With a quick search I found a number of discussions for you. Please feel free to pop into any of the conversations. I think both you and @aoifet may find more members with the similar diagnosis. It helps to not feel so alone when dealing with a rare condition.

Here are the results for Plasmacytoma:
https://connect.mayoclinic.org/search/
Wishing you continued good health! Are you currently having to take any medications or experiencing a change in life style?

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Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Mayo Connect, @tpenezic. Goodness, you’ve been going through a rough patch lately! The latest results of your PET/CT sound encouraging so hopefully 2026 is your year to put all of this in the rear view mirror!

We do have other members in the forum who have been diagnosed with solitary plasmacytoma, which is a rare type of cancer involving plasma cells (B-cells), that for unknown reasons turn into abnormal cells. These can multiply and become single tumors in the body.
With a quick search I found a number of discussions for you. Please feel free to pop into any of the conversations. I think both you and @aoifet may find more members with the similar diagnosis. It helps to not feel so alone when dealing with a rare condition.

Here are the results for Plasmacytoma:
https://connect.mayoclinic.org/search/
Wishing you continued good health! Are you currently having to take any medications or experiencing a change in life style?

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Thanks, there are more than I thought, and many others with that same or similar diagnosis.

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Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Mayo Connect, @tpenezic. Goodness, you’ve been going through a rough patch lately! The latest results of your PET/CT sound encouraging so hopefully 2026 is your year to put all of this in the rear view mirror!

We do have other members in the forum who have been diagnosed with solitary plasmacytoma, which is a rare type of cancer involving plasma cells (B-cells), that for unknown reasons turn into abnormal cells. These can multiply and become single tumors in the body.
With a quick search I found a number of discussions for you. Please feel free to pop into any of the conversations. I think both you and @aoifet may find more members with the similar diagnosis. It helps to not feel so alone when dealing with a rare condition.

Here are the results for Plasmacytoma:
https://connect.mayoclinic.org/search/
Wishing you continued good health! Are you currently having to take any medications or experiencing a change in life style?

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Thank you so very much for your note @loribmt . It is heartwarming to learn that there are other members in the forum that have same diagnosis (UNFORTUNATELY!) ...and yes, it surely means a lot for each diagnosed person, not to feel alone during this very difficult time in someone's life.

...again, thank you very much.
-to answer your question though, yes, I am taking meds for spine pain/'stiffness' management as well as muscle relaxers. (the number of meds is however way lower than it was a few months ago so I am doing better in that sense)
Also taking meds for anxiety/depression management. ...and yes, my life turned upside-down immensely. Had very dynamic job for many years, worked out regularly, spent many hours outdoors...generally had very active life.
As you can imagine, I am in the process of making many adjustments, basically taking 'one day at the time' and hoping for better days ahead.
Being a part of this community will surely make some positive impact on my mental stage.

Thank you.
best regards.

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