solitary plasmacytoma did not respond to radiation. Anyone else with this out there?

[darst]

I was diagnosed with a solitary plasmacytoma and had radiation but it had no affect on the plasmacytoma. I feel all alone in this. I do not know anyone anywhere with the same predicament. I hope there is someone out there who can tell me how their Dr. is addressing the problem.

[Tall_Allen]

Did you have this AND prostate cancer?

[darst in reply to Tall_Allen]

No. I just have a plasmacytoma. My husband has stage 4 rectal cancer with mets to the liver. Is this a site for prostate cancer?

[Tall_Allen in reply to darst]

Yes. You may be able to find a myeloma forum somewhere.

[pjoshea13]

Hi Darst,

My wife had a solitary plasmacytoma in 2014, which was treated with radiation, so I know more that I ever wanted to know about the subject.

It so happens that my younger sister in England has multiple myeloma & had been in a local support group for 6-7 years. She had never met anyone with a solitary plasmacytoma [SP] & thought Susan was lucky. As you probably know, SPs are rare & treatment by radiation can be the end of it.

You say "it had no affect on the plasmacytoma". Do you mean that there is abnormal protein, or is the lesion expanding?

In my wife's case, there was no abnormal protein. When she had a 6-month follow-up scan, a second SP was found.

Unfortunately, her oncologist of the time is of the "to hell with the patient - let's throw everything at it" school. He rejected radiation. In fact, he invented other SPs to justify that. She was put on Velcade & an appointment was made at Wake Forest for stem cell replacement. At the consultation, the team told her she had to be crazy. All she had was another SP. She didn't need such aggressive treatment

At the end of the Velcade course, we had the luxury of time to look for an oncologist with an approach that was more sympathetic to the patient.

At the next checkup, there was nothing on the scans, but there was a worrying increase in some of the proteins. Her new doctor put her on Revlimid, but at a low dose. This has worked well & without the side effects of Velcade.

Our experience has been that patients with solitary plasmacytomas are treated (over-treated?) as though they have full-blown multiple myeloma [MM]. At the same time, one is told that MM always comes back, & that therapies will need to be repeated if possible. If treatments are truly only palliative, do they need to be so severe that quality of life suffers?

I would be wary of the gung-ho approach. MM oncologists don't see a lot of solitary plasmacytomas. It's easy to fall into a one-protocol-fits-all mentality

At the end of 2015, my wife had severe pain due to shingles (not uncommon in such situations). Her doctor called an ambulance to take her to ER. ER drugged her to the point where she could not be released & she spent 4 days on the cancer floor. While there, her oncologist gave her a bisphosphonate. He said that she gave permission but she was out of it because of the pain drugs.

But the bisphosphonate injections continued until she had a severe reaction & they had to be stopped.

Her new doctor suggested Xgeva (as being non-inferior) & told her that she did not need monthly shots if she preferred not to. She opted for 3-monthly.

Under this minimal protocol, her proteins are undetectable. & just as important, she enjoys life as before.

I suggest that follow-up posts be done privately & I can put you in touch with my wife if you wish.

Best, -Patrick

[darst in reply to pjoshea13]

God Bless you for answering. I know of no one else with a plasmacytoma. Mine did not go away when it was radiated but stayed the same size, uptake of sugar is the same and it is growing and a bioposy 10 months after radiation shows it is cancerous. One Dr. wants Velcade and Revilmide and the other wants to do proton therapy. I do not know which way to go. I do not know how to private message you.

[Hidden in reply to darst]

Hit the chat icon above. Don’t have the answers , only prayers that you find a solution. We all understand the fear of “C” and the emotional burden of it all. Do good things to your body.. Peace darst!