[Rneb]

Re: Extramedullary plasmacytoma of the tonsil

by Rneb on Sat Jun 07, 2014 8:28 am

I started with an ENT and an Ophthalmologist, as well.

I had a plasmacytoma (Large) of the frontal Sinus. (Above the eyebrow) March 2012. Diagnosed table side at O.R. (54 years old) In the same Tumor family are we--upper aero-digestive Plasmacytoma's.

Surgically, it was resected with large margins and I was re-constructed (Iowa Head & Neck protocols), but due to the highly vascular micro-environment, systemic therapy was recommended.
M Spike was 0.7 g/dl at Dx. (May 2012)

Later, during full work-up, Suspected lesion on the superior pole of the Pubis Ramus noted on SPECT scan (Hip). Biopsy and MRI inconclusive.

Underwent Radiation (45 GY) (Hip and Head) , Induction (Velcade/Dex), Stem cell collection and Asphoresis, ( BUT NO STC) and am on ongoing maintenance therapy with low dose Revlimid.
Last SPEP was 0.1 g/dl. ( May 2014) (0.0 is normal).

Personally, the Systemic therapy was a bitch. Velcade was the worst. Radiation wasn't too bad.
But it has been worth it.

I needed the surgery, as the tumor was growing out of my frontal sinus, thru my front skull, into my left orbit, and inferiorly back to my brain. No Dural intrusion. So I had the surgery.
The radiation was to prevent re-recurrence, given the high likelihood of regrowth in the skull/ hip.. So, I had the radiation.

I had a total Hip replacement in Feb '14. The radiation is tough on hips.

Still, my prognosis is good to excellent, considering that we are talking about multiple myeloma. There are drugs to keep my Proteins in check, so I am treating this as a chronic disease, now. Back to work--80 % of "Normal" and in pretty good health. Single parent, with college age kids, one Special Needs. Self-employed.

I am fortunate to have a : t (11-14) FISH carotype of Multiple myeloma. ( Treatable, low-risk, etc)

Sounds like you might be a "Non-secreter". (SPEP) I missed your carotyping of your tumor--what is it ? Is it Hi/low risk ?

Your mileage may obviously vary--but I am happy I made the choices, I have made.
Please note that I have Stem cells on "Ice", should a stem cell procedure be indicated. So far, I have avoided that procedure, opting instead for the control that newer meds provide.

I was worked up by good MD's and Surgeons at UNMC /Omaha area MD's. My surgeon said I was the 3rd case presentation that he had resected in the 2 prior years.
Rare, but not unheard of.
Lots of inhaled pesticides in the Mid-west.

Personally, I say if you are going to play for a longer life, do the Systemic therapy, along with Surgery.

I think time will show (along with the advent of new drugs) that intensive therapies like Twin STC's etc are no longer standard of care treatments. I'd avoid places like UAMS, etc--regardless of their "Stats".

Good luck.