[stevewinn]

Another Newbie

by stevewinn on Thu May 24, 2012 4:53 pm

Hello everyone. I first presented with large mass in my neck in July 2011. Since then, the only real diagnosis has been Extramedullary Plasmacytoma. Many appointments and tests. First it was Lymphoma, then it was Leukemia, then EP, and as of last week its multiple myeloma. I have enlarged spleen, 7mm nodules in both lungs, more than 5 masses in my neck, and right side of thyroid is affected as well. PET last week showed it was also in my nasal passages. I was scheduled for Neck Dissection to remove the masses in my neck and they postponed it to get PET, bone marrow test, more extensive labs and a bone survey. Now I'm having surgery on May 25th, 2012 to remove masses and explore some others in my neck. Will most likely take thyroid out as well. HEMOC said chemo may start on June 15th pending results from bone marrow and what they find in surgery. I recall this much from the labs, LDH was 1300, WBC high and well I was already anemic before all of this. I have been told this is rather rare at my age (41) so that's why diagnosis has been so challenging. I'll let everyone know how this progresses after surgery tomorrow and then beginning Chemo in a couple weeks. Best of everything to everyone.

Steve

[Art]

Re: Another Newbie

by Art on Thu May 24, 2012 9:22 pm

Stevewinn
Good Luck Brother. Hang in there and keep us posted.
Best Wishes
Art

[Dr. Ken Shain]

Re: Another Newbie

by Dr. Ken Shain on Fri May 25, 2012 8:55 am

Good luck. Please keep us updated. Please ask your heme/onc to determine if the reason your white count was high was because of circulating plasma cells- it could just be increased neutrophils in a reactive process. If your peripheral blood plasma cell percentage (of total WBCs) is greater than 20% the disease will be considered plasma cell leukemia. Your "apparent" presentation with mutliple extramedullary plasmacytomas is a more aggressive variant of myeloma. But make sure that this is not a different cancer with the additional biopsies.

Again, please keep us updated and we wish you the best luck.