[hisierra1]

Newly diagnosed at 55 years old

by hisierra1 on Wed Oct 17, 2012 10:20 pm

I am newly diagnosed in april of this year. I have had tender feeling skin in my rib area for 5 years and tender to touch in my back area for 10 years. One day i turned and a vertebrae fractured at T-11 and T-12, with a minor fracture at L-3. Biopsy reveiled multiple myeloma. Could have i had this for 10-15 years? Longer? I have been on 10mg of Revlimid and 40mg of dex for 5-6 months. kappa LT Free started out at 4000, and is down to 219. I have decided not to go with the bone marrow and radiation. The doctor was really gun-ho with the big dose of radiation.
I don't think i'm healthy enough, and really having alot of back problems after the Kyphoplasty,bones are paper thin, and side effects of the chemo drugs, and zometa.
Anyone else just doing maintenance? Low dose or just stop after kappa is low? Thanks
Last blood test:
RBC 3.96 HGB12.5
Kappa 219 from 4000

[Lisa_G]

Re: Newly diagnosed at 55 years old

by Lisa_G on Thu Oct 18, 2012 9:37 am

Hi hisierra1,

I, too, was diagnosed with multiple myeloma at the age of 55 (Actually, one month before I turned 55). I suffered a compression fracture in December 2010 of my T10. Initially, I was diagnosed with MGUS in February of 2000, so I went 10+ years before the MGUS progressed to multiple myeloma.

My first course of treatment after the compression fracture and multiple myeloma diagnosis was radiation treatments to shrink the plasmacytoma. These treatments greatly aleviated my pain. Following the radiation treatements, I had six cycles of Velcade, Revlimid (25 mg.), and Dexamethesone (started at 40/1x/week and then went to 20/1x/week). I completed my six cycles of VRD in August 2011 and followed that with my induction therapy and subsequent Auto Stem Cell Transplant in November 2011. I was finally able to have my kyphoplasty procedure for my fracture in February of this year. It hasn't been easy, but I'm feeling pretty good right now. Because I didn't have a complete response from my SCT (I'm 97% to 98% there, though), I am now taking 10mg. Revlimid as a maintenance therapy, which I started in May of this year. My doctor wants me on it for at least a year, but it could be as long as three years. This is standard protocol. Oh, and I also had been receiving monthly infusions of Zometa and have just gone to every three months for this treatment. I had started the Zometa in May 2011.

My treatments were considered standard protocol. The doctor's in charge of my care were chosen as a result of looking for a second opinion. My spine surgeon specialized in tumor's of the spine and he referred me to my oncologist who is the assistant director of the BMT cancer unit at a large hospital in Boston, MA. I was given options / choices, so I fully understood what I was in for. I wouldn't have wished this on anyone. I think I was pretty much in shock/denial the whole time I was in treatment, but I pushed through it and fully believe it has prolonged my life.

I'm sorry that you have gone through so much. It can be a confusing and painful time. Hopefully you will get more responses so that you have more information to absorb. Try and do some more research, so that you can be fully informed to have choices to decide what should be your best course of action. As long as you trust your doctor/doctors, you should feel confident that the choices made are the right ones for you. Good luck with your journey.