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Re: Stage I Multiple Myeloma - What a shock!

by Cindy Lee on Tue Nov 05, 2013 7:04 pm

Thank you so much everyone. Excellent information and advice!

My oncologist is not a specialist in myeloma. There is an oncologist at Indiana University Cancer Center who specializes in myeloma. I am considering switching doctors and think the time to do it is in the early stages of this disease.

One thing that really turned me off about my oncologist was in the very beginning. They found the plasmacytoma in the scapula and were just starting to do all the other tests necessary - skeletal survey, 24 hour urine tests and bone marrow biopsy. I did my research about what a 24 hour urine test is supposed to tell them and read all about the Bence Jones protein prior to the appointment for the biopsy.

So..going in for the BMB, I brought my significant other. The doctor walked into the room, seemed surprised I had brought along support, and I said I had some questions. (I wanted to know what the urine test revealed and if Bence Jones was present). Not a lengthy discussion, just a couple of questions.

He said "I can either sit here and answer your questions or do the bone marrow biopsy, but I don't have time for both. If you want to talk, we will have to put the biopsy off for another time."

Wow! Talk about a put off!! I asked the question quickly and then said "proceed with the biopsy." I definitely think I would be better off with a specialist in myeloma and you all have reinforced my belief that that is what I need to do. :D

Cindy Lee
Name: Cindy Lee
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 2013
Age at diagnosis: 64

Re: Stage I Multiple Myeloma - What a shock!

by mmcure on Fri Nov 08, 2013 7:07 pm

Hi Nell,
Sorry to hear about your diagnosis.

My mother was 66 at diagnosis and got VD + SCT(autologous stem cell transplant) and is into complete remission now.
However if we could pick different initial therapy now it would be a combination of VD + something else. Revlimid maybe added.

Why something should be added to VD? Let the study answer:
Why Proteasome Inhibitors Cannot ERADicate Multiple Myeloma?
http://www.sciencedirect.com/science/article/pii/S1535610813003607
http://www.sciencedirect.com/science/article/pii/S1535610813003565

Moderator's Note: A press release with information about the study mentioned above can be found here in the Beacon's list of myeloma-related press releases.

mmcure
Who do you know with myeloma?: Mother

Re: Stage I Multiple Myeloma - What a shock!

by Marie64 on Sat Nov 09, 2013 7:27 pm

Hi Cindy. I am so sorry to hear about your diagnosis. My husband sees Dr. Savvanasankah at IU Simon Cancer Center. She works very closely with Dr. Abanaur. I am sure that I didn't spell either of their names correctly. We love love love Dr. S. She spends time explaining things and never acts like you are imposing on her time. I highly recommend the program there. I might also add that my husband sees Dr. Sgroi at IU Central Indiana Cancer Center. She works very closely with Dr. Savvanasankah.

Praying with you for a cure!

Marie64
Name: Marie
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 2010
Age at diagnosis: 45

Re: Stage I Multiple Myeloma - What a shock!

by Cindy Lee on Sun Nov 10, 2013 6:48 pm

Thank you Marie. I will definitely check into it. I really do think I would be better off with someone who specializes in myeloma and am so happy to have your recommendation.

Take care!

Cindy Lee
Name: Cindy Lee
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 2013
Age at diagnosis: 64

Re: Stage I Multiple Myeloma - What a shock!

by bluemountain on Tue Nov 26, 2013 5:15 pm

Wow...your Doctor sounds like a jerk...if he does not have time to talk...get a new DR. and get a Myeloma specialist. I also had One singular Plasmacytoma that was easily removed (but was bad enough I had to have a lot of reconstructive work on my spine) and my cell count was 20% and...my Myeloma specialist from Duke immediately put me in treatment. I have had radiation, chemo and a Stem Cell. My back still bothers me but I have no cancer symptoms and as well as they can tell (I'm non-secratory) I'm in a pretty full remission (or at least my PET in September was clean...going in for MRD testing in January). I am pretty shocked they decided to wait and watch with anyone that has full blown Myeloma. My Dr said that she treats anyone over 10% cell involvement and I think that is pretty much the standard!

bluemountain

Re: Stage I Multiple Myeloma - What a shock!

by Julie Ann Phillips on Tue Nov 26, 2013 9:17 pm

I am a patient of Dr. Abonour at IU Simon Cancer Center and I "love" him. He really takes time to listen to ALL of my questions and concerns. I was diagnosed Feb. '13. I did a round of Velcade (didn't work) and two rounds of Revlimid (didn't work) then a stem cell transplant in July '13 and it WORKED. I am now in remission with no maintenance. I plan on going back to work in Jan. I am still fatigued but getting better every day. I just turned 50 on Nov. 21 and it was the best birthday yet.

Julie Ann Phillips

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