Hello all. I am new here. was dx nov 08

karen08
karen08 Member Posts: 3
edited March 2014 in Multiple Myeloma #1
HI my name is karen i was dx nov 08 stage 1a no bone problem i am a light chain I live in South carolina..i started meds feb 09 velcade & rev & dex. did that till june 08 then they did a repeat pet/ct scan they found lung cancer small cell large cell it was only 1/4cm i had my left upper lube taken out it had not gone anywhere so i was told i am free and clear of that. if you have to get lung cancer this one is to have, Ok..
so back on chemo after 6 weeks i was off chemo for 3 months my number stay the same and some drop...i go to Duke getting ready for a stem cell transplant. i saw the dr in Nov 09 she had me stop REV. cause it can make it hard to collect stem cell. so she changed my chemo to doixl and dex i just finish my 4 round and i have doxil rash under both of my arms....and my feet get red if i do too much walking..so i will see what they will do this coming tuesday when i start back, i get velcade & dex then friday velcade dex doxil.
good new my labs came back great this time no protein in urine yes!!!!!! but kampa ligh chain at 202.. blood light kampa chain is at 1022..they have alway track my mm with my urine..
i got back up to duke march 11th... in hopes to start the transplant..
my last bmb was at 5% and that was in nov 08..
also the tested me for vit D and yes my number was 10.8. so i am on 50000ui 1 a week for 8 weeks and will retest.. when it was done last june it was nornal i think the doxil did it..
I am 52 yrs old,, and scared... i like to talk to anyone out there for support.. yes i started a support group here in columbia sc, we have about 15 of us.. we meet the 2nd sat of each month.. we all take turn finding someone to come in and talk to us . Feb 13 when we meet we have a speaker who going to talk about chemo brain,,,,she a PA works with cancer pt.. and knows alot about mm...hope to hear from anyone here my

email address bkdavies@aol.com or let me know and we can do a chat here.. i need to talk
thank you

Comments

  • Essential Oil User
    Essential Oil User Member Posts: 3
    #2
    Karen!!!!!! Thats awesome
    Karen!!!!!! Thats awesome about your support group! How are you doing? I am here because my mom has Multiple Myeloma and hoping that everyone on treatments take good care of their bodies!

    Mother is well, and was diagnosed about 10 years ago. She is about to enter Velcade door and this is after a stem cell transplant form her own stem cells.

    She is kind of pissed. Meds and side effects suck.

    I am wondering, how do you take care of your body while on meds? My mom has been doing a series of colonics and much more using a therapeutic grade essential oil. Cutting out sugar is her main objective now.

    If you wish to talk, to me or her, I can forward email addresses! I think support is important! YOU ROCK!
    Peace,
    Andrea
  • MrBobC
    MrBobC Member Posts: 17
    #3
    Great Job!
    You sound very positive and confident, which will definitely contribute to your recovery. I have a month on you thought, i was diagnosed in October 2008. I am in complete remission...praise God! Prognosis is good and I look to lots of years to be a husband, father, and grandfather.

    I cannot find a local support group for MM. I don't know that I could relate to a group that had, for example, breast cancer or liver cancer.

    One thing I've been trying to find out from others is if they are experiencing fatigue more as time goes on (I'm on a 3 year maintenance of Velcade and Revlimid.) And are others experience changes in personality (I seem to have a short fuse and speak too boldly when I talk to people sometimes.) It's not who I was and i don't like who I've become in this respect. I don't know where you find the energy to conduct the meetings but that is so great.

    Bob

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