[deb1]

Re: multiple myeloma/amyloidosis

by deb1 on Mon Jan 21, 2013 3:35 pm

hi linda,
i have been thinking about you. i'm sorry you left with questions and uncertaincy. Dan seems to have quite a lot of knowledge and reference material. that should be quite helpful. my thoughts would be if you have any doubts about the proposed treatment . or you don't get answers to your questions. get another opinion from a specialist. i would think myeloma specialists, but since you have amyloid present in your heart maybe get their thoughts as well. i changed my course of treatment mid stream because the first treatment and senerio just didn't sit right with me. there seem to be many different ways myeloma is treated as there are specialists that treat it.

my only other thought is when you ask a question make sure you get an answer and appropriate response. i told my pcp i was having trouble communicating with one of my myeloma drs. he would not answer my questions. his suggestion was keep asking so you get your question answered. my questions would just be brushed away in a light hearted way. so now if i ask a question and don't get it answered. i ask again, my dr. smiles and so far my questions has been asnwered.

i hope you feel right about the next plan for your treatment. i do think my amyloid dr said if you have light chain even in normal range amyloid can still be produced. has anyone else heard this?

i remember the days of recovery from transplant. it does take quite a while. i can remember being very frustrated with that. how were your biopsy results? can they address your bone pain and help with that?

do you record your office visits? that can have so much value, to be able listen to your appointment again . it can be so hard to take in and hear every thing that is said.

my best thoughts,

deb

[lindagc]

Re: multiple myeloma/amyloidosis

by lindagc on Wed Jan 30, 2013 1:10 am

Deb,

Thanks for your reply, haven't posted anything in a while.

I started my Revlimid maintenance treatment yesterday and will have a new port a cath placed later this month for zometa and any other possibilities. My previous port a cath was removed prior to the sct. Trying to be very positive and am encouraged by so many great responses to therapy that I have heard from other people.

I do have one other question for you, when did they diagnose you with Amyloidosis? Did they discover it at the same time as your myeloma?

Linda

[debb]

Re: multiple myeloma/amyloidosis

by debb on Thu Jan 31, 2013 5:30 pm

hi linda,

actually the amylodosis helped me get into the multiple myeloma world. my eyelids would bruise badly with light, light pressure. sometimes referred to as raccoon eyes an amyloid symptom. i went to my pcp he totally sent me in the wrong direction. it was a surgeon that started me on the path. i brought photos of my eyes when i saw him. he recognised it sort of, he thought is was more associated with multiple myeloma.

he wrote to my pcp and the labs and 24 hour urine started. then on to oncologist and multiple myeloma drs. my multiple myeloma diagnosis was dec 09. my amyloid feb. 11