[lindagc]

Hi, my name is Linda

by lindagc on Fri Jan 04, 2013 9:44 pm

I am a 59 year old female initially diagnosed with amyloidosis in March 2012 and further evaluations revealed that I also had multiple myeloma.

I had been having symptoms for a few months that did not seem to point directly at anything with my PCP. Think I am going to get a new one. In either event, I was having trouble with swelling in my tongue, joint pain and unexplained weight loss, along with some gastric problems that were attributed to acid reflux. I finally insisted on being referred to an ENT specialist and the minute she saw me she knew something was not right, by then the salivary glands in my neck were swollen. A biopsy performed, showed evidence of amyloidosis. The referral process then began for a hematologist/oncologist, who did a bone marrow biopsy that revealed the multiple myeloma.

My treatment began in April with 5 series of Velcade/dexamethasone/Revlimid, followed by a SCT performed in September. At that point, the amyloidosis had invaded my digestive track (to include
throat, tongue, esophagus, and colon) and the right ventricle of my heart.

My hundred day mark was reached on December 27, and next week I go in for the post transplant evaluation to determine how effective the transplant was. I have had a few ups and downs, to be expected, after the transplant, which included a one week stay in the hospital after being diagnosed with a case of pneumonia.

Made it home in time for the holidays and looking forward to a better, healthier year.

Linda

[Ron Harvot]

Re: Hi, my name is Linda

by Ron Harvot on Sat Jan 05, 2013 1:16 am

Linda,

Thats quite a story. I hope the SCT worked. When you originally received the RVD induction what were the results? Usually if RVD is going to work the results are almost immediate. You may be placed on RD as a maintenance treatment if the SCT was successful.

Good Luck!

Ron

[lindagc]

Re: Hi, my name is Linda

by lindagc on Sun Jan 06, 2013 7:51 am

Hello, Ron. The induction therapy I initially received worked well enough to put the the myeloma into a remission state so that my stem cells could be harvested and used in my sct.

Apparently the biggest hurdle will be conquering the Amyloidosis. The doctor has already discussed possible maintenance treatments to include Revlimid, dexamethasone, Velcade and zometa in some combination. The plan will be formulated after the results of my sct which should be in a week or two. Getting anxious.

Wonder if there is anyone else out there who has a combination of myeloma/amyloidosis? Willl post this question separately to look for replies.

Hope you continue doing well.