[aussiegirl]

One year on

by aussiegirl on Fri Nov 21, 2014 7:56 am

Well, it's been 12 months since my stage 3 diagnosis, and I am now on my third regimen - a clinical trial of elotuzumab / Revlimid / dex.

After 2 cycles, lab results are definitely moving in the right direction. I do have some side effects – especially insomnia – on treatment night, some neuropathy (taking alpha lipoic acid to combat that), and some days I sit on sofa all day, and low white blood cell count. It's definitely the most side effects I have experienced in the 12 months of treatment.

First treatment was Velcade / dex, but my doctor wasn't happy with the apparently slow results and changed me to a Kyprolis / dex clinical trial. It worked great for 6 months, then did a com­plete turnaround. I led a relative normal life on these two regimens, participating in exercise, but put on weight with both.

I just get a bit disheartened when I read about those who achieve a complete response in about 4-6 cycles. Here I am at 12 months and three regimens later, and still waiting for the good news.

In the beginning, I was diagnosed with stage 3 with 90% bone marrow involvement and I only had one lesion in my forehead. After regimen 2, I had had to go off treatment for 3 weeks before starting regimen 3 – I had lesions everywhere that developed in the quick time.

I know everyone is different. I have been on Zometa since the beginning, have not had a stem cell transplant (my specialist is Dr. Berenson), I don't have any pain now and have not experienced any bone fractures.

I am trying to remain positive, and my doctor seems happy with current results. Just thought I would give my 12-month update.

[NStewart]

Re: One year on

by NStewart on Sun Nov 23, 2014 12:07 pm

It sounds like you've had a quite a year. Sending you best wishes for a good response to your latest treatment regimen and a healthier 2nd year.

Nancy in Phila