[twinkle126]

Stopping treatment without doctor consent

by twinkle126 on Thu Mar 12, 2015 2:59 pm

Hi

I was recently diag­nosed with smolding multiple myeloma. My hema­tol­o­gist put me on treat­ment since I have high free light ratio, and had acute renal failure twice. He started me on dexa­metha­sone then thalidomide + melphalan.

With the steroids, my kidney function returned to normal, I took thalidomide for a week, but decided to stop taking it since it has a lot of side effects on me and is literally making me ill.

I'm confused and don't know what to do next. Has anyone been in this situation before?

[Boris Simkovich]

Re: Stopping treatment without doctor consent

by Boris Simkovich on Thu Mar 12, 2015 4:05 pm

Hi Twinkle,

I'm sorry to hear about the side effects you've been experiencing from the thalidomide. It can be a challenging drug for people to take in some (many?) cases.

Some people reading your posting may be confused by your statement that you were diag­nosed with smoldering myeloma, but undergoing treatment. This is because the standard approach to smoldering myeloma is not to treat it, but "watch and wait."

Thus, I wanted to point out that, based on your previous postings here in the forum (I'm thinking about this forum thread), I believe your diagnosis would be considered to be multiple myeloma, not smoldering myeloma, under the new diagnostic criteria for multiple myeloma discussed in this Beacon article by Dr. Rajkumar.

Please correct me if I'm mistaken.

I'm afraid I'm not really in a good position to answer your question about stopping treatment due to the side effects you are experiencing, but there may be others here in the forum with experience relevant to the question.

Good luck!

[Multibilly]

Re: Stopping treatment without doctor consent

by Multibilly on Thu Mar 12, 2015 4:54 pm

Hi Twinkle,

I would strongly encourage you to work with your doctor on a modified treatment plan rather than just stopping treatment on you own. Your doctor can change your dose and/or work with you on adopting a different drug regimen.

BTW, do you mind me asking which country you live in? Knowing this information might help folks better answer your question.