UPDATE:Glad I didn't wait for Lemtrada/Campath/Alemtuzumab

An earlier blog post, Follow the MS Money, explained my reasons for ignoring a neurologist's recommendation to not do HSCT and instead await hoped-for FDA approval of the drug alemtuzumab (Campath/Lemtrada) for treatment of MS sometime in 2014. 

A November 11 news item affirms that I made the correct decision to proceed with HSCT. The 2014 launch of Lemtrada is now in doubt because of an unacceptably high risk of thyroid cancer. FDA sorting out the risk/benefit equation for Lemtrada will take longer than expected. I can only imagine how many MS patients will get worse as they await a drug that trades mild improvement in MS symptoms for a high risk of cancer.

I'm glad I did not wait. Though HSCT is not without risk, the potential quality of life benefit is much greater. Whereas Lemtrada has shown a 1 point improvement on the MS disability scale of 1 to 10,  HSCT is showing greater than 1 point of improvement, with 2 to 3 points of improvement for highly inflammatory relapsing remitting MS cases like mine. 



TOPIC UPDATE:

In the report on Genzyme’s Lemtrada, FDA drug reviewer John Marler detailed a litany of conditions and complications that could be caused by the MS treatment. He also called into question the way clinical trials of the drug were conducted.

“The certainty of the risks of potentially lifelong hypothyroidism [a thyroid condition], serious infusion reactions, melanoma, and other malignancies, Grave’s ophthalmopathy [a thyroid-related eye disease] and other autoimmune disorders and prolonged increased susceptibility to infection may not be balanced by the uncertainty that exists in the limited evidence of potential clinical benefits from clinical trials that were not well-controlled,” Marler wrote.  Full article below.

Report slams Genzyme’s MS drug on eve of hearing