Treatment Update: Torisel

I'll be having my third weekly round of Torisel in a couple of days and thought it was time to post an update.  

Torisel is a brand name for the drug Temsirolimus, which is administered via IV. (Everolimus is the version that's taken orally.) They're all versions of an mTOR inhibitor, geared to my genetic PI3K mutation. Thus far I've had traditional chemo, which did nothing, and immunotherapy, which worked for 9-10 months but eventually gave out. I have one large tumor in my abdomen, under the psoas muscle, which has been been previously radiated. The new growth area is outside the radiation field but, fortunately, there's been no spread elsewhere yet. It can't be operated on, nor can it be radiated anymore.

I was really scared to start this treatment because of Lulu's mouth sore experiences, which others have reported as well. When they gave me the option of IV or pills, I jumped on the IV which I think surprised the doc. I'll have 8 rounds of treatment then they'll do a scan to see if/how it's working. I was doubly scared because we hadn't been able to get a good biopsy to even confirm what, exactly, we're dealing with. Absent that, the doctor revisited the original Foundation One report and came up with Torisel. Fortunately, the side effects have been tolerable and I think it's doing some good. Common effects are skin rash, mouth sores, nausea/vomiting, tiredness, headache and runny nose/sinus problems. Thus far I've only had nausea - which isn't really nausea, but a feeling of being so full I can't eat another bite, like after Thanksgiving dinner...but when I haven't eaten since the previous day. I've also had sniffles, mild headache and tiredness, all tolerable thus far.

The reason I think it may be doing some good is this: I can walk more freely now than I've been able to in a couple of months. For the last 4-5 days, I've even been able to walk without my cane and with very little back pain. That's huge: a month ago, just walking from the bedroom to the kitchen required a lot of planning, and all of my stamina. Now I can walk up and down my hall as many times as I want, and I even drove to the cleaners today. Score! Who'd have thought that just running an errand could be such a source of pleasure.

I suppose it could be that the tumor is just shifting, but I wouldn't expect that to correlate with a lessening of pain, or increasing mobility. Last night was the first time I tried to go to sleep without my trusty ice bag, which has been my bedtime buddy for months. Strange to miss such a thing. I'll continue posting updates about this round of treatment, but wanted to get something out there before too much time had gone by. Cross your fingers this is some sort of real response, and not a placebo effect at work. Thank you all for your support and encouragement! B