I’m Just a Normal Mutant

And that’s a good thing, really.

Two good calls happened in the last week. First, earlier in the week I received the update that the treatment drug, Gleevec, had been been approved and also that I had qualified for the drug manufacturer subsidy to help with the prescription cost for that portion of the treatment. What a relief. Now that’s not say it still won’t be expensive with all the other tests, scans and medications involved, but it sure helps. In fact it will still be very expensive, but I’ll take all the help I can get.

Whew. One step forward.

Next item of information I really needed to know was the mutation report from the biopsy. That’s right, I needed to know exactly what kind of mutant I am. I mean, the mutation this alien inside me is and if it is the right candidate for the treatment plan.

See the key here in my treatment is that the GIST is a form of Sarcoma that is not treatable with the most common chemo and radiation, but they have found a specific protein (KIT) involved in the growth receptors of about 85-90% of this specific tumor type. The drug class is called kinase inhibitors. 10-15% of the mutation types have a primary resistance. For all this week we’ve been waiting to know if I fall into the 90 or the 10. It’s easy at this point to feel like everything has gone south anyway, so that 15% is where I was headed.

This morning the Oncologist called and said the pathology results were in and the tumor showed the key protein was present, so I’m in the 85% category.

Yes! This is good news. A ray of sunshine amidst the storm. I’ll take it.

Now of course this doesn’t insure anything. No guarantees it will work, but it does show we have selected the best known treatment for this very specific tumor type. There is also chances of a secondary resistance. In fact it really could be a high possibility, but we just don’t know until we try. Because the tumor is big, and if there is some spread into secondary lesions or smaller tumors it’s possible it could be less effective in shrinking the tumor so it can be removed. Also with it being large there’s a real possibility other portions of the tumor have mutated further, but then if enough of it is treatable, again we hope it can shrink enough to be removed.

But again, good news is good news. We’ll take it.

Treatment starts tomorrow. One pill a day, never miss a day. The biggest side effect is likely to be fatigue. I’ve been more tired with the tumor anyway, so I’m anticipating this being my biggest battle. Only time will tell, and as I work hard to stay fit and eat right, hopefully we can mitigate the fatigue a bit. We keep treating this daily and check in on blood levels every few weeks. then we do a new CT scan in a few months and see if we see some early results. Bigger results even if successful will be much longer, but we peek in periodically and assess the progress or lack of progress.

So the next step in the journey starts tomorrow. The battle begins. But of course it really began a long time ago when I started changing my health and fitness. We are just progressing to the next step. I’m ready.

Keeping up the fitness any way I can