Since this is still a cancer blog about metastatic kidney cancer and my experience with it all, I thought I would share one of the ugly realities of RCC (Kidney Cancer) mets and how unpredictable they can be. As you may know I underwent my my first Cyberknife procedure back in December of 2009 at BIDMC with great results. The three brain mets died, two were absorbed by my body and the largest of the three is dead and slowly disappearing as well. You may also remember that as part of recovery they put you on a plan of steroid therapy that keeps the immune system severely suppressed so that it is unable to produce any brain swelling around the site of treatment. Swelling as you can imagine is just not good. It leads to seizures and other complications. Then again, steroids are no good either since they have dramatic side effects, some of which include anger, weight gain, severe muscle degeneration, and they suppress the immune system while I am dealing with cancer!
One the one hand, I am getting this amazing MDX-1106 drug that is turning on my immune system to remove the cancer cells from my body but then I was getting Decadron as well, that does all it can to stop my immune system from getting turned on by the MDX-1106 to kill the cancer cells. I feel for my medical team. What choice do they have?
OK so Decadron gives me every single side effect you can imagine: Fits of rage, fits of crying, I gained 30 pounds, I got chest colds, whatever disease my kids brought home from school, I managed to get as well. January, February were pretty bad months for me.
Then we get our major ice storm that knocks out our power up here. We leave NH and get a hotel room in Massachusetts. While there I developed a sensation in my throat that I chalked up to yet another throat cold thanks to the Decadron and my weakened immune system. Except this time it would not got away. We returned to NH and I went to my local doc who referred me to an ENT , a great doctor and a nice person. If you’re ever up to NH or on your way to Maine and need a quick look down your throat for any reason or just want nice conversation, look him up, he is a super nice person.
He took a look back there and said…’Ummm not sure what this is but I see a dime-sized raised bump with a lot of crud on it from the inside of your mouth. Your mouth produces a lot of coating and this coating is covering the red raised bump.’ He takes some samples. A week later biopsy comes back: RCC met. To my tongue. The only other person I have heard this happening to is my friend and fellow RCC traveler e-patient Dave .
I took that horrible photo above (book light with camera phone) and sent it to my oncology team. They were not too concerned. Their theory is that while I was on the Decadron the mets could take the opportunity to get aggressive and be on the move, since my immune system had weakened. Their positive note, as well as mine, was that at least it did not land on my other kidney or my liver or any other major organ. Besides, we had a CT scan that following week and we would see exactly what damage had been caused by being on this steroid. CT came back with amazing results: Reduction in all mets in my body south of my chin, no new mets, and most of the small ones had disappeared all together. MDX-1106 pushed through the steroid and still worked!
OK so now what to do about this thing in the back of my tongue? The escapee, as we call it? The ENT wanted to cut it out it an easy outpatient procedure. Dr. Cho said not to, lets watch and see MDX-1106 kill it off in its own way. I listened and I am glad I did.
I started drinking a lot of organic green tea and gargling with it every day at least two to three times a day. I’ve read that green tea rolling around the mouth prevents all sorts of cancers . And in the past few weeks, with the help of my infusions, my gargling, and my overall new approach this thing has been breaking off in chunks and I have been coughing it out in the sink, the shower, wherever. Don’t cringe, we all love horror movies, so this is nothing. It comes out in small black pieces and then is followed by globs of blood and clots. It’s fascinating really, since I have seen one of my tumors for the first time. This goes on now almost on a daily basis even though I am on Decadron once again since my second Cyberknife surgery three weeks ago. So MDX-1106 is still working despite the new, lower dosage of Decadron that I am on!
It once again shows the power of MDX-1106 to work through the steroid and kill this thing off. But I also think gargling with organic antioxidants keeps the met on the run as well. It all helps. It is dying off and breaking apart and despite the blood and gore I see in the sink (I call Melissa over every time so she see this little piece of black tumor and blood – just to get her gagging) and we both stand there amazed and how this is all working. My tumor is literally falling from my body.
I know I have been focusing on my new love of the Ayurvedic lifestyle (more on meditation and breathing tomorrow) – but for now, I thought some of you may like to know that these fuckers can wind up anywhere and we need to be vigilant. Another good friend had one in his pituitary gland (I think it was)
Anyway, thanks for reading. If you want pics of the blood in the sink I can snap some of those as well