Last Tues I had the regular brief protocol meeting with my onc which turned into our longest appt ever and the most important since the first one when he granted me Gemzar alone as first line. He went over all my scans and last few months of blood tests and concluded that he thought we both should conclude that Gemzar is probably not doing anything anymore except "burning out your bone marrow". He said the primary has progressed over 20% over time and I now have a hypermetabolic nodule. He can no longer continue Gemzar. He offered Tarceva!!!! to save my bone marrow. I refused and said I would rather go Alternatives or seek Radiation somewhere.
Then came the shocker. He said I was unique among stage IV lung cancer patients, said that my response to Gemzar monotherapy was unprecedented, and that I have never metastasized after almost 3 years of treatment. So if I wanted to whack my two active sites with radiation, he would support it. This is after over 2 yrs of laughing off radiation saying no one would do it on someone with multiple nodules in both lungs. I can't believe I am going to get radiation when it was refused when my primary was the only hypermetabolic cancer left and was only 2.9 x 2.8 cm in Jan, 2012, down from 8 x 7x 6 cm at Dx. So Gemzar is over after 33 months and 102 infusions.
He said the radiologists at another close hospital of my HMO are the best, but there is only one radiation oncologist there who might agree with him, but it would it depend on the Rad onc's read of my last scans. So he left the room and got this radiology onc on the phone, told him my history and both looked at my scans, and the radiation onc said doable!!!!
When I got home, the phone rang and it was the radiation onc’s assistant who set me up with an appt on July 8, my 3 yr Dx anniversary. Rad onc wants me off Gemzar for a month - it does not mix w/radiation. Hopeful but scared. Tough deal to leave Gemzar with no side-effects and feeling absolutely normal. Wish me luck.
Mon, 06/16/2014 - 15:06
Hey slimer, Just reading those numbers makes me hurt but I'm so glad gemzar didn't bother you.
I hope the radiation is as effective and unobtrusive.
I can only imagine how difficult it's been to have to make the change and not knowing anything for certain. Remember you have options open even after radiation.
Congrats on the unprecedented 3 year run and big hopes for tomorrow.
Mon, 06/16/2014 - 15:48
Thank you Janine. As you know, for a long time I was hoping to follow D's example to NED. But alas, not to be, I was just too diseased at Dx - a monster primary, hundreds of tumors many hypermetabolic in both lungs, and every lymph node in my chest with adenopathy. Looking back with what I know now, the 8 months the oncs gave to live was optimistic. Gemzar has been very good to me to eliminate so much tumor burden while sparing me the typical side-effects of chemo for so long. Now I am ready to seize this radiation opportunity and accept the inevitable damage from radiation to extend my life, and hopefully long enough for something new to come down the pipeline. I've been lucky, and maybe I'll get lucky again. I'll post up my radiation results.
Mon, 06/16/2014 - 18:39
I just wanted to congratulate you on what was indeed an unprecedented response, but very wonderful. Good luck with your upcoming radiation treatment.
Mon, 06/16/2014 - 20:08
Thank you Dr. West.
Tue, 06/17/2014 - 10:55
Congratulations on such a great response to Gemzar, and good luck in your meeting with the radiation oncologist and the anticipated radiation treatment.