Just walked in door from onc appt about my last scan from last Tuesday. To get away from the bozo radiologists at my facility of the HMO I belong to, I went for my last 2 CT scans with contrast to another facility of the same HMO 20 miles away. My onc didn't even know that you could do that and was happy I did it on my own volition because he could clearly see the difference in detail and analysis represented by the last two CT scans. Not to mention the night and day measurements.
(Thank you Dr. West for your article on the MSK radiology measurement study – you’ll never know how much it has helped me stay on Gemzar w/ Q of L)
On my July scan from the new radiologists, I had slight progression, so if I progressed further on this one it was on to an immunology trial - that is if after biopsy my tumor expressed enough PDL1 to qualify. A small senescent (sleeping) nodule always described as "adjacent" to my primary tumor came alive and grew 1 centimeter into the primary, making it a "conglomerate" tumor.
BUT, I was STAAAABLE!! on this one, meaning my cancer is still sensitized to Gemzar (gemcitabine) enough to stop further progression in its tracks. And no adenopathy in any lymph node from neck to pelvis. I stay on Gemzar which for me is not like having chemo at all. My excellent Quality of Life on Gemzar can continue. Had my 79th infusion last Friday.
And my onc, who from the beginning of my adventure on Gemzar as first line monotherapy 25 months ago has kept telling me that Gemzar can't last (depressing to hear although a statistical certainty), said today that it would not surprise him at this point if I made it another TWO YEARS on Gemzar!!! Even I doubt that, but my wife and I left there today happy and smiling, a very rare event.
Reply # - October 8, 2013, 04:32 PM
Reply To: Gemzar Update – My Latest Scan
What can I say. I know how your wife must have felt to have the onc walk in and give y'all this news, for sure. I'm so so so happy to hear this, huge smile and some tears, my face hurts. :lol:
Give your wife a million hugs for D and me,
Janine
1,2,3.....Dance around the table!
Reply # - October 8, 2013, 04:37 PM
Reply To: Gemzar Update – My Latest Scan
Dr. West, I can't help but compare my husband's small progression after some months on Gemzar then more shrinkage much like slimer. D's onc was ready to go either way, maintain gem or change treatments,I had already made up my mind to stay put because of reading your posts.
Thanks you :lol:
Reply # - October 8, 2013, 06:11 PM
Reply To: Gemzar Update – My Latest Scan
That's great. The only thing I like to be sure of is that the gemzar is really doing something and it's not just stable with or without chemo. But if there's progression off of chemo and stability on it, it's great to be doing a chemo that is so well tolerated.
Congratulations on those great results!
-Dr. West
Reply # - October 8, 2013, 07:12 PM
Reply To: Gemzar Update – My Latest Scan
Hurray, Hurrah, Hooray!!! Keep on trucking!
Jazz
Reply # - October 9, 2013, 11:50 AM
Reply To: Gemzar Update – My Latest Scan
I learned/came to understand on Grace too. 8-)
Reply # - October 9, 2013, 12:56 PM
Reply To: Gemzar Update – My Latest Scan
Catdancer,
Thank you for the cyber hugs from you and D. You know what D’s story has meant to me for a long time, and certainly you identify with my wife and how hard this whole journey has been on her.
Dr. West,
Thanks for your always informative replies. I don’t think I have the guts to ask for a break to test whether the Gemzar is the independent variable in my current “stability”. I have had many progression scares from the “bozo” radiologists over the last 25 months, including “subtle lucencies in pelvis and sacrum” over a year ago, then never to be mentioned again. But a formerly non-hypermetabolic nodule coming to life and joining with my primary, I do recognize as my first real progression, and I have to assume the nodule has mutated. But now with stability after clear but slight progression, I feel IGemzar still is the independent variable. But then there are my supplements, many selected from a mountain of in vitro and in vivo lab studies to potentiate Gemzar, many paid for by Eli Lilly, as well as others that directly inhibit NK-kB and Enzyme CYP3A4 that may explain my long run on Gemzar. But that still leaves Gemzar as the independent variable.
And I suppose if I was suffering acute chemo effects and was stable, I might want to test my stability with a chemo break. I did have one dose of Cisplatin/Gemzar, and because my reaction was the equivalent of death to me, I did have the guts then to quit chemo altogether. But with Gemzar alone being almost like not having chemo except seeing its weekly effect on my blood tests, I feel no need to right now to test the hypothesis. If my red counts descend greatly, and I feel extreme fatigue, I would ask for a break if I continue to be stable. I assume my oncologist watches them, but with 1000 patients under his care, I do watch my own counts.
Reply # - October 9, 2013, 01:05 PM
Reply To: Gemzar Update – My Latest Scan
"...I do watch my own counts." That's the self advocacy we all feel responsible for and brings us to Grace.
I don't blame you for wanting to stay the course. I remember when you denied more of the doublet and thought how brave you were. No one will question why you want to continue. However I appreciate Dr. West bringing up this important perspective. For those reading this who may not feel as well as you they can understand there may be other options.
Yay slimer!