chrismarshall
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Hi.joolz822,
Please make sure that Doylestown is being as aggressive as possible. I chose Jefferson for their docs, but also access to the best equipment and ideas to fight this disease. Not all ideas are equal, and I continually ask my docs “is this the most aggressive we can be?” I hope doylestown serves you well and wish you success.
I had a met to my lower vertebrae as well and they radiated it. That was 6 months go, and it no longer shows on pet scans. Did they talk of radiating your spine? Ives
Good health to you! Eagles fan? Phillies fan? Wish we were going to the superbowl. Gives me a good reason to sit on the sofa for 4 hours
ChrisThanks for the advice, I think my next step will be to beg. Genentech turned me down for assistance already, so i’ll need to find the right people to contact both there, and at insurance company. No harm on asking, again and again. Thanks.
Hello Sidig!
When I read that your mom was recently diagnosed, it took me back to how I felt when I was first diagnosed. Overwhelmed, incredibly sad, and shocked. Your mom probably is having some of those feelings, and I hope she is sharing them with you. For me, it was truly the first time in my life that I felt I had zero control over my future. Well, that was until I developed a real plan to start fighting this disease. There are many ways to fight: chemo, radiation, diet, exercise, with attitude guiding them all. Your mom has just begun her fight, so allow her some time to mourn the news and then develop the plan!
To answer some of your questions, in my experience, I was given chemo first because I was inoperable. What made me inoperable was both the location of my tumor (1/2 my liver was cancer and it surrounded the bile ducts and veins), as well as it had metasticized to my lower back. Chemo can control the spread, as you mentioned. But, I do not believe a surgeon would operate until the metastases was taken care of. I do not know alot about radiation of the liver, but I know it can be done. Again, each case is individual, so what might be “right” for your mom might be totally different than was is right for me or anyone else. Regarding the transplant, I believe anyone with metasticized cancer is not eligibe for a transplant. Lastly, if the clinical trial is already in progress, please ask the coordinator about the other participants in the trial. How old are they? How are they responding to the treatment? Are the tumors reducing in size? Are their tumors/cancer similar to your moms for comparison purposes?
I wish your mom the best of health. Remind her to take it one day at a time and don’t look down the road that someone has labeled “1 year long”. My road was labeled “6 months”, that was 15 months ago, and I’m not going anywhere anytime soon, God willing.
Warmly,
chrisHi Gavin, Margaret (Tom), Harmony and Maria!
Thanks to all of you for the warm welcomes!
I didn’t realize when I sent my intial posts that my story might be uplifting to others…but you are absolutely right, I became resectable!! I responded very well to my initial chemo regimen (Oxalyplatin, Gemcitabine and Avastin). At least well enough to become resectable. I was estatic when they told me the surgeon would perform the surgery, as I was only given initially 6 months to live, and never dreamed that day would come. That was 15 months ago. And although I still have cancer (in my liver, and potentially in my lungs and on the abdominal wall), I am hoping that by having alot “less” cancer than I used to, the chemo will work better. Hopefully this round will be able to tackle the smaller tumors more effectively than the ones that used to occupy 1/2 of my liver and bile ducts.
Wow…as I type this…I realize I’ve come a long way.
I’m writing tonight to tell all of you to keep trying as hard as you can!! For me personally, getting cancer was a wake up call to improve the way I lived. While on chemo, I ate a macrobiotic diet, giving up sooo much, and learned to be strong. I attended yoga and read many spiritual and religious books, and exercised (walked) almost every day. the combo fed my soul, and made me feel capable of fighting.
I wish each of you huge success and strength as you battle on. I will be fighting here with you as I continue my journey as well.
Warmly,
ChrisI am from the suburbs of Philadelphia and being treated at Thomas Jefferson Hospital in Philadelphia. I had my resection performed at The Hospital of the University of Pennsylvania. My experiences have been good. Although I often wonder how many “second opinions” we should get, and whose combinations of drugs will work the best. I have three children between 9 and 16, and although I realize how difficult this cancer is, I will not allow myself to think that it may beat me. I continue to always hope for those 100% negative scans!
