The initial email to me recounted:
I additionally have urothelial carcinoma. I had my bladder removed in mid-2011. I did neoadjuvant chemotherapy with cisplatin. They purely chanced on out a lymph node with cancer and I've been correctly known with stage IV bladder cancer. They are recommending MVAC.
I responded with the following:
Thanks for the note. I'm sorry to listen approximately your Dx. I have large amounts of questions and remarks:
1. Have you been considered by an quintessential cancer middle? Getting their input is intensely quintessential. Where are you at, geographically? I provide you with touch info for cancer facilities in DC, Baltimore, Philly, Chicago, and Houston.
2. I perceive that you simply've had been given had been given had an RC and had neoadjuvant chemo, and meanwhile are faced with salvage chemo, and MVAC is being cautioned. As you understand from my weblog, I faced the similar thing 6 months in the beyond. I consulted with medical authorities at Fox Chase, U. Chicago, NIH, and GW re my treatment percentages. Because my node was under 1.five cm on the speedy axis, I failed to qualify for any clinical trial. If your mets node is larger than that, then you might correctly correctly additionally qualify for an ordeal. There are some very provocative subjects occurring with gene therapy. If an ordeal is an variety, then I'd get along with an quintessential cancer middle and review the chances obtainable to you. For me, excited about that an ordeal was now not (yet) obtainable, the query for my medical authorities was whether to have salvage chemo or now not. NIH and GW cautioned dose dense MVAC. They recounted that it was extra a hit and no extra toxic than standard MVAC. In my posts of September 2013, I explored the execs and cons of ddMVAC. Talk with your doc approximately ddMVAC, as hostile to plain MVAC.
three. Are you the number of grownup who should be advised as an awful lot as you can, or would you instead do what your medical doctor says without any moment guessing? I'm the former, having recounted that my docs advised me that I was the exception to the guideline. I concentrate on it'll be quintessential to be correctly-knowledgeable, having recounted that additionally understand your source. Pay no realization to it doesn't matter what else you listen out of your correctly-that implies domestic and buddies, or learn on line (adding what I say), unless you can independently verify it by a trusted source. This is principally bodily for solely diversified cancer therapies. That being recounted, you are your uncommon most advantageous advocate, and might correctly correctly additionally be snug with what's being achieved to you.
4. Stage IV BC will tremendously much evidently kill you, since it might correctly correctly additionally likely me. The query is how aggressive you are attempting to find out to be to prolong your life. Virtually all the soreness, suffering, and discomfort that you simply are going to ride can be the consequence of the cures, and now not the cancer itself. Treatments can double your remaining life (or extra), having recounted that there might be a experiment to immoderate quality of life. Only you can figure whether the impairment of the immoderate quality of life is well well worth the experiment.
five. My religion has helped me immensely. If you have a church network, draw them in. Family is a vast convenience, too. I chanced on out that BC clarified my priorities and bolstered my courting with my domestic, and with God. In that procedure, it be been a blessing.
I obtained the following response:
Thanks for your responses concerning to my subject. What had been the side results even as taking ddMVAC and how long did you take it?
I replied as follows:
I did three rounds of ddMVAC. Each circular lasts two weeks. I blogged approximately what it comes to and the side results. See my entries in September and October 2013, commencing at http://kwbcancerblog.blogspot.com/2013/09/mets-day-530-ddmvac-day-1.html. The ddMVAC chemo was an awful lot more durable than GemCis. Each dose wiped me out for 7-10 days. Total fatigue, GI tract thrashed, mouth sores, entire hair loss, some neuropathy in my feet, and shortness of breath. Nausea was saved in dialogue to anti-emetics. My NIH medical doctor advised me that "I tolerated the chemo correctly", which was news to me. She noticed that I failed to require hospitalization or transfusions, which approximately 35-50% of ddMVAC sufferers do. Apparently, the older the victim, the additional lovely the hazards (I'm fifty one, so I'm at the additional youthful end of the BC spectrum). I pulled the plug after three rounds of ddMVAC (the original plan was 6 rounds), excited about that I felt the side results had been now not well well worth the skills advantages. Two and a half months once i stopped it, I've had been given no similarly fortify of the mets in my neck. My docs might correctly correctly additionally now not be organized to claim pointless to claim if it was thru the ddMVAC or maybe that's what would have gotten the following about in addition to, having recounted that currently I'm taking a wait-and-see mindset.From what I learn and my docs advised me, ddMVAC is substantially less toxic that standard MVAC. I summarized most likely some of the most stories comparing ddMVAC to plain MVAC in my Sept. sixteen weblog, http://kwbcancerblog.blogspot.com/2013/09/mats-day-522-my-gw-oncologist-says-to.html. My apply-up posts in later September embrace extra info approximately the execs and cons of ddMVAC. For me, the query was now not ever amongst standard MVAC and ddMVAC, since the info ordinarily favourite ddMVAC, and my docs now not ever cautioned standard MVAC. The drawback for me was ddMVAC or nothing. It was a troublesome call, and my pulling the plug on it after three rounds contemplated my loss of entire commitment to it. It's a grownup variety, and I might correctly correctly additionally now not be organized to tell you what be assured you do. All I can do is share my ride, and hope it supports.
I obtained the following response:
You have been a vast assist in making this quintessential life variety. Thank you so an awful lot.