GcMAF????
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Hi Momedge, if you go to our search site at the top here, and type in Radioembol….. posts will appear with that subject. Best of luck.
Sometimes they will look at your records (but not at you physically) and give a brief opinion for free or for next to nothing. Since it’s out of network, you still may get 50% covered after your deductible is met so it’s worth calling your kaiser benefits office to ask.
Lazarex and Lance Armstrong foundation as well as many others can help reimburse for travel there (gas, parking and maybe hotel). I am sorry I can’t think of others. Ask social worker at USC and Kaiser.
WillowThank you for the input, I went to the USC website, will be calling tomorrow… Does anyone know of any grants to pay for second or third opinions that my insurance won’t cover? I am unable to change insurance at this time, when that option comes around it may be too late. It feels good to find some support on this rare disease.
Dear Momedge, welcome to our extraordinary family but sorry you had to find us. My husband had a Whipple Surgery and the Duodenum was removed but the CC returned 3 years later to where the Duodenum had been and he had Cyber Knife which worked for 2 years and it again came back to the same place. He did not have Chemo as the ONCs all said it would not help. With that said I would suggest getting a 2nd and even 3rd opinion outside of Kaiser and at a place that has treated a lot of CC. Some of our members have left Kaiser as they just didn’t seem aggressive enough and CC requires aggressive. Cedars and UCLA are both good. Most ONCs dealing with CC don’t mind other opinions at all. Best of luck to you and know you have come to the best place to be, here!
One more thing, there are many who have very few side effects or only mild ones from the gem/Cis. Each person is unique and not all chemos are terrible, though over a prolonged time the cumulative side effects or the tendency for cancer to build resistance often lead to discontinuation of that regimen and a switch to another.
Momedge,
You sound like you have been doing lots of research. Your oncologist, having been trained at Sedars and UCLA should be a good person to ask about the treatments you posted here. Some may not be approved or widespread therapies (could be considered investigational and thereby not covered by insurance. You should have a social worker and financial/benefits advisor to help you figure out what’s potential treatment and how to apt for non-standard treatments. If possible, go outside of Kaiser for a second (or even 3rd) opinion. May cost a few hundred but Kaiser can email all records and scans for this purpose. Marion suggested USC. I know Sedars and UCLA also see a good number of CC patients.
Keep in mind that most chemo for CC is considered “palliative” though some have had good enough responses to get surgery. Surgery is the only curative treatment for this cancer. That said, many with advanced CC (stage 3 and 4) have prolonged their lives with other therapies usually invvomg chemo, and cutting edge kinds of radiation. There are also clinical trials that are involve the targeted therapies you mentioned. Ask your dr about genomic testing as it may be helpful n finding a clinical trial you can qualify for.
All the best to you,
WillowMomedge….molecular profiling is performed frequently. Not sure as to whether Kaiser does, but it is worth inquiring. Targeted agents (if available) for your particular mutations, will then be recommended to you. Momedge, I would highly advise you to seek out another professional opinion from a physician/center treating a high volume of Cholangiocarcinoma patients.
Hugs,
MarionDoes anyone know of target chemo options for bile duct cancer? Or genomics testing to identify the genetic makeup of the cancer to determine what treatment might work best? Is this something Kaiser might be willing to do?
Has anyone used low dose, non toxic chemotherapy with insulin potentiated therapy… How can I avail myself of this treatment? I read about it being used by an oncologist in Reno, anyone have any advice how to see if Kaiser can do this?
I have been diagnosed with stage IV intra and extrahepatic biliary cancer. The tumor has grown to press on the duodenum. I have been going to Kaiser Sunset for treatment. They have put in stents(metal now) in the intrahepatic and main bile ducts, just this last week a duodenal stent. Kaiser has said all they can offer is palliative treatment. I have begun taking Poly MVA and am considering GcMAF as well as the Gem/cis chemo kaiser wants to do. Does anyone have experience as to what this accomplishes.? My oncologist said he is a fellowes at Sedars and UCLA so led me to believe that there are no target chemos known for cholangiocarcinoma .Looking for any experiences of what has helped others… Some have said GcMAF is promising, I am willing to go homeopathic and natural medicine as well as medical, I just wonder if the lowering of the quality of life from the Chemo treatments will be worth their effects??
Momedge,
So sorry you have this diagnosis. How recently were you diagnosed? What kind of CC do you have (Intrahepatic, extrahepatic?). Where are you being treated currently? Getting to a large research cancer center that deals with many CC cases is important. Aside from greater expertise and a team of doctors who collaborate, this can potentially give you many more options, even at stage 4.
Momedge….you might want to reach out to the USC hepatobiliary department. Please peruse our website:
http://www.cholangiocarcinoma.org/medicaladvisorycouncil.htmHugs,
Marion
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