willow
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Find the search function on menu bar and type in ‘immunotherapy’. You can scroll through all discussions containing this word starting from most recent. One interesting one is the NIH TIL clinical trial which Melinda is undergoing. You will find her history there (or search TIL for all discussions related).
I found that most therapeutic/interventional CC clinical trials are at institutions back East but there may be more coming out to western research hospitals as this is becoming a hot research area that has shown promise. The problem is, cc gets lumped into drug studies for other cancers and there are few studies on cc alone. Drug companies are getting on the targeted drug (including immunotherapy drugs) bandwagon as this field is very promising.
WillowI don’t know them all but most are still investigational, not approved by the FDA for cc and therefore clinical trials are the place to look for them. Ask your oncologist. They usually require testing of your tumor biopsy tissue for specific molecular bio markers or mutations that will match with the therapy being tested. The therapies that fall under the category of immunotherapy vary greatly.
Check out clinical trials.gov and do a search
You can also use the search function on this discussion board.
Sincerely,
WillowOne 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,
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.
I find it interesting that CC patients would be told not to take NSAIDS “because they might cause liver damage”. Risk of internal bleeding from taking anything that thins the blood when undergoing chemo that can reduce platelets (hence reduce ability to clot) I do understand. NSAIDS are processed by the kidneys whereas acetaminophen (Tylenol) is processed by the liver. Still, the docs recy sister takes extra strength Tylenol and her RX pain killer has Tylenol in it. This seems like it would be “harder on the liver” than NSAIDS. Anyone able to clarify?
Thank you, Marion, and the entire CC foundation, for driving this work and assisting in funding it. Thank you from the bottom of my broken heart.
WillowI should add that there was only one point in time when my sisters white blood cell counts were really low that they rec avoiding raw foods, soft cheeses etc. Once its in the acceptable range, well washed fruits and veggies are ok.
Abdominal pain, especially at night, in the upper right abdomen was the symptom for my sisters Intrahepatic CC. She has never had jaundice (or the other symptoms of high bilirubin). Night sweats were another symptom but she attributed this to menopause (she was almost 50 at diagnosis).
Sorry about the chronic infection from tube blockages! Best as you get them replaced. I’ve hear others on this board who had repeated problems had them regularly replaced rather than wait for infection. Can’t recall interval. Take care, Lisa!
WillowHello,
I am sorry to hear of your brothers situation. I would add to whats been said that if you suspect an intestinal blockage (from tumor or constipation), ask for help right away. A palliative procedure may help as blockage would be painful. The goal of hospice is comfort, both physical, mental and spiritual so push for anything he needs to be comfortable.
WillowCrissie,
I too would like to add my sympathy at the loss of your father. You were a wonderful advocate and daughter. It is hard to juggle the responsibilities and grief but it does get easier. In time I hope the sad memories of this last month will be replaced by fond memories with your father.
Sincerely,
Willow
