Advanced intrahepatic CC from Finland
- This topic has 5 replies, 4 voices, and was last updated 9 years ago by
.
-
Posts
-
Minzzi…….it is likely that the blocked stents caused the cholangitis. Please take a look at our Action Alert asking patients to carry at all times the biliary card:
http://cholangiocarcinoma.org/biliary-emergency-information-card/I don’t want to upset your more than already you are, but based on your reports to us, I find your husband’s care substandard. Where is the communication with the physicians? Someone must have taken charge of your husband’s care.
Hugs,
MarionI think he is stage IV as lymph node metastases. Last MRI was taken yesterday which seems not to have changed from may. Not sure about mets in other places though. He has quite a bit of pain but is still manageable without painkillers. Extreme fatigue, fever and cholangitis have been a burden during last week. He is on invanz antibiotics but not sure if they are helping.
Also stents are probably blocked and he has had same plastic ones there for a year! Even though they are supposed to be changed every couple of months.. Another treatment failure I would say.
They did plan for a stent replacement for next week but in my opinion it should be done sooner. But I guess the infection needs to be treated first.
Dear Minzzi –
I am with Lainy….you got shoved into a corner and no one really tried anything different. As far as natural treatments I am not sure that anything will really work on a long tern basis although in the US as medical marijuana becomes more popular I have talked to people who has done very well on that. Not sure how or if that is available. I know that conventional treatment is Gem/Cis which is usually fairly well tolerated by most people and often there is tumor shrinkage which can lead to surgery later down the road.
Also you could look at the UK or if you are able to come to the US you could try the Mayo Clinic in Rochester Minnesota or MD Anderson in Texas. There is also a list of cancer center on the web site that you could chose form.
I will be honest as far as diet goes….I would let him eat whatever and not worry so much about the rules especially if he losing weight….if it sounds good then let him have it. My husband at one point dropped from 100 kg to 72 kg. It was ugly. I used a lot of protein shakes. I made them with frozen fruit, ice cream, vanilla yogurt, protein powder and milk. He got tired of them but his weight got back to over 100 kg eventually. Other things that work is Carnation Instant Breakfast. Or just using dry powdered milk in things like soups, mashed potatoes, cereals as added protein and calories without the fats.
Hope this helps. Good luck and keep us posted.KrisV
Minzzi…..is it possible for you to travel to the UK? If so, please take a look at the AMMK website:
http://www.ammf.org.uk/
and peruse the various centers/physicians treating Cholangiocarcinoma patients.
Hugs,
MarionDear Minzzi, wow, what a corner you both are shoved in to. I don’t know how things work in Finland but can you go to another Cancer Clinic or seek the opinion of another Cancer Doctor? The best cure for CC is surgery. There have been others on our Board who started out much like your husband and the Docs put them on Chemo, which shrink the tumor enough to have surgery. Did they tell you what stage he is?
Natural and conventional treatments for the most part have not worked as this CC has a mind of it’s own.
You might try some Nutritional drinks, they will not cure but will help so that he is at least getting his nutrition.
At the top of the page is a Search engine and type in a word like nutrition and a ton of posts will appear.
Here is a link you may find helpful and please keep us updated as we truly care.http://cholangiocarcinoma.org/newly-dx/
Hi,
Been researching online about possible alternative cancer cures for the past 10 months.
My story is this; my husband was suddenly diagnosed with inoperable CC with mets to nearby lymph nodes last July (2014), with only two weeks of jaundice and itching prior as symptoms. After initial scans and blood tests they did an ERCP to place two plastic stents (both internal and external of the liver). Tumor size was almost 10cm in diameter at diagnosis but in the latest MRI taken a month ago it showed an increase of at least 2cm, while it also seems like it has spread from the left lobe (where only initially) to the right one.
Liver surgeons in Helsinki said straight away that there is not anyone who would be crazy enough to try to do a resection, yet, I am constantly finding evidence of similar cases where surgery has been done (even though cancer is intrahepatic).
We were offered gem-cispl combination as a palliative treatment and was told that would bring him approximately 6 months more. He refused the treatment.
Now we have tried several alternative treatments, such as vegetable juicing, vitamin supplements, organic vegetarian diet, no sugar, no white flour, no red meat for the first 8 months (now eating only organic poultry and beef occasionally), B17 tablets (+apricot seeds), budwig diet, and now latest is Protocel and digestive enzymes.
His blood results have been pretty good until Feb/March. AFOS and GT are both now almost as high as at the time of diagnosis, while Bilirubin is very low (i wonder what that means?).
He is losing weight (muscle and fat are pretty nonexistent), and he is getting stressed about all the rules of the various diets we have tried. Also what has been an issue for a long time is that he “forgets” to eat, especially if he has something more interesting to do (like watch tv, talk on the phone or browse the internet).
He is currently on sick leave (has been since last autumn) and my worry is that he is not getting enough exercise and fresh air even though he should have the time to concentrate on his own well being.The worst thing about this situation as a caregiver is this: we have no oncologist/doctor to talk to or to consult! He is a patient in the palliative section of the Helsinki Cancer Clinic but all the visits there have just been about “lets look at your blood test results” and “do you have any pain” and at the end they give tons of new (expensive) presciptions opioid drugs. Great treatment, lets pump up the dying people with pain killers so they wont realise whats happening to them..
I have been trying to find SOME doctor (mainly from Finland, but also abroad) who would be willing to think about other options rather than say “its chemo or nothing”.Wow, I ended up writing a lot more than i thought i would, but in the end it would be nice to be able to find some professionals and also peer patients who could tell whether not doing any conventional treatements have worked for them.
- The forum ‘Introductions!’ is closed to new topics and replies.