Liver fluke tests?
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Thanks Mark. I tried Sulfasalazine and all the Mesalamine (sp) products and cannot take them. They made me worse! My system is upside down inside out and what works for others never seems to work for me. So far Humira has gotten me further than other Meds but still not in remission. Funny thing is I can almost tolerate Humira where most other people can’t. I get what they call ‘sporadic flu like symptoms’ a couple times a month and lots of fatigue
but better than all the other stuff. This is almost comical BUT by accident I found that a Migraine RX I take (really only 2 X a year or so) actually makes me feel totally normal for about 6 hours. I save that for when I am going out somewhere as they don’t want me to take it daily. Its a combo of aspirin, codeine, Butal and caffeine. It does make one a tad high, I guess but that’s me anyway so to speak! Hope you guys are enjoying your weekend.Hi Lainy,
I’m sorry that you continue to suffer from UC. From my early years with the disease, before treatment, I know how debilitating it can be. I’m lucky that it has been fairly effectively controlled for about 35 years now with Sulfasalazine. I have rarely required prednisone. I was screened regularly for colon cancer with never a hint of dysplasia. The CC was the rare surprise complication I didn’t even know about.
I hope you find relief.
Mark
Here in the UK in all supermarkets there has been a large rise in sales of a whitefish called Basa or River Cobbler. They sell it because it is very cheap compared to Cod or Haddock, the UK’s favourite whitefish. I’ve noticed over the years that it is taking up more shelf space in the supermarkets and also is going into other ready made products such as fish fingers, fish pies etc and is also available frozen. It is imported from the Mekong River Delta in Vietnam and also Thailand.
http://en.wikipedia.org/wiki/Basa_fish
Not for me thanks, I’ll stick to my local haddock from my local fishmonger.
Gavin
Hi Mark. We are partners in crime here. I have had UC for 2 years now and just cannot get in to remission. Can I ask you what you are taking for your UC?
I have always heard about the connection of UC to CC but I figured Teddy got the CC and in his last year I got another very rare Cancer called a GIST then the UC. My thinking is this family has had enough! Waiting now to hear results of my CT Scan this last week for the GIST. Happily Oct 1st I will be starting my 5th year Cancer free but this UC is really debilitating. I am finding our that some food can really be a big culprit. Hope you are doing well with everything!A tad off Julie’s topic, but one more risk factor for Maion’s list – ulcerative colitis. It used to to be seen as a risk factor if it presented with PSC. Now it is considered an independent risk factor. I have UC without PSC, and my onc. considers that to be the source of my cc. Kind of comforting to know my risk factor…I guess.
Best, Mark
Dear RVB. I went to Walmart the other day and in the frozen fish dept. they had whitefish. Big words WHITEFISH! I had not had whitefish in years and used to love it. Didn’t read the rest!!! It was from Viet Nam or Twain and really not my old whitefish as it was just white and fish! I did Google it and apparently its becoming very popular here. I tossed it. Couldn’t eat it. Another worry is Sushi. Sometimes we REALLY do not know what kind of fish or where it is coming from. Best to stick to things like Salmon, Tuna etc. I love Trout and that is home grown or farmed here. My husband was old time Sicilian and he would eat anything so I imagine when he was in Korea he did just that, tasted anything! I love shrimp but only buy from here. My Grandkids are half Japanese and half Jewish, what a combo, yes? They love Sushi and that really bothers me. I also try to stay away from processed food. I tell you when I see the processed turkey and ham in the Deli it makes me gag! Lately I have been getting rotisserie chickens and carve them and eat the chicken on a piece of toasted dark rye bread, Mmmm good. THEN THERE IS OUR CRAZY ENVIRONMENT. But, we can’t live like hermits either so I guess we just have to try to live a little smarter!
Hmmmm. I love seafood, all kind of fish, mollusks and shellfish. I have noticed a lot of our shrimp has been imported from Vietnam. I hope there is no connection! And I do live in New Jersey…on the East Coast. Oh boy.
Brenda…no studies have shown a link to drinking water and Cholangiocarcinoma. Risk factors may include: primary sclerosing cholangitis (PSC,) certain parasitic liver diseases (Opisthorchis viverrini (found in Thailand, Laos, and Malaysia) or Clonorchis sinensis (found in Japan, Korea, and Vietnam.) Additionally, patients with chronic liver disease such as viral hepatitis (e.g. hepatitis B or hepatitis C), alcoholic liver disease, or cirrhosis of the liver. There is some suggestion as to HIV infection and the connection to Cholangiocarcinoma. Also, congenital liver abnormalities, such as Caroli’s syndrome or choledochal cysts as, the rare inherited disorders Lynch syndrome II and biliary papillomatosis may lead to the diagnoses of this disease. Intrahepatic stones (hepatolithiasis), which are rare in the West but common in parts of Asia, have been strongly associated with cholangiocarcinoma. Thorotrast, used 30 to 40 years ago in radiation also has been linked to the development of cholangiocarcinoma.
The majority of patients diagnosed however; do not present with any known risk factors.
Hugs,
MarionHas anyone heard of a possible link to drinking water? I have wondered about that for a long time, and no, I have not heard of a blood test for cc either.
Hi Julie, As far as I know there are no tests for humans. They have been working on tests for farm raised fish but it is not being used yet. If you Google Liver Flukes Test there is a lot of information. Not what we want to hear but more articles are appearing than there were a few years ago. Liver Flukes is a Parasite that gets in to the intestines and lives there for 30 – 40 years or so and there is no way to detect they are there as there are no symptoms until the Cancer has advanced. They then leave the system and leave behind CC.
I strongly believe it has to do with fish and oddly I believe we have the most members on here from California and then the East Coast. Mmmmm
I am sure someone will come forward with some more on this. Did your Dad serve in any of the wars in Asia? My husband served in Korea and got CC at the age of 73. This is the first time I have ever heard of a blood marker signaling liver flukes. What do all of you think?Hi folks,
I’m wondering if anyone on the board has gotten a liver fluke test done after diagnosis of cc?
I know that cc is a bigger problem than liver flukes but in terms i) understanding the root of the problem – if it’s liver flukes induced, and ii) if there are still liver flukes lurking in the liver, I’m thinking of proposing this to my Dad’s doctors for a test, but wanted to see if anyone has done this before? Would love to hear thoughts/experiences/opinions!
My Dad’s situation is that he had recurrence ~1 year after surgery and then had RFA this April to remove the two recurrent tumors. He’s recovering from the RFA procedures, and getting stronger. He continues to eat, exercise, and sleep well, but on his latest blood test, there was a spike in a blood marker that indicates the elevated level is related to possible parasites. Hence my question to the group on liver fluke tests.
Thanks!!
Julie
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