So Frustrated!
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Kris…This convention is in Chicago.
I will be in Philadelphia June 23rd through June 28th for the Patient Advocate Fellowship Program.I would love to meet up with you and Karen.
Hugs,
MarionThanks for the info on sushi. I’ve tried it ONCE. that was enough. But I will be more careful that any fish I eat is cooked thoroughly. I know, that’s closing the barn door after all the cows have escaped, right?
When is the convention in Philadelphia? I can’t remember.
Oh, Percy, I have talked about a mini convention for years. I will be in Milwaukee July 12 – 19 and would love it if we could meet half way for lunch or anything! I know you are so busy but I would truly love that.
Hi,Lainy ,
Good for you,
BTW,I am leaving for the convention now.
Sometimes ,I really would like to have a convention of just our own,the members , patients and care givers, all together,to sing songs, to do a little out of the norm crazy things to enjoy life in a different way than the norm.
May be we all take a cruise ,go the Europe,pick up our friends there, and have a pow wow gathering.
God bless.Percy, thanks so much for that post on Sushi. I am going to send it around to all the kids. As close as I have ever been to Sushi is smoked Lox and pickled herring. All part of my “soul” food but really never ate much of it.
Mona…I am glad to hear that your Mom will be regaining the weight loss. Although, I am puzzled by something:
Diagnoses was made via Spyglass
She is loosing weight,
Scans are clear.
What is her CA 19-9?
The values of her blood test?I have also learned that scans are unable to detect nodules if they are less than 1cm in size. This confirms what physicians have mentioned that the true extent of the disease only can be determined via “open surgery.”
Just wanted to share.
Hugs,
MarionHi,
I believe do not eat Sushi is an absolutely good idea .if you have to,which is no guarantee, go to the expensive and top restaurant . I will say, especial to the young generation, to avoid eating Sushi, and “hot pot “from Chinese ,Koren,Thai ,Vietnam and Japan restaurant in the States and Canada, and buffet outlets alike .
Most of them use frozen fish and no way you know where they came from.One time I shopped for frozen fish ,they are the “product of Thailand “.and some other just marked as “distributed by L.A. From California .” I think that means the fish is not from here or Canada. By the same token,people in Europe should do the same and make aware of the origin of the product. I am not against buying those product, I just want people know about the risk.
I learn long time ago,do not eat fish raw or semi raw(hot pot style) (ie:unless the water inside the hot pot is BOILING CONTINUOUSLYand you let the piece of fish boiled until it completely turn white for a while, then use the spoon to pick the fish up, the reason is if you just use the chopstick alone ,the part of the piece of the fish that the chopstick make contact all the time may not be cooked well even it looks white on the outside) .In general, fish must be well cooked .
Most rivers and nearbye ocean in the newly developed countries are polluted in the far east by our western standard.
What I am trying to say is about PREVENTION of this disease,shop wisely, advise yourself and others ,especially the trendy young generation to avoid what can happen down the road.
God bless.Lainy, that’s interesting. I didn’t know there was no way to detect them. The vet didn’t discover the cat had them until after she died and they did an autopsy. You’re right about not knowing enough about CC. Hope that changes in the near future with research on it. I know the big problem is that since it is a rare cancer, the money for research is lacking. Again, hope that changes as more people become aware of this cancer and more funding is made available for research. Blessings.
Mona, from what I understand, especially in Thailand, liver flukes are prominent in a certain fish. The people prepare the fish a special way and instead of cooking it or eating it fresh they leave it to ‘bake’ in the sun for days! Then they devour! They LOVE it! Problem is, it leaves behind the liver flukes that can live in the bile ducts for 30-40 years, then they leave and leave behind CC. There is NO way to detect them. I wish my Grandkids did not eat Sushi! Google liver flukes….very interesting. Teddy served in Korea and I know Darla and Margaret’s husbands served in Asia as well. Also, I am beginning to wonder about our coastal cities. About the only thing we know for sure is we don’t know enough when it comes to CC.
Yes Lainy, it blows my mind too! The vet believes the cat (she was an indoor cat) ate a lizard that ate a snail that was infected with the fluke worm. I keep wanting to make a connection between the cat and my mom because it’s such a incredible coincidence. Wouldn’t you have to eat raw fish that was infected with fluke worms to get it? I would think if the fish is cooked, it would kill the parasite. Mona
Mona, thanks for clarifying, now I understand. WOW! OMG! I am astounded at the Cat. That goes beyond any understanding, you blew me away. The only reasoning I can come up with is that your Mother ate tainted fish and gave some to the cat? Still beyond belief. I can’t wait to see what our Percy says about this one! I have noticed over the years that we get more patients from the Coastal areas than Mid AMerica. But that could also be they are the ones who sign on, we have no proof. Than again we have VETS who served in Korea and Nam. I am wishing your Mother well with all that I can and for you, Mona, be strong!
Oh, by the way, my mother’s cat died due to fluke worms in her liver. This was about two years ago. The vet was shocked because fluke worms are very rare outside of tropical areas. Weird that my mother would end up with a cancer that can be caused by this parasite. I mentioned this to my mom’s first set of doctors, but they brushed it off. They didn’t see a connection. Mona
Lainy, my mother didn’t want to travel, so we went with the Cancer Research and Therapy Center. They are affiliated with The University of Texas Health Science Center. My understanding is they are staying on top of the latest treatment options available. They were the ones that were finally able to diagnose her using Spyglass. The previous hospital she was in was unable to come up with a definite diagnosis. She started having symptoms in October and was not diagnosed until January. What frustrates me is there are so many doctors involved, and there seems to be a lack of communication. It’s especially upsetting when you run across an insensitive doctor. We have made it very clear to the oncologist that the hospitalist was rude and insensitive. He told us that the hospitalist does not make the calls, he does. He also apologize for the hospitalist’s comments. I know MD Anderson would have been the ideal place in Texas to go, but my mother was unwilling to travel.
Marion, I did ask the oncologist about cachexia. He says because her ercp and scans show no signs of cancer, he really doesn’t think cachexia is what’s going on. They are going to put a peg tube in her today. He says she has no muscle mass, and her body is virtually eating itself. He feels there is no time to waste. He assured me that the peg tube will definitely improve her nutrition status.
Thank you guys for your input. I will keep you posted. Blessings, Mona
Mona…welcome to our site. What an unfortunate and upsetting situation your sister had encountered! The lack of communication amongst the physicians tending to your Mom is disturbing. You might have to take some action by following up on all reports of scans and other medical procedures in order to make sure that the appropriate steps are taken. I suppose that the oncologist will now request for the scan results to be forwarded to his office. Will he then call you? Mona, I am wondering whether the physician has spoken of Cachexia to your sister.
Hugs,
Marion
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