ashley
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Hi Cin,
Welcome to the site and very sorry to read about your dad. The cancer number you are talking about is probably the CA 19-9 tumor marker. Usually over 100 means malignancy. However, it has been reported on this site into the thousands and then there are people who have reported it under 100 and still malignancy. Bottom line it is just one tool used with other factors ( visible tumor, FISH staining, cytology, etc) to come up with the final diagnoson of CC. Also PSC patients can have higher CA 19-9 simply due to infection.
I’m sure more members will pipe in on your question. Additionally by the position of his tumor it sounds like it is a Klatskin tumor?
AshleyI have written a few times on this board asking about Haelan.. it’s a fermented soy and whether it is true or not there was a texan man name Sherman Sanders who claimed this cured him of CC> If you search under haelen all the info should come up. I do know that I read that SOY ESSENCE is very similar and very inexpensive compared to Haelan.
Merry Christmas to everyone..
ashley from ctOne more thing with the infection.. are you getting his blood results to track the white blood count?? I assume they are taking his count frequently. This will allow you to see if the infection is going away. Normal range is below 10.
Good morning,
I read your update on Brian’s site yesterday and had been thinking of him since it had been a while since it was updated. I’m sorry to hear about his infection and high bilirubin.Do they know where Brian’s infection is or what type? What happens when they grow the bacteria? Does he have a stent that is causing it? My mother was on Zosyn as well as an anti-fungal for infection ( diflucan maybe??). I ‘m not familiar with high bilirubin as my mother did not experience that but it would be a good question to ask to docs if the increase IS definitely related to the infection or not. Hopefully this is the case and then getting the infection under control will bring his bilirubin numbers down and allow him to get the chemo.
If you are looking for other alternatives – microspheres is available in Cary, NC by Dr. Kennedy. ( wake radiology). Unfortunatley I am guessing this may not be an option until the bilirubin comes down? It has proven successful on shrinking single tumors; however, I’m not sure of the impact if the cancer has already spread.
I’m hoping more members on this site can help you with the bilirubin questions. Sending good wishes.
Ashley from CTI LOVE your attitude!! Hopefully one of the future PET scans will not find LEROY either – you never know.
Good luck on Thursday.
AshleyGavin,
I am so very sorry to read about your Dad’s passing. My deepest sympathies to you and your Mom. You are a wonderful and caring son to have been there for him throughout this painful journey.
You are in my thoughts,
AshleyKris,
I hope your docs give you the response you want on Thursday. I will be thinking of you.If I understand this correctly, the chemo removed cancer in your lymph nodes?? That is a very good thing!!! Please put the positve spin on this… your cancer is still contained.
I have a question and maybe I have not been paying enough attention, but most members talk chemo only. Has anyone done radiation as a treatment?
Ok- welll hang tight. We’re all thinking of you.
AshleyToniann,
Sorry – I was mistaken, I thought you were in NY. The Mayo at Jacksonville comes to mind first but there are others on this board who are familiar with doctors on the west coast of Florida as well. I think you can do a search on this board and find a listing??
Good luckI’m not sure how this happened but the post about Sloan and Mt. Sinai was my response but it posted with another member’s address?? Interesting!
Anyway I am just happy a large NY hospital is taking a step forward with this disease. ANY extra coverage given to the treatment of this disease
(transplant related or not) will hopefully increase the likelihood finding a cure for every CC patient.
AshleyHi Gavin,
I think about you alot and everything you are going through with your dad. I’m glad to hear his appetite seemed to be back and he enjoyed time with friends. Something to put a smile on your face!
Stay strong,
AshleyPerfect timing. I JUST received an email last night from DR. Myron Schwartz at Mt. Sinai in NYC. He was very helpful when I was researching resection vs. transplant for my mother this past summer. I emailed him again regarding my mother’s sucessful transplant at the Mayo. Here is part of his email response:
“We have decided to establish a transplant protocol here in NY, a collaboration between Memorial Sloan-Kettering and Mount Sinai wherein patients will receive the neoadjuvant treatment at Memorial, and the transplant (usually living donor) at Mount Sinai. “
I don’t know how soon this collaboration is starting, but if you are already at Sloane, it would not hurt to ask them about this joint venture. I was so happy to receive Dr. Schwartz’s news because this opens up options for CC transplants in the Northeast
Ashley
Hi Doug,
I’m so sorry to read about your mother. I hope you stay on this board and can find some comfort to your pain – many nice people going through the very same thing. While my mother is still fighting this battle, I understand the roller coaster you must still be on as my mom was also diagnosed this past June.Hang in there
AshleyMy mother had what was called a Klatskin tumor prior to her transplant. I’m still confused myself on your question because when they staged her to see if it spread ( would disqualify her for transplant) they talked about testing lymph nodes and the peroneium (sp) or abdomen wall area so I am not sure about the actual liver itself. I also know the tumor must be under 3CM.
I am obviously not a doctor, but during my research on this I find that most people we have met or read about in this protocol either have a Klatskin tumor or cellular activity ( high CA 19-9) with no visible tumor. A klatskin tumor may not be considered ‘in’ the liver because it is actually in the bile duct where the two ducts bifurcate.
Sorry I can’t help you more on this. If you are not near one of the 3 Mayo sites, there are other hospitals doing the Mayo protocol. Barnes Jewish ( St. Louis), Chicago, U. of Nebraska, and Utah are a few that come to mind.
Best Wishes
Ashley
