ashley
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Hi Marion,
Yes the protocol in Ireland is for CC. Also, I can’t remember exactly but someone I spoke with who was in the protocol here either had their doc here train the docs in Ireland or vice versa.. anyway that reminder led me to google it and sure enough, St. Vincent’s does the transplant for CC.
Ashleyi believe St. Vincent’s hospital in Ireland follows the Mayo protocol. I’m guessing there are other locations in Europe also..
ashleyHi Betsy,
My mom had her transplant without ever having a needle biopsy. ERCP brushings revealed ‘suspicious’ cells but nothing definitive. In our case the Mayo’s protocol diagnosed CC with only the following:visual tumor on CT scan
CA 19-9 blood test
FISH stainingBelieve me, after transplant when they then biopsied her liver and found no tumor due to necrosis of the tumor from chemo and radiation, I sat there and wondered ‘what if she never even had cc?”.
My initial statement did not mean that every single needle biopsy causes seeding. However, the chance of seeding increases with this procedure. I have followed at least two carepage stories where patients were accepted into protocol to then be removed because the cancer spread like a dotted line exactly where the needle woud have been removed ( and the biopsies were done with doctors prior to the patient ending up in the Mayo protocol). The problem is that whenever someone gets a potential diagnosis the biopsy is what we have been condititioned to believe is what we need first for the malignant/benign diagnosis of any cancer. I would assume the ERCP brushings are fine because I believe these samples are what can be sent by your doc to Mayo for the FISH staining ( not done at most hospitals).
Unfotunately, tumors in this area are rarely benign. The one type that is benign can be treated with prednisone and is detected with a blood test. I can’t recall the test ( IF-4?) but it was the first one they gave my mother Day 1 at Mayo in the small small hopes it was benign.
Hope this helps. I’m glad to see this thread is still being discussed – and I hope it can help people who are just hearing of CC for the first time.
Best of luck,
ashleyHi Staci,
I have to disagree on your statement about Mayo chosing to resect over transplant. Mayo pioneered the transplant protocol for CC. They simply have a different ( more strict) criteria for their protocol, which I am certain does not equate to them chosing resection over transplant. The main factors making the determination are not risk/reward but rather they are dependent upon where the cancer is located, size, and metasticising. Generally they transplant for Klatskin tumors which are located in a the bifurcation of the ducts where resection is not an option. I’m so glad to hear that some NY and PA surgeons are now considering transplant after resection : -). Aggressive treatment is definitely what CC needs!
Best of luck.Ashley – daughter of 67 yr old mother who had her live donor transplant for CC 11/09 at Mayo – Minnesota.
Two cheers for Blue Cross!! Cathy – Glad to hear you had a similar positive experience with them as far as covering the transplants.
AshleyHi Aggiemom,
Welcome to the site.. I agree that you need to get to a large cancer center – where are you located?? The fact that you have a visible mass on a CT scan and an elevated CA 19-9 is concerning but a combination of factors is what diagnoses this type of cancer. I know the Mayo will not do needle biopsies for fear of seeding the cancer, but they do test via FISH staining, which is another indicator for Cholangiocarcinoma. The combination of these 3 ( Fish, visible tumor and high CA 19-9) gave us the positive diagnosis for my mother.Best wishes to you and please keep us informed about your second opinion.
Ashleyhello Michael,
I’m sorry to hear what you are going through.
I would recommend Dr. William Jarnigan at Sloan. He is a liver surgeon with experience in CC.
Best of luck.
Ashley from CTI think if you ask Mayo to internalize the bag it will make a huge difference. this is the first thing Mayo in MN did with my 66 yr old mom when we went for a second opinion. It made a world of difference as what I think much of what you are discussing ( tired, no energy) is resulting from depression and not being as mobile because she has this bag hanging off her side.. psychological!!!!
You are in the best hands at any of the Mayo locations as CC is their expertise. I wish your mother in law the best.
AshleyGood morning.
I’m sorry to hear about your husband. Before you schedule surgery, I would urge you to get an opinion as to whether or not he could be in the TRANSPLANT protocol for this type of cancer. Many hospitals do not offer this protocol so my advice is to get to one and get their opinion. Usually once surgery happens a transplant cannot be done. My mother had her transplant at the Mayo in Minnesota and is cancer free. Of course there is always a chance for recurrence with transplant, but the odds are MUCH LOWER than recurrence after surgery alone. If your husbands tumor is under a certain size and has not spread, he may very well be a candidate. I just read on this site earlier this week of another man around your husband’s age going through the protocol at Jacksonville Mayo.. Utah, Nebraska, Barnes in St. Louis, Mt Sinai and Chicago are a few of the places that come to mind that offer transplant. Please look into this option.. if your current location does not offer this protocol.. they may not have told you this is an option!!!
AshleySallyPa.
I’m very sorry to read about your sister. Since she is in PA, DR. Gamblin at UPMC ( U Pitt) medical center comes to mind. If you would like to email me ( I don’t see your email listed to forward you the info), I can provide more info to you on how to reach him. I initially emailed him because I had read about another member of this site whose husband was operated on by Gamblin when other docs would not. I later learned through this site that he has done brachytherapy, what seems like a promising treatment for CC that is normally only seen as part of the mayo transplant protocol.. so I definitely think he works outside the box and would be great for a second opinion.
Ashley
ajackson0@snet.netHey Rick,
Thanks for sharing this great news!
I wasn’t aware either that theraspheres radioembolization is a form of brachytherapy. When my mother had her liver transplant for CC the path report said there was no tumor. It was necrotic. Since she didn’t have much chemo it had to have been the brachytherapy that did the job. I’m hoping the same for you.My best,
AshleyHi Rick,
I think I mentioned to you on a recent email that my husband has sold pain meds for years ( fentanyl and oxy). He told me that your dose can be pushed up until side effects limit the dose ( ie: too much sedation), but basically you should not be concerned with becoming too tolerant. He says you can put on up to 4 of the 100 mcg patches at one time ( if your doctor allows (of course) in increments of 25 mcg) but then at these higher levels someone would normally be advised to switch over to oral meds like oxycodone for ease (instead of sticking several patches on your body). (A 25 mcg patch is equivalent to 30 milligrams of oxycodone in a 24 hour period). Another option is pill form Fentora to use for breakthrough pain with the fentanyl. It is supposed to get into the system faster than morphine or oral meds because it is absorbed through the cheek as opposed to your GI track.Email me if you have more specific questions – we will try to help as I ‘translate’ what my husband tells me!! I wish you the best on your trip next week. Very happy to read on your caringbridge page today that you will be flying with a non-profit company.
Keep us posted.
AshleySteve and Nancy,
I think the likelihood of having a whipple is greater, but the surgery is one of the toughest for a patiernt ( from reading posts on this site). The reverse with the Klatskin tumor – based on where it is located, surgery cannot always be a sure bet since the tumor is near the bifurcation of the bile ducts and can grow into vessels and duct walls making it harder ( and sometimes impossible) to resect. I urge you to get many opinions about resection.. what many docs may not touch one doc may see as a doable surgery.Good luck on your upcoming appointment.
Ashley
