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. :-)
Ashley

i  believe St. Vincent's hospital in Ireland follows the Mayo protocol. I'm guessing there are other locations in Europe also..
ashley

3

(54 replies, posted in In Remembrance)

Lainy,
I'm so very sorry to read about Teddy.
Peace, Love, and prayers to you all.
Ashley

4

(21 replies, posted in General Discussion)

Hi 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 staining 


Believe 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,
ashley

Hi 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. :-)

6

(37 replies, posted in General Discussion)

Kris,
The third time is a charm!! Good luck on your surgery.. Sending my thoughts your way....
Ashley

7

(12 replies, posted in Insurance)

Two cheers for Blue Cross!! Cathy - Glad to hear you had a similar positive experience with them as far as covering the transplants. :-)
Ashley

Hi 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.
Ashley

hello 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 CT

I 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.
Ashley

11

(9 replies, posted in Introductions!)

Good 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!!!
Ashley

12

(32 replies, posted in Introductions!)

SallyPa.
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.net

13

(80 replies, posted in General Discussion)

Hey 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,
Ashley

14

(7 replies, posted in Pain Management)

Hi 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.
Ashley

15

(28 replies, posted in Introductions!)

Steve 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

16

(9 replies, posted in Introductions!)

JC,
I'm sorry to hear about your mother.
A small percentage of CC patients are able to be transplanted. There are strict criteria for the protocol ( age, tumor under 3CM, no mets, good health otherwise), and having a newly diagnosed family member, I encourage you to see if this is an option. My mother is a CC survivor because of the Mayo transplant protocol and I was made aware of it on this website. Best of luck to you and your family.
Ashley from CT

I'm so proud of you both!
Ashley

Rick,
Can you call the drug company yourself?? I would think that could be even more effective AND I can't see why they would not offer to put you on it. I've mentioned on earlier posts that this happened with a drug call Davanat.. I called the drug maker in Massachusetts and the CEO returned my call and on his message said he would work with my mother's doctor to get her the drug if the doctor agreed. I have a good feeling that the drug company will come through for you.

Good thoughts coming your way...
Ashley

19

(30 replies, posted in General Discussion)

Rick,
I know you are dissappointed over the news of the tumor - it amazes me how much reading scans seems to be an art and not a science as one would expect.  Keep your head high.. Like Gores said ( I think you mentioned this on your caring bridge page) you still have SEVERAL treatment options. You were concerned over your rising CA 19-9 before heading to the Mayo - so maybe this trip all happened for a reason to get you onto a new treatment and get the Mayo docs back into the mix. I have not heard of this everolimus chemo - but I hope your ins. covers it. Is it new?? I think of you often and hope once you switch treatments you can  see your stabilizing levels trending downwards once again. :-)

Ashley

Hi Rick,
the several times we flew from Providence to Rochester, MN the flights were in the $600-$700 range.. we never found anything cheaper into the area. This weekend you can fly Detroit to Minneapolis for $606 round trip on Southwest, which is better than $1,000 but you have to take an hour shuttle to Rochester. Southwest is good because you can change your flight with no fee ( if avail). We flew a lot on American directly to Rochester because they have a special services ticket for Mayo patients. While the tickets are not any cheaper, you can call and also change them as many times as you want without a fee. I think I read your are going this week? Good luck to you for the ERCP- you are in the best of hands at the Mayo!
Ashley

21

(28 replies, posted in Introductions!)

Hi Steve and Nancy,
Sorry to hear about your experience over the last weeks. I'm glad you are getting a second option because as you have probably recently learned this cancer is somewhat rare and you need to make sure you have an experienced doctor.

As for the CA 19-9 it is a simple blood test. Elevation over 100 is normally considered suspicious. However with that being said, I had read stories of family members with numbers under 100 who are still very sick. My mother's was almost 400 when she was first diagnosed with a 3CM non-metasticizing tumor. ( and btw - feel free to be pushy and ask for this info). Others have had their markers in the tens of thousands range with no initial sign of a visible tumor ( the cancer was in cellular form). Generally the marker does seem to have a direct correlation to the progression. Right now there are several board members currently having chemo who have had their marker numbers reduced significantly due to their treatment. However, this one marker is only part of a collection of tools used for diagnosis, etc. 

The diagnosis is usually centered around several indictors, such as the CA 19-9, visible site of a tumor on a scan, FISH staining of the ERCP brushings, history of PSC liver disease, etc).

Unfortunately the downward progression ( from what I read on caringbridge and various carepages,etc) seems to take the form of high billirubin ( failing liver) levels that do not allow the patient to continue with chemo. You can find this type of info under a separate section of this board dedicated to these specific types of questions.

Glad your are headed for the second opinion. Please keep us posted as we are hoping the best for Nancy.

Ashley from CT

22

(7 replies, posted in Introductions!)

Hi Gail,
Sorry that you had to join this site to begin with, but very hopeful to hear your husband's news that the tumor was small and that it was removed through a Whipple surgery with clear margins! Yeah!! I've been on this site for almost a year and my advice would mirror what Jen said earlier. Please get a second opinion regarding post surgery chemo, etc. It seems to be more of the norm for this cancer, with or without clean margins. This is a tricky cancer and recurrence is unfortunately very common - even in cellular form that is not visible yet as a tumor. I would assume your husband will also have frequent blood work and his doctors will be trending his CA 19-9 cancer markers for further insight. If you let us know where you are located someone can suggest a hospital/doctor otherwise you can also search the directory yourself for a listing.

Best wishes to you and your husband,
Ashley from CT

Hi Leo,
Welcome back from your trip! We're all so hopeful for you - glad your news was so positive from the oncologist today!
Ashley

Dianne,
Do you think your father could qualify for the transplant protocol? that is the Mayo's speciality.

Here are a few criteria:

tumor under 3CM
no mets
mid 60's or younger
otherwise healthy

As for surgery, we found different docs who looked at my mom's scans. some said they could do surgery some said no. that's the weird part - you have to go out and collect opinions and they never seem to be the same. I sent my mom's scans to many docs.. some docs emailed me, some called, some we needed an appt with - they all seem to be different.  I have found through this board and our experience that usually surgery or transplant is what you would aim for first ( or sometimes chemo can shrink the tumor first to allow surgery). After that there are many other options: chemo/microsphere/pdt/rfa/brachytherapy/radiation, etc.

I'm assuming a Mayo deposit would most likely be reimbursed later by your insurance? I know Raye paid for his transplant initially out of his own pocket because of the insurance lag being outside the US and he needed to get the protocol started. I believe he was then reimbursed once it was approved.
Good luck
Ashley

You may want to look FISH staining if this is not what you already had??
( not sure) . YOu can google it - my mother was positive for POLY cells vs. mono cells ( trisomy 7, I think). I know brushingscan be sent to the Mayo for FISH analysis because not all hospitals do this testing themselves. Also how is the CA 19-9 reading? Not sure if both types of cancer can be identified through these numbers. Unfortuantley CC is determined by a combination of tests, namely CA 19-9 ,FISH staining, brushings, in combo with a visible tumor. (although  some CC is cellular with no tumor).  Normally a needle biopsy is not done as it has been known to seed the cancer.     

Lastly, not sure where you are, but the Mayo has a branch in florida as well as Arizona and Minnesota. the application process you read was unfortunate but I think it may have applied to a patient from Canada? We called Minnesota , got an appt and were never asked for any $, period.  I know others on this site have been in contact via email with doctors there but even it you can get an email address you still have to have a doc send the brushings. 

So, I would think your doctor could contact MAYO and send out the brushings for FISH staining and this will help you narrow your diagnosis? I can understand your frustration - hang in there.
ashley