ashley
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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 CTRick,
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…
AshleyRick,
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!
AshleyHi 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
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 CTHi Leo,
Welcome back from your trip! We’re all so hopeful for you – glad your news was so positive from the oncologist today!
AshleyDianne,
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 healthyAs 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
AshleyYou 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.
ashleySo glad to hear the ‘old’ Kris is back and ready to fight again! Sounds like a great PLAN!!!
Keep us posted…
ashleyMarion – I just created a little library – I re-posted my posting as well as one from Wayne and Raye under ” New Developments”. Thanks!
On a side note, my mom had her 4 month post transplant appt this week back at the Mayo clinic. After 2 days of solid testing ( kidney/liver/ct scan/etc)she met with the doctor today and she is STILL cancer free and they are very pleased with her progress. She was diagnosed with a 3cm Klatskin tumor June 2009 and spent 4 months in the transplant protocol along with my brother ( her donor). Here we are almost a year later and aside from slightly swolen ankles and a dozen or more pills she will now take daily for the rest of her life, it amazes me that she is pretty much back to normal. We are so very thankful that she was able to be sucessfully transplanted.
I just want everyone to be aware that this MAY be an option.
AshleyI’m also copying this posting from Wayne Parsons from December 2006. (And as an update – Sloan Kettering has partnered up with another NYC hospital and they NOW do liver transplants for CC).
Everyone with intrahepatic cholangiocarcinoma (Klatskin) should realize that there may be a cure for them. They call it Neoadjuvant chemo/radiation followed by Liver Transplant. Do not accept dire predictions from your doctors. Even at Memorial Sloane-Kettering Cancer Center the doctors did not even tell Valerie about this treatment. The reason? They don’t do it. You cannot take your doctor’s negative opinion about treatment as being true or even well-informed. My wife died of cholangiocarcinoma earlier this year. We learned about the liver transplant protocol developed by Dr. Steven Rosen at Mayo Clinic in Rochester MN that was having great success. I found it on my own. None of the many doctors who saw valerie mentioned it. For Valerie it was too late when she found it because she had to go through a lengthy pre-transplant protocol (approximately 7 months). Her cancer metastasized before she could get a liver transplant. For others the treatment hopes to achieve an 80% cure rate. Mayo started the program in the 1990’s and published promising results in 2002. Then other Centers strted doing the protocol, notably at the University of Nebraska and at Barnes-Jewish Hospital Sitemann cancer Center in St. Louis, MO under the famous liver surgeon William C. Chapman. Other cancer centers are now doing this procedure. Look up clinical trial identifier at http://www.clinicaltrials.gov and Identifier: NCT00301379. Here is a quote from a leading Mayo Clinic paper published on cholangiocarcinoma that discusses this treatment option:
“LIVER TRANSPLANTATION
Liver transplantation without neoadjuvant therapy should
be avoided in patients with hilar cholangiocarcinoma, with
long-term patient survival in the range of 28% at 5 years
and a prohibitively high recurrence rate.38 Results are
equally disappointing with incidental tumors.39,40
The Mayo Clinic in Rochester, Minn, developed a transplantation
protocol for patients with hilar cholangiocarcinoma
or cholangiocarcinoma arising in the setting of sclerosing
cholangitis. The protocol excludes patients with
intrahepatic peripheral cholangiocarcinoma, metastases, or
gallbladder involvement. Patients are initially treated with
preoperative radiation therapy (40.5-45.0 Gy, given as 1.5
Gy twice daily) and fluorouracil.41 This initial treatment is
followed by 20- to 30-Gy transcatheter irradiation with
iridium. Capecitabine is then administered until transplantation.
Before transplantation, patients undergo a staging
abdominal exploration. Regional lymph node metastases,
peritoneal metastases, or locally extensive disease precludes
transplantation.
At the time of the last published review, 71 patients had
begun neoadjuvant therapy at the Mayo Clinic since 1993,
and 38 (54%) had favorable findings at the staging operation
and subsequent liver transplantation.41 Initially, 40%
had findings at the staging operation that precluded transplantation.
With adoption of endoscopic ultrasound-directed
aspiration of regional hepatic lymph nodes, most
patients destined to have occult metastatic disease are detected
before administration of neoadjuvant therapy. Currently,
less than 15% will have undetected metastatic disease.
The 5-year actuarial survival rate for all patients who
begin neoadjuvant therapy is 58%, and the 5-year survival
rate after transplantation is 82%.41 These results exceed
those achieved with resection even though all the transplantation
protocol patients have unresectable cholangiocarcinoma
or cholangiocarcinoma arising in the setting of
primary sclerosing cholangitis. These results are also comparable
to those achieved for patients with chronic liver
disease undergoing transplantation for other indications.
Hilar cholangiocarcinoma, once a contraindication for transplantation,
has emerged as an indication for liver transplantation
when combined with effective preoperative therapy.”The paper is entitled: “Treatment Options for Hepatobiliary and Pancreatic Cancer” Mayo Clin Proc. 2007;82(5):628-637
Results are very encouraging if the patient can make it to transplant without metastasis. I will post another note on how to destroy Kaltskin tumors without surgery (Y-90 microspheres used in a 2 hour outpatient procedure destroyed Valerie’s Klatskin tumor but the cancer had spread and it was too late). If we knew of that treatment before Valerie started on the liver transplant protocol I think she would have been cured and alive and well. This crushing experience could have been avoided. Northwestern University, Wake Oncology and the University of Utah are using Y-90 microspheres successfully against Kaltskin tumors. Doing that as soon as a patient is diagnosed and then doing the chemo-radiation protocol for a short time and transplanting the liver is the best scenario. The trick is talking the doctors into putting that sequence together.
If anyone has questions they can contact me privately at 808-753-0290. I am in Hawaii.
Wayne Parsons
wparsons@hawaii.rr.comI’m copying an earlier post from Raye re: transplant
I wanted to remind those who have any questions on Klatskin tumors and information on liver transplant therapy as a solution that they can e-mail me anytime or phone me at 1-269-598-1861.
So far I’m a CC survivor, and for those who don’t know my history I am a Klatskin tumor survivor and liver transplant patient. As of March 20th I celebrated both my 34th wedding anniversary and the second anniversary of my liver transplant. My CA19-9 marker is 40 and blood work and kidney functions are all normal. I’m very fortunate to be here because of an early diagnosis of the tumor and excellent care at the Mayo Clinic.
For those of you in Canada I can help point you to several US centres for treatment such as I received and also the McGill University Hospital in Montreal Quebec who has now been appointed as a centre for CC in Canada.
Call anytime.
Raye
Great news!
I do have advice for you… After my own families ordeal I stay on this website to try to educate on the transplant option. ( thank you Wayne Parsons and Raye Field from this board for telling me about this option) Please consider looking further to see IF transplant could also be an option. You want to have as many options as possible! Usually once surgery is done transplant is no longer an option so you need to know all your options up front. I am advising you mainly because it sounds like transplant qualifications for your dad are met initially based on the info provided ( under 3M and no mets). However, you have not mentioned your dad’s age or medical conditions outside of this cancer. Just something to think about. Also remember your new Doc may know little about transplant only because it is not offered at his hospital. Mayo, U of Neb, U of Utah and others offer transplant. I have to correct Marion ( sorry!) but resection is NOT the only chance for a cure. Statistically speaking transplant is the best cure IF you can make it through. ( reoccurence is always possible but less likely with transplant vs. resection). Again, only a small percentage can qualify for transplant so please look into this option.For my mother, a NYC surgeon thought she was resectable when Yale did not. Then we sent her to the Mayo and they said she could do the transplant. I hope your dad may potentially have two options.
Here is an interesting excerpt from the NYC surgeon in an email he sent me last summer:
” It is a long road to transplant. The ones who make it through the entire process- chemo, radiation, waiting, the transplant procedure- have proven themselves through trial by ordeal, and it is indeed true that that group does well; when you figure in all those that drop out along the way, resection starts to look a lot better. It is really a case of rolling the dice- going for the big jackpot knowing that the odds are less that you will hit, or doing a resection that, while somewhat less-likely to be curative than a transplant, is considerably more likely to actually happen since it is just scheduled and done. I’m not sure what I would do. The trouble is that you have to make a choice and live with it- once you commit to one path, it is rarely possible to turn around and head in another direction”
so – I am thrilled to hear the resection news but just wanted you to be informed that transplant may also be an option.
Keep us posted!
ashleyHi Andie,
Welcome and sorry you have to be here. I’m not sure how old your dad is, but my mother had a sucessful liver transplant last fall for CC. It is called the Mayo protocol and several hospitals in the US follow it. I know Ireland does also.there are many criteria, but if your dad is not too old ( my mom is 67), in good overall medical condition, tumor under 3CM ( usually caught in the earlier stages) has NOT spread to lymph nodes or other organs, please consider looking into this option.
You can do a search for transplant on this site or go to the Mayo website for more info. Your current doctors may not be familiar with this protocol. Our doctors locally did not tell us it – my point being that second opinions and research on your end can prove beneficial. You have come to the right place
Feel free to email me if you have questions.
Ashley – Niantic, CT
