1

(80 replies, posted in General Discussion)

Good luck, Rick!!!
Great news for you, and a good update overall on your situation.
Your experiences are always well- explained and very instructional. May it all go well and lead to more good news in the future!!
p.s. who is your main doc at Mayo???

2

(7 replies, posted in Pain Management)

Ashley,
This post promises to be very helpful to my mother some time in the future as she has hundreds of bone mets. Fortunately the gem-cis has for the moment stopped them from growing or multiplying, bit there will come a time when it stops being effective...
Thank you for sharing!!!

3

(15 replies, posted in General Discussion)

My mother had intermittent and manageable heartburn for the year before she was diagnosed (at age 76). I do remember that in her 40's she had either ulcers or heartburn- we all thought it was stress at the time.
But the complaint that brought her in for an MRI was a chronic pain in the back of her neck which turned out to be one of many metastic tumors in her spine and skeleton. A tiny tumor was found sitting on her bile duct- poorly differentiated adenocarcinoma, considered likely to be cholangio, possibly gall bladder cancer. It has been 8 months since the initial diagnosis- gem-cis has halted the growth and spread of tumors- We are so grateful. But she is on her second transfusion- the chemo is doing its thing on her blood.
Clearly she has had cancer for some time. There were no real signs WHILE she had whatever metastasized into hundreds of blastic bone mets.
She smoked from age 16-35. Generally excellent heath and diet (though not organic), not an exerciser but slim.
Who would have ever guessed?
God bless you all, and may someone benefit from the wonderful collection of anecdotes uniquely available on this important site.

4

(7 replies, posted in General Discussion)

Lance,
Radiation and Hyper-radiation like cyberknife (lots of posts on this board on that) are only for localized tumors. I do not know about "lesions".
She did have a series of local radiation treatments to a painful site on her neck before she started the chemo-- there were tumors at this site that were impinging on the nerves. It helped a bit. But they have said that was her only window of opportunity for such "palliative" radiation.
My mom is about to finish her second (6 week) round of gem-cis--- the first round of 6 weeks showed "stabilization"- no growth or multiplication of tumors. [Gemzar alone for 5 weeks did nothing to stop the tumors growth and multiplaication, btw.] But she has 100's throughout her skeleton (known since her diagnosis in Oct 2009), so she does not qualify for any localized treatments of any kind. She does have one very small tumor in the common bile duct. It would be easy for them to remove this surgically if she did not have all the mets in her bones, or if she had only a few other mets in any other locations. She does not have any tumors anywhere else.
She will have a scan in the next week or two, to see if the gem-cis is still stabilizing the cancer. If not, we are out of options, I am afraid.
So it seems that you are following the current "gold standard" for this type of cancer with good results.
I would check in on this site about cyberknife and such after you find out more from the docs about what these skeletal "lesions" are.
Best of luck!!

I will do a search on VERTEBLASTY, Gavin- thanks!

5

(7 replies, posted in General Discussion)

Yes, we understand that with a limited number of mets in a bone, radiation and super-radiation techniques like cyber-knife can be applied.
Unfortunately, my mom has mets throughout her skeleton- 100's. That is what they found when she was first diagnosed in Late Oct 2009. (Never any mets anywhere else except a small tumor on the common bile duct)
Has anyone else experienced this? Any treatments???
So far, she got no results from 5 sets of gemcitabine, then got stabilization from 6 sets of gem-ciis, now on second round of gem-cis, but no more options if this stops working...
Thanks all!!!!!!!!

6

(7 replies, posted in General Discussion)

Hi All,
Just putting out a new thread asking if anyone else has bone mets from cholangio? And if anyone is getting treatment for them? Yes, we do know about the bisphosphonates such as Zometa.
Thanks for any ideas or stories you have out there,
jackie

7

(7 replies, posted in Announcements)

Hi Marion,
Thanks for going on this trip and for the report!
We too are interested in the ABC trial info. Is it up on the Clinical Trials sites yet?
Thanks and hope you are well,
jackie
p.s. My mom is still on gem-cis but had to take a break for a while. Her side-effects are going up all the time, and she is feeling more joint pain and more nausea- from what, we do not yet know. It will be scan time soon... It has been nine months since her initial diagnosis of "likely" cholangio, stage 4 (bone mets)- that, in itself, is remarkable given the dire prognosis for this disease. We pray that the next scans continue to show no new mets and no growth in the tumor.

Linda & anyone else- I can email it to you. I did not want to put too much onto the message board. Just let me know. Or if you want me to post the whole text, I can.

Here is a well-written article by Malcolm Gladwell in the New Yorker demonstrating the utterly mind-boggling hunt for cancer cures. It is definitely worth reading.
http://www.newyorker.com/reporting/2010 … t_gladwell

Thank you Marion and Ashley- so very helpful!!!!

Marion,
Still wondering if there is a cytological test for tumor tissue for cholangio, specifically...
Given that she is Stage IV of one or two cancers (definitively not bone cancer), treatment options are very limited no matter what type of cancer is there.
But there may be different things out there to treat her with. Her local doc is pretty much a chemo deliverer, period. So we are looking for more opinions, hopefully without traveling for a visit first.
Who ARE the specialists in this cancer?? That is hard for me to discover.
My father and I will be at the CanLiv Conference on Friday. Hopefully,we will learn more about diagnosis and treatments for Stage IV, and maybe some of the docs there are experts...?
CanLiv Board-member Dr Sirica was very helpful to me over the phone in helping me understand there are even various sub-types of cholangio.
Dr El-Khoueiry of USC-Norris needs an appointment, as do the two MassGeneral docs on the board, Dr Xu and I forget the other name now.
I read the post about the Mayo Clinic application with dismay, but it is the same thing I have experienced. And closer to my Mom, Moffett in Tampa FL has seen lees than 10 cases in the last 10 years.
It is like a maze.

Looking hard!!

12

(3 replies, posted in Announcements)

Marion, A BIG CONGRATULATIONS AND A BIG THANK YOU  for your involvement in the steering committee.
Is there a place for some constructive criticism and suggestions from users of the cancer system?
i really feel that we need a much more coordinated effort among doctors to pool the patients with each of these rare cancers. There needs to be a national registry of who the patients are, and who the docs that know about these cancers are and what they offer.
Not only would this help the patients find the right care (diagnosis, treatment, trials, etc.) much more efficiently than they can they way things are now, but it would also allow for clinical trials to gather more patients.
The system now is totally random. It is amazing that such a life-or-death thing can be so hit-or-miss.
Please do report back on anything you can from this important work. 
And I cannot tell you how incredibly helpful this website, forum  and Foundation have been to us in my mother's experience. Without you all, I do not know ere we would be today. The Cholangiocarcinoma Foundation and its work really are a great model for advocacy.

Thank you so much for this, Marion.
My mother had mostly inconclusive, ie unsuccessful brushings and fine needle biopsies.
What tissues were successfully obtained (FNA only worked) from the GB/liver  area  and the pelvic bone were then stained. The stains then showed adenocarcinoma. It appears that the docs are "guessing" that it is CC because of the location of the mass and the absence of any other tumors anywhere else except in the skeleton.
My question is: are there any cytological tests for cholangiocarcinoma specifically?
And can adenocarcinoma from any other organ spread to the bile ducts or gall bladder?
We are still a little unsure if the diagnosis id correct.

I have a question about distension of the abdomen.
My mom has been on chemo since late Dec. She now looks pregnant. And feels quite uncomfortable. Her digestion from top to bottom is excellent (thank, you, stent!). Her blood values incl for the liver are all fine. She drinks a ton of water and eats a healthy anti-cancer diet. Her weight has been stable since December. Her tumor near the gall bladder is microscopic and she has no other tumors except in her bones. Not in lymph glands, either- just did new scans.
What could this be?

Is this a symptom of chemo? Is there anything that can be done?
Could this be "ascites"? From what I have read, if it were, that would mean her liver is deteriorating, but  wouldn't her blood tests reveal that?

Thanks to anyone in advance who can shed light on this mystery.
p.s. Her doc ignores it when she asks about it- he is focused on the cancer and seems to think she should not worry about it. But she is uncomfortable.

Revhed,
Looking  at a post of your from Feb 23- did you send the records to those three hospitals without a visit and get a response? Whom specifically did you send them to?
So far, we keep hearing from various places that the docs need to SEE my mom before they look at the records and/or tell us what they can do. And it is darn hard to figure out which people to send them to.
Any help here would be most appreciated.
My mom has bone mets thourghout her skeleton but no other tumors except one sitting on the gall bladder. So she unresectable, not  treatable with anything local, so officially stage IV. She is on gem-cis and has a stent-- seems to have stabilized  her, for which we are very grateful. But no one is helping us better understand what further treatments wold be available to her should the gem-cus stop working.
And we are a bit concerned about the diagnosis since the biopsies were all unsuccessful- they guessed at Sloan Kettering based on it being an adenocarcinoma located near the junction between the liver and the bile duct sitting on the gall bladder.
Anyway we are looking for expert help, and my mother does not want to travel around on speculation- we need to hear first that a doc think there is something to do.
So sorry to hear you are dealing with such a sad situation yourself. Prayers for you.
Thanks for sharing you experience at this difficult time.

16

(1 replies, posted in New Developments)

Foodie- this is very interesting! Thank you for sharing.

Thank you for sharing this, Gavin. It is very interesting.

Final Chapter to the Clinical Trial story:
I reached a "trial nurse" at USC-Norris, LA about the upcoming CC trial led by Dr El-Khouiery ( presenting at the May conference, btw).
My mother is NOT eligible because she has had prior systemic treatment (chemo) to her metastic CC.
It was good to be able to reach someone who could help me decipher the eligibility requirements listed on the clinical trial abstract.
I also asked about research on the small (less frequent) cancers: she said that docs do it partially because it can yield interesting info about the larger cancers.
As to use of off- label drugs and therapies, she said it is legal, but that insurance does not usually cover it.
She suggested that I try to get a referral to a doc with good knowledge of cc nearer my mother (who is in Fla) from Dr El-Khoueiry, via the USC-Norris referral department (we shall see if the system works!!).
While this may seem like bad news, the conversation was supportive, helpful and informative. I feel much more "plugged in" and hopeful that here may be a way for my mother to access some other treatments.

Next Story will be: getting a referral to a Creative, Compassionate and Careful doc with lots of experience with stage IV CC for a second opinion... If this story ever happens, it will be in a different section.

Hi Marion,
I have now talked to person at NCI hwo gave only very general help, and am still waiting to hear back from Dr El-Khoueiry's nurse-practitioner about the specifics of this trial.
Looking carefully over the eligibility requirements, one thing is looking very important- participants must not have had ADJUVANT or NEO-ADJUVANT chemo in last 6 months. I am not exactly sure what this means- my mother has been on chemo since Dec 24, 2009. It is her PRIMARY treatment.
Also, the many bone mets she has may make her cancer "UN-MEASURABLE."
And, obviously, her blood values could be off.
I am trying to pre-vet all this so we do not rile her up about all this for no reason. Her local oncologist is also a bit balky about things.
I think we may end up just trying to get access to these drugs off-label somehow... but it takes the right doctor to accomplish that. This is all so complicated.
[My mother refuses to travel around looking for help- it has to be a really good prospect to get her out the door and on the plane again... She  and my father live in Florida; I live in SF CA. She has already been to Sloan Kettering (in Nov and Dec) to get the initial diagnosis confirmed and the first treatment plan. She is on gem-cis-- will hear if it is working soon.
My father seems think that Dana-Farber has some good promise.
I have had a hard time trying to distinguish among the cancer centers' relative expertise on very advanced cases of CC. Ideally she needs help with the bone mets...]
Anyway, I always feel as if we are going around in circles!!!!!
Thanks to you for all your help and to all the others who post and share so much.
God bless you all.

Very helpful, Marion. The fact that it is not yet open is GOOD- gives us time to learn, apply, etc.
In Stage 2, do half the patients get nothing??

I have a feeling there is something wrong with USC-Norris' phone lines- I got through to his office from the USC-CARE number...
I have spoken to a number of people I have reached there- they are saying that my mother would have to see Dr El-Khoueiry... will hear back soon I hope, as the multi-site designation leads me to believe that may not be true.
Need to talk to him or the N-P about this.

Meanwhile, we plan to show this trial to my mother's current docs- maybe that will convince them to allow her to give one or both a try, if she wants that.

VERY HELPFUL, Marion, I cannot repeat enough.
Is there a good place for me to trace a story like this about investigating a clinical trial on the CC.org site so others can learn from this??

Thanks so much for this info, Marion. Am having no luck getting through on either of the phone numbers...!
1. Basic question:
2. Can patients ever use these medications/drugs even if they are not participating in a trial? Meaning, what is the situation with off-label use of drugs? How can a patient get this?
In January, we did ask my mother's Sloan-Kettering oncologist about these two drugs (anti-angiogenetics, if I remember correctly??)- and numerous others, older chemos, new things, all found in our research- he seemed reluctant to recommend any for her due to "side effects"???
3. Last, any basic tips on how to get into a trial???
Thanks so much!!!!!!!

22

(23 replies, posted in General Discussion)

Scraggles,
Hoping you and your Mom get some good moments each day. She is so lucky to have your support. God bless you and your family.

23

(5 replies, posted in Chemotherapy)

Marion, This is an incredibly helpful post and website! Thank you so much, for this and ALL you do.

24

(5 replies, posted in Chemotherapy)

Hi All,
Three months after she started chemo, and 6 weeks after she began cisplatin, my Mom's platelet count was too depressed for her to get her dose this week. This is no surprise. Frankly, we have been surprised that she has gotten this far with just fatigue and a tiny bit of extra hair shedding.

Question: has anyone had any luck with a more rest, better nutrition, anything else in getting the blood work back to normal?

God bless you all for helping, for caring, for patiently undergoing treatments.

Bill, Welcome to this site. It is filled with compassion and information! Your story is very intersting and inspiring. So thank you for taking the time and effort to share it with us.
I, too, am asking about your stent situation- you have had to change it many times. My mother had a "temporary" plastic one put in when she was first diagnosed in early Nov 2009. It needed to be changed about 6 weeks later- your description of symptoms of blockage were similar to my mother's.
They changed it to a metal mesh "permanent" stent. I am not sure I have it right now, that it is "permanent."
I was curious whether you have more permanent options available to you.
My mother's stent is saving her life, at this point. Without it, her local organ functions would have failed and/or she would have had a huge infection.
Surgery and other local treatments are unavailable to her as her cancer metastasized to her skeleton (nowhere else, though...)
Maybe you or others can talk about the different types of stents out there, and whether there are any that are "permanent."

God bless you and your loved ones. May you beat this devil. You are really doing so well!!!!!
Thank you!
p.s. My mother did decide to do chemo.  Her QOL so far, even on the toxic option with cisplatin, is very good. We feel terribly grateful that she is feeling quite well (just tires very easily) during what may be the final weeks, month, year of her life, if the doctors are correct. We are still waiting to learn if the chemo is attacking the tumors...