sharpeilover
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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!!!!!!!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.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…In Nov 2009, at age 76, my mother, a generally healthy person, was found to have about 20 blastic tumors up and down her spine during an MRI to see why her neck was hurting her so badly.
More imaging resulted in the finding of a mass on her central bile duct and gall bladder.
Her local internist referred her locally to Dr Frederick M. Weeks of Vero Beach, FL.
An endoscopic brushing inside the bile duct and a needle biopsy if a bone tumor failed in a local facility.
My mother was able to get an appointment 4 weeks later to see Dr Manish Shah in the GI Dept of Sloan-Kettering in NYC, at the recommendation of Dr Weeks who knew that this was a cancer beyond his expertise, usually incurable and virtually untreatable. The questions were: is this gall bladder/ bile duct cancer, and is the cancer the same in the bones? Based on the answers, we would get a treatment plan from Dr Shah.
My mother had two needle biopsies (one around the gall bladder and ducts and one in the spine) in two depts a week apart two weeks after her initial consultation- Sloan Kettering is a very busy place and it is very hard to get appointments. The conclusion was “probably” cholangiocarcinoma, and bone mets were “likely” from the same cancer.
Dr Shah agreed with my mother’s desire to be treated in Vero Beach while living at home. He came up with a treatment plan and forwarded it to Dr Weeks, who is now administering chemo. She started her chemo (finally!) on Dec 24, 2009.
He refused to offer any direction with changes in her diet or additional supplements to enhance her chances of getting the tumors and supporting her immune system. “Don’t make any big changes. Just be healthy.” Hard for us all to hear as we were reading the Anti-Cancer Diet book, and take numerous supplements ourselves…There is no continued conversation between the two doctors. Both are very pessimistic (“realistic”, in their eyes). They just see it as a matter of time, and even questioned whether she should go on the second more toxic chemo (gem-cis).
It now now four months since her diagnosis.
She is feeling quite normal and has been on the more toxic regimen for about a month.
We are grateful for the good quality of her life. But it is as if she really is not that sick and never has been. But no other treatments seem to be available due to the multiplying bone mets. All the doctors say is that there is nothing else they can do, and that we need to get a grip.I and my father have TORN UP THE INTERNET to find more treatments. We even asked if Dr Shah if she should add something like an anti-angiogenetic or some other third chemical (directed to a specific pathway of cancer) to her chemo cocktail. I sent him a long list based on cc trials and pancreatic cancer treatments, which seem to be the basis for many cholangio therapies. He just wrote them off, saying that they cause too many side-effects. I did not understand that- I thought targeted therapies caused fewer side-effects than chemo.
My father is horrified at all this. But it is very hard to believe she is dying. We feel bad just “giving up”.
Hope this helps others in some way.
Take care, everyone.
Thank you.Margaret,
I do hope I did not come off as critical. I am just wondering how best to use these names. My mother’s case does happen to be pretty “hopeless”, so knowing more than just the name of the doc and the hospital would help. But I realize we are unique. We have not been offered much after quite a bit of searching. I really feel that having over 5 (my mother now has at least 40) bone mets is a death sentence, with chemo being the only option offered. But she is feeling quite healthy, doing 90 percent of what she wants. It is just so strange to think that she is going to die quite soon. That is why we have some cognitive dissonance- can’t SOMETHING more effective still be done as all her functions are still very good???? Most of her body is successfully resisting this evil cancer.Her first round of gemzar resulted in no side effects except for some fatigue, flat (still high) tumor markers, and a doubling of the mets in her spine from 20 to 40.
Everything else is unchanged. So she is on gem one week then gem-cis the next for 3 months, one month now done. Thankfully no side-effects except fatigue (quite remarkable.) No idea what else is happening, ie with the cancer.
Won’t know for a while.
Supposedly, the primary tumor is not any larger than when diagnosed in early Nov 2009, however.
She has never had any symptoms of trouble with the bile duct or liver, etc.
She has had her radiation on one painful tumor in the neck area. The window for radiation on her spinal mets is closed (not sure why). She has Zometa every month with her chemo. That is all she is eligible for.The big question is: would a doctor anywhere be willing (or legally able) to try anything else on her? Cyberknife is a tumor by tumor thing- she has too many in her spine for that. Local surgery would be a great option, if only she did not have the mets in her spine. She apparently has NO OTHER tumors, not in the liver, no where.
Anyway, we are making sure she is enjoying her life, is comfortable. We just feel so strange “giving up” like this. Our understanding is that a successful result on average with the gemzar is only a few extra months, hopefully side-effect free.
God bless all of you for your inputs, your listening, your advice. And may each of you find some light in your troubles.
Margaret, if you prefer to put this post on another board, feel free.
We even wonder if she really has cholangio- bone mets seem pretty rare, esp if there are no other tumors beside the primary. Or if she has two cancers. Anyway, the biopsies at Sloan-Kettering resulted in “probably cholangio/all same cancer”. MRI shows her primary tumor is sitting on the central bile duct. The local doc is “assuming” it is intrahepatic. The only way they got cancer cells was with a needle biopsy- the endoscopic brushing on the inside the central duct failed, and the local doc thought it looked smooth- again not usual way cholangio presents, if accurate. I am now understanding that there are really no absolutely 100% certain diagnoses with cancer. Cell differentiation is the other factor. So that is it.
I will post about the docs she has seen next.
Hi Marion,
Seeing these names and hospitals listed is helpful, especially for geographical guidance.
However, should I assume that people are sending in names ONLY if they were happy/satisfied with their experience??Also, maybe only I care about this since my mother is stage IV (considered non-resectable due ONLY to bone mets & NOwhere else), but I also would love to know what type of treatment these gave, and what stage the cancer was, and how it worked out.
We are “beyond geography”, hoping to find someone who is willing to take a chance with a very advanced but healthy patient by trying different things.Diagnostic second opinions, pain management of bone mets, gall bladder surgeries, etc are all very different aspects that we could also be touching on, in addition to expertise in administering chemotherapy.
I am hesitant to even list my mother’s physicians, as they have drawbacks in certain ways. But maybe I should, with a short description of our experience???
Please advise. Many MANY thanks for doing this and so much else!!!
devoncat,
Thank you so much for your very well-informed and educational response. It is interesting that the targeted therapies can affect, possibly, more than one type of cancer, so to speak, as classified by their similar chemical pathways, possibly resulting from similar genetic mutations.
Too bad research is so expensive- it really keeps the process from going faster and from including the rarer cancers…
My family appreciates this forum and your help.Robin, your story is worth a LOT to me and others in this crazy world of ours. Thank you for taking the time to share your experience as a patient with a rare presentation of an already rare cancer.
Why did they stage your cancer as a 4?
My mom has oodles of bone mets. Her story is not unlike yours.
In Nov she was given an MRI on her neck for some icky pain that would not go away with PT or meds. Voila- numerous tumors, all up and down the spine. Next a full scan revealed a mass on a bile duct sitting on the gall bladder. Stent was inserted into duct. Second set of biopsies revealed that it was primary CC, stage 4, no other tumors.
We are unable to get her any treatment besides chemo due to the dstant mets on the bones. There are no tumors visible anywhere but the primary and on the bone. My mom starts cisplatin with her usual gemcitabine next week- those bone mets keep growing and multiplying. She has a monthly injection of Zometa. She uses pain meds just for sleeping at this point.
I am researching all the various chemos for cholangio, and also treatments for bone mets. We shall see if any of her docs will go out the box for her.
God bless you. May the pain meds keep working for you.
p.s. You are a better typist on Iphone than I am on the Mac!!!!!Have you already tried cisplatin with the gemcitabine, Rick? Just wondering because that is what my Mom will start next week.
I am so sorry to hear you had such a bad reaction to something that was working.
Thank you for sharing. I hope you get an answer from someone else soon. Take care!!
