Recovery
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Kathy….I am glad to hear clarification of Dr. Choti’s comments. He and many other physicians treating CC are pushing hard for increased for this cancer. Dr. Choti chairs the North American Hepatibiliary Task Force for Clinical trials in which I represent our cancer on behalf of the Cholangiocarcinoma Foundation. Although, he is not a board member of the Cholangiocarcinoma Foundation, Dr. Choti is one of our stronger supporters. We met up a few days ago at GI ASCO for the mandated “Face to Face” meeting.
Kathy: This link may be helpful to you in the search for a physician:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126Additionally, you might want to start another posting with the header:
Why did you choose chemotherapy post resection or, something similar to this? Hopefully, it will encourage other to share their thoughts with you.
This decision always has been difficult to make. What better advise than that of another person facing or having faced the same situation?
All my best wishes,
MarionHey Kathy! Well, my father felt that if he had “12 months to live” that he didn’t want to spend that time being sick, so we went w/ the Great Healer and used the foods God’s given us. He went to see 2 nutricienists (one of which had stage 4 skin cancer and was given 3 months to live–20 years later she has beaten it w/ diet). He also started on trying to balance his body’s ph w/ alkaline water and he uses what’s called a radio-frequency machine on his liver almost daily. My parents jumped in w/ both feet and embraced these methods as it was literally DO OR DIE. I’ll find out what supplements he’s on, but they are all natural and are basically geared toward detoxing your body and building up your immune system.
He started seeing a new oncologist (he didn’t like that his surgeon gave him an expiration date), who worked w/ MD Anderson for 12 years and was not part of the other surgeon’s practice. He told my father that things looked really good and that what he was doing seemed to be working; however, he felt like since we have the cancer at bay, let’s zap it. He’s going through a low-dos chemo every other week for 6 months (although after 4 rounds they will run a PET scan and if it looks good, they may stop). This is just a precaution, but he is still on the diet, supplements, water, and frequency machine–and prayer.
If you check out my other post entitled “Cetuximab Shows “Encouraging” Results in Biliary Tract Cancer” in this section on Nov. 20th, it gives the entire article, but basically, here’s a snip from the article w/ the chemo he’s doing—
“November 11, 2010
Kathy,
Just thought I would chime in with my opinion on this. My dad had a successful resection and went on the Bilcap trial – had he not joined the trial he would not have been given any chemo. I wished at the time he was in the US and then we could request chemo – you can’t do that in the UK. We (as a family) decided that we wanted him to do everything now to try to combat it. The trial tests Xeloda (Capecitabine) against doing nothing after the resection to see a) whether and how quickly it comes back and b)what the patient’s quality of life is like.My dad managed fine on the full 8 cycles at the full dose. He had little ‘tired’ days each month, and felt ‘zonked’ sometimes, and had diarrhea (that might have been related to the operation too). We went on at least two holidays and had numerous family outings.
I wish you really good luck with your decision. I’m so pleased with your news today, enjoy this precious time. I’m sure whatever you decide will be the right choice for you.
Kate
Kathy-I am sorry I read your post wrong, it was your local doctor that you were a first with. I love my local doctor, he started the journey for me, but I will always be grateful that he was on vacation when test were read. I would have been sent to a local gastronologist who would not have had the expierence to know what he was looking at and would have taken the negative bioposy as truth. One of the many miracles God sent my way the last 2 years.
I did 8 weeks of gemcidabine then 6 weeks of 5FU-24hour a day chemo pump while doing radiation. I took a break for 4weeks and then started on Xeloda (oral chemo) until a liver was found (about 5 months). I started chemo treatment September 2008 and was transplanted May 24, 2009. I did get extremely tired, but went to California before going on transplant list and still managed to be a tourist in San Francisco. The day I had transplant, I went to WalMart but did rest awhile in patio section!! Never lost hair, all my nausea was managed with medication. I hope a transplant is an option for you. Good luck and lots of prayers-CathyHi Cathy..Don’t want to give ANY impression that my doctor is not knowledgeable. He’s one of the tops in the CC field..Dr. Michael Choti at Hopkins..he’s done many resections for CC, travels the world operating on this kind of cancer..I know Singapore for one. He’s just discouraged that more $$$ isn’t out there for research for CC and thinks there should be an international study and a database (which there isn’t, although for other cancers there is) where information can be centrally located. He feels there isn’t enough information out there yet to support (or not) the use of chemo. I misunderstood him at the time of my first post-op visit. I thought he said there wasn’t evidence that chemo was effective meaning that it wasn’t; he actually meant that there wasn’t evidence either way and so there’s a vaccuum and it has to be up to the individual. He said (yesterday) that some people will do anything to have the chance for it not to come back, while others won’t go through the rigors of chemo. I am curious why more isn’t said of Johns Hopkins on this board as it, too, ranks high in its treatment of CC. Dr. Choti has been on the board of the CC Foundation and JH is taking part in the National Cancer Center’s clinical trial of using chemo and radiation for resectable CC patients.
What chemo were you on? I will definitely put Dr. Chapman’s name on the list to contact.
Thanks for your information.
KathyKathy-I am a cc survivor because of a liver transplant. I have posted on here many times about my expierence, nothing but positive. I was in the care of Dr. William Chapman at Barnes-Jewish in St. Louis Mo.They are up there with Mayo. I am there number one fan, I recieved nothing but positive and loving treatment. Barnes just openned a new transpant floor because they are a cholangio center. Chemo and radiation were part of my teatment and had minimal side effects, nothing unmanageable. I have an amazing story and you can read about it at thetelegraph.com under christmas miracle. If you would like to talk please call 618=567-3246 or e-mail. I too just had my scans and all clear!! Good luck and find a knowledgeable doctor they are out there! lots of prayers. Cathy
Dear Kathy, Mayo in Rochester MN and MD Anderson in Houston seem to be our top choices, however, there have been other great reports about Barnes in St. Louis. We have a whole thread on our Discussion Board page. Just go to our first page where it lists all the subjects and click on Hospitals. I think that would be most helpful to you.
Hi Marion and Lainy,
Thank you both for your well wishes and support. Can you steer me either to earlier postings (I’m hopeless navigating around websites
or recommend where to get other opinions? Mayo is the one I’ve been thinking about. I do know that a liver transplant surgeon at NY Presbyterian Hospital in NY and my local doctor supported and even encouraged my decision, but I’m my local doctor’s first Cholangio patient (and that’s after 30 years of practice!) and I’m not sure how much experience our NY surgeon friend has had with CC.
I’m sure many others have awakened in the middle of the night after making a decision and said, “OMG, why did I make THIS decision!” It’s a tough one! and who knows what the “right” answers are! I’m not sure that at this point there is one and as I’m learning from this website each person reacts differently to chemo drugs. My doctor is hoping, too, that there will be a pooled study worldwide but unfortunately funding is not there for such a rare cancerYEA, Kathy!!! Just what we love to hear. To chemo or not to chemo is such a hard decision to make. I go with Marion on getting at least another opinion to help you decide. Please know that what ever decision you make, it is the right one for you. Listen to your ‘gut’. Good luck on making this big decision.
Kathy…..Congratulations on today’s clean scan. This truly is something to celebrate. I am thrilled for you.
These are my thoughts regarding your struggle with the decision re: adjuvant chemotherapy: You might want to consider another opinion or, two or, three from oncologists treating a high volume of CC patients. There is a possibility for all to agree with the current recommendations or, you may find a disagreement between specialists. Either way I believe for it to be helpful when confronted with a difficult choice. Hang in there, Kathy. You will come to a conclusion.
All my best wishes,
MarionI just had my CT Scan today and it came out clear. I don’t have to go back until May for my next scan. I still am questioning the chemo part. The doctor restated today that statistics don’t show one way or the other that chemo is effective; he corrected my belief that he said originally that chemo was not effective, it just hasn’t been proven effective…I need to get off the fence and accept one way or the other my chosen path. For now, the news is good, but I feel I’ll kick myself if it comes back and I hadn’t done anything to try to get it not to come back.
But today the news was good and I’m basking in that and my girls, 12 and almost 11 are, too (and my husband!), but I’m so worried for my girls..I’ve got to be around for them!Hi HEather,
Your father’s and my story are very similar although the surgeon felt he got it all with clear margins..also no lymph node involvement. I, too, did not start chemo. How did your father get to that decision? Did his surgeon recommend it? What chemo did he start on (and for how long will he be on it?) Did you follow a particular diet? I am not following a particular diet, but am trying to follow recommendations in several books. Also, what supplements seem to be recommended? I do for my first post-op scan on Monday and am quite nervous!
This website IS a blessing….
KathyCarollynn,
The first thing I want to say to you is how much your story sounds like my father’s. We found out last September that he had bile duct cancer. We found it early enough that it was at a level T1 and N0–meaning no lymph node involvement. His surgeon took out 80% of his liver but was unable to get all of it. After surgery, his surgeon told us he had 12-18 months to live–12 months being realistic. Fast forwarding 6 months. Dad is doing FANTASTIC! We initially went the route of holistic–natural supplements, cancer fighting diet, alkaline water, the whole 9 yards. His doctors said they were amazed at how he was keeping the cancer at bay naturally. However, he did decide to start a low-dose chemo just before Christmas just to kick the cancer while it’s down. His blood results continue to look good and he looks better than he did BEFORE the cancer.
It’s interesting…as I don’t believe in coincidences–God’s hand is in everything. There is no chance. …interesting…that I haven’t checked this site in several weeks and just now when I did, I saw your post–my dad’s birthday. We celebrated his 67th birthday on Dec. 27th and are bound and determined to celebrate his 68 cancer-free. You remind me of me 6 months ago. PLEASE have faith and stay positive. We have no control over what happens, even though our pride thinks we do. Everything that happens is for the good…and I’ll tell you it’s taken me a rollercoaster ride to trust in that. This 6 months has seemed like 6 years and I’ve been mad as hell!
I will say that we are strangers on this website brought together by a common disease, but that disease does not define who we are…we are love, understanding, support. All these things from strangers. You are not alone. You and all our friends here continue to be in our daily prayers.
Blessings,
Heather–Kathy…..congratulations on the successful resection. Adjuvant therapy post resection has been discussed frequently on this site and I believe that experts still vary in their opinion regarding the validity of such treatments. As Lainy has mentioned, you might want to contact other bile duct cancer physicians and based on their opinions make an informed decision. Others most likely will also chime in and help guide you.
Welcome to our site. I am glad that you have found us.
All my best wishes,
MarionWelcome, Kathy, to our wonderful family. It sounds like you have had a good and productive game plan. IF at any time, you doubt anything at all, you have the right to a 2nd and 3rd opinion especially where to chemo or not to chemo is the question. We have had many posts on this and perhaps you can find some in our search engine at the top of the page. Good nutrition and no stress definitely helps the stress level which uses up too much good energy. I am sure others will be along to add some good advise however, I am not sure they will see your post attached to this other thread.Perhaps you could repost it under Introductions? I would hate to see it get lost. Stay strong and please keep us posted.
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