Need advice
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“When we asked our French doctor about Cisplatin and Gemzar he said that Cisplatin had very many complications. “
Alaski,
CC has very many complications, but predicting who will have what complications is impossible. I had Cisplatin and Gemzar for 6 months (July to Dec. 2007) and in December, I started reacting to the chemo, but in the meantime, the tumor shrank to the point of disappearing from the scans. Yes, I had additional issues and when cysts on my ovaries grew, I had a hysterectomy in July 2008. Then for an additional 5 or 6 cycles, I returned to the same chemicals. I had another “clean” scan around Dec. 2008. Because there was a spot where my gall bladder used to be, I was given a choice of trying radiation therapy, waiting to see if the spot grew or changed in any way, or (not recommended) I could seek a pathology report but it would require invasion to get a sample to test. I had radiation therapy from the end of February to April 2 of this year, and I am doing great! My energy level is back. So, if you want to pursue the combination, go shopping for doctors. Of course, I’ve been called a statistical outlier; what was expected did not happen and what was not expected did. My oncologist is at Goshen Center for Cancer Care, in Northern Indiana (about 1 hour from Notre Dame). Of course, many people have been praying for me throughout my journey.
Always get as much information as you can handle without stressing over it, and encourage the patient to make as many decisions as he wants.Blessings, peace, and hope to you both!
Louise
Thanks for all the info. Theo, my husband is feeling ok at the moment. He’s been taking Tarceva for a week now and is due to restart Gemcitabine tomorrow.
We are still searching and contacting, hoping for reassurance.Will keep you informed,
Liz
alaski….Dr. Jenkins has responded. He needs to see all medical records, including. CT, lab results, x-ray, etc. You might want to follow this link:
http://www.lahey.org/physdir/Detail.asp?ID=1025
Julie, his administrator, will make sure to speak with you.
Let me know if you need any help with anything else. Her e-mail is: Julie.Doyle@lahey.org.
Good luck and tons of good wishes coming your way,
Marionalaski….I am awaiting response from a physician. I will let you know as soon as I will be notified. How is your husband feeling, presently?
I don’t know about other cancer centres but Mayo needed to see him in person. We faxed the Liver Transplant people the report from the American Hospital in Dubai, they read the report and agreed to see him. No phone consult. We organized the payment once we arrived.
My husband wants to consult with some doctors in one or two of the US major cancer centres.
Can anyone give any names of doctors who would be willing to consult over the phone?
And how we go about setting it up re payment etc
Alaski,
Unfortunately there is not just “a” right answer to treating cc. It’s very frustrating. Don’t drive yourself crazy looking, looking and looking. Yes get as many opinions as possible. I found that many drs are willing to consult with you over the phone. Get copies of all medical records, including PET scans, MRIs etc. You will send these to the drs you are seeking medical advice from.
But again, don’t drive yourself crazy. There are no wrong decisions. Make sure you make time to smile and laugh with your husband and family. Don’t put off anything you’ve always wanted to do together.
Good LuckHi Daniellemarge, when you are settled back in Phoenix it would be great if the 4 of us could meet!!! We know all too well what a comfort it is to meet “one of us”.
Liz,
you have so many friends. This website is my oasis as you all understand what Jim and I are going through. It’s horrible right now.okay, re : medical literature much is available on internet. go through http://www.ncbi.nlm.nih.gov/ so you can access at the very least the executive summary of various cc studies.
I am VERY glad that your husband is in good health an hope that he stays that way. As Kris noted, new treatments are constantly emerging.
Liz,
I am sure your husband will dance at your daughters wedding. It is amazing what a goal does for the fight.Many people tolerate the chemo regimes very well. Your husband might also. There have been many people on the board who have had amazing shrinkage while on chemo. That shrinkage offers oppurtunities for more surgery, cyberknife, and conventional radiation. You never know. For the moment, I know that I am terminal, but who says what will happen in 6 months or 2 years. All my chemo drugs were developed in since 2000. And many people get very good results…what is coming down the pipeline? I dont know, but I am going to be around for it….so you tell your husband that. The future is unknown, but we all need to hang around for it and better treatment options.
Hugs.
KrisLiz,
I had a resection in June 08 . I was just told last week that my cc had returned and mets to lung and new tumor in liver. I was offered 3 options, do nothing and scan again in 2 months, do one of 2 drugs I was on before (Xeloda and Gemcitabine), or take both again. I asked about radiation, surgery and other options and was told no. I am being treated at Mayo in Minnesota. I opted to take both drugs. I am going to go back to another oncologist that I had seen before to get his opinion as soon as I can get in. I would be happy to share any info I get on options that I learn. I also use a variety of supplements/alternative therapies. I am meeting with the Dr I see for accupuncture/chiropracter next Wed to go over alternative options. If I can help in anyway please let me know. Feel free to email me. God Bless,
JamieLiz….Prof. Von Cutsem (Chairman of the Worldconference for GI Cancers) was kind enough to e-mail back. These are the physicians, if you choose to do so, you might want to contact, in France Prof. Philippe Rougier and Michel Ducreux. Both of them are experts in the area of Cholangiocarcinoma.
To everybody out there, thank you, thank you, thank you.
You have become the calm in the storm.
We have spent many sleepless nights worrying about this wretched situation. We are running like headless chickens as if every hour counts.I understand that trials are ongoing but where is the information on results of trials that are completed? What do the oncologists base their protocols on?
Danielle – where can I find the literature coming out of France? The centre that my husband had his surgery was Paoli Calmettes in Marseille….does anyone know about this hospital.
Because Bahrain (where we live now) couldn’t give a diagnosis, we went to Paoli Calmettes on our GI’s recommendation. We flew out within 3 days of being told that he needed an EUS to diagnose the problem as no-one can do this procedure here. We can not speak French which proved difficult for us both and stayed there for 2 months while my husband recovered after the Whipple. Everything happened so fast that we did not have a chance to do any research to determine where the best place might be.
After reading your posts I think we have to try to relax and go with the treatment suggested by our original doctor as it seems that there is no established “guaranteed” combination of chemo drugs. We were concerned about whether this combination is the latest recognised treatment.
When we asked our French doctor about Cisplatin and Gemzar he said that Cisplatin had very many complications.
My husband is in good health at the moment And I really want to keep him that way as he has to have a good quality of life at the same time as fighting this disease. Our eldest daughter is getting married on 1st September in Cyprus and I want him to dance at her wedding!!
I’ve prattled on long enough.
I’ll be on this site daily to keep my spirits up with the knowledge that I/we are not alone.
Liz
Liz,
I am so sorry. My husband was initially treated in Dubai and then advised to come to USA as his CC was almost invisible and USA offered the only curative option, i.e. transplant. Although he was listed he is no longer eligible due to cc progression.
Mayo, MD Anderson, John Hopkins and Sloan Kettering are supposed to be amongst the best (if not the best!) in the USA. My husband’s cancer is almost identical to yours with respect to diagnosis and current status, although he did not have any surgeries. With this in mind, the USA will not offer a whole lot more than France other than drug trials. The Gemzar/Cisplatin has had some success as you will see on this website. Mayo Phoenix (where we are) is doing some drug trials as well. The USA is doing on ton on liver cancer chemo research. the http://www.clinicaltrials.gov/ website will list all current and past drug trials so you can get a good idea of who is doing what. Most of them are free.
One more thing, the radiation at Mayo was successful on my hubby, stopped the tumor growth but sadly not the metastatic disease. He’s only had one round of chemo (Gemzar only, they usually start with this only) but chemo is off the cards as he is fighting off infection.
I’ve read much of the literature and France is really good.
My warmest wishes to you.
Danielle
Liz…..I agree with Lainy and with Kris. I think that there are plenty of physicians in France familiar with this cancer. You just need to find them. I would start with the major centers, make your calls and don’t stop until you are satisfied with a response. Try the internet. I would do it for you however, my French is virtually non-existent. Also, you might want to ask about radiation treatments for the recurrence in the liver. You are speaking about other doctors who felt that the current regiment was not aggressive enough. What did they suggest? In regards to physicians in the US, you might want to peruse our website, on top of the page, major cancer centers. Also, you might want to check the postings of “Tess.” I recall her searching out several centers on behalf of her Dad and there are others on the board who have done the same. You might also hear from them. In the mean time I will try to e-mail a physician in Belgium. Hopefully, he will respond.
The World Gastro. Congress in Barcelona will be at the end of this month which I will be attending on behalf of the Cholangiocarcinoma Foundation. Here I will try to search out some physicians familiar with CC.
My best wishes coming your way and please, stay in touch.
Marion
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