Anyone in a clinical trial?
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Hi Margaret,
I go on the 24th for my first CT Scan and will talk to my doctor again about chemo. Thanks for your words. I’m sorry to hear about Tom’s recurrence. My doctor didn’t say that it wasn’t necessary; he said that chemo has not been shown to be particulary effective and that when it does come back , it’s whether there has been chemo or not. He did leave it up to me to make the choice and he did ask me to go hear about the clinical trial which is the gemzar and xeloda mix followed by radiation and xeloda. It is such a gamble, isn’t it. I got very depressed following my decision but I had a lot of support from other doctors in making the decision not to do the trial but I still wonder if I shouldn’t have done it. My surgeon said recently to move on, that I had made the decision that seemed right for me and that my energies should go into creating the healthiest lifestyle I can. I’m glad I found this board because I’ve met people here with the greatest fighting attitude (including you!) and not giving up! I find that I need that positive spirit because I find myself “down” too much. My biggest concern is for my 10 and 12 year old daughters.Keep us posted on Tom. Sounds like he’s doing everything to keep on keeping on.
Kathy
Margaret, I am so proud of you!!! You both remind me of another couple! I do like the way you stated that Tom gets a sip of wine, I imagine the rest of the bottle is for you and well deserved. Hope you guys are being kept warm in the Tundra. Actually it has been a very cold winter so far here in Phoenix, but I will take it compared to the snow. Take car, hang in, stay strong and looking forward to reading how you are going to celebrate the 10th.
Kathy:
My husband did not have any chemo after his ‘successful’ resection because his doc’s did not feel it was necessary because they had clear margins.
18 months later he started turning yellow and I knew something was wrong. They found a new inoperable tumor in the remaining right biliary tree. His new oncologist is telling us that if he had been given chemo he may not be in the position he is in today..so far he has ha 28 rounds of radiation that ‘killed’ the tumor, then he had oral chemo, xleoda for about 6 weeks. After a ctscan and after his tumor markers started elevating, they installed a port and started him on IV chemo, gezmar and cisplatin. His tumor markers are again on the downward trend….because of a severe infection in his liver, the chemo is on hold for now.
Tom’s new team of doctors stated that if they had been in charge after his resection he would have automatically ordered chemo as even with a successful resection with clear margins there can still be stray cancer cells lurking about and the chemo would have zapped those cells.
We are taking it one day at a time now and are thankful for each day that he is here with us. I do not know how much time Tom has left but I will take as much time as I can get! We were concerned that he may not be here to celebrate our 10th wedding anniversary on Feb 11th, but it now is beginning to look that that might be a milestone that we will make! I have been saving a bottle of wine that we got for a wedding present so he better be here to drink it (only a sip for him!) with me! He has also been talking about he and I renewing our wedding vows (how sweet of him) so we have that on the agenda also. We are not letting CC rob us out of our lives….we are proceeding as normally as possible.
Keep on KICKIN’
Hugs,
MargaretI also wanted to mention that my husband had radiation and chemo before his resection 3 years ago, including both gemzar and xeloda, then 2 chemo tx after. Now, his cc has presented again, but only after 36 great months, and he is now 73&1/2. After surgery we found out that he had ‘perineural’ involvement and they told us it would recur at some point. I have asked him if he would do it again (chemo) and he says absolutely. It has given us 3 more years together, our kids are 3 years older etc. We are looking at more surgery next week, and if the dr feels that chemo will help, we will most likely do it again. Best of luck, keep fighting.
I also wanted to mention that current clinical trials offered in the US are accessible on our site. Top bar, cholangiocarcinoma, scroll down to clinical trials.
I hope this helped.
Best wishes,
MarionHi Kathy, I do not know of a current study but lots of studies have been done. Are you looking for a trial study to participate in? Where do you live? I will keep my eyes and ears posted. What feed back did you get from the survivors? They should have some good input!
My husband has stage 4 with mets to his liver and spine. He is doing chemo but we chose naturopathic as well. Here in Canada with our extended health benefits his visits and all testing were paid for but we have to pay for any treatments. He takes a number of supplements. One of his main treatments is an injection of Helixor (mistletoe). It is a natural chemo but also enhances conventional chemo. He also takes DCA – The University of Alberta did an extensive study on DCA. You should search it on the net. It is in the process of getting accepted (conventionally) in Canada, right now it is only available through naturopaths. Like any cancer treatment these are not always cures but have had their great successes (Suzanne Sommers) but they can extend and enhance the quality of life. There are many cancer diets out there, my suggestion is research and decide on what fits you best. Doug and I stay away from red meat and I buy everything organic. We juice fresh fruits and vegetables. No sugars! The naturopath did testing on Doug to see what foods he is sensitive to, so we avoid those. Keep your spirits up and remember a cup is half full and not half empty. I say you have an excellent chance of no recurrence. Take care.
NancyThank you both for your responses…I’m sure it is common for everyone to feel nervous, too, about every pain (e.g. my back along the spine is hurting, so, of course, I’m convinced that it has metasticized there!) . I’m trying to adjust to this and am really struck by this site at the bravery and positive attitudes people have toward their treatment.
I was wondering, Margaret, if your husband had any chemotherapy after his successful resection or if his doctor, like mine, didn’t recommend any. What kind of treatment is he getting now? My doctor told me that if it recurs, it most likely will within two years. I have heard amazing stories from people who different friends have put me in contact with. One man is still living, healthily after 10 years (ran a marathon at 72 last year!) and another man is alive 5 1/2 years when he was given 3 months after doctors discovered during surgery it had metasticized to his lungs and pancreas. There are very, very positive, hopeful stories out there and attitude and determination seem to play such an important role!
I’m wondering if anyone knows of a study that is being done using immunotherapy or diet?
Appreciatively,
KathyKathy:
When my husband was diagnosed about 3 years ago we had quite the discussion with his doctors and I did my own research on this disease. Cholangiocarcinoma patients are less likely to receive a new liver via transplant because for what ever reason, this cancer DOES re-occur with or without a transplant. Liver’s are hard to come by, and many CC patients do not meet the protocol for a transplant. Live donor liver transplants are risky and they also don’t like to do those. The only real cure is a successful resection (removal of the cancer from the liver which means cutting that part of the liver away)
Some of the stats that I recall reading that about 10% of CC patients are eligible for a resection and of that 10% about 5% will re-occur….so I would assume then that is where your doctor got the 50/50 numbers from.
My husband Tom was in the 10% eligible for a resection, and he was in the 5% that re-occurred, this happened 18 months after his surgery, and the new tumor is in-operable. However, here we are 13 months later and he is still with me.
Never give up, keep that fighting spirit going!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Kathy….the pre-CT report fear is something we are very familiar with. I am not a physician, but from what I had experienced and from what I have read on this site and other sources, it would be out of the norm for you to show any signs of cancer on the upcoming CT scan. You underwent a resection two months ago with clear margins and without lymph node involvement (biopsies are done in the operating room.) I hope this helped a bit and you will be able to relax. I know it is difficult to do when feeling anxious.
Regarding the clinical trial: Gemzar and Xeloda are routinely used for this cancer. This particular clinical trial is in an adjuvant setting and includes the radiation treatments. Nothing new about the radiation either, as this is commonly used also.
John Hopkins may have difficulties recruiting for this particular trial solely for the reason of lack of eligible patients.
The bigger question I believe you are struggling with is what has been hotly debated on this site and is hotly debated amongst the experts also is whether adjuvant therapy is beneficial to you.
And, this is where I am hoping for others to chime in and help you out.
You mentioned in one of your other postings that you are recuperating well. That is great news. I wish for continued success.
All my best wishes,
MarionThe trial is one that is being done by NIH, but administered through 7 different centers in the U.S., Johns Hopkins being one of them. After almost two years, JH hasn’t filled up the hoped for 14 slots. It is for people who have had a successful liver resection, clear margins and no lymph node involvement; the category I’m in. It is a Phase II clinical trial.
It consists of 4 rounds of a combination of Gemzar and Xeloda (pill 2x daily), Gemzar one/wk for two weeks, a week off.
This is followed by daily radiation for 5 1/2 weeks coupled with a continuation of Xeloda.
I have to confess that I did not sign up for the trial. The oncologist told me that they follow people for 5 years, but when I looked up the trial on the web, it described it as looking at the increase in longevity at 2 years out.My surgeon at first recommended no further treatment, but then said he wanted me to be informed about this clinical trial. I talked with my GP, a friend who is a transplant surgeon in NY, and again with my surgeon and decided for better or worse, not to do the trial. There are no statistics out on it yet. The one thing I didn’t ask which I wish I had was .. how does this particular combination (Gemzar and Xeloda) differ from an ordinary chemotherapy regimen..what makes this one different.
My surgeon was a bit pessimistic about the success of chemotherapy which has been borne out by what I’ve read on this website. He said that statistics were that cancer comes back in about 50% of those who have had clear margins and lymph nodes at surgery. Does anyone have any different statistics? He said that I am in a category of about 20% where it is operable and able to be completely removed. SO that leaves only 10% that have no recurrence. Trying to feel encouraged, but am rather dreading the CT Scan coming up!
Thanks Gavin for steering me to the clinical trials board. I am so appreciative that I’ve found this board.
Kathy
Hi Kathy,
Welcome to the site. Sorry that you had to join us all, but congratulations on a successful surgery! Lets hope that the good news continues for you. I caqn’t help you with your question regarding this trial, but I just wanted to join in with the others in welcoming you here.
Please could you let us know more information about this trial as it could be very helpful information for others here. In the meantime, we have a clinical trials board that may be of interest to you.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=14
My best wishes to you,
Gavin
Hi Kathy,
Congratulations on your surgery – I hope your recovery is going smoothly. My dad had a whipple in January, and afterwards entered the Bilcap trial here in the UK to see if chemo with Xeloda after successful surgery can reduce the chance of recurrence. He tolerated it really well and had a clear scan at the end of the trial, so far so good!Can you let us know what chemo and radiation the trial will be? There is lots of discussion on this board about adjuvant therapy which you can read, so I’ll just give you my own opinion – I wish my dad had been involved in your trial, so he could have had some radiation too. The more the merrier to try and combat the chances of recurrence early on (obviously the main point here being no one knows yet if any of these things work, but they must be based on something). Is your a phase II trial? My dad’s was phase III with them hoping to accrue 360 people (so far it’s taken them 3 years and they haven’t got half of that yet from the whole of the UK – rare or what!)
I’m very interested in why someone could say to you ‘a 50/50 chance of recurrence’. I’d love to know which study that has come from, and what evidence he’s making that vague sounding prediction on… It sounds to me like a bit of a guess.
Will be interested to read of your experiences on the trial and wish you good luck with the future. Enjoy being cancer free.
Kate
Hi,
Congrats on your surgery! I hope all goes well for you.I am also curious about the trial you are starting. Can you tell us the name of it or what the plan is?
You have to be thrilled to be cancer free at this point. I am so happy for you.
Best wishes,
CharleyHello Kathy and welcome to our site. Congratulations on a successful resection and clear on everything else. Do you know which clinical trial you are about to enter?
Best wishes,
MarionHi!
I was diagnosed late July with CC and am 4 weeks out of surgery where 2/3 my liver was removed..lymph nodes clear and a clear margin around the tumor. No spread elsewhere. I am being presented with a clinical trial that began about a year ago to see if the percent of recurrence can be reduced. My doctor has told me that I have a 50-50 chance of recurrence. The trial involves very potent chemo and radiation over a period of 6 months. There is no data yet as to the effectiveness as only 60 people are in the trial at this point.
At this point there is “no evidence of disease” but I’m afraid at any moment that could change!
If anyone is in a trial such as this (our of NIH, but in 7 centers nationwide), could you let me know what it’s like and more about it?
Kathy
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