peter
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I assume they are watching her CA19-9 tumor marker. It’s an imperfect measure but I’ve found that the direction of change in the marker seems to be relevant to the cancer.
Coleen,
This is a pretty common cocktail that many patients seem to tolerate reasonably well. I have only had the Xeloda but a couple of things to watch for.
Start now with frequent applications of a good hand cream (I used Bag Balm which was also recommended by my oncologist) on her feet and hands. They will likely become tender and peel.
I found that nausea and stomach upset was helped by frequent use of acid control medication. Different people tolerate different ones better then others. Some, Ranitidine for example, are available over the counter or by prescription. If she has insurance the prescription version may be more cost effective depending on her co-pay. She can also get larger and stronger dosages this way.
Use the ‘search’ function at the top of each page in yellow. You’ll find many hits on this site for both of these chemo drugs. Also, if you are so inclined, the alternatives section has information on things some of us have tried for side effects.
I hope it goes well for her and she gets a good response.
-PeterI agree with Marion. I have never heard of anything like this with someone so young.
I’m so sorry.
A second opinion from someone knowledgable about Cholangio would be an essential next step.
Has your daughter been in Vietnam or parts of the east where the one known parasite to cause this disease lives?
Have courage and know that there are good resources, and people, here to try to help.
-PeterSeamus,
I have not used F5U so I can’t comment personally. You might consider emailing Rick and ask him to move this thread to the Chemo section. Then bump it if you don’t get a response.
Also, a search on this site for F5U will turn up lots of posts.Hope this helps.
PeterI would suggest getting a second opinion on surgery. It is often the best hope for extended longevity and quality and, as the cancer is so rare, many surgeons are not aware of what can be done.
Depending on where you are in the world there may even be a surgeon close enough for easy access.
You can find some recommendations on this board of Hospitals and surgeons who have CC experience and a few who perform successful surgeries other Docs do not realize are possible.
-PeterLee,
If you haven’t yet found a surgeon who will resect the Klatskins don’t give up. Some just aren’t resectable but as you point out there are few surgeons in the world with the experience. If it can be taken out it’s her best hope for some good years.
Read my ‘experiences’ post for some background if your interested. If you haven’t found someone it’s worth contacting Dr Roger Jenkins at the Lahey Clinic in Burlington Mass. 781-744.2500.
He’ll want to see records and any imaging you may have so be sure to get copies of any CAT’s or MRI from the hospital that did them.
Best wishes for a difficult battle. Never give up. I’m 4 years from surgery next week and my quality of life is still excellent.
-PeterBecky,
Be sure you get your lab results in hardcopy from your doc. The lab sheet should give the range your lab considers ‘normal’. Having said that almost all of us have some wild liver panel numbers and they often are not a big concern. I keep a spreadsheet of all my labs and pay more heed to trends then to absolute numbers.
The reference for Total Billi from my lab is .2 -> 1.2 and for Direct Billirubin it is 0.0 to 0.3.
You can also find lots of info on what each number tells the docs and the normal range on the web. Try a google search even on something as simple as ‘Liver test results’.
-PeterI have used marijuana occasionally for nausea with good success. I was quite surprised by how much a small amount helped in relieving nausea.
Vermont actually has a medical marijuana statute on the books but I have not bothered with the paperwork as our county DA has stated publicly that he will not prosecute possession nor medical use.Ted,
Thanks for your reply. I am in full support of fighting this disease (maintaining good health in general) with lifestyle, diet and natural products. I attribute at least part of my current success to diet, Chinese medicine, and the mushrooms.
In my case I lost so much weight on what was essentially a macrobiotic diet that a few months ago I modified it to increase (organic) fats and protiens. In conjunction with the chemo and mushroom extract my markers have returned to the normal range and I’ve been able to gain back 20 lbs. I recognize this is likely a grace period for me and also try to remember how blessed I am.
What I may have learned in this process is the need to listen closely to what our health and bodies are telling us and to consider all the possible resources available to us world wide. We have much to learn about this disease as so little research has been done to date.The CholangioCarcinoma Foundation of which this board is only one piece is working hard with all volunteer labor to bring research efforts to CC. (a blatant plug for anyone reading this post who hasn’t investigated what these good folks are doing beyond this message board.)
May Patty’s program bring great results. My thoughts and prayers are with you all.
-PeterAaron,
I’m guessing that is your name and my apologies if I have it wrong.
I’m curious about who you are, your interest/relationship with AHCC, and your reasons for posting here. As this is your first post we know little about you and, to be blunt, have had situations with vendors promoting a product they have an interest in.
This is also not a idle question for me as I have researched and considered AHCC.
I am currently taking what I strongly suspect is a similiar pharmacutical grade mushroom extract called Lentinan that I import from Japan under a compassionate use permit I had to get from the FDA. It is quite expensive and I am interested to learn if AHCC might give me a similiar value at less cost.
If you have personal experience with AHCC I’d like to hear it but I also have a healthy skepticism of folks promoting a product they have a financial interest in.
-PeterTodd,
I considered Zeolite and ultimately rejected it as I found conflicting reports of both it’s success and concerns that it contains cancer causing agents.
Do some searches.-Peter
http://www.cancerhelp.org.uk/help/default.asp?page=19399
http://www.cqs.com/zeolite.htmLaura,
Time varies a great deal by individual. If you read the chemo threads on this site you’ll find patients who have had any where from a few months to a few years holding the cancer at bay with different chemos and cocktails.
A chemo will sometimes work for one person and not another.
Another way of saying we’re all unique.
In some cases additional drugs like avastin have had a beneficial effect on the treatment in conjunction with chemo and there is good evidence from other countries that therapies not recognized in the US (or by our insurance companies) have shown improved longevity often in conjunction with a chemo drug. Check the alternatives threads and also our experiences posts.
best wishes,
PeterI assume you’re referring to CA19-9.
If you’re early into chemo it may take a while for the marker to reflect any change from the chemo. And that’s only if the chemo helps. Everyone is different of course.
It’s also interesting that most of my Docs with CC experience, and I’m fortunate to have people with a lot of experience, tend to downplay the usefulness of the CA19-9 number.
In my case I personally believe the trend of the number has been relevant to my condition as it follows so closely how I feel intutively and my clinical symptoms.
-Peter
