devoncat

Lynne and Teresa,
I can not imagine what it must be like to lose a child. You are both in my thoughts.

Kris

Sounds like you have a positive outcome so far. I hope that you get continued good feedback. These regular check ups are so important, but are so emotionally draining. I am sending you very good thoughts for you and your mother. It is nice to hear a positive story.

Kris

I would also like to add that you may not hear what you want to hear (reason my oncologist is nicknamed the Hope Snatcher). Listen to what they have to say, but do not take it as gospel. I have spoken to several doctors (pathologists, surgons, liver experts and ocologists). The differences in what I have been told such as I am a good candidate for a liver transplant, no transplant for you, you will have chemo, no no chemo for you…the list goes on and on and can drive you nuts. But I am pointing this out because there is always more than one opinion and maybe you will need to find a second opinion. I dont believe in giving only pallative care or doing nothing. FIGHT FIGHT FIGHT.

I am personally very frustrated with my oncologist and am looking for a new one. Cholangiocarcinoma is not your run of the mill cancer. My current thoughts on the oncologist front is that I dont want someone who plays it safe. There is no current protocol that seems to be highly successful statistically. If that is the case, and it seems to be from what i have read, then seeing an oncologist who only follows standard practices for this disease may be a mistake. Ideally, I would love to get a new onc who knew about alternative therapies and new treatments in the cancer world in general-not just cholangio protocal. I want an onc who instead of saying “There is no evidence that works for cholangiocarcinoma” says “there is no evidence that it hurts”. Following standard practice with this disease (from my point of view) is often not that beneficial. We are a small group with very little research. Just look at medical trials…over 900 for breast cancer, less than 20 for cholangiocarcinoma. With such a small base of information, it seems (to me) wise to gain as much as we can from other cancers and if things seem to help them, why not give it a try.

The point of this long post is that much of your friends hope lies in her hands. Cholangiocarcinoma is a devasting diagnosis. But there is hope. My best friend is a pediatric oncologist and she stresses STOP LOOKING AT THE STATISTICS. These statistics are compiled over ten to twenty years. The advances in treatment over the past couple years have altered the numbers. If you look at the statistics and listen to some oncologists, you might want to bury your head in the sand. Dont. Go to the meeting with a list of questions. Read the forums here for ideas on what is the current practices and what is on trials. Point these out at your first meeting. Keep in contact with everyone who has ever handled your case-a different doctor friend pointed out that doctor’s have big egos and dont want to get caught making a mistake by another doctor so if they know other doctors are following your case they are more diligent, plus different doctors have different research interests so overall you will get more information.

As it is the first meeting with the oncologist, the tendency is to be nice. Everyone has this idea that it is rude to question the doctor. Rude, hell. This is your friends life and fighting for new treatments and questioning doctors may be neccesary. Manners are nice, but surviving is better.

I saw a tshirt that said “If i had known how much work it would be, I never would have got cancer” That is the truth in regards to cholangiocarcinoma. It is so rare and it is likely that your doctor may not be as current on research as one would like. It becomes your responsibility to read up and know the research. Check http://www.pubmed.com. It will only give you the abstracts to the research papers, but from them you can usually find out which new treatments and therapies are working. Make a note of the auther, title of journal, and title of article and conclusions and take it with you to the oncologist. Many doctors pooh pooh information found on the net, but these are academic journals so they will be more inclined to listen.

I am wishing the best for your friend and I am sorry she had to join this club. But never give up hope. You can get angry, depressed, or scared…but dont stop fighting. You never know what is around the corner in a way of treatment. Pass on my thoughts and prayers to your friend.

Kris

LAiny,
How wonderful. You and your family have been very blessed. I think it is wonderful that Teddy is out golfing and fishing. It seems so NORMAL and I think that is the most beautiful thing about your post. Sometimes it all feels too much and that normalacy will never again be a part of my life. In fact, a doctor said I was too focused on it all and that if I die tomorrow or in 50 years I need to live life now. It sounds like your Teddy understands that secret and it is good. Sending good vibes for continued good health.
Kris

What wonderful news. Hope, hope, hope. That is what posts like this give. I bet your family and you are just over the moon. I hope your cocktail contiues to work.

Kris

Needed that. I am 32 and this cancer has really thrown me for a loop. I just dont have time for it. Planning my life precancer was hard enough. I am more positive now that I have heard these stories.