1 (edited by chezWright@aol.com Wed, 14 Aug 2013 20:38:33)

Topic: Chemo or no chemo

I have been reading on several of the other postings that the trend is toward recommending chemo even for those with clear margins and no lymph node involvement.  Am I understanding that correctly?  And can someone point toward statistics/studies that are showing that chemo is in fact beneficial in those situations?  When I had my surgery in 2010 I was told that there was nothing to definitively show that the chemo was effective in preventing recurrence.  It is clear that there are many recurrences in spite of the chemo, but now I'm getting increasingly nervous that perhaps I should have done the chemo.  There is no use in rethinking three years ago, but I am definitely worried that I didn't do it in 2010.Could someone steer me toward research that has shown that chemo is definitely helpful and what has steered doctors toward recommending it more.

Re: Chemo or no chemo

Well, Kiddo, this is a question I often ask myself. After Teddy's Whipple he was told by 2 ONCS, a Surgeon and a Radiologist that even though he had clear margins they felt that chemo would not help prevent it from recurring. We had TOP DOCs and when we came back to Phoenix he even saw a big Liver Transplant surgeon (even though his never got to the liver) who agreed with the others. T was 73 then. I think things have come a long way in 8 years and it will do me no good to keep looking back. With that said, our Randi had great success having chemo after her Whipple. Sorry I can't help with research on the subject or statistics but I am wondering if you might go to another ONC for his opinion? Sure wish I could help.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by chezWright@aol.com Wed, 14 Aug 2013 21:21:51)

Re: Chemo or no chemo

Yes...Randi has done wonderfully.  She is 8 months ahead of me and her doctor feels confident that if it hasn't come back by now, she's clear, as clear as any of us can be!  I don't remember seeing anyone posting on here who had clear margins and no lymph node involvement AND no chemo and has gone many years without recurrence.  If there is.....could they post again?

Also, Randi/Lainy, do you know if CA-19-9 marker will elevate before the cancer is actually detectable?  Is it a more reliable indicator (if it is low) than the scan itself?

and, of course, as I am writing all this, I am telling myself...stop it!  Just live and be grateful that three years later I just had a clear scan and CA-19-9 of 16.5.
Need to follow Randi's lead and GET TOO BUSY to let this cancer sidetrack me!

Re: Chemo or no chemo

Well Teddy started when he was 73 and lived to 78 but he went through a lot in those 5 years, on the other hand they were wonderful years for us, and even when we had to call Hospice he told everyone we were on our honeymoon. He had totally clear margins and no Lymph node involvement and like I said no chemo. When it returned 3 years after surgery where his Duodenum used to be, he had radiation then Cyber Knife and that bought him another 2 years. As far as I know the CA19 marker is only a tool used that has to be combined with everything else in determining what is going on.  Try hard to ENJOY! It does no good to worry like that and you don't need all that bad energy in your system. I know, easier said than done. Pour yourself in to something you love like a hobby or volunteer work. Wishing you the best.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Chemo or no chemo

I think Sue did not have chemo after surgery, but I haven't seen her on here lately.

Re: Chemo or no chemo

Hi all,

Yes it is true, I had chemo.  But to answer your question about statistics, I have yet to find any that suggest that chemo is indicated or helpful if you have clean margins and no lymph nodes.  I opted to do it because my doctor suggested it as a precaution and my family supported me doing it.  It was no piece of cake, let me tell you, however, I have no regrets about it.  If it helped, great, if it didn't, well ok it's over. 

It is so easy to look back and think about what we should have done in situations.  Unfortunately, we cannot change the past and have to move forward and live.  Cancer comes with worry, regardless of what we do.  While the cancer is never far from my mind, time has been a great healer and I don't dwell on it as much as I did.  I suppose it is easy for me to say since I've been so lucky.

Keeping busy, living life, staying on this board to help (and get support), and trying not to dwell are my solutions to cancer worry.

Oh and my CA19-9 was never high, even when I had CC, so it is not a valuable test for me and my doc has decided that blood tests just aren't worth it anymore.  This new onc is a minimalist.  He suggests staying in touch with your body, seeking help if something feels wrong and living life without the ongoing reminders of cancer (tests, scans).  He also does a ton of research and is very familiar with the course of CC.

Sorry for the long post.  In a nutshell, we all do what we can with the information we have at the time.  Try not to live with daily regret and fear (I know, easier said than done).

Best wishes.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Chemo or no chemo

Kathy....I agree with the above;  try to enjoy your cancer-free life.  As of to date we have no clinical studies supporting the efficacy of adjuvant therapy.  The closest we come is the BILCAP study presently underway in the UK in where Xeloda, post surgery, is compared to surgery alone for gall bladder cancer and cholangiocarcinoma.  The results will be released next year.  Each and every year out from a recurrence should allow you to feel more relaxed.  There is life beyond cancer, dear Kathy.  Our Randi is good proof and there are others too.
The CA 19-9 Serum marker is one "additional" tool only in evaluating patient disease progression; it mainly is used as baseline for monitoring chemotherapy response.  On it's own - it is considered of no value - by many physicians. 
Things look great, dear Kathy. I am thrilled for you. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Chemo or no chemo

Randi and Marion....Thank you both so much.  Perhaps that is one of my lessons in life.to let go..and move on and be grateful for each day.  I was reading through some of the other posts last night and feel ashamed that I even posted anything when people are struggling with such terrible and heart-wrenching situations with such courage.  This board is such an incredible source of strength, wisdom and knowledge for all those with cc.  Thank you all for your dedication to supporting everyone.
Off now to help my 14 year old get ready for her 5-day backpacking and canoeing trip with her rising 9th grade new and old friends.  Bethany is at camp on the Chesapeake Bay with a good friend of hers and about to go to S. Carolina to Myrtle Beach with the family of another friend.  We had a week long family reunion at the Delaware shore this summer with all 6 grandchildren for the first time, 3 of our grown kids and spouses and our two youngest daughters.  Life IS good.

Re: Chemo or no chemo

Kathy....each and everyone expresses their heartfelt emotions and that is what I believe has made this place so successful.  Please don't ever be ashamed for anything written by you.  This is a tough disease with a huge impact on our lifes.  Doubt, fear, anxiety is equally mixed with hope, joy, and expectations.  This is the place to let it all let out.
What a fun packed weekend you must have had with everyone present at the family reuinion.  Your daughter must be more than excited - have fun packing.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER