Topic: New member seeking advice

Hi, I'm Vince, a 67 year old male, and had the whipple procedure a month ago and am doing very well. My tumor was 2 cm, margins were clear, and of 16 lymph nodes 2 showed cancer cells. I was diagnosed as distal bile duct cancer and given the pros and cons of adjuvant chemotherapy. Due to the limited research on this disease, my dr is leaving the decision of having chemo up to me. I meet with my oncologist next week to discuss the situation. Anyone who has faced the same decision, I would like to hear your views and results as I'm trying to gather as much info as possible. Thanks.

Re: New member seeking advice

Hello Vince, welcome to our extraordinary family but sorry you had to join us. My husband Teddy was 73 when he was DX and had an aborted Whipple then 3 weeks later the real deal. He had clear margins and yet 4 ONCS/Radiologists advised no chemo. That was 8 years ago. The main issue was at the Ampulla of Vater and was Distal as well. To chemo or not is one of the biggest questions we get but it is such an individual and personal decision. The Docs all felt that chemo would not help. So Teddy decided no chemo. He was clean and green for 3 years and then the CC returned to the exact same place. We opted for Cyber Knife which was a miracle but the CC returned again to the same place 2 years after that. He passed 3 years ago after 5 1/2 years with CC. When the ONC told him there was no more that could be done and Teddy had about 6 months he offered Palliative Chemo, Teddy asked him how much time it would buy and the Onc said a month. That was that and we did not do the chemo as Teddy wanted quality over Quantity. I can honestly say that when we looked back we had no regrets. Another question he always asked when it came to something new was, "Would you advise your father to do this?" Like I said it is a very personal thing. May I ask where you are being treated? You have come to the best place for support and we love updates.

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: New member seeking advice

Hi Vince, I had a large resection in January and I am 35 years old.  My tumor was much larger than yours but all of my nodes were clear as well as had clean margins.  I chose to participate in adjuvant chemo.  Did they tell you what regimen they are suggesting?  Though I feel like this time around it is taken a toll on me and I know there is not a lot of evidence on how effective it is...but I do not want to have any regrets and never want to look back and say..."I should have done this, or wish I would have done this"  So for me, I am doing everything I can to say I gave it my all. smile  My biggest side effect from my regimen is fatigue and my onc recommended 3 months, and I am half way there.  There is no right or wrong answer.  Good luck on your journey.  Blessings.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: New member seeking advice

Hello and welcome Vince. I'm a 47 yr old married man with 4 children. I was diagnosed with perihilar CC in late Dec '13. I had a successful resection with clear margins and no spread to lymph nodes etc. in January '14. My tumor was 2.5 x 1.4 x 0.5 cm. I've chosen not to do chemo. My decision was based on my personal belief that the chemo doesn't have proven benefits but does have proven significant short and long-term side effects. If the CC comes back I'll have to revisit that decision. Only the oncologists I met with recommended it (6 rounds of gem/cis). The rest of my doctors effectively recommended against it. If I had signs of metastasis, like you do, I think my decision would have been different. Ultimately you need to make the best decision for you. Best of luck to you! -Matt

Re: New member seeking advice

Hi Vince -
Welcome to our little family. Many of us have been in the same boat with making that decision. My husband was diagnosed in May 2013 with perihilar CC with surgery in June 2013. His tumor was 2 x 3 x 2 with one positive node out of seven and clean surgical margins on the second try.They did find some invasion along the nerves and lymph system too. We opted to do 6 months (12 treatments of Gemcitabine/Oxaliplatin) then just finished 25 doses of IMRT with 5FU infusion. We chose to go that route based on our ONC recommendations due to the concerns over spread.
Our doc said he basis his recommendations on four questions: How big the tumor was, clean wound margins or not, any metastasis and the differentiation of the cancer (how much the cancer cells are like the original cells). According to him they considered his rather large, clean margins but on second try, positive node and moderately differentiated so that was two for chemo, one so-so and one against it.
We went for it because my husband wanted to give every chance there is to beat the cancer and not have it come back. But not to say that there are times he wished he has skipped it all....especially right now since he is ill from the chemoradiation he just finished.
Hope this helps.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New member seeking advice

Hi Vince,

I was diagnosed with Extrahepatic CC in November of 2009.  I had a Whipple in December 2009.  I too was faced with the chemo or no chemo decision.  I sought two second opinions who all said it was up to me since I had no lymph node involvement and clear margins.  I spoke to my doctor extensively with my concerns both pro and con.  Still the ultimate decision was mine.  I decided to do it since it was "well tolerated" chemo (Gemzar) and would be 6 months long.  I wanted to do everything I could to prevent a relapse.  I decided against radiation therapy because I had actually found some research on that and it did not support radiation for those in my situation since the limited statistics didn't seem to support doing it.

So...what does that mean for you?  Really nothing, each person must make this decision themselves.  There are no 'standards' for this disease, each person is different. 

My best advice is to make a decision, the best decision for you and own it.  No second guessing, no regrets.  Your decision is going to be the best one for you whatever it is.

Please feel free to contact me (randi.barrell@gmail.com) if you have any questions.  I can only speak from my own experience, but I will be honest with you for sure.

Wishing the best for you!
-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: New member seeking advice

Hi Vince,

Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through. But glad that you've joined us all as you've come to the best place for support and help and you'll get loads of each from everyone here.

When you meet with your onc next week please let us know what they say and recommend. My dads CC was diagnosed as inoperable and he was offered 2 choices of treatment, PDT or chemo and he chose the PDT as he felt that that would offer a better quality of life and quality of life was important to him and what he wanted. The decision to do or not do chemo is a very personal one and I would say to you to do what you want to do and you alone. It's a tough call and there are no right or wrong answers here.

You are doing the right thing though in seeking answers and information, please keep doing that and learn as much as you can. The 100 questions about biliary cancer is a great book and can be downloaded here -

http://www.cholangiocarcinoma.org/book.htm

Please let us know how things go next week and know as well that we are here for you too.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member seeking advice

My mom had a resection and radiation. There were 3 lymph nodes were involved. Our Dr. at Sloan recommended just gem for 6 months. My mom is a runner and she ran the entire 6 months. There were few side effects much less than those of gem/cim. If there is no proof that it works and your quality of life will suffer than what's the point..,to feel better about doing everything?? But with out hard core proof I feel (only my opinion) fight aggressively when you need too. Again everyone needs to do what they feel is best for them.

Re: New member seeking advice

It's been 6 weeks since my whipple procedure and I've been doing well. I'm eating fairly normal, even gained a few pounds, and working out at the gym. I decided to take the chemo. I started yesterday and had my first infusion of gemzar plus taking 8 pills a day of xeloda. Feeling a little tired but otherwise fine, but I realize it's early for the side effects to occur. Thanks for all the advise and good wishes from the website. I was happy to hear that Dr. Iyer, my oncologist, is on your board of directors and should be able to give me good advice on fighting this disease.

Re: New member seeking advice

Glad to hear things are going well for you.  Hoping it keeps on and gets even better.  smile  Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New member seeking advice

risingsun......congratulations on the success of your surgery and your ongoing recovery.  Good luck with the adjuvant therapy and please remember to stay in touch. 
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: New member seeking advice

Hi Risingsun,

That's great to hear that you are doing well after your whipples and I so hope that your recovery continues to go smoothly for you. Please remember to let us know how things go for you.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member seeking advice

Hi Risingsun,

I had my resection in August 2013, a long 12-hour procedure that had its complications and involved a slow recovery. My surgeon and my oncologist were of differing opinions about chemo, but at 62 (not so old but not so young either) I decided to not have the chemo. I had already been through so much misery, I took the carpe diem option. I will try to go about enjoying my life as much as possible and respond, as needed, to any related health issues that arise. It was a very personal decision which I thoroughly discussed with my partner and other family members who supported me completely. I empathize with you in this decision, having spent many hours thinking about it. Best of luck to you.
geghi

Re: New member seeking advice

Dear geghi, welcome to the best place to be for CC support. First of all congratulations on your successful surgery the one word we love most is surgery. Glad to read you are doing so much better. Yes, to chemo or not is one of the biggest decisions we have to make here and it is solely a personal choice. My husband had a Whipple and not only he said no to chemo but so did 4 ONCS/Radmen. We all understand the long recovery from surgery but glad you are back on your feet! Please keep us updated on your progress!

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: New member seeking advice

gheghi....a warm welcome from me to you as well.  Thanks for chiming in and sharing your thoughts on a much debated question.
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: New member seeking advice

Hi Gheghi, 

Welcome to our group.  Thanks for adding your experience and information.   These are all personal decisions and only the patient can decide what is the best decision for them.  Information and personal experiences  can help in making these decisions.  Thanks for your input and for joining in.  Glad that you found us but sorry you have a need to be here.   Keep on enjoying life and let us know how you are doing.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New member seeking advice

I have been on the gemzar since May and now have chemo induced gout in my knee which is already in bad shape due to sports. The doctor has  put me on meds for treatment/prevention of gout. I was wondering if anyone else has had this as a side effect of chemo ?