Topic: First visit to site...have questions re chemo

I was diagnosed with cholangiocarcinoma September 2007. I have had four surgeries removing my gallbladder, part of my liver, full hysterectomy, a removal of part of my colon leading to a colostomy bag.  The last surgery was to remove tumors using the " shake & bake" method (pouring Cisplatin directly into abdominal area and waiting 2hours while rotating my body). That was is January 2012. I've been on different chemos ever since.

The worst chemo was injection thru an intraparentaneal ( sp?) port to provide Cisplatin directly into my abdomen along with lots of hydration. I would gain 10 lbs each time. After injection spending 2 hours turning your body every 15 minutes.

The last series I could only deal with 2 sessions...Abraxine...an off label drug.  They are now changing to taxatore and I'm wondering if and how others have handled it.

Re: First visit to site...have questions re chemo

Dear Catstruman, welcome to our remarkable family but sorry you had to join us. I can tell you are a true warrior but I must say I have never heard of the "shake and bake" or as I would call it a revolving door! Another WOW as you have really been through a lot but look at you a 6 year survivor. I don't have personal experience with Chemo as my husband had Radiation then Cyber Knife, but I do know you will be hearing from many others on this Board who can answer your question. I have 2 questions though, where are you being treated and have you ever sought out another opinion? Sending you a ton of  best wishes and please do keep us posted. P.S. Hang in here as weekends can slow down but they will all be along soon.

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: First visit to site...have questions re chemo

I think you are the first member, at least that I can remember, who has received intra-abdominal chemo.  I know it is used for other GI cancers, like colon.

Welcome to the site!

Susie

Re: First visit to site...have questions re chemo

Hi Castruman,

Welcome to the site. Sorry that you had to find us all here but so glad that you have joined us all as you have so come to the best place out there for support and help and I know that you'll get a ton of both from everyone here. Thanks for sharing with us about everything and wow! You sure have been through so much over the years have you not!

I've no personal experience with chemo either as my dad was not able to have it but there are many members here on the site who either they or their loved on has been through it and I know that they will be along soon to share their experiences with that with you. We also have a great chemo board here on the site and that may also be of interest to you as well. It can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

Some other links for you. A great post by Percy regarding chemos -

http://www.cholangiocarcinoma.org/punbb … hp?id=7843

Posts by our members regarding Abraxane -

http://www.cholangiocarcinoma.org/punbb … 1737442124

And Taxotere -

http://www.cholangiocarcinoma.org/punbb … =757465533

I hope that some of these are useful to you. And please keep coming back here as well. If you have questions then please just ask and we'll do what we can to help in answering them. And keep us updated on how everything goes for you as well. I hope that your new chemo works well for you and I hope that the side effects are more tolerable than the last ones. Please know that we are here for you too and we care.

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: First visit to site...have questions re chemo

Castruman....I would like to follow the others in welcoming you to our site.  As Susie has mentioned, you are the first reporting on intra-abdominal chemo.  Is the removal of the colon related to inflammatory bowel disease?  You sure have gone through a lot, dear Castruman.  Where have you been treated and how are you feeling at this time?
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: First visit to site...have questions re chemo

I'd like to add my welcome to the site that no one wants to have to join, but are so glad they did!  I have only seen this type of intra-abdominal chemo on Grey's Anatomy on TV!  Sounds very forward thinking and I too wonder where you had this done and what doctor you are using.

Best wishes to you and continued good response to treatment.

-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: First visit to site...have questions re chemo

Thank you all for your welcome, information. Good wishes, and continued contact. 

My oncologist is Dr. mark Campbell.  He is the founder of the Cancer and Hemotology Centers of Western MI.  He's incredible.  I first met him as my mothers oncologist and only by coincidence did I end up as his patient.  He partners with the best abdominal surgeon, Dr. Chung who has performed 3 "successful" surgeries since 2009. The last one was the "shake and bake" I mentioned previously followed with the intraparentaneal chemo that I tolerated for 5 weeks. I hated it.  I stopped the therapy even though my markers had gone down, I just couldn't do it anymore.

I'm now at the point where I need to make life decisions about continued chemo, change the chemo to keep the tumors at bay, or stop altogether.  I want quality not quantity of life.

I hope I've answered questions you all asked.  Thank you so much for your welcome. I'm sure we will chat again.  Much care to you and yours dealing with this cancer.  Glad I'm not alone.

Re: First visit to site...have questions re chemo

Dear Catstruman, no you are NOT alone as we are all family, laughing, crying, advising and comforting. The only thing we don't due is exchange birthday gifts! Please know that your decisions are very respected on this Board and they are YOUR decisions. Whatever you decide IS the right decision. 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: First visit to site...have questions re chemo

Hi Castruman,

Like Lainy says, indeed you are certainly not alone anymore. You now have all of us in your corner fighting with you! The quality of life vs quantity of life debate is one that comes up here quite frequently and my dad went through that as well after his diagnosis. His CC was deemed inoperable after diagnosis and my dad decided that he wanted quality of life for the time that he had left. So that helped him in his decision about treatment and that was why he chose PDT over chemo as his GI doc thought PDT would give him a better quality of life than he would have had had he gone through chemo. I told my dad too that I would support him in whatever decisions that he made and that he should make decisions that he felt were right for him.

And of course, you should make decisions that you feel are right for you and you alone and we will all of course support you all the way in whatever you want to do. We are here for you and yes, I too am sure that we will chat again.

Best wishes,

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.