Topic: My Introduction

My son told me about this site and from what I see it appears to be a great source for people looking for the latest information on cholangiocarcinoma. My wife was diagnosed with it February of last year and since that time she has had chemotherapy (gemzar and cisplatin, proton radiation at MGH and in January after seeing much success and shrinkage of the tumor on her liver it was declared a none issue because it was dead tissue but the cancer metastasized to the lung. Fluid was building up in her lung cavity and and she went through an operation to drain it and to put powder substance between her lung and the rib cage. She is now going through chemo again but the doctors are not optimistic, they say the chemo will buy her some time but she says she is determined to fight. She is in good spirits and she has lost about 25 lbs. through all this but she is very strong. She was perfect health before this started and one of the healthiest 67 your old ladies I know. I have some questions on clinical trials and some other treatments that I will be getting to in the next day or so.
We hope to keep her strong until we can get her into another clinical trial as we did with proton radiation. It's been a long year and a half but we are praying for more time.

Sam

Re: My Introduction

Sam -
Welcome to our great little family, sorry you had to join us but you will find a great amount of support from everyone. Sounds like you have had your hands full but have been plugging away at it. My biggest question is....have you looked into a second or even third opinion? We are all big advocates of talking to as many people as possible.
Weight loss does seem to go with this. My husband lost about 80# total over the last year. He's starting to gain it back now. Protein is the biggest thing to keep her going. We did a lot of protein shakes with frozen fruit, ice cream, yogurt, protein powder and milk....blend it all up. My husband loved those. Carnation Instant Breakfast works good too along with all of those things like Ensure, Boost, etc. Those work great.
I don;t know a whole lot about clinical trials since we didn't have to go that route. But there will be plenty of people who will chime in that have.

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: My Introduction

Dear Sam, so very sorry to read about your wife but you have come to the best place to be for CC. Like Kris said it is so important to get 2nd and even 3rd opinions, it will not or should not upset the ONC as we know so little about CC yet. Also read up as much as you can. If you go to our Search engine at the top of the page, everything we have on trials will appear. Lastly but very paramount is attitude. A great attitude is everything. Please let us know how things go and keep us updated as we truly care.

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: My Introduction

Kris

Yes we did get second and third opinion and went on with the help of our son's to look at four different options because the tumor was unreceptive we had the option of radiation, proton radiation, targeted chemo to the tumor and we also considered a holistic approach. We were sold on the proton radiation at MGH for several reasons one being that the treatment was virtually unknown where we were getting chemo treatment and what we found was it was less evasive (not killing god cells) . We are attempting to find another clinical trial that will put this at bay for a longer period of time. Thanks for the suggestions on protein shakes.

Sam

Re: My Introduction

Sam.....you might already know, but our website provides a running feed to clinicaltrials.gov.
Here is the link: http://cholangiocarcinoma.org/professio … al-trials/
Good luck and please stay in touch - we care.
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: My Introduction

I cannot stress how important attitude is, and it sounds like your wife has a great one.  I lost 34 pounds in six months and regained it in the next eight.  Small frequent "grazings" worked best for me in the beginning.  It was a long time before I slept through the night - I regularly got up at 0200 and 0600.  I am partial to Kellogs' ToGo but Carnation IB was good, too.  Lots of protein bars - I alternated between high protein and high fiber.  There are many of them so there are lots of opportunities.  Some people have problems with no longer enjoying foods they have loved over the years.  Keep looking until you find foods she likes.

Trials require a lot of research to determine eligibility.  Depending on her onc and the hospital system, your wife might have better luck if you did preliminary research and presented the onc with options.  That's my plan for when trials seem the best option.  IMHO this is my life so I can't expect the doctor to do something I am not willing to do myself.  I am part of my team so this is something I can do.  This may sound a little militant, but I don't want to look back and say, "I wish I had done something else.  I just didn't know."

Walks, fresh air, being with people, all help attitude.  You will frequently see the statement (or very like it), "This cancer sucks!"  It does.  Say it.  Shout it.  OK.  Now get on with doing everything you can to help your wife.  Put on your best face for her.  Reading posts, it sometimes seems that this is harder on the caregivers than the patients.

Wow.  This post took a strange path.  Not at all what I had in mind when I started.  Definitely not my normal light-hearted post.

Sam - all you can do is all you can do.  You can't do any more, and you owe it to your wife and yourself not to do one iota less.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: My Introduction

Hi Sam,

Welcome to the site. Sorry that you had to find us all here and I'm sorry too to hear about your wife. But I'm glad that you've joined us here as you're in the best place for support and help and you'll get a ton of both from all of us. Not really much that I can add to what the others have said to you already but I wanted to welcome you here.

Duke is so right about what he says about a positive attitude and that will carry both you and your wife far indeed, and i also agree from what you have said that she does indeed sound like a fighter with a great attitude. Please keep coming back here and know that we are all here for you. We'll help as best as we can and you are not alone in this now. Looking forward to hearing more from you.

My best wishes to you and your wife,

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: My Introduction

Sam -
It definitely sounds like you have done a great job of getting her the best treatment possible. Keep up the good work and hopefully you will find the perfect one for her.

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: My Introduction

You guys and girls are awesome. Thanks for the words of encouragement.

Sam

Re: My Introduction

Sam,

Welcome and glad you have found this site.  It sounds like you are heading in the right direction with your wife's diagnosis and treatment.  You will find everyone here willing to help and support you in any way that we can.  Please let us know how things are going.

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: My Introduction

Hi Sam
Welcome to this wonderful group of loving and supportive friends. I hope we can help you with questions and give you support.
Hugs
Lisa

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