Re: My story, in case it helps...

Andy

God bless you and your positive attitude. Your story helos by giving us hope.

Re: My story, in case it helps...

Kristin wrote:

Andy, that's TREMENDOUS! We're so happy to hear your story. And it's a big help to me personally. I've been putting off chemo as long as possible, because so many people assume it "won't really help", but now my oncologist is saying it's really time for it. Hearing your experience is so encouraging for me. Thanks so much for posting it. And welcome to our group!

My best wishes to you,

Kristin

Why would you put off chemo is that's the only treatment that's available? My CC is inoperable so it's the only option available. Yeah, chemo is no cakewalk. Side effects can be miserable but if it's all I can do, well, I'm not going down without a valiant effort.

Re: My story, in case it helps...

Andy, I must agree with the others; your story is wonderful reading for so many, myself included. Don

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: My story, in case it helps...

Wow, what a wonderful story Andy.  I had surgery and Gemzar and considered myself very lucky with this pernicious disease.

Good luck in the future.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: My story, in case it helps...

Pernicious - my new word for today. I had to look it up Jim. Good word. Take care. Nancy

Loving my husband from afar.

Re: My story, in case it helps...

Hi Joolz, Maria and Jim,
Sorry I've not responded before, but glad to hear your stories. Hope you are still doing well - I've now been 'free' and well for 18 months...
Andy

Andy in England
Life is about enjoying every day

Re: My story, in case it helps...

Andy:
I am so glad you responded. I've only been on this site since March or April 2011 since being diagnosed myself, and hadn't seen this. It is inspiring! My tumor is also shrinking at an amazing rate on Gem/Ox. I am not doing any "alternative" medicines, supplements or diet yet. I had surgery to prepare for my treatments but the tumor itself is not operable at present. After reading your story, I hope to not have to have surgery. I'm staying as positive and realistic as possible but your story gives me hope that I may not NEED surgery in the future.
My tumor has shrunk from 5.4x4.3cm to 4.0x2.4cm, with the lymph nodes no longer being noticeably affected. So I keep praying every day that I can have a positive outcome. After reading your story, I can hope that maybe I can get a positive outcome without another surgery! At least I know it's possible. So I just wanted to thank you for sharing.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My story, in case it helps...

Hi Kris,
Great to hear your story too!  If it has shrunk that much already (and just work out the volume change in those measurements) then there's no reason why it can't continue to shrink more. Keep at it!
I met my radiologist tonight as my stents are now blocking, after 9 months.  He's going to replace them on Thursday, and is already talking of advances in technology where stents can last longer still.  But replacing stents once in a while is a small price to pay for being alive and healthy and cancer-free!
My best wishes - and thoughts - are with you.
Andy

Andy in England
Life is about enjoying every day

Re: My story, in case it helps...

Good luck on Thursday Andy. I will pray that you have a wonderfully trouble free procedure.
And you're right: that's a small price to pay for being alive. So far most of what I've given up is my active lifestyle. I just don't have the energy or stamina for my "old" life. But I'm learning to compensate. Just slowing down but it beats the alternative!
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My story, in case it helps...

Dear Andy, glad to hear you are doing well. My husband had stent replacement every 3 months but we also felt it was a small price to pay. Hope you continue to do well. Much luck on Thursday.

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 story, in case it helps...

Dear Kris, I so love your attitude. I always say you are living your "new normal". I agree it is a small price to pay, I just wish all of you didn't have to pay any price! I too am wishing you positive outcomes!

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 story, in case it helps...

Andy....good luck on Thursday.  You have done well. Nine months are good long time for these stents.  I will be thinking of you and am sending all my best wishes your way.
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 story, in case it helps...

Hi Andy,

I hope that your stent replacement goes well on Thursday, loads of positive thoughts coming your way from over here. Please let us know how it goes.

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.

Re: My story, in case it helps...

Andy-your story is very interesting. Hope your stent replacement goes well! Johanna

Re: My story, in case it helps...

Yes, hope coming from Sweden as well, that the procedure will be easily done. On my bad days your story, among others, are what lifts me up.
Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: My story, in case it helps...

Andy,

I'm so pleased you are doing so well, good luck with your stent replacement.  Is it being done at the QE Birmingham?

Best wishes

Andrea

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".

Re: My story, in case it helps...

I haven't been on in awhile, but today I had my 1 year scan and it was clear!  I know things can change in a heartbeat, but I've gotten to hold my newest grandson born 9 August in Ireland; been peacefully watching the sunrise over a lake in Vermont, seen my two youngest girls get a year older, and feel totally blessed at this point.  A  year ago, I didn't know I'd be around today.  There IS hope.
Kathy

Re: My story, in case it helps...

Way to go Kathy!!  We love a successful journey! Everything is new and beautiful, a new Grandson, Girls a new year older, a beautiful new Sunrise and I wish for you many more new things in your life and many a Sunrise!

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 story, in case it helps...

Hi Kathy......it always is great to hear from you.  Thanks for sharing the wonderful news with us.  Congratulations and continue to enjoy your life.  And, don't forget to check in with us.
All my best wishes,
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 story, in case it helps...

Kathy: That is great news! I hope to one day be able to say this, too! Actually, my wish is that ALL of us get to say that.
Andy: I hope your procedure went well. I am waiting to hear how things are since then.
And Gavin, Marion and Lainy: I love that you respond and always try to have positive outlooks or at least sympathetic responses to everyone's posts. It must be hard to read some of the posts. I know I read some of the subject headers and know I wouldn't be able to get thru some of them.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My story, in case it helps...

Kris, thank you kindly. I guess we just don't think about it much as the gratification we get from trying to be of help is beyond words. I made the vow to myself when Teddy got CC, and in a crazy way it even made me feel more connected to him and his journey, and now that he is watching over me I am doing it as still some kind of connection. So, you see, on my part there may be a little selfishness going on here. Then again, if it was not for this site I would never have met so many wonderful people from all over the world. I am addicted!!!

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 story, in case it helps...

Way to go, Kathy. Great news.

Lainy, what you are is.......as singer Robert Palmer put it, "Addicted to Love".

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: My story, in case it helps...

OMGosh, never thought of it that way. P.S. now you are dating yourself with that song title!

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 story, in case it helps...

Kris....thank you for your kind comments.  What drives me with this cancer is the absolute and total revenge for all it has done to our lives, and what it continues to do.
Together we must find the answer.
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