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

Here's my story so far

Andy in England
Life is about enjoying every day

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

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

Peace, hope, and healing to all!

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

Great story Andie and I agree 100%. I wrote the same thing a few weeks ago about my husband. Just because you can't have surgery doesn't mean you can't beat this and live for years and years. You are an inspiration. Keep the good news coming!    Mary

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

Hi Andy. What can one say after reading your post except, you now join our lists of Miracles! Good for you and we pray you continue your success story.
Wonderful news!! Andy by the way, a huge welcome to our family!

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
That's a wonderful inspiring story.  I'm delighted for you and your family.

Gerry

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

Andy,
What wonderful and inspiring news. It would be a tremendous help if you posted the 15 supplements you took under the alternative health section. I am sure several of our members would find it very helpful.

Congrats again.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

7 (edited by marions Fri, 09 Jul 2010 23:22:34)

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

Andy.....I would also like to chime in and thank you for sharing this uplifting story.  We  can never get enough of hearing good news. 
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...

Hi Andy,

Welcome to the site, and thank you so much for sharing your amazing story here with us all. Hoping that your good news continues for you and looking forward to hearing more about it.

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...

Hi Andy,

Thanks for sharing your wonderful news.  My Dad was diagnosed in April with inoperable CC due to location and is being treated at the QE in Birmingham, is this where you were treated?  My Dad is under Dr Bramhall.  He was due to start Gem/Cis last month but his metal stents decided to block making his bilirubin too high.  He is currently in the QE after having his stents unblocked and extended. Your story sounds very much like my Dads in regard to tumour location and size.  I really hope my dad responds to the treatment like you did.  Reading your story as given me hope and I'm going to show it to my Mom and Dad.

Could you tell me what supplements you take and did you take them whilst on Chemo?  My dad takes Omega 3 at the moment and has started drinking hot water and lemon as we read it was a natural bile thinner.

Look forward to hearing from you

Best wishes to you and your family

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...

Andy,
Your story is fantastic. My husband was recently diagnosed with inoperable CC. We have a little baby who will be 1 year this weekend. Your story gives us such inspiration we will celebrate her birthday with hope in our hearts.
Thank you so much for sharing.
C

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

Hello CM and welcome to our site.  Stories like Andy's give hope and allow us to stay realistic and optimistic.  I am wishing for a happy 1st Birthday Party.  Is it a boy or a girl?
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...

Andy,

thank you so much for your story.  It was very uplifting and we can all use more of that! 

Please do post those supplements that you were taking on the alternative health section as Kris mentioned.  I know I'm interested and I'm sure many others would love to read about them.

Thanks again and welcome to our site.  Please come back often to share your knowledge and help with others.

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

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

Hi All,

Thanks so much for your positive responses.  It really does make a difference to know others care and are supporting you. 

For those that want details of what we did in terms of supplements and diets, I've now posted them here:
http://www.cholangiocarcinoma.org/punbb … hp?id=4557
There's a lot that others have already posted, but I hope the references and sources are useful.

Best wishes to all for a positive future!

Andy in England
Life is about enjoying every day

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

Andy,

Thank you SO much for sharing.  It means so much to hear success stories.  I certaintly wish you continued good health!  I will share your story with my mom, as well as your supplement program you've embarked on. 

Best Wishes,

Marni

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

Andy, congratulations! That is fantastic ! Your story gives hope to us all. Thank you. I am going to print this out and show it too my Wife who's tumor (Klatskins) sounds similar to yours. Gary

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

Andy,

     We are sharing the same time frame for this disease. and also a similar mindset.  I feel that without the option of surgery, the only choice we have is treat this as a chronic disease. I am having PET and MRI this week, which I know will confirm my belief.  Best wishes for your journey.

   John Thomas

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

Wauw - what a fantastic description to read. I just logged on to the forum with the objective to write a post about experiences with inoperable cancer and the time that treatment keeps others up and going. I have been told that I will be having chemoterapy for the rest of my life - hopefully with some breaks inbetween. I plan to proof this plan to be wrong!
Reading your story Andy really makes my hopes even bigger. I'm young (37) and have no symptoms at all so I really want to proof the plan to be wrong.
I myself am in the proces of identifying what can help me and boost my body to work better during the chemoterapy. I have some food allergies but I will find a way to solve this.
Thank you again for your encouraging post.
Good luck. 

Krisi

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

Andy,  I'm so glad to read your story.  I have had cc about a year longer than you---have had NO problems with my bile ducts, but my original tumor was 13 1/2 cm.  I can't have surgery due to involvement with the great vessels of the liver.  I have had cisplatin, gemcitabine,  5 fu, Xeloda, & radiation 2 times.  I was fortunate to use the big Novalis machine at the University of Nebraska.  No side effects at all from the radiation.  What a blessing.  So far so good & the tumor is 71/2 cm the last CT I had in early Aug.  I am still working full time & have a goal set for retirement in 2 years.  I hope I am so fortunate to see that day.  Sharon  Nebraska  USA

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

Hello Sharon and welcome to our site.  Thanks for sharing your success story. That is quite an impressive reduction in tumor size you have achieved.  Congratulations.  The beam radiation in combination with the various chemotherapies appears to be quite effective for you.  I just love these stories, because it gives hope to many.
Keep up the good news and please, continue to share with us.  By the way, do you have big plans for your retirement?
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...

Hello Sharon and welcome to our famiily. You are already an awesome survivor. Thank you for your story as it will give others encouragement. Keep up the good work and please keep us posted.

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 Sharon,

Welcome to the site. I would just like to join Marion and Lainy in welcoming you here and also to thank you for sharing your story with us all. I hope that you will keep coming back here and looking forward to hearing more good news from you.

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 -- I am new to this site and am thrilled with your story! It really is inspiring!

Fighting CLC since 11-2010. Looking for silver linings every day.

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

Amazing! Thank you for sharing your story and bringing everyone joy and hope for Christmas! I commend your wife for being strong and for taking things into her own hands and comment you for looking at all possible treatment options no matter how out-of-the-norm they were!

I pray that God continues to bless your family!

Mery Christmas

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

that story sounds exactly like my mother's, (minus the chemo and tumor shrinking). She is unoperable with the cancer starting right in the same place on her main bile duct at the branch as well.  It is now in her liver as well unfortunately but she has been juicing, accupuncture, positive thoughts and calmness.  They discouraged her from chemotherapy as they were concerned cause she was a little weak but she has improved over the last few months.  Energy levels better, and amazing color and appetite.  Just having some issues now with extra pain and fluid.  We are all so afraid the tumours have grown and are waiting for a CT.  I have sent her your story so she can read it for motivation.  I am so happy to hear of your success!! I hope this can be possible with my poor mother too.

Take care of yourself and thanks for the uplifting story.  It lifted my spirits.  It has been such a struggle!

Janet

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

Hi Janet,
I don't know about your mother's overall health, but I was amazed that my chemo (with Gemcytabine only) had no side effects on me at all, at least for the first 5 or 6 cycles.  After then it messed up my liver enzymes, but by then my tumour was gone.  I know from others and my oncologist that Cisplatin has harsher effects, so maybe Gemcytabine on its own would be worth talking about?
Keep up your strength!
Andy

Andy in England
Life is about enjoying every day