Topic: Clear scan four years!

4 years ago this month I was diagnosed with cholangiocarcinoma.  I had my scan yesterday and it was good.  The doctor said if I have clear scans for another year, I can go to yearly scans.  I have another one end of January and then one in July.  This will be the longest I have gone.  I know others have had doctors who are less conservative and have gone further apart before now, but in spite of scanxiety, somehow it's been reassuring to have good news more frequently! I hope to see many posts of good news!

Re: Clear scan four years!

HAPPY,   HAPPY Anniversary! What great news I am doing cart wheels, well in my mind! YIPPEE so happy for you and wish for the good scans to keep coming. Time to celebrate!!!

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: Clear scan four years!

Dear Lainy…you have been such a support to all of us for so many years…..I hope you are doing well..last time I was on,  you had a scare..hope that is behind you….xxxxxoooo

Re: Clear scan four years!

Thanks for mentioning it. I am doing fairly better. The Remicade I think could work better, we shall see. I have an apt with the GI on August 5th and I want to talk to him about a new FDA approved RX called entyvio.  We did talk about it last time but he wanted me to continue the Remicade. We upped the dosage but its not that much better. One more thing I want to present to him is...there is a new procedure now for Ulcerative Colitis and no delicate way to put this..... it is called a Poo Transplant. That says it all and my daughter is willing. I just think 3 years of being dictated by my innards is long enough!! BUT I am so very happy for you!!! And its so good to see your smiling face on here.

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: Clear scan four years!

What brilliant news! Thanks so much for sharing that with us all and I know that news like yours gives so much hope to everyone else! My fingers are so crossed for you that your next 2 scans are equally as good so that you go onto the yearly ones.

Hoping that the good news continues like it has for you and please keep us updated on everything.

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.

6 (edited by marions Thu, 24 Jul 2014 00:11:48)

Re: Clear scan four years!

Kathy....this is the most fantastic news to share with us.  Have you shared it with your favorite surgeon yet?
How are the girls?  They must be nearly grown up by now? 
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: Clear scan four years!

Marian..have you heard anything about  "my favorite surgeon?" I do miss him! I don't know if he does any more surgery for cholangiocarcinoma or Is too busy being head  of surgery  The girls are 14 and 15 so I do have to hang around a bit longer for them!  They are great!  The 15 year old just went on an international dance exchange to Europe for a
Month so we were groupies and followed her to Denmark then spent 3 more weeks, 2 with our son, his wife and three young children (who live in Ireland) in a chalet  in the Swiss Alps. Broke the bank but it was heaven. Life is good.
I was so pleased to hear about the new study being done on younger patients.

Re: Clear scan four years!

What great news!! LOVE LOVE LOVE reading this post! Here's to more clean scans and a great lessening of scanxiety!

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: Clear scan four years!

Kris. Thank you!  It is so comforting to know there is a cheering section out there.  I love coming back to this site and recognizing familiar names over the four years.
Lainy. You are right. Time to get those innards under control and show them who's boss.  I am sorry to ear of this continuing struggle and  hope your August appointment gets you more relief.
Big hug,

Kathy

Re: Clear scan four years!

Kathy,

Love hearing such great news.  So happy for you.  smile

Hugs,
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: Clear scan four years!

Fabulous... Congratulations, Kathy! So glad you had a big fun European adventure this summer. Really nice to hear good news!

Willow

Re: Clear scan four years!

Kathy....Your favorite surgeon chaired (2012) the NCI Hep. Task Force of which I am one of two advocates.   He is an ongoing member of the cholangiocarcinoma  foundation medical advisory committee and yes, I last spoke (in person) with him at GI ASCO.  He is happy with his new position in Texas, loves his work and his patients.  Don't hesitate from reaching out to him. 
Love, love, love the way you break the bank, dear Kathy.
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

13 (edited by chezWright@aol.com Fri, 25 Jul 2014 13:36:53)

Re: Clear scan four years!

Gavin, Kris, Karla and Sara (Willow)…Thank you SO much!  I am trying to convince myself that life is normal now
whatever normal is….:)

Marion..thank you for letting me know about Dr. C.  I truly miss him.  He had such a connection with his patients that is unique and goes beyond surgical skills and knowledge.  Thank you for encouraging me to write.  I have already looked up his address.  I am glad to hear he is happy in  his new position in spite of my trying to convince him that Texas was nowhere near as good a place to live as Maryland (sorry Texans!).  When you see him again, remind him of his fan club in Maryland who owe their lives to him.

Re: Clear scan four years!

Dear Kathy,
Congratulations on the great news! Always so good to hear such wonderful stories of success! Gives such HOPE to so many others! Thank you!
Melinda

Re: Clear scan four years!

You're most welcome Kathy! And like Melinda says, your story gives hope to tons of people here! And remember, that for every person who is registered here with the CCF and logs in and reads you news, there are tons and tons of people who read these posts who are not logged in and have not signed up to join the CCF. So your great news reaches soooo many people! smile

Hugs,

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: Clear scan four years!

Gavin and Melinda. Thank you!!xxoo the only good thing for me about CC was losing 35 pounds! A lifelong struggle. And sure enough it all came back. Now to lose it and not worry that I am losing because of CC. The mind does strange things. At least mine does smile