Topic: Thank you!

My husband's life was saved as a result of information found on these boards, and for that I am profoundly grateful. Thank you, thank you!

My husband was diagnosed with nonresectable Stage IV intrahepatic cholangiocarcinoma, deep vein thrombosis, and pulmonary emboli in January. We were devastated. Worse, his oncologist at Cedars Sinai really only held out hope of palliative care and was adamant that my husband would never be a candidate for resection. He's only 52! How can this be possible? But one of my husband's close friends found this community and, based on the information shared by other patients, was able to make recommendations about other physicians and possible treatment plans. We needed someone who believed in beating this disease and was willing to stand by my husband in this fight--and mirabile dictu!--we found Dr. Selby at USC. After a 10 hour surgery, my husband's surgical team pronounced him "visibly cancer-free"--and three months and two chemo rounds later, the disease has not returned. A miracle! He's lost 40 pounds, is still on chemo and will likely move to radiation next, but right now, he's in great shape and his attitude is truly inspirational. The chemo (he's on gemzar/cisplatin) causes nausea and fatigue. "I don't get nausea and fatigue," he says. "I CAUSE nausea and fatigue." But despite the toll it's taking on his body, he even played a little bit of tennis today! 

I just wanted you to know of the difference you have all made in his recovery, and how much this information has helped us negotiate our fear of the unknown. Of course we don't know what the outcome will be--but we do know that he's much better today, and we are no longer talking about strictly palliative care. Now that he's been debulked we're looking at a very different playing field.

Thank you for helping us get to this point. Let's hope that in five years we can pronounce him cured!

2 (edited by Lainy Sun, 19 May 2013 08:42:27)

Re: Thank you!

Dear RIN, welcome to our remarkable family but sorry you had to find us! This is a fabulous post! We love the words shrinkage and surgery! Your husband went to a great Hospital and Doctor and his attitude is commendable! You are doing all the right things and hubby is now one of our Super Heros. How wonderful that he is hitting the balls and with each slam I can hear him saying, "take that you CC". This is a really good Miracle story and with your attitudes and fighting spirit I don't see how you can loose. Please hang around us and keep us updated on his progress. Best wishes for continued success.

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: Thank you!

Rin....A big thanks to you, dear Rin, for joining our site.  Your comments are very much appreciated.  This foundation was born out of love and an enormous amount of volunteer work to bring together all touched by this disease.  To read stories such as the one you presented, makes it all worthwhile.  Please know that each and everyone joining in contributes to the success of not only this discussion board, but also gives us the reasons to work even harder to change the world of Cholangiocarcinoma. 
As you have mentioned and I could not agree more - your husband's chances of conquering this disease have greatly increased with the resection performed.  Congratulations on a great recovery and the tolerable response to the adjuvant regimen.  I wish for many more of these encouraging postings.
Again, thanks for joining and please, stay in touch.
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: Thank you!

Dear Rin:

Welcome to the site! I was overjoyed to hear that information on this board led to such a wonderful outcome. As I have expressed on this board, I truly do think Dr. Selby truly is a gift to those is us fighting this disease.  Much like your husband, I was diagnosed at 51. When UCLA would do nothing for me, other than palliative radiation, Dr. Selby performed two extensive surgeries to render me free of visible disease. His team continues to fight for me, and I am an 18 month survivor, still active and working.

Congratulations on the gift you have received and we will look forward to more positive reports!

Mark

Re: Thank you!

Mark....I was so much hoping for you to chime in.
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: Thank you!

Dear Rin,

Just wanted to add my welcome to the others.  Glad you joined in the discussion but sorry you had reason to be here.

The news about your husband is fabulous.  You and he are true cc heroes!!

Here's to many clean scans in your future!!

Hugs-
-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.

7 (edited by Rin Mon, 20 May 2013 16:28:19)

Re: Thank you!

Mark and Randi, you--and survivors like you--give me so much hope for the future! I just read that Doors keyboardist Ray Manzarek died of cholangiocarcinoma, and I'm reminded that this disease shows no mercy. My husband keeps telling me that when the odds are 99-to-1, he will ALWAYS be the one who beats the odds. I believe it! and I am so grateful to hear of the success of others who continue to fight and win. Tomorrow is another chemo day at the USC Infusion Center in Pasadena, and I keep thinking that with every drop of poison in his body comes a new chance for survival.

Again, thank you for being part of this community of people who understand and care. My world has become all-cancer-all-the-time, and it's sometimes difficult to explain that to people who are not experiencing the cancer rollercoaster. And as you all know, it's some ride.

Re: Thank you!

Hi Rin,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your husband. But I am glad that you have joined us all here and I am so very glad indeed to hear how well your husband is doing now.

Please keep coming back and if we can help then you know that we will. And also, please keep us updated on how things go for your husband, we are call here for you.

My best wishes to you and your husband,

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.