Topic: Good reports from Mayo

I haven't posted to this website for awhile, but wanted to pass along and update on my dad to all that have helped us along this journey.  He went spent yesterday in Rochester at the Mayo clinic for his second set of CT scans since having resection surgery in October, and all is CLEAN and CLEAR!  They are going to continue to watch him very closely, and will follow up again in late June.  He asked his hepatologist if his was a typical case, and he said, "No, yours is a very good case.  We can't always do the resection surgery, so just that fact alone makes yours a very good case."  One of his CT nurses told him he is a very "lucky" man.  I don't know anyone with CC who thinks he is "lucky", but dad is thankful for his good fortune and fantastic doctors.  He is going to celebrate by taking a dream trip to Norway in July!  Thanks be to God, and thanks to all of you who have been so supportive and full of information.  I have a Love/Hate relationship with this website!  I love that I have such wonderful access to information from those who know best, but hate that I have a need to come here at all.  (I'm sure you all understand.)

Re: Good reports from Mayo

This is wonderful news!  I hope he has a great trip.

And of course everyone here understands the love/hate relationship!

Hugs to you and yours!
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Good reports from Mayo

We love it! Great news. Yes, I wish they would come up with another word to describe our CC patients other than "lucky".  We will have to work on a come back! Great news though.

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: Good reports from Mayo

Kirsten,

I think we all have that same love/hate feeling about hating to have to be here but being glad that we are.

Such good news for your Dad. I'm sure his trip will be memorable.

Love & 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: Good reports from Mayo

Good for your Dad for following his dreams & continuing to stay in good health..... he is indeed lucky!

Best,
Tess

Re: Good reports from Mayo

Kirsten,

Great news on your Dad's condition! I think it is those who do better that can perhaps teach doctors the most about this confounded cc.

And, yes, would that we had all met under more fortunate circumstances, like maybe we all could have won the same Powerball lottery! Of course, that would mean I would have to buy a ticket.

Patty

Re: Good reports from Mayo

Kirsten

Thanks for passing along this very good news!  And, yes, we all do understand. 

Wishing your dad continuing good news and a wonderful trip to Norway!

Jean

Re: Good reports from Mayo

congrats to him (and you)!!!

Re: Good reports from Mayo

Kris....congratulations on the fantastic report.   Also, trust me all of us wish to be meeting on this site for anything other than what it is.  But, for right now it is the only place to converse with those understanding CC language.  The day will come when all conversations will be focused on the

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: Good reports from Mayo

Kris,

That's great news!  congrats to you and your dad!!

I've had cancer three times (all primary) and I am repeated told a few things:  I am lucky (which always makes me chuckle with the irony of it), I am young (only hear that when I am sick), and I am healthy (again I think, wait, don't I have cancer).

So, I think I will become concerned when they don't tell me i am lucky, young and healthy!!  i guess luck is a relative thing these days.

I too have a love/hate relationship with this site and come here only as frequently as my mental health can take it.

Continued good health to your dad and I hope he has a wonderful trip!

-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.

Re: Good reports from Mayo

Hello to All!  I am not only Brand New to this site but relatively new to this battle.  My husband was diagnosed in April 2011.  We have been on GEMCITABINE + CISPLATIN Chemo on a 3 week cycle Since mid April.  We had our first scan today since chemo started and we are very worried.  For those of you who are speaking of success what chemo treatments are the patient receiving?  How old is the patient?  How hard was it to get into Mayo and how long was the wait?  Sorry for so many questions, but we are very young for this disease and scared as He--!  Any information from those war heros would be gladdly received.

12 (edited by jathy1125 Wed, 29 Jun 2011 17:13:27)

Re: Good reports from Mayo

Linda- Welcome. and sorry you had to find us. I am a CC survivor!! I was 52 when I was diagnosed. I have been cancer free 2 years as of May 24, 2009. I will celebrate my 2 year anniversay of my second liver transplant July 4th!!! YEA!
My hope was a transplant. I was treated by one ot the top doctors for CC, Dr. Wiilliam Chapman at Barnes -Jewish Hospital, St.Louis  MO. Dr. Chapman helped develop the Mayo CC liver transplant protocol. You might want to think about contacting him he is the most amazing man and doctor.
Please contact me if I can help. You can also read my story at thetelegraph.com under christmas miracle. There is HOPE and I am proof!! Also there is a link posted in" general discussion" for another CC success story. Marion put it up today, so look under posts.
Lots of prayers-Cathy  (618-567-3247)

Re: Good reports from Mayo

Hello Linda and welcome to our wonderful family but sorry you had to join.
How old is your husband and where is he being treated. Actaully gem/cis seems to be the first cocktail of choice. From what I understand Mayo is not a long wait. If you go to our Search Engine at the top of the page and type in Mayo Clinic many posts on Mayo will come up for you to peruse. The best thing you can do is to gain knowledge as that is the best way to fight CC. Everyone is different and what works for one may not work for another. Make sure the Oncologist has had CC patients and is very familiar with CC.  If I may make a suggestion, I would repost under introductions as I am afraid you will get lost under this long thread. I know when you repost you will be hearing many more welcomes. Please keep us posted and jump right in with any questions you have.

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: Good reports from Mayo

Dear Lainy,
My husband is 43 years old.  We are currently being treated at the University of Virginia but I have recently reached out to Mayo in Jacksonville, FL.  We are waiting to hear back, as I have faxed the MR I have hear and are waiting for UVA to fax the "newer" stuff.  Our current oncologist was not pleased that I was questioning her proposed plan of action.  Our scan results came back mixed: local lymph nodes that had been effected have come down in size but it appears as though sometime between the initial scan ( with 3.5 wks of prior to initiation of tx) and the second scan last week we have seen increase in number and sl increase in size of existing tumors in liver.  We are changing to Oxaliplatin + 5Fu on Monday.  Our results so far are so mixed...... he feels OMG sooooo much better than prior to chemo initiation and all chemstry profile reuslts are within normal limits with the exception of AST which is nor only slightly elevated.  Any thoughts?

Thanks to All!
Linda

15 (edited by PCL1029 Fri, 08 Jul 2011 05:25:59)

Re: Good reports from Mayo

Hi,
Second opinion is strongly recommended for a 43 year old like your husband because age advantage is on his side.
If your husband's CC is intrahepatic(tumor original from the bile ducts in the liver)did they tell you is the tumor  resectable or not and why? Is it because of the lymph nodes involvement or the CC is too close to the portal vein or the main artery?  or they just first want to shrink the tumor then do resection later?These are the questions you should ask them and Mayo Clinics.

;if you cannot open the above link ;his entry is under the chemotherapy forum on the web site.
These are the current chemo treatment plans available to the physicians apart from the clinical trails that most of them will contain a molecularly  targeted agent like Tarceva,Avastin or Nexavir  or Erbitux to improve the overall survival rate to a better percentage;but they also come with additional side effects.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Good reports from Mayo

Hi Linda,

In addition to the link that Percy has given you, here is another link that may be of interest. It is a video of a webinar that was recently run regarding latest chemotherapy treatments for CC.

http://vimeo.com/22317348

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.

Re: Good reports from Mayo

Linda...just wanted to chime in and wish you a warm "hello."  I don't have much to add to the above discussion other than that often times another chemotherapy treatment will prove to be successful in the treatment of this cancer.  Keep up the hope and good luck with your anticipated visit at the Mayo Clinic.
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