Topic: New to Group

My wife was diagnosed about 1 month ago and I have been trying to research and learn as much as I can concerning her condition.  It seems that chemotherapy ( cisplatin and gemcitabine which seems to be the chemicals of choice) are not very successful in shrinking tumors or arresting the disease.

They have told us surgery is not an option .


I've begun to look into clinical trials to see if she is eligible for any of those.

I have to say the first discussion thread I read from Oceangirl was extremely depressing as it seemed her brother passed in no time.   

I guess I 'm looking for treatment options, success sorties, messages of hope.

As I imagine most people have stated this came out of the blue and is quite devasting news.   

I need to spend some more time reading thru the discussion boards but I wanted to post something.

mark

Re: New to Group

Mark -
Well, welcome to the family, not one we necessarily want to be a part of. My husband - Mark by the way - was diagnosed in May with CC. It has been a roller coaster ride so far but he is back to work again and not feeling too bad. He was able to have a resection and he is now doing chemo of gemcitabine and oxaliplatin. He's not having a lot of side effects.

As you read around in here more you will see more and more people who are living with his disease and treating more as a chronic disease than anything else. There's a thread floating around that talks about milestones...you could probably use the search option to look for it and is had lots of stories and years of survival.

Hang in there.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New to Group

Dear Mark, welcome to the best little club in the world that no one wishes to join. I am sorry to read about your wife. First of all this IS a place of HOPE and Miracles. There are a few things for you to know. Do try to read up on CC and also use our search engine at the top by typing in a word and a lot of posts will come up on that subject. Knowledge is our best tool for fighting CC. We are huge believers in 2nd and 3rd opinions as quite a few have had good results having other eyes look. Yes, Gem/Cis seems to be the 1st choice of Cocktail. The ONC will follow with Scans that will show if she needs to change chemo or not. Please know that some members have been DX with Stage IV and told no options, went for another opinion with a little more aggressive ONC with CC experience and a Hospital with CC experience turned it all around. Please try to take one day at a time and be very strong. May I ask where your wife is being treated and where you folks are from? Also what did the ONC say about her Diagnosis, like where is the CC. Has she had Scans and LABS that led to his conclusions? One more thing once treatment is started your fright will turn to fight. Looking forward to hearing more from you and know we are all here for your 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: New to Group

Hi,
If your wife has the CCA originated from outside of the liver or around the areas where the common bile duct meets the liver, try to read ,Eli,one of our member's messages about his wife's journey.
If your wife's CCA originated from inside of the liver, you can read " Percy's  history " .
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: New to Group

Mark,
Welcome to our little family. Although none of us wants to belong, it is a great source of information and support.
In answer to your question, gem/cis does seem to be the first choice for many oncs. My original onc chose gem/Ox and the tumor responded extremely well, but my body could not tolerate it for long. Some people can, though.
I was originally diagnosed in March 2011 and was never able to have a resection. After 31 months, I can tell you this... I still have no symptoms. I am in a phase 1 trial, and it seems to be holding the cancer cells at bay. I am not in remission; I am stable. I have come to appreciate that word, as I will never be operable according to the current medical community. But who knows? I'm planning on sticking around until they find a cure!
This journey has in no way been easy, but it CAN be long!

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.

6 (edited by marions Mon, 07 Oct 2013 20:19:02)

Re: New to Group

Mark...I too would like to welcome you to our site.   I am sorry to hear that you are dismayed by reading the “bad” postings on this site.  Throughout the seven years this discussion board has been active, similar comments have been made by members on this discussion forum and by those I have engaged with in  private conversations.

We, the foundation board members and the members of this site, have decided that in order to stay true to our commitment of offering a non-censored place for those touched by this cancer, all information should be included. 

We encourage everyone to speak freely, to ask questions and to share thoughts and ideas.    It is only natural that frequent discussions lend to personal interactions amongst all of our members.  We encourage and foster this on our site. 

Would we prefer to have a good news section only?  Absolutely, we do. It is our goal to see a cure for this cancer.  However; given the nature of this disease, we must accept that all aspects need to be addressed freely, openly and without judgment.

Having said that, dear Mark, there are ways to bypass some threads of no interest to you or those threads causing you to be upset. 

The “Good News Section” is the perfect place to be.  You can also by-pass postings by simply ignoring those too disturbing to read and by starting your very own personal thread.

Either way, dear Mark, we are here for you and we are glad to help.
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: New to Group

Mark - My husband, Ron, who was diagnosed with CC only 2 months ago, has been undergoing chemo treatments of Gem/Cis and it has been working very well for him.  We have been told that the tumor IS shrinking, so don't be discouraged if you read that this treatment hasn't worked for someone else. 
Ron will be having new scans done in 2 weeks and we are looking forward to seeing some positive results!  Take care.
Judy

Re: New to Group

Mark, Welcome and sorry you had to find us. You are right about our site, it is a very depressing site but we have a very depressing rare cancer with very little information out there, so thanks to this site there is HOPE, and many life experiences that have led people to new doctors or better questions to old doctors who are still learning about our cancer.
I was diagnosed July 31, 2008 and found this site and also found it very upsetting and stayed away, but one reason was I had a doctor who had "you will survive attitude" and didn't need the support, guidance, and information you will find here. I am proud to say I am 41/2 years cancer free, I was stage 4 and inoperable and my only HOPE was a transplant. I have an amazing story to share and keep it posted at www.catherinedunnagan.com under the telegraph link. I came back to this site after my journey settled down to show there is HOPE. In the 5 years I have followed this site, things have changed so much, more trials, more, public awareness and more long term survival stories from people living with CC. Krisooj has changed her diagnose so many ups and downs, and just posted great news. Randi Bee, Percy, Patty from Illinios, Lisa Craine, Derrin Hampton, and Tiffany who went from no surgery to just having a transplant.....!! There is good news and many many  unique success stories.
There is so much HOPE and info on this site!!
Lots of prayers and HOPE-Cathy

Re: New to Group

Thank you Kathy!

Willow

Re: New to Group

Mark
welcome.  I will say that some people have "luck" with the gem/cis
combo shrinking the tumors.  My husband (who is stage 4 with mets. to
lymph nodes and lungs) has seen 66% shrinkage of his one main liver
tumor.  At last PET scan his lymph nodes showed no active cancer at all
and his lungs nodules have also gotten smaller.  Those are all good
things in our book with this cancer.

We are thrilled with that response.  his side effects have
also been MINIMAL on this chemo as well.  So while we know
that it is not a cure, it is buying him time.  Time is a good thing
and his quality of life has remained wonderful.

For now, those are things we hold on to.~
dorien

Re: New to Group

Mark,
Welcome to this wonderful group of caring and loving friends. You will find such good information and reading especially from Percy. If you would like to talk to another CC patient please feel free to call me at 330-903-6868. I am a three year survivor.
Higs
Lisa Craine

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