Topic: Ready to join the discussion

Hi everyone,

I have been popping in periodically and reading the discussions but haven't jumped in till now. My mom is on this board somewhere also (Ceci).

I'm a 42 y/o mother of an amazing 20 month daughter and great husband of 3 years in Baton Rouge.

I was diagnosed in late October after going to the dr for some general pain around my right side, thinking it was a gall stone. The ultrasound and biopsy revealed 12 tumors on my liver (11 on one side, and 1 on the other side) and due to the elevated CA 919 levels - I was given a CC diagnosis by my local oncologist and told essentially it was inoperable due to the number and place of the tumors. I think the largest is 2.5 or 3 mm. They didn't find it had spread anywhere else outside the liver. The only treatment option given was chemo - to prolong quality of life. The dr. told me to plan my life in months, not years.

We immediately traveled to MD Anderson and met with Dr. Shroff who confirmed the diagnosis and treatment options. She did say a liver transplant was a remote remote possibility after 6-10 months of good response to chemo but not to get my hopes up, essentially.

I started on chemo - cys/gem in early November and have completed 3 rounds with pretty manageable side effects.

I did send my files to John Hopkins and MSK for consults. John Hopkins concurred with the chemo being the first line of treatment. Dr. Fong from MSK called me to say he believes a portal vein embolization would be a possibility if the chemo stops or shrinks the tumors. He wants to see the scans after 4 chemo treatments (which will be around new years eve)...I have been having significantly less pain - almost down to no pain, it usually shows up if I'm tired or have pushed myself too much during the day.

That's pretty much my story so far - still digesting this news. I had mainly been focusing on taking of myself, my daughter and husband, staying positive - and letting mom navigate this site for more details, options, etc. I know she has found great info on the port, chemo, etc from you all - so thank you!

In general, this site has given me lots of hope in some circumstances that there are other treatment options that would give me more time with my family. I am still figuring out how to read the sad news and downturns of folks on this board without letting it get me too down. But I know I need to jump in and own the reality - good and bad - so this introduction is a first step. Here is my caringbridge page - http://www.caringbridge.org/visit/alisonneustrom

Thank you!

Re: Ready to join the discussion

Alison. Glad to see you finally joined us. But sorry you had to become part of our family.
Dr. Fong is great. I love him. He is a straight shooter. If he doesn't think the odds are good, he will tell you. And he's positive, so that's a plus. He holds out hope instead of saying something like "maybe, but doubtful".
I do have to say that after almost 3 years, it's a little easier reading the bad news, but not much. I still get very emotional.
There are so many more treatment options today compared to just one year ago. My hope for 2014 is for a wonderful breakthrough for cancer studies, cc in particular, so we can all breathe a bit easier!

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: Ready to join the discussion

Dear Alison, I want to welcome you and your 'gorgeous' family to our family. You have already done some great things like bringing in MSK and John Hopkins so you are ready with a top notch team! It is good to hear that you are adapting to the chemo even if the adaption to the CC may time a little more time but you seem to be very strong and you have an upbeat attitude! Your Blog is wonderful and I really meant  what I said about a beautiful family. I am so glad you decided to jump on in as popping can be very tiring!  This really is not just a sad news site as we have good news and Miracles happening all the time and we are the best family in the world! Now that you have made yourself at home I know you will be hearing from others and please keep us updated on your progress as we really and truly care!

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: Ready to join the discussion

Alison...a warm welcome is heading your way.  You and your dear Mom certainly have done your research and for that I applaud you. 
Not only do you have experienced physicians working for you, but you also have age on your side.  Given the fact that you experience diminished pain, it  leads me to assume that you are responding favorably to the present chemo regimen.  Hopefully the upcoming scan will reflect this finding.
Liver transplantations for our cancer is rarely possible however; it does occur.  Hence although, it is a small window of opportunity for you, it is not impossible for you to fall into the small group of fortunate patients able to receive a transplant. 
Regarding the entries of this discussion board, we, the board members are working hard on finding a solution to the numerous comments made in reference the postings difficult to read and digest.
I wish for continued success and for continuous, positive response to the present treatment so that other, available options will head your way.
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: Ready to join the discussion

Alison....I forgot to mention that we offer a specific threads designated for loving blogs such as yours.  Not that it is required or requested however; based on experience, postings easily become lost in the volume of threads. 

In order to avoid thisplease, enter your caringbridge site to the below:
http://www.cholangiocarcinoma.org/punbb … .php?id=31
Should you encounter any problems please feel free to ask.
Hugs again,
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: Ready to join the discussion

Thank you all for the warm welcomes! I appreciate the support and hope....I did want to clarify - I don't think any changes need to be made to the board or anything like that - I think it's important to have a place for honesty - the good and the bad...I was only sharing that I'm learning how to hear and absorb it without it getting me down...but it would seem that learning and support is essential through the downturns as well...thank you everyone!

Re: Ready to join the discussion

Your comment is well received, dear Alison, as it does address the issue of disturbing news to those not "wanting" to go there. 
In fact, I commented on this as well.  What I had been told then and have come to accept is that this disease is very difficult to treat.  In order to allow for free flowing discussions encompassing every emotional and physical aspect of those touched by this cancer, we simply stepped back and let things happen as is.
But, we are looking for ways to improve on this site.  Problem is that we don't want to control the interactions amongst the members.  This board has been created by the cholangiocarcinoma community for the cholangiocarcinoma community.  But, as Carl had mentioned, the system works - the tools are incorrect. 
As you mentioned so well, dear Alison, this is a place of honesty.  Somehow though, we must find a way to protect our members.

So glad you commented on it, Alison.
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: Ready to join the discussion

Alison,
Welcome to our caring and loving family. I was diagnosed over three years ago and I am amazed at how many treatment options are available now. I have a good friend who was told she was inoperable and now after many rounds of chemo, her tumors have shrunk and she is scheduled for a resection.  If you would like to talk please feel free to call me anytime 330-903-6868.
Pece
Lisa

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: Ready to join the discussion

Hi Allison welcome to this amazing supporting group.  I definitely understand what you and most on this board is going through.  I am a 34 year old mother of two children 8 and 6 (going to be 7 and 9 this month smile ) and was diagnosed late July.  I am also inoperable at this time.  I am on my 6th cycle of chemo and there has been some "good" shrinkage and anxiously I am awaiting my next scan.  Though a lot of us are given palliative treatment to "prolong" our lives, I keep learning that also a lot have been told inoperable and then in turn have been candidates for surgery.  I like to remind myself and others that technically I have been living with my cancer since 2010 and didn't even know it (I was misdiagnosed) so I refuse to give myself or let anyone give me an expiration date. It they had correctly diagnosed me I am certain they would have told me to put my things in order, but as I am learning more and more everybody is different and the rules can change at any time.  I hope you are tolerating your treatment well and sending you and your family lots of blessings.  Happy Holidays. smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Ready to join the discussion

Hi Alison,

I just wanted to welcome you also to the board.  It takes some guts to come here in the first place and posting can be hard so well done to you. 

As you have seen first hand, the support here is staggering and someone always come along to answer or offer support.  x

Clare

In the stars now . . . .

Re: Ready to join the discussion

Dear Alison,

I just wanted to chime in with my support for you seeking a second (and third) opinion.  My daughter was diagnosed at 29 years old this year and received a second opinion at MSK where she had surgery and chemo.  I cannot adequately express the level of care and concern she, her husband, and our entire family received from Sloan. 

I'll be thinking of you and your journey,

January

Re: Ready to join the discussion

Allison,
I would love to chat with you sometime if you are up to it. I'm a 43-year-old Mom of a 6-year-old son who was diagnosed in Dec. 13. We tried resection, but my tumor had advanced from left lobe into right. Now I started Folfiri, like you. We could swap war stories. smile

Tara