Thanks Marion!  It does seem strange that the message length is limited...at least for me!  Last night I tried posting a message after logging on and when I tried submitting it I couldn't because I "wasn't logged on".  Then I tried logging in again and my message disappeared and had to start over.  I don't seem to be having good posting luck!

Thanks for checking into it as I'm wondering if others are having the same problem.

Jean

Reply Part #2
I evidently write too long of messages so will again continue with a second message!

Marion...Thank you for your welcome.  It was a gentleman by the name of Jim who joined Lisa and I for dinner that night.  Diane wasn't able to come and I believe her husband, Brad, had recently passed away at that time.  I was very glad that I had the opportunity to meet Lisa...she was a very special person.  Marion, you amaze me.  You are such an advocate for everyone who comes here and really for everyone with this disease.  I hope you know what a difference you make and what an impact you have.

Thanks for ALL of your responses.  It really does make me feel less alone in facing this journey.

Jean

I just wrote a long post that wouldn't go through, so will try again!
Thanks for everyone's welcome.  Each of your messages has meant so much to me.
Jim...I can't imagine how unsettling that must be.  I'm hoping that it is just some quirks in your lab work and isn't reflective of a problem.  It's good to hear that they're keeping on top of things just in case.  Did you receive any chemo after your 2009 resection?
Lainy...I was so sad to hear that you had lost your beloved Teddy.  I'm so glad that you remain here as a warm, caring and knowledgable face to those coming to this site.
Percy...Thanks for all of your information.  I appreciate it so very much.  It sounds as if RFA may be comparable for small tumors, but I just feel a lot more comfortable with a resection.  With regard to a PET/CT my surgeon believes that the single liver lesion is the only site of disease and that surgery would be the best means of determining that.  I've gone back in forth in my mind regarding that.  I do have concerns that if something suspicious was found, that it would rule out potentially curative surgery.  It is perhaps more my gut feeling about my situation than anything!  Thanks for the advice on sending the tissue for testing, I will definitely have that done.
Diane...Thank you so much for your message and email.  It means so much to me.  I was so sorry to hear about Lisa.  She fought so hard and was truly an amazing person.  I'm very glad that I did get to meet her.
Pam...I appreciate your positive and hopeful message.  My thoughts have been with you and Lauren and am hopeful that her tumor shrinkage will continue!
Cathy...I'm so glad that you continue to do so well!  You're story is such an amazing one and I think that you've brought many people to that potentially curative option.  Transplant does seem to be under utilized and I'm glad you're there reminding everyone of that possibility.

The new format evidently didn't cope well with my long post!  So, I'll continue with a second post.

I live in Seattle and am being treated at Swedish Medical Center.  My surgeon is Dr. Michael Hart who has extensive experince as a hepatobiliary/pancreatic surgeon.  I trust him very much and he is also an exceedingly kind person.

I've come seeking the combined knowledge of the wonderful people here.  So, any advice is very welcome with regard to the surgery, chemotherapy, best place for second opinions, and just advice in general.  I apologize for my very long absence, but I simply came to the point that I could not be here.  It was just to hard, to difficult for me.  I know many of you will understand. 

Thanks in advance for your advice and words of wisdom, as I know there is much of each to be found here!

Jean

I have not posted on the forum in a very long time and  have such mixed feelings about posting now my most recent news.  I very much don't want this to be discouraging for those who have surgery and are so hopeful for a cure.  But I do want to make a definite point of the importance of follow up and of taking small changes as significant and therefore acting upon them.

I had a successful resection in May 2008 of an approximately 3 cm intrahepatic tumor and have been followed with repeat CT scans and lab work.  My scan this past May was negative and liver enzymes, though a little elevated, were well within the normal range.  They were rechecked in September and were further elevated.  The decision was made to just recheck them in a month and do a CT if they remained elevated.  I felt perfect and it was almost 3 1/2 years since my surgery.  I really believed that I was cured so I was definitely not very concerned.  They were checked again and were still more elevated.  I then had a CT scan that showed a recurrence at the margin of the previous tumor, a little less than 1 cm in size.  The scan showed no other areas of concern and no lymph node involvement.  When my doctor walked in the room, he said I have bad news and I have good news, a recurrence but still with much hope.

This was on 11/3 and I'm scheduled for surgery this Wednesday, 11/30.  My surgeon believes that it is a potentially curable recurrence and I hold on to that hope, not knowing what they'll actually find during the surgery.  I didn't have chemo following my surgery in 2008, after geting a number of opinions.  I really believe, in the setting of a recurrence, that it is indicated this time.  So, I will be seeking a number of opinions regarding this.

I do feel so grateful that I was able to have a potentially curable resection 3 1/2 years ago and that this recurrence was found so early.  It truly amazes me, and even more so when I know how rare it is to have such good fortune with this disease.  On the other hand, it also is so devastating.  I believed, truly believed that I was cured.  I feel so fortunate on the one hand and so sad on the other.

6

(15 replies, posted in Members' Cafe)

Lainy

What great news for you and Teddy!!!  And for all of us...it's wonderful to hear such good news.  Just picture me here smiling! 

Jean

Lisa

That is such great news!!!!!!!!!  It really made my day too!

Jean

8

(21 replies, posted in Introductions!)

Julygirl

I'm so glad to hear that everything is good to go ahead with the surgery...that's very good news!

What you wrote is so true.  Life will never be the same again.  I'm approaching the first year mark of my diagnosis in April of last year.  And it seems to me to be a gradual process of learning to live with this, the possibility of recurrence and that one might die of this.  The initial fear, or should I say utter terror at first, and the realization that life will never ever be the same again.  It is so overwheling and there are not words to really describe that.  I know that, at first, I could only take in a moment at a time.  I couldn't even read very much on this site because I saw that people died so often of something that I had!  I can only say that I have gone on to live my life as if I am cured, because I found it to be the only way I can do this.   I have questioned whether that's the best way to deal with not knowing what lies ahead,  but I've found it to be best for me.  Over the year, I've come to an acceptance that I have done, and am doing, all I can.  And that's all I can do.  Of course, every scan brings up that fear again.  And wouldn't it be so wonderful if there was some marker or some event, that one could say "that's it...I'm now cured...that part of my life is over".  I can only say that it somehow becomes a part of your life and you somehow learn to live with that.  It does force you into rethinking your life and realizing what's important, and what's not.  I no longer think about it all the time and neither am I afraid all of the time.  Somehow it becomes integrated into your life...it is not your life.  I hope that makes sense!  What I most wanted to say is that I understand what your saying.  We all understand...I think we have all felt the same way.

Please let us know how you're doing.  Again, I'm so glad to hear that the surgery is on track.  That is very good news!

Sending all my best to you Julygirl!

Jean

Ladybug

Thanks for sharing your story with us.  It's so good to hear how well your husband is doing and the positive results from the surgery.  Isn't it amazing that you can have 80% of your liver removed and it essentially grows back?  Wishing all the best to you both and continuing good news!

Jean

10

(7 replies, posted in Introductions!)

Michelle

Welcome!  I'm very glad you found us here.  And I'm very glad to hear what a good response you've had from the Gemzar and the radiation.  What an amazing drop in your tumor marker!  I read quite a bit of your blog and found your story and positive attitude so inspiring.  I was happy to hear of the father of your friend who is a 15 year survivor of cholangiocarcinoma.  Such stories give us all much hope!  Thanks so much for sharing your story with us.

Sending prayers and positive thoughts that your good news will continue!

Jean

Mary

What wonderful news!  I'm so happy for you and Tom...tell him to keep the good new coming!

Jean

Sophie

I'm so glad to hear that you're finally going to be able to start on the Avastin...that's very good news!  Know that there are no apologies ever ever needed here.  We all do the very best we can and sometimes that means just getting through the day or the minute.  Taking care of yourself is the most important thing you can do.  It is good news to all of us that you're much more comfortable and you'll be starting the Avastin...I hope you know that is what matters to all of us here!

Sending good thoughts and prayers your way!

Jean

Dear Pam

I'm so sorry to hear about your mom.  I'm sure she knew how very loved she was and am so glad that you were all able to be with her to the end.  Just sending my prayers and wishes for strength and healing to you and your family.

Jean

Thanks to all of you for your good wishes!  I so hope for good news for everyone here.  My hope is that someday the "Good News" section will be the most posted to on the board...what an amazing day that would be!

Jean

Kris
I'm so happy for you...things are finally working out.  You're news really made my day!

John
Thanks for sharing your friend's thoughts with us.  It's such a meaningful thought for me personally and I appreciate him putting it into words! 

Jean

16

(3 replies, posted in Pain Management)

Hi Lisa!

I'll also agree with Jeff and Lainy that it could be just about anything!  But, I did have a thought, probably on the obscure side of things though!  If you're taking Zofran or Kytril as an anti nausea med with your chemo, they both have pretty high rates of headache as a side effect.  So, just a thought in case you're on either of those. 

I think of you so often and am hoping you're enjoying these beautiful days we've been having.  I actually went out for lunch yesterday and sat outside...it was wonderful!

Jean

Rose

I was so sad to hear that the surgery couldn't be done.   But, do listen to Lisa and Kris...don't give up hope.  It is a new battle now.  You are in my thoughts and prayers.

Jean

Tess...that is such wonderful news!  I'm so happy for you!!!

Jean

Hi John

It sounds as if you've had very good results from the chemoembolization.  A very good reason to be happy I'd say!  I'm so glad to hear that.  The clinical trial sounds interesting.  I haven't heard of plitidepsin.  Do you know what class of drug it would fall under?  Have there been previous trials using this drug with Gemzar or in combination with other drugs?

Wishing you continuing success as you move forward with your treatments!

Jean

Hi Everyone!

I wanted to let you know that the news from my CT scan from this morning was great!!!!!!!!  No areas of concern, no evidence of recurrence...only good news!  I was so relieved...I was just SO nervous this time...or maybe I just forget how nervous I am every time.  I don't have my next one for 6 months now, so a big step forward after every 3 months for almost a year now.  I'm now 10 months after surgery, with the incidental finding on the gallbladder US of 4/15 last year, then the resection on 5/21 (the official diagnosis made on 4/29).  I am so grateful for this chance, for this hope that I've been given.

So, I follow Debrah and Sue with their recent good news!  My thoughts and prayers are always with everyone here.

Jean

Sue

What wonderful news!!!!!  I'm SO very happy to hear your good news and am SO SO very happy for you.  Hopefully they've come up with a good solution for your IV problem...that's all you need to add to the stress!

So, now both you and Debrah are at two years!  I think you both give much reassurance and a great deal of hope to everyone here.

Jean

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

23

(14 replies, posted in Good News / What's Working)

Amy

Congratulations on your very good news!  I'm sure your mom is so pleased...a new life does bring hope doesn't it?  When I see your name, I always think of my very special niece, Amy, who has 16 month old Isabella Grace.  She has brought much joy to our family, as I'm sure your new one will bring to yours!

Jean

24

(19 replies, posted in General Discussion)

Rose May

I just can't imagine how frustrating this must be for you.  Hopefully they'll get this resolved tomorrow, and you can go ahead with the surgery on the 25th.  It must be so difficult having the surgery continually postponed.

I understand your fear about the surgery and not being able to have the resection if anything else is found.  My surgery was 10 months ago and I remember that fear so well.  They were able to do my resection with wide negative margins, multiple biopsies were done and they all were negative. 

I know it's a long hard fight for you just to get ready to have the surgery.  But, please keep your hope and your faith and your strength.  We're all behind you through all of this.

Just tell them they have till the 25th to have you ready for the surgery, so they'd better get to work!  That reminds me of my last words to my surgeon in the operating room before my surgery.  I just said to him that "It's your job today to cure me"and he said he'd do his very best to do that.  It seems funny looking back, but I needed somehow to clearly convey that to him!

I'll be thinking of you tomorrow and hoping and praying for the very best.

Jean

Deb

I'm so VERY VERY VERY happy to hear your wonderful news today!!!!!!  Hope you did something special to celebrate, as one is definitely called for here! 

I am SO happy for you!

Jean