1

(8 replies, posted in Members' Cafe)

How does one say thank you to a global group of people you never met in person but want them to be by your side each moment?

As we continue this difficult journey, I had to step back in so I could personally thank each and every one of you for helping us.

In our current situation, I do not spend time on the discussion board because I want my time to be with Lynn and our children. Lynn fought with all her beautiful energy. But this insidious monster found different ways to attack and grow. I know in my heart it has been harder watching Lynn struggle over the past few months as this disease took control. Now at least she is not in pain and can spend time saying her goodbye's to her children and her mother. That is a special gift.

I do NEED to thank all the moderators and all the persons who posting on these discussion boards. You are what is making a difference in helping to find better answers for this dreadful disease. It is your energy and determination to help make things better that will give others a better chance of survival than Lynn had.

Finally, to some very special "friends" whom I have met through these discussion boards, you have helped me so much. I don't know how to begin to thank you.

Stay strong,
Carl (for Lynn)

2

(19 replies, posted in Members' Cafe)

Dear Emad,

You brought me out of my "brief" retirement.

You have shown so much love for your mother and your own situation. And then you have gone out of your way to encourage and support others, like Lynn and I, as each of us deals with this horrible situation.

I want you to know I think of you because you are exhibiting all the qualities and challenges of a special daughter to a special mom. I am observing that every day as my dear daughter is so fully involved in helping her mother. They were more than mother-daughter, they were more than best friends. They were one. I have lots of stories to explain that but I believe you understand without further explanation.

Having said that - you must stay strong for you. And you must live your life to the fullest because that is what you were meant to do.

If I can do anything to help you through your pain, just let me know.

Take care,
Carl

3

(57 replies, posted in Members' Cafe)

Percy,

I swore I  wasn't going to go to this website tonight as I was not in the right frame of mind.

Life just dealt us a terrible hand and there is no way to change it. Lynn has struggled hard and suffered enough. We are moving to hospice. Your words in your post ring true. We fought hard to gain an edge but the reality of this ugly disease proved overwhelming. This is an ugly disease and no one deserves to go through its challenges.

Like you, this may be my last post my friend. I am sorry we can't make that World Series game at Wrigley. I think we would have enjoyed it.

Take care dear friend. I wish you the best.
Carl

4

(9 replies, posted in Introductions!)

Are the tumors themselves causing the swollen belly ? That is how it began with my wife. Her stomach was quite distended. The chemo reduced the size of the tumors which reduced the belly.

Also, we found Orgain to be a better tasting and more nutritious supplement than Ensure. If you can't find it locally, you can purchase it online.

Carl

5

(68 replies, posted in Suggestions)

Sorry for being AWOL. Life got in the way.

Spent 4 days in the hospital and away from my computer. That story is for another day. Right now just know if you have comments, questions, or issues, please post them here and I will make sure they are sent to the web team.

Carl

Lainy,

I echo what's already been said. Great news. I am very happy for you. Please relax a bit and enjoy this special time. As you well know, you need to cherish the times that great news comes your way.

Take care,
Carl

7

(9 replies, posted in Members' Cafe)

Hey Kris,

I wish it wasn't so, but your statements are correct. It seems like everyone has a family member of dear friend battling this disease. I just found out about 2 new cases of cancer within our circle of friends. It stinks.

You are a strong person. You will be able to help your friend in so many ways.

Take care,
Carl

Hey Gavin,

Great article. It;s nice to be able to read about places around the world where we now have "special" connections. And I did watch the movie multiple times. Your story brought things together.

Thanks,
Carl

9

(14 replies, posted in Introductions!)

Emad,

You have experienced the worst pain of this horrible disease. And yet you came back to this site to share your feelings as well as to offer console to others.

That is very special.

Thank you,
Carl

Jason,

Please know we are hoping the best for Andrea and for you. I am familiar with the aggressiveness of this disease. As a caregiver, you can never relax. You have to stay focused on dealing with the reality of each day while looking for alternatives for improved response to this disease.

You have done so much to research all scenarios regarding treatments and trials. You and Andrea will make the right decisions as you continue your journey.

I wish I could do more to help both of you right now. But I want you to know Lynn and I will be thinking of you.

Carl

11

(14 replies, posted in Suggestions)

Duke,

Great comments/questions.

What I do when I want to save a specific post for future reference is to create/add a new bookmark in my web browser. At least it allows me to go back to the pages at a later time.

Your point. Is right on. It would be nice yo just mark those pages so you can go back to your list of merged pages.

Carl

12

(68 replies, posted in Suggestions)

Marion,

Try using "doohickey" in all your comments to Rick. That should help him sort through the jibber jabber.

Take care my friend,
Carl

13

(68 replies, posted in Suggestions)

Lainy et al:

Rick also made changes to address your green menu bar issue. Now when your Internet Explorer (or other browser) window size is not the full width of the PC monitor, the links on the green bar (like "Home" or "About the Foundation", etc. ) do not show up - but a small circle with the word "Menu" appears.

Clicking on that menu button brings up the entire list of pages (links). You can move up or down that list to find the page you want to visit.

Carl

14

(68 replies, posted in Suggestions)

Hi Lainy,

It is a screen size thing. The page - and the green navigation bar - adjusts to the width of the screen. If you make the CCF webpage as wide as your computer screen or laptop screen, you should see all the navigation links. However, if you shrink the page, at some point the green bar does not show the links anymore and the round button contains all the links.

If you want your links back, try to make the whole page wider.

Carl

15

(68 replies, posted in Suggestions)

Jason,

Could you clarify. Is she trying to register for the discussion boards or something else.

Thanks,
Carl

16

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

My (our) congrats as well. It's a special landmark to reach the one year anniversary. You have exceeded all statistical data, in the positive way.

Enjoy your special time.

Carl and Lynn

17

(18 replies, posted in General Discussion)

What wonderful news as you start your summer.

I am very happy for you Lainy.

Carl

18

(68 replies, posted in Suggestions)

I have compiled all the comments from today and provided a summary document  which will be shared with the developer.

Keep those comments comin'

Carl

19

(16 replies, posted in Chemotherapy)

Jason,

Thanks my friend. We provided the info regarding Losartan and its benefits with chemo to Lynn's doctor. He immediately switched her from Lisinopril to Losartan.

It is yet another small step on the road to recovery. That is our new goal. Let's take a small step each day that moves us closer to recovery.

Carl

20

(68 replies, posted in Suggestions)

I agree the overall performance of the new site is slower. I will communicate this.

For those users who have found links not working, please let me know the specific link(s) not working so I can provide that feedback to the developer.

Thanks,
Carl

21

(16 replies, posted in Chemotherapy)

Julie,

Thanks for that info. I will look into this as an alternative to another biopsy.

Carl

22

(68 replies, posted in Suggestions)

The Cholangiocarcinoma.org website was recently updated with new styles and much greater content. This website has become a primary source of information, research, discussion, and compassion for so many people associated with this disease. I'd like to suggest we create a Blog Topic to provide feedback regarding this new website. In that way, we will help strengthen the site for all of us and for those now searching for a resource like this.

I suggest adding posts regarding positive feedback about this new site as well as when you find items that may need to be addressed. For example, I think the Biliary Emergency Information Card which was introduced along with this new site is a great idea. Likewise, I am looking forward to the Patient Registry.

On the constructive side, I have read posts from others regarding links not working and the green menu banner overshadowing text and content.

If we can post this feedback in a common topic area, I would be glad to help communicate this information to the board members who are working with the web developer.

If others feel this suggestion would be beneficial, please add your posts. If it gains momentum, maybe someone who knows how to create a "Sticky" can add a sticky to this so it stays active.

Thanks, in advance, for your comments.
Carl

23

(3 replies, posted in General Discussion)

I agree with Lainy. You may want to get a second opinion or even find a new onc.

Folfox is a standard chemo treatment. It consists of Fluoroucil (5-FU) plus oxaliplatin (like cisplatin) and folnic acid which helps the 5-FU work better.

Carl

24

(16 replies, posted in Chemotherapy)

Jason,

Thanks for the information. I will look into Losartan. It will require discussion because Lynn is already on a blood pressure medication and has been for many years. We will have to discuss med conflicts, etc. But certainly worth reviewing.

Regarding Immunotherapy, as your research has probably shown, in several of these trials, a key inclusion criteria is that the systemic treatments (chemo typically) have proven ineffective. We have not crossed that point - and hopefully won't any time soon. I keep looking at these immunotherapy trials as our next path. The difficulty is knowing Lynn will have to get even worse before consideration. Ouch.

Regarding targeted therapy, we have not yet done gene sequencing - but not for a lack of trying. At the start of the clinical trial a biopsy was requested for the trial research. We asked at that time to have enough sample tissue taken so we could go through gene sequencing. However, the biopsy was pretty much botched. Which by the way caused Lynn to be in incredible pain for weeks afterward. The trial sponsor was OK going forward without it. But we decided to delay trying another biopsy mainly to let Lynn recover. It is still in our plans, but now we have to settle things down a bit before we perform another intrusive procedure. We are already dealing with pain management and new side effects.

Regarding Folfox v. Folforinox. I did not ask this question specifically but I believe the decision to go with Folfox was based on the greater toxicity of Folforinox and that Lynn already had an allergic reaction to the very toxic cisplatin. Originally, the oncologist had suggested Folforinox for Lynn prior to us starting Gem/Cis. It was then we were told of the higher toxicity level. We opted to go with the 'standard' Gem/Cis which certainly was beneficial. I also know Lynn is at a point where there is not of lot of healthy liver and while her liver functions are still good, we cannot afford the possible toxic liver reaction.

Please keep sending ideas my way. I am the type of person who wants to know the next plan even while in the midst of the current one. And right now, I don't feel comfortable that I am in that position.

Take care,
Carl

P.S. I hope your and Andrea's journey continues on a good path.

25

(16 replies, posted in Chemotherapy)

I know each person's case tends to be unique, but  I am - desperately - reaching out today to ask the many people who have been involved with this disease, what else can I be doing ?

In brief, we have been battling ICC for 13 months. We made very significant gains while using Gem/Cis for 8 cycles. The tumors (many dispersed plus very large tumor in left lobe) within the liver were reduced and the lymph nodes seemed to disappear. We moved to Gemcitabine alone and the tumors within the liver began to grow,

At that point we opted for a clinical trial (NCT01285037 - part D) which had shown good results in the initial phase. However, shortly after starting that trial, my wife had an allergic reaction to the chemo drug (cisplatin) which was a key part of this phase. We tried to go with the Met inhibitor drug alone (no longer paired with cisplatin). However, the tumors grew quickly in AND outside the liver. We are almost back to where we started.

We just started Folfox as the next chemo regimen. While its too early to determine its effectiveness, my understanding from all I've read is since we've been through the Gem/Cis - and can't go back, if the Folfox doesn't work, there is no other chemo regimen that I can find as the next option.

If others have gone down a similar road, what options are there beyond this chemo. We cannot do liver directed therapy at this point because the growth in the lymph nodes seems even more aggressive.

Beyond chemo, the only trial I believe would offer some potential to stem this disease is the trial (NCT01174121) that has shown promise with one of our members. I am not even sure we would qualify, but if the Folfox does not work it makes us more eligible (sadly).

I am hoping for a path that others have taken which I have not yet found.

Thanks, in advance, for your help.
Carl - for Lynn