Hello All:

I am not sure where best to put this post within the discussion boards but I felt that "In Remembrance" of Lynn would be the best place.

My daughter, Kristin, has been involved with "Cycle For Survival" (Memorial Sloan Kettering fundraiser for rare cancer research) the past two years since Lynn passed away in July, 2014.

Her team, "Team Lynn" has raised $17K for this year's event, scheduled for March, 2016 in New York. That is double what they raised in their first year.

In her first year, Kristin was asked to speak to the group about what being part of Cycle for Survival meant. I've attached the video from the event:  http://youtu.be/ehHh1rjp6Aw
You may have to copy and paste the you tube link into your internet browser to view it.

Kristin recently sent a message to her sponsors. It describes how money from last year's event went directly to fund a trial for Cholangiocarcinoma. I am including excerpts from that message.

Her message:
"With just under 3 weeks to go until we ride, I wanted to send out an update on what Cycle for Survival is doing for rare cancer, thanks to every single one of the dollars you have donated.
.....
TEAM LYNN IN NEW LIQUID BIOPSY SYSTEM LAB: Cycle for Survival’s December challenge was to raise $1.2MM to support the new Liquid Biopsy System at MSKCC – a transformative technology that enables researchers to study cancer more comprehensively by simply drawing a patient’s blood. Doctors say this is a game changer in the cancer world.

Read more here: https://www.cycleforsurvival.org/decemberchallenge

Together the Cycle for Survival community achieved this goal and due to your generosity, Team Lynn was able to raise $1,000/bike for the challenge and therefore “TEAM LYNN” will forever have its name inscribed in the new liquid biopsy system lab. Thank you.
.....
2015 FUNDING ALLOCATIONS: Many of you donated last year as well and I wanted to make sure you saw where every single dollar of those donations went. Here is Cycle for Survival’s 2015 funding allocation information: https://www.cycleforsurvival.org/2015-f … llocations

$1,000,000 went to “directed support” which includes a project focused solely on cholangiocarcinoma (My mom’s cancer).  The description reads: “Cholangiocarcinoma: Drs. Scott Lowe and Maeve Lowery are developing treatments to more effectively target genetic mutations in bile duct cancer; information about drug sensitivity and resistance learned through models created in the lab will benefit patients currently enrolled in clinical trials for these therapies.”

Thank you from the bottom of my heart, and from my team, for your support. Not only does it mean the world, but it’s helping to drastically change the rare cancer world.

Love, Kristin"
..................


I am very proud of Team Lynn and all they've done to help fund research. I am especially proud of my daughter for leading this charge.

There is hope. Each day we get closer to solving this challenging puzzle called Cholangiocarcinoma. It's because we are fighting this battle together that strides are being made.

Love to all patients, caregivers and moderators associated with this battle.

Carl

2

(7 replies, posted in In Remembrance)

I don't even know where to start.

To my beautiful wife:
I love you and miss you so very much. I try to get by without you but it hurts so much. I try to get involved in all the things that meant so much to us, but it feels so shallow now. I try to be more like you with our children, but you were so good at being "you" that it backfires when I try.

I try to be me, but I no longer know who that is. My life has lost meaning and purpose, but I will not say that to my children nor mother-in-law, who I love dearly.

Today, I have cried since the minute I awoke. I don't know why today was the day that this came crashing down on me. I have had tough days since you left us, but today is most definitely the worst.

To my CCF friends:
I do want to thank you for all the help and consolation you provided during these past 2 years. You were most definitely my "go to" place, and people,  for support, information, and guidance. I can't begin to tell you how hard it is to even log in anymore.

I know the people on this board care deeply about each other and want to help in every way they can. I have so much respect for you because - even in your own situation - you want to help others. I tried to do that while I was helping navigate the path forward for Lynn. But with Lynn gone, it's so very hard to even think about this horrible cancer, let alone try to think about how I can help others going through this.

Hopefully, someday I'll be able to re-energize and help others with the "lessons learned" while dealing with this disease.

I have already found out that holidays have been changed forever. And someday, maybe the family holidays of Thanksgiving and Christmas will have a new meaning. This year, they remind me of the pain. I wish I could be more positive during this special time of year.

Regardless, I want to truly think all of you and wish that you can find a way to have a happy holiday season.


Carl Scheitrum

3

(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)

4

(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

5

(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

6

(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

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

8

(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

10

(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

12

(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

13

(18 replies, posted in General Discussion)

What wonderful news as you start your summer.

I am very happy for you Lainy.

Carl

14

(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

15

(16 replies, posted in Chemotherapy)

Julie,

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

Carl

16

(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

17

(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.

18

(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

19

(0 replies, posted in General Discussion)

Now that the new website is active, I was wondering if there is a specific blog post or other method to provide comments, feedback, etc. I think the new design has some nice features.

I have also observed some things that may not be working as planned. As an example, I tried to use this site on an iPhone today and I was not able to get to the menu.

I'd be glad to provide feedback on things I find, but I don't know the best approach to do that.

Carl

Caroline,

Our thoughts are with you and your family at this time.

Thank you for allowing us to become part of your family through your beautiful posts. You have an amazing gift of being able to express yourself so well in your words and in your tribute to your mother.

All our love,
Carl and Lynn

Gavin,

Prunes, toast, AND a cup of tea??

That's why they invented coffee my friend.

Hope you are doing well.

Carl

22

(80 replies, posted in Introductions!)

Olga,

I would make a recommendation to anyone with this disease to at least start chemo until such time as the side effects make chemo too challenging. This is an aggressive cancer and the chance of chemo knocking it back for extended periods of time is very real. It won't destroy it but will possibly extend your quality of life for a longer period.

And the side effects do vary for each person. You may find these side effects to be minor, or at least worth going through if the chemo is helping. Be advised, they are also cumulative. That is, during the first few infusions, the side effects may be minimal. But the longer your husband is on chemo, the more these side effects may come into play.

As I started, I would definitely recommend chemo until your husband finds it too challenging or not working.

Good luck with your decision,
Carl

Not good. The cancer has grown in and outside the liver. The lymph nodes, which had been contained by Gem/Cis such that they weren't even showing, are now bigger than before. Lynn has pain in her shoulder and abdomen all the time. She is back on Oxy for pain. She is bloated from the liver growth. Feels terrible all the time. No appetite.
Man how things have gone downhill in a hurry.

As of today we are officially off the trial and will begin a new chemo regimen (Folfox) beginning next week. Hoping for another successful period of chemo so we can get back to where we were before the trial.

Options are starting to diminish unless we can contain this growth. From day one, however, Lynn's cancer has been very, very aggressive and grows at incredible rates without chemo.

Having expressed the reality of the situation, I can still look back at almost exactly a year ago when Lynn's condition was so difficult we weren't even sure they would administer the first round of chemo.So from that perspective we are in a better position this May than we were last May.

Carl

24

(28 replies, posted in Introductions!)

Kelly,

What a beautiful message.

That is how your mother will be remembered...Living life every day to its fullest, loving freely and by being a kind and passionate person.

Thank you for allowing us to share this experience with you. You are a wonderful caregiver and supporter.

Carl

Kris,

So happy for you. I hope you have continued success with the trial.

Carl