1

(76 replies, posted in Introductions!)

I know as soon as I write this I will be putting myself up for more scrutiny, which has happened before.

I cringe when anyone talks about adding calories by absorbing mostly sugar. If there is one thing I have learned is the processed sugars we eat as a routine do nothing to help and can cause our systems to work harder to eliminate them.

Note: I am not directly referring sugar helps cancer grow. Just that sugar adds no value and causes our body to put more effort into getting rid of it.

For anyone who believes in the "nutrition" theory, I hope you understand that what I am truly saying is "Please" find a way to get those calories without needing a piece of cake. Try nuts, grains, fruits, smoothies, juicers, almond milk, etc., etc. etc.

A piece of cake, now and then, is a "treat". But as a standard diet, it has been shown to cause your body - and in most CCF cases, your liver - to work harder to get rid of the sugars.

I know this post will cause others to be upset with me. Sorry in advance, if I upset you.

Carl

2

(26 replies, posted in General Discussion)

Kris,

Just wanted to let you know we are thinking of you and are hoping for continued improvement. It's been a tough road.

Carl

3

(20 replies, posted in General Discussion)

Stay strong Percy. You are a fighter. It is clear in all that you have done for your own situation as well as for all that you have done to help others.

Take some time to rest. Watch those Cubs on TV (like last week when they beat my Phillies) and enjoy some quiet time.

Post when you want but don't worry about anything you might state. We always learn something new each time you send out a message.

Warmth is coming to Chicago.

Take care,
Carl

Holly,

Have you considered chemo-embolization as an alternative to the radioembolization? It is also a  liver directed treatment. Johns Hopkins has had good success with this treatment. In fact, before we started on the clinical trial Marion mentioned above, we almost went this path ourselves.

In Lynn's case, the trial still seemed to have more potential benefit with the inhibitor drug. But we both felt very confident in Johns Hopkins and their work in chemoembolization.

We evaluated both radio and chemo embolization. The doctors at Johns Hopkins were quite confident about tumor reduction with chemoembolization.

I don't know if you have worked with Johns Hopkins. Based on your location, its possible you may already have been involved with this organization. We came away highly impressed.

Carl

5

(30 replies, posted in General Discussion)

Mary,

Ask your doctor about adding steroids to your treatment plan. It really helps with fatigue. My wife was not on irinotecan. She was on Gem/cis and after cycle 5, she was getting more nauseous and more fatigued. The doctor switched her to Emend for the nausea and introduced a steroid during the infusion days. The combination helped her get through 3 more cycles with much less difficulty.

Carl

Thanks for the update Kris. Glad to hear the scan was good. Hopefully you start feeling better quickly.

Carl

Thanks Kris and Marion,

We are excited and hopeful about this trial.

It was such a pleasure meeting Kris in person yesterday. We talked about the trial. And we all agreed what a terrific oncologist we have in Dr. Denlinger.

We also had an enjoyable discussion regarding multiple non-ICC topics. We especially liked when Kris described how she got involved with karaoke and how she has gone from knowing one song to being a top entrant in karaoke competitions. Way to go Kris.

Thanks Kris for taking the time to stop by and meet with Lynn and I. We look forward to seeing you again very soon.

Carl

Percy,

I too am sorry to hear how painful this past month has been for you. I hope you find some relief. I applaud you for writing such a difficult post. The decisions you are facing are truly challenging. You have always found ways to guide others as they were going through their difficult periods. I know everyone you've touched would do all they can in your time of need.

I agree with the hospice information provided above and would add please make sure you are very comfortable with the hospice nurse. If not, request someone else. The nurse plays a huge role in your comfort.


Please know we are thinking of you and will be praying for you.

Best wishes,
Carl and Lynn

What a depressing article. They really did a good job of taking away hope. Shame on you ASCO.

Great response Willow. Facebook and other social media sites have already shown us that there is very little "private" information on public sites. Your point about creating a pseudonym is right on the mark.

Carl

11

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

Lainy,

We are so, so happy to hear the good news. And frankly, you deserve it. You put so much of your heart and soul into helping and supporting others. It's time for you to get some great news in return.

Hopefully you get your energy back quickly. You've been through a challenging period.

Take care,
Carl

Percy,

Terrific post. Thanks for this information. It's incredible reading about options that weren't even available a few years ago.

Thanks for your continued research into possible strategies for dealing with this cancer.

Stay warm.

And I agree, how could you throw so much money at an average QB. Oh well, it's almost spring time. Right now we need to focus on our Cubs. I've not been inside Wrigley but walked the perimeter several times during visits to your great city.

Carl

13

(16 replies, posted in General Discussion)

Double WOW. How exciting to hear this Lainy. You know we are here for you and already wishing you the best. And to hear that maybe the reading was incorrect - what a pleasant surprise.

Good luck with your tests. We will be thinking extremely positive thoughts.

Carl and Lynn

14

(28 replies, posted in General Discussion)

Lainy,

Please know we are thinking of you this day. You are such an inspiration to all of us. We know you will do everything in your power to beat this new growth. We wish you the very best.

Carl and Lynn

15

(7 replies, posted in Events & Fundraising)

Great find Jason.

Thanks.

Kris,

Great news, including the fact that Lasix is helping. Lynn and I wish you the very best.

For others, I want you to know that we have also been working with Dr. Denlinger as a second opinion consult since Lynn's initial diagnosis last April. We have met with her several times and are very impressed with her. Kris and I have discussed this multiple times.

With Lynn's recent CT scan, we went to Dr. Denlinger as a possible primary oncologist. On our recent visit Monday, I mentioned to Dr. Denlinger that we knew Kris. She broke out in a wonderful smile and then spent the next several minutes telling us how she and the entire staff enjoy Kris. She told us Kris is the best advocate for other CC patients that they could hope for.

Kris, on a very personal note, thank you so much for bringing this trial to our attention. We are hopeful that Lynn will qualify. Dr. Denlinger was pretty confident. We are waiting for the final word.

I guess I need to start practicing my karaoke.

Take care,
Carl

17

(16 replies, posted in General Discussion)

Kris,

So glad you found a radiologist who you like to work with. Having a fresh perspective - at every point long this journey - is very welcome. I hope it brings you continued good news.

And great news on the wedding. It is a great way to distance yourself from the daily challenges. Even looking for a dress has a much greater value.

I am very happy for you.

Carl

18

(9 replies, posted in Introductions!)

Hi Donna,

I am glad you are now part of this forum. It may be my naivete but I have not heard 'voice of the patient' referenced before. Can you please clarify?

Thank you,
Carl

19

(15 replies, posted in In Remembrance)

Linda,

Our thoughts and prayers are with you and your family.

Carl

20

(3 replies, posted in General Discussion)

Percy,

Thank you for always being there for us, and everyone else. You are an inspiration. To be going through your own journey and still find time to help so many others is a special gift. You truly are a gift to many people who cling to your words, knowing you've been through so much yourself.

I will take your advice and try to establish these new contacts.

I hope you are staying warm in Chicago.

Carl

21

(3 replies, posted in General Discussion)

CT scan this week showed Lynn's cancer has grown in her liver (ICC patient). Tumors have grown and there are more "spots".

We had great success on Gem/Cis but switched to maintenance (gem only) in October. The recent results indicate the treatments aren't working.

I am sending the latest information to both second opinion doctors at Fox Chase and Sloane. Hoping for some news about next treatments. We will go to Fox Chase to discuss alternatives. There is a trial which they are associated that Lynn may qualify.

Until then, I am going to start reaching out to other doctors who have been praised on this discussion board. I am planning to contact Dr. Chapman.

I would appreciate feedback regarding other consult doctors you would recommend. If you want to contact me directly, please send me an email (scheitrumc@aol.com).

Thanks,
Carl

22

(7 replies, posted in Thought for the Day)

Not yet ready to add to the blog till we know more.

But chemo is taking its toll. We had to cancel the chemo yesterday because her blood work wasn't good enough for the infusion.

And Lynn is not feeling as well. We've actually moved up her CT scan to next week because we want to know how things are going.

Thanks for caring,
Carl

23

(7 replies, posted in Thought for the Day)

I felt the need to post under the category of "Thought for the day".

My thought is this:

Thank you to all the moderators who willingly give their time - and more important - their knowledge to those of us who are caught in this difficult situation,

From the very first day I found this site, and the amazing people who work tirelessly to help us (i.e. moderators, caregivers, etc.), I knew this was a special group and a special place.

You touch the lives of so many people and you do it with grace and knowledge and compassion and experience and love and care and concern and.....


My wife and I are currently in a state of "unknown" right now but I know I can come to you with any questions or concerns and you will be there to help to the best of your ability. What a special group.

I hope you all find joy in this day.

Carl

24

(21 replies, posted in In Remembrance)

Gavin,

You have been a rock for this organization since the day I became a member.

I wish there was more I could do or say, but please know the role you play in each of our lives has made an incredible impact.

We would not be where we are without your guidance, counsel, support,......and friendship.


TAKE CARE MY FRIEND.

Carl

Good news on your progress, Kris. I wish you continued success.

Carl