stacie

Jeff,

Thanks for keeping us updated. We are praying for a good outcome.

Stacie

Leia,

You’ll be great. You’ll cry and you’ll be nervous and you’ll do things you never thought you would be able to do, but in the end you will probably find that you just couldn’t do enough for this person you love so much. It’s wonderful to know that our capacity to serve others is increased as their need increases.

I remember the last night I spent with my brother, Mark. I stayed up all night with him and he wanted to move around the room every hour or so. He could barely walk and I was so nervous that he would fall and I wouldn’t be able to help him, but I couldn’t tell him no, I just couldn’t. I prayed and asked God to help me and he did. It was a very long night, but this is one of my most cherished memories now.

Stacie

Susie,

Be sure to keep us updated. It would also be helpful to know exactly what if any side effects there are. See if you can keep a journal of when they are taken and the results.

Stacie

Anna, you may want to contact sara@cholangiocarcinoma.org, she is the Director of patient advocacy for the foundation and got some information on Sorafenib at the recent ASCO meetings in Chicago which she attended for all of us.

Hi Pam,

I could relate to your email because of the situation with my brother who passed a few months ago. Many people have asked me what I would do differently if I could do it over again.

His pain was pretty bad from the beginning and he relied heavily on the Fentanyl patchs, this caused all kinds of problems as medications always do.

He also suffered from depression although he was not very verbal about this part.

I think if I could have done it again, I would have taken him to do some intense radiation treatments, we originally decided against this because he would have to be away from his family for an extended period of time. But, I think if we could have addressed his pain in a way that didn’t mean more and more medication he would have had more “quality” time with his family.

He also had good results with accupuncture and liked going. Exercise is very helpful for depression as well. I know it’s probably hard to think about considering he doesn’t feel well, but the natural high after helps.

You might consider seeing a naturopath who can address some of these issues in a natural way that doesn’t affect the liver – ours was always very concerned about that.

Another thing I thought was interesting was that Mark’s testosterone level was unbelievably low during his chemotherapy. The naturopath was working to increase that, which was one of the causes of his depression.

I hope you can help your husband find some relief. Let us know if anything works.

Much love to you,
Stacie

Lainey,

Can you give us more exact information on the cocktail you are receiving.

Thanks,
Stacie

Jeff and Peter,

Thanks for the good news! It means a lot.

Just want you to know we are working hard behind the scenes to get some good things happening. We are looking forward to giving hope, just as you have done!

Stacie