We are a team and must fight together

That’s great the treatment is working for you. Everyone is different on how they respond. I don’t know how many times I heard “It’s in a bad location” “Awful Tumor” “Poor prognosis”, until I had enough and decided to help my mom the best I can and not listen to every word of any doctor. So it is, what it is and I got tired of negativity. Keep your spirits high, listen to your body, and do the best for yourself.

Bob,

I noticed you posted on another thread that you’re going to be re-evaluated for surgery. Good luck.. And if there are no mets, and your surgeon still says no due to location send your newest scans to some of the more aggressive surgeons. They may be more comfortable in resecting, you never know.

Billy

Dear Bob, your post sounds very promising and we sure would love to see that shrinkage word in January! Keep on being hopeful and optimistic as it really helps in getting rid of this CC! SO glad to hear as well that you are tolerating the chemo. Great post and looking for more good news after the scan!

Bob,

Just wondering how you are doing on the chemo and if you ve heard back about potential surgery yet. Have you had rescans? how often? how much chemo do they want you to do? Although Katherine’s tumor is a little different, she’s also on the chemo first then hopefully surgery next, although the timeline has been pushed back a little. She was also presented with the opportunity for possible HIPEC after the surgery bc they think her abdominal lymph nodes are involved.

Billy

Dear CAliceA, Welcome to our remarkable family and CONGRATULATIONS on your successful surgery and you are a hero that gives hope to our many members. I am over the moon with your post and hope you the very best to continue. I would hate for such empowering news to be lost on another link so could you please repost this under Introductions as well? Please keep on keeping on and let us know how you are doing. ENJOY as life is for the living!

Hi Bob,

Welcome to the site. Sorry that you had to find us all here and sorry too to hear what you are going through with everything. I just wanted to join in with the others in welcoming you here to the site and give you a few links that may be of use and interest to you.

As for the chemo combo of Gem/Cis, as Catherine says that is the first line standard of chemo that many start with and many of our members here have gone through that. And yes, we have had success stories from members or their loved ones that have had that to shrink chemo and then lead to surgery so please do not give up hope. There is a ton of info on Gem/Cis, much of which can be found here on the chemo board –

http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16

Fatigue with this cancer is very common and my dad suffered from that a lot. Here is a link that will be of interest to you on this –

http://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/tiredness

http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/fatigue/what-is-cancer-fatigue

As for the T Cell post, I think you mean this one from Melinda. If so, more info can be found here –

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11199

I hope that some of that is useful to you and please keep on coming back here and let us know how things go. We are here for you.

My best wishes to you,

Gavin

Hi Bob,

Fatigue for my husband, at least, means he doesn’t have the same energy or stamina as he used to have. He’s always been very active and that same sort of “steam” just doesn’t seem to be there as it once was. It is interesting to note, though, that after his first chemo treatment that he was really “wired” and full of zip for two days following it. We were told it was because they gave him a steroid in his drip. He sort of “came down” after that first two days. However, after the second round of chemo, he didn’t have the same reaction. This has been his week off of chemo and he goes back on Wednesday. This week off has been interesting insofar as he’s gained energy as the week progressed but he still gets tired easily and definitely goes to bed early. He’s never been one to take naps and still refuses to do so. I think I’ve read that others find taking a nap helps, but you couldn’t convince this former 30 Year retired Marine of that!!

I’ll be thinking of you on Thursday and wish you luck. By the way, my husband’s chemo treatment at MD Anderson has a remarkable facility for patients and partners alike. Each patient has a private booth with a TV screen on which to watch movies or TV, there’s a library of books to read and even a very pleasant patio on which to sit. At lunch time we are served a gourmet meal from a cart that passes by! Quite the resort!!!

Regards,
Red

Hi Bob,

Boy, do I identify with you when you say your life tipped over like an apple cart when you found out you had cc. The very same goes for my husband. He was diagnosed in early July of this year and had a resection of the main bile duct in early August. The thought never, ever entered either of our minds that his five day stomach ache would turn into such a nightmare. The good news is that he could have the resection and for that we are thankful. But boy oh boy, were we ever taken by surprise and life as we knew it has really changed.

It sounds like you are in good hands at UNC Chapel Hill and that you have a plan in place. It’s so important to feel confident in your team and you seem to voice that.

My husband has had once cycle of Gemcitabine and Cisplatin and will begin his second cycle this Wednesday. It’s so fortunate that he has had few side effects from it other than fatigue. His appetite is really good and there has been no nausea either. However, we have been told that as the cycles progress that the other side effects may surface or the fatigue worsen. We take it one day at a time, or at least we try to do that. I tend to be over protective and he tends to act like there’s nothing wrong! I suspect this is common behavior among couples!

We send our prayers out to you and your family. I feel confident that you will do well with your chemo treatment. Just remember that you are not alone in this struggle for we all are here to vent or inquire or learn. Be positive and feel us rooting for you! Keep us posted, will you?

Red