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(5 replies, posted in Chemotherapy)

Dear all,

I've written before, but not frequently so I will tell you a bit about our case:

My husband was diagnosed at 40 with CC, sent to Mayo Clinic for treatment
Accepted into the LT program and completed all of the standard pre-transplant regimens (brachy, 5FU, etc).  At LT (41), there was a lot of cancer, deeper than they would've liked so to get a clean margin, they did a whipple. He recovered really well from both LT and whipple.

At the 8 month post LT appointment (age 42), it was shown that his CA19-9 level and the CT that the tumor had returned to the BT and in the liver, I think. The tumor is around the portal vein, etc. and was already starting to push on this and cause slight blockage of blood flow. He was doing less well at this point in time, but still functioning at about 50% or so.

Mayo said the next treatment would be chemo, if he wanted it, but that time was most likely limited (they did not want to put a time frame on his life, of course). "Less than a year" was mentioned, but so was 6 months... it wasn't clear, plus we all know these are just stats.

They did not do a PET scan, only a chest CT- which showed no tumors.  No other scans have been done to date.

We opted for chemo in our home city, 4 hours from Mayo for logistics, etc.  He is on a Gem/Cis combo (standard) where he gets a treatment once a week for two weeks and then has a rest week (1 cycle) and then starts again for cycle 2. After his 2nd Cycle 1 treatment, his H/H was so low, he ended up in the hospital needing transfusions and his WBC was also danger low. Once CBCs started up, he was released. 

Chemo was halted for an extra week of rest but then resumed. He just finished the 2nd treatment of round 2 last Friday.

His CBCs are all very low, as before, but his kidney, liver, bili are all doing very well. BP, pulse all that is fine. No temps this time. Aside from the neutropenia, you'd think he was a healthy guy...until you look at him...

We are waiting for the next doctor appointment to have the tumor marker results and maybe a scan (if results are positive)... in the mean time I am really questioning the benefit of the chemo right now (at this stage).

Since begining the chemo he has gone from overall health of 50% to about 10% (IMHO) in a rapid amount of time. He sleeps most of the time and when not sleeping, he has a blank and vacant stare that he says he cannot control- he is in an "unexplainable fog" in his words. He still eats well and BM are regular, but he does have constant diarreah (sp). He feels all that he loves to do has been taken from him. He has had problems with sight loss and given systane to help rehydrate. He drinks lots of water. TV, books, playing with our son, talking... have all stoppped.... he's like a ghost walking around the house, and it's so hot outside he cannot go out.

I am so worried about him and wonder what could be causing this other than the chemo (e.g. other tumors they haven't found).

I am mad about the chemo treatment because it's put him in a stupor and his quality of life is in the toilet.

I feel like we are just "waiting for the end" because it has to be better than this, and then I feel guilty.

Basically, everyone feels lousy- sad, depressed, hopeless, and I don't know what to do to break the cycle.

For those of you that have gotten to this stage during treatments... any advice? Any pearls of wisdom? Actually, it helped me just to share this with others.

Thanks for reading.
Jenny

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(10 replies, posted in In Remembrance)

Kandre-

Many prayers and postitive thoughts for you at this time. I am sorry for your loss.

Hugs,
Jenny

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(8 replies, posted in General Discussion)

Good luck Cindy! Prayers from South Dakota!

Your post brought me to tears (happy ones!) nice post!

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(1 replies, posted in Thought for the Day)

great post! Here's to a more optimistic tomorrow!

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(4 replies, posted in Introductions!)

Thanks everyone for the comments and welcome! I will look around at some of the posts and get involved.

Marr had an amazingly good day today, nearly normal activity, so we take this blessing.

Hello there,

I am very interested in reading the entire article from the Mayo group (our doctors, actually). I went to the link, but could only get the abstract. Do you have a PDF of the whole article? Just checking.

thanks!
Jenny

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(4 replies, posted in Introductions!)

Thanks for the comments and nice welcome, Gavin. Looking forward to hear stories from others like yourself on this site. Time to get searching around!

Jenny

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(15 replies, posted in General Discussion)

I was just at Disney with my husband (has CC), our 5 yo son and some of my husbands relatives... they were so peeved with me because i was 20 minutes late coming down to leave in the morning because it was slowing down their data at Disney. that's what they have to worry about...whether or not they'll ride the teacups this trip to Disney or one next year (they live in FL). they made my husband feel like they didn't care, didn't wait up for us to go on rides... and I honestly think it is because my huband 'looks' pretty good. He's also lost weight that was needin' some losin' and with pain management can get through the day OK most of the time. that's what they see.

What I see is a tired, in pain, worn out man who pushes himself to be the best he can be for his wife and boy, so the family and friends don't get uncomfortable or freaked out about the cancer thing, and pushes to get as much out of life as possible.

I've been pretty spun up about how they treated him/us on our day(s) togehter. Do people really not get how serious, life-threatening and life altering this is??! that's what frustrates me.

i feel your pain. Some people just don't get it.

Jenny

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(4 replies, posted in Introductions!)

Hi everyone,

I think this website is an incredible support system, and I am looking forward to joining in.

My husband Marr was diagnosed in Aug/Sep 2010 and we were quickly referred to Mayo clinic. During the initial phases, he had stents, drains, and all of the scans/tests you can imagine, including radiation therapy and brachytherapy. We were lucky enough to have 4 possible donors evaluated, but none were a perfect match. This ended up being a blessing because when they did a transplant with a deceased liver, they found the cancer was farther along than they thought (extending into pancreas). They switched out the liver and did a Whipple procedure. Recovery went well until he contracted a CMV infection that landed him in the hosptial for six weeks. He recovered and although it took a while, he really improved.

Beginning in 2012, he began having significant pain in the area near the abdominal incision that also came with back pain. His 4 month post transplant visit went well, but his 8 month was less than stellar. They found a slightly enlarged LN (but it turned out to be a slight infection pocket) but no tumors or signs of cancer on the scans. The really worrisome result ws that his CA9-19 level is now up over 500. He's taking pain meds for the pain and we are waiting for a follow up scheduled for early June.

I have become increasingly less optimstic of his outcome.... The doc(s) gave off the vibe the they pretty much thought that the cancer would come back... because the liver translplant was so much more involved and it took a couple of attempts to get a 'clean margin" during the whipple.

It feels good just to talk about this with others who will understand. I am constantly thinking about the tumor market level of 560 and doctors somewhat negative vibes.

Feel free leave me a note or message, i look forward to getting to know everyone!

Warm regards,
Jenny

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(12 replies, posted in Introductions!)

Hello curt! I am also a new member and although I was not happy to hear your story, or that our paths crossed here, I am hopeful that sharing our stories will be a strength and source of positive energy. Good luck to your Mom- I will say a prayer for her. -Jenny

Hi everyone,

I am the caregiver for my very loving and sweet husband, who was diagnosed with CC in September of last year, shortly after his 40th birthday.

We are in the process of doing on/off oral chemo, waiting for a liver transplant. Right now life is tough... I want to say that cancer does not rule our lives, but the truth is, it is a major player right now.

We live in South Dakota and are being treated at Mayo Clinic (they ROCK!). Right now we are on the evaluation of our third potential liver donor.

I have lots of stories to share and lots to read- I feel like I shoud've reached out months ago. This is a time when I truly need some lifting up, education and friends. I am so happy to find this website (again) and to join you in your chats and support!

Nice to meet you,
Jenny