My father was diagnosed on October 29th with Cholangiocarcinoma
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Kimmie I am sure others will join me in saying thank-you for such a wonderful, hopeful and heartfelt post.
While we are here to answer questions, advise, give hope and joyfully leap when we get good news, we cannot do what we do without at times saying things that may upset others. We try not too but sometimes it all gets a bit much for people to cope because they are scared or just too ill.
I became addicted to this site when my husband was first diagnosed 4 years ago. We have the most caring, loving people from all over the world. This is our CC Family. What amazes me is how some of our dear family who are extremely ill still take the time to come here and help others. It is amazing and awesome! There is no other site like ours.
Because we have to be frank at times, we always state that one should NOT listen to statistics! Statistics are not accurate. We also like to say that no one is born with an expiration date on the bottom of their feet. Each case is different and in many cases extremely surprising.
New treatments are coming along all the time and the best way to beat it all is with a winning attitude and the love like your family shows. Please keep us posted on the progress of your mother, sounds like she is doing very good.Hey Michael – parallel lives here, except I’m the daughter and it’s my mother battling CC. I am 40, the oldest of three, with children ages 10 and 8. My children are smitten with my mother as well, she and my dad live 20 minutes away and we try to see her as often as possible.
My mother is 63, and was diagnosed on 5/20/09 (the day after I turned 40!) after a visit to the ER with a week-long stomach virus. Thinking it was diverticulitis, they ordered a CT scan, but instead discovered a 12cm x 9cm x 6cm tumor on the left lobe of her liver. After MANY tests to rule out any other primary cancer source, including a PET scan, they confirmed it was not cancer metastasized to the liver but in fact CC.
Luckily she was a candidate for surgery and had the left lobe of her liver removed on 7/2. (I never knew the liver was the only organ that could regenerate. How amazing.) Her cancer was classified as intrahepatic cholangiocarcinoma, no lymph node involvement and no metastasis elsewhere. The lobectomy had completely clean margins and it looks like they got every bit of the tumor. (The tumor specimen was within 0.3 cm of the surgical margin and weighed a whopping 18 oz.)
After recovering from surgery, and spending a week in the Outer Banks with the entire family, she had a port put in and began chemo in late August. She has three week cycles with Gemzar and Cisplatin on Day 1 and Day 8, office visit on Day 15, then start all over again. It’s a long day for her, because she gets iron and antinausea before the chemo, with fluids in between each, so it’s typically a 6 hour day for her. Lately her WBC and neutrophils were just way too low, so she’s been getting Neupogen shots on Days 2-5 and on Day 9.
All things considered, she’s tolerated chemo like a champ. Some nausea, fatigue and hair thinning, and the Neupogen shots make her bones very achey. But considering some people’s reaction to chemo, she’s doing great.
She is currently on Day 4 of her LAST CYCLE! Repeat PET scan scheduled for 12/21, results at her oncologist appt on 12/29. Hoping for a very GOOD start to the new year…
You said in your original post that so much of what we read is grim, the prognosis is not good. But in my family we’ve found we simply cannot dwell on those “statistics.” We are taking things one day at a time, trying not to think too far into the future. We go by one cycle, one week’s blood results, one day’s chemo. We are a close family, with the added bonus of my sister being an RN, previously oncology but now hospice, so she knows so much. (Though I feel like I could become an RN once we get through this, I’ve learned so much.) We draw strength from each other and from our faith.
My daughter hit the nail on the head… she had to write a paragraph this week for homework about someone important in their lives. She wrote about her Grammy, with supporting facts about how she’s encouraging when she gets a bad grade, how she’s always so happy, etc. The last part said, and I’m paraphrasing because it’s not in front of me, “My Grammy is battling liver cancer, and she is being SO BRAVE!!!!!” (I can’t figure out how to make the hearts under the exclamation points like she did.
Do you have siblings that are involved in your Dad’s life? Having my sister has made a world of difference. We often tell each other we can’t imagine going through this as an only child. And I know it means a lot to my mother as well. It must be so difficult battling CC if you’re alone.
I’m an occasional lurker here and don’t really post, I mostly just read. But your story hit pretty close to home and I felt a strong urge to reply and tell you I can totally relate! Best of luck to your Dad and your family.
Michael,
Yes, the statistics can seem grim and depressing, but they are based on history. Statistics are not good predictors of an individual’s results. Most of us on this site have gotten discerning about what sites we visit, because the depressing ones don’t offer hope or even much good advice. This site, however, manages to share encouragement, results, and information that makes for a great resource. As you become an informed advocate for your loved one, the doctors will consider you part of the caretaking team. As long as your dad is informed, he will and should be encouraged to make all the decisions he can handle.
“They also serve who only stand and wait” was said about members of the military, but it applies to all the caretakers who want the best for their loved ones. By educating yourself and being prepared with your list(s) of questions, you can help the doctor stay current and consider alternatives. A good doctor appreciates your input, because they may know the medicine and the “norms”, but you know the patient in ways they don’t.
My cc diagnosis was in May, 2007 with jaundice, ERCP, and stent in the bile duct, but my cancer was extra-hepatic. I have not had chemo and radiation simultaneously, but I have had both. Even if you start a plan and only have one treatment, it is still the patient’s option to say no, I don’t want to continue that. The side-effects are more than I want to deal with. What else can we try? Have you considered Gemzar/Cisplatin?My suspician is that many of the sites you visited were not very personal and focused on the stories that had short time between diagnosis and death. One of the tings I value on this site is that we have patients who have lived 3, 5, 7, 10 years or more. And what’s fascinating is that they share stories in details, what they’ve experienced, what they expect to try next, what changes they make and why, what now seems “normal”, how faith has helped. And the people who’ve survived longest still have lists of options to try in the ongoing battle.
My Mom was also diagnosed but at the age of 86, she chose not to pursue radiation or active chemo. When she chose a low-dose pill to take at home every day, her oncologist didn’t think she would last a year. Prayer was her best ally. She lived almost 3 years after that, passed away Aug. of this year.
When the patient makes informed decisions, they tend to do well and need all the support they can get, no second guessing. And if the doctor doesn’t agree with the patient, fire the doctor and find one who supports the patient’s choice.Hope this helps. Gotta run. Need to be at the hospital in an hour, having blood transfusion (2 units) because my hemoglobine dropped to 8.3 or something like.
Post as often as you like, you will get responses.
LouiseGood luck, Gerry!!!!! Come back soon & let us know how you are. We’re thinking of you!!
Welcome, Michael – I’m sorry I can’t help with your questions but it’s good that you’ve found this wonderful site. My very best wishes to you & your family.
Julia x
Good luck Gerry…I will keep you in my prayers. Please let me know how you are doing when you are up to it. I wish you a smooth and fast recovery.
Best wishes,
Michael
Good luck, Gerry. I am looking forward to hearing from you as soon as you are ready to share the news with us.
Best wishes,
MarionGerry,
Good luck tomorrow with your whipple, I hope it all goes well for you! I will keep my fingers crossed for you.
Best wishes
Gavin
Hi Michael,
If you don’t mind, what was your Dad’s biliruben level at the time of surgery? The reason I ask is because the my Dad’s doctors keep putting off surgery waiting for his biliruben levels to come down and frankly my Dad’s getting frustrated.Best wishes for your Dad and your family.
Thank you!
Hi Gerry,
I’m coming in on a thread here so apologies to Michael (I’m pleased you’ve joined us, the level of information & knowledge on this site is second to none. I do wish your dad well with his treatment regime)
Gerry, looking at your post you have your Whipple op tomorrow, so the very best of luck to you.
My main post op problem was wound infection which has dogged my recovery, but I am finally mended & have a scar instead of a wound! And a damned impressive scar it is too.
It’s a haul back to some sort of normality – I seem to have taken forever & still 6 months on can’t keep up any physical activity for too long, but things are improving month on month – doubtless without the recurrent infection it would have been quicker. Don’t worry if your recovery doesn’t happen as quickly as you think it should – your body will take it’s own time to decide.
I’ll be rooting for you tomorrow, I hope your operation goes as planned & is a success.
Best Wishes, ValHi Michael
Sorry I can’t help you regarding the treatment you describe but it seems to me your doing all the right things to support your Dad. You seem to have a good team of medical professionals supporting you and you have expanded your own knowledge as well. This site is great – full of supportive people with direct experience of this desease. I was diagnised withh CC about 6 weeks ago and I have a whipple operation on Thursday. Keep us advised of your Dad’s progress – we all benefit from each other’s experiences.Gerry
Hi Michael,
I am no help with advice on the treatment plan, but it does sound very positive that doctors deemed his surgery a success.
Reading your words about poring over this site and others and the fear that hits you every waking moment rings so true to me and many others here.
Know that you are not alone and that everyone here has gone through what you are experiencing.
Best of luck to your family.
Are you in Delaware by chance?
Jan
Michael:
My sister had the exact same treatment plan that is being recommended for your father. She had an R0 resection at Hopkins. After a six week recovery, 5FU on 24-hour continuous pump with radiation 5 days a week for 6 weeks. Then a month off and Gemzar once a week for six months. She’s in the middle of the Gemzar now. Everything seems to be going great with her, with the exception of some typically nasty side effects from the treatments.
Hi Michael,
Welcome to the site, although I am sorry that you have to be here but glad that you found us. Since you have been reading the stories here, you will know what a great place this is for help and support. My dad is 65 and was diagnosed last year. His CC was deemed inoperable and he couldn’t get radiation so his treatment was PDT. He also wasn’t able to get chemo later on in his treatment, so I can’t help you with your specific questions relating to them.
Like your dad, my dads skin and eyes went yellow with the jaundice and he got the horrendous itching also. He eventually was admitted to hospital for the ultrasounds, CT scans etc before eventually, CC was diagnosed. I know what you mean about being scared for your mum and dad, thats natural. Having to deal with all of this is not easy but it sounds like you are doing a great job in being there for your dad right now.
I hope your dads treatment goes well, and I wish you, your dad and all your family my very best wishes.
Gavin
Lainy wrote:Hello to you, MVB and since you have been reading up on us I don’t have to tell you what a wonderful “family” you have now adopted.
Sounds like your father’s doctors are spot on. I can’t help you with the chemo as my husband had radiation. When he had his endoscopy 4 years ago the dye leaked on his pancreas and literally destroyed it and he too had an infection and dined on chipped ice. He had a Whipple surgery, is now 77 and doing pretty well. The cancer returned last year where his duodenum used to be and we had it zapped with cyber knife. It has now returned again and we are just waiting for a date for a PET Scan but so far the radiologist feels we can again use the cyber knife.
How wonderful a grandfather your dad must be to adore his munchkins so much and how lucky the grand kids are to have a Grandpa like that.
You have every right to be scared as this is a real nightmare, but the better news is one just gets used to it, honestly. Glad you did a lot of reading and if you look at the top of the page there is a search button where you can just type in a word and get answers. Please keep us posted and wishing your dad well.
P.S. We tell newbies not to think about what others have gone through, dates or times. Everyone is different and this is different with everyone!Lainy,
Thank you for the welcome note. It is great that this family exists for people that have to deal with this horrible disease. I hope the cyber knife wipes out your husband’s cancer and the two of you have many more happy healthy years together.
Best wishes,
Michael
devoncat wrote:Welcome to the site. We always do our best to help each other. This cancer is a beast but there are some bright spots and some hope.I have not had radiation or the type of chemo prescribed for your dad so I cant offer any advice but hopefully someone will be around shortly.
Best of luck with your dads treatment plan.
Kris
Thank you for your welcome note Kris. I wish you many bright spots.
Thank you,
Michael
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