Wow, a month is impressive Kris! Today has been much better. John had a pajama day today....just what he needed.
They now sell power aid flavour drops for your water. They're very easy to carry with you, not sure if they have the electrolytes though, I'll have to check.
John is quite sore tonight but he won't take any pain meds because he's afraid that if he does they'll mask any symptoms of infection. SO Frustrating! He was a little chilled when we got home from the hospital so he's convinced himself that he's developing an infection. The heat is not turned on yet so the house is a little cool. I took his temp and is was actually a little below normal so I loaded on the blankets and he slept for a few hours. When he woke we took his temp again and it was normal, but he thinks it's rising. It did rise, but that's because it was below normal to begin with. Argh. I know he's just afraid of another infection ( he's had two that have landed him in the hospital for week long stays) but sometimes I think he can talk himself into a fever. Luckily, our two daughters started chatting to him about wedding plans (our eldest is getting married in April) and distracted him for an hour. By the time we took his temp again he realized that it was holding steady at normal. He still wouldn't take any pain meds before bed, but at least he's not insisting he has an infection. I sure hope he stays fever free or he'll be saying "I told you so!" :-)
Hi Michelle, my husband also belongs to the stubborn club, so I can totally relate. When I think he needs to be seen by a doctor I give him three choices...he or I calls the doctors office for guidance, or we go to emerg, OR I call an ambulance. I promise that I will follow through and so we've never had to call an ambulance. I've been really ill before and tried to deny needing to go to emerg. Luckily no one listened to me and dragged me to the hospital - I ended up having a heart attack (at age 42) in the waiting room! Ever since that happened I've been non negotiable when it comes to making the call about seeing the doctor when I have a gut feeling. You may not feel very strong, but I can tell that you are super strong Michelle. You are handelling so much right now, more than the average mom/wife should ever have to handle. Be kind to yourself and know that there are many people here that believe in your strength. My son always says "We have to use our Super Powers for good!" Sometimes we have to use them to get others the care they need. Hang in there Michelle, one day at a time. As I read in another post...."just keep swimming...."
Hi Kris; sounds like we're on the same coaster ride. The first thing we did when we got home was get some pain meds into him. He's resting quietly at home now. The Gatorade is a great suggestion - thanks!
John is in recovery and doing well. So relieved.
Thank you Lainy for your encouragement. It's an honour to walk this journey with John, and already it has given us the opportunity to grow even deeper in love.
I think you're right, these stents will likely help John feel so much better and he won't need to worry about them.
One day at a time, right? :-)
My husband, John, hilar cc, is having his PTCD drains replaced today with metal stents. His radiation/ chemo was supposed to start Monday, but has been delayed to have these stents placed. HE's had several blockages and two infections with the PTCD's so hopefully this solves the problems.
While I have no issues with the drains when they need to be un-capped it always upsets John and makes him feel really nauseous. I wish I could help him get over that - I keep assuring him that it doesn't bother me in the least to empty the bags or change the dressings. He's never been sick a day in his life and has always been there for me when I was ill with depression, recovering from a heart attack and other surgeries....I've always been the patient. I wish I could take his place. He!s been a little down this week and It breaks my heart. We have so much to be thankful for and that is what I keep focussing on (as does John). I think he's just realizing how long this journey is going to be and it's all bit overwhelming. We were both just saying this morning that we need to see CC as a chronic illness, not a life sentence. Our eldest daughter is getting married the end of April so that will be our focus for now. Even though he is on the Mayo protocol for a liver transplant, I am not pinning my hopes on that as the only positive outcome. Whatever happens we'll face it together and try to make the most of every day.
So, Next week he'll have a renal scan done and hopefully the radiation simulation so he can start the radiation/chemo ASAP. I just keep thinking that they found the tumour in July but there has been no chemo or radiation done yet (because of high bilirubin, infections and drain issues).....let's just say my imagination is running wild. I am doing a lot of self talking lately and working hard to keep fear out and let hope in. I appreciate this wonderful site, it's very hard to talk to others about cc as no one seems to have ever heard of it. That's another mission of mine; educating as many people as I can about cc and raising awareness. It's such a little thing, but it's what I can do for now.
Thank you Pattimelt, that was lovely.
Hi Milenz; we are very pleased with John's treatment so far at PMH. It's not perfect but the doctors seem to really care. Dr. Moulton is lovely. She is very professional, knowledgable but also honest and realistic. We have an entire team of doctors, but Dr. Moulton is our main oncologist. We also like that we have a Nurse coordinator that we can call or email with questions - she is absolutely wonderful. This is all still very new to John and I and we are just learning about this horrid disease, but we do feel like we are in the right place. I'm sure that your doctor consults with docs at PMH but it probably wouldn't hurt to have a second opinion from one of the cc docs at PMH.
Re: Blood pressure drug improves effect of chemotherapy in mice (1 replies, posted in New Developments)
Wow...thanks so much for this Gavin. My husband, John, was diagnosed with non resectable hilar cc and is on the Mayo protocol for liver transplant. His is supposed to begin radiation and capecitabine (xeloda) within the next 10 days. I don't know if the radiation is SBRT though. It's all a bit terrifying, but we are hoping and praying that transplant is the right option. It seems that so very few patients actually make it onto the transplant list and then out of those that make it onto the transplant list sometimes get removed because of spread. They've assured us that even if John doesn't qualify for transplant after the chemo radiation and lyphectomy they'll be able to control the cancer and extend his life - so hard to know what the right thing to do is.
I'm also from Canada, Toronto actually, so we're practically neighbors. My husband has hilar cc and is being treated at Princess Margaret by Dr. Moulton. They seem to be extremely well versed in cholangiocarcinoma at the PMH. He is about to start xeloda and will be also having radiation at the same time. I'm afraid I can't tell you how the xeloda works just yet. I'm so sorry to hear about your mom. This is such a horrendous disease. I wish you all the best. Peace.
Hi there Oceangirl;
just wanted to let you know that I'm holding you and your brother (and your entire family) in my thoughts. Time is so precious and it's wonderful that you can spend some with your brother and family to make wonderful memories to hold in your hearts.
Donellalu; My heart is aching for you, your mom and your entire family. I know I am new to this group, but I just wanted to say that I am thinking of you and holding your family in my thoughts and prayers. Your Mom sounds like an amazing woman who has filled your heart with many good memories. How wonderful that you can be there with her, such a special gift for both of you and such a great support and comfort for your dad. Peace and blessings to you and your family.
Does anyone have any experience with Florastor? It's a probiotic taken twice daily to help restore "good" bacteria in the gut. My husband recently had C diff colitis and I'd like to help protect him from that happening again. He is starting his radiation and chemo within the next 10 days. Any thoughts or information about your experience with Florastor would be greatly appreciated.
Rachael and Cathy, I am so inspired by both of you! Thank you. My husband is on the Mayo protocol for a liver transplant - he has a hilar cholangiocarcinoma that is non resectable. He was diagnosed in July. There are so few people that get this transplant that it's difficult to know how successful it is. Thank you so much for giving us hope!
Thanks for the warm welcome Kris.
John's tumour is non resectable because it is in the bile duct that sits in the middle of the liver and is also resting against a portal vein. A transplant is his only option for a cure. He will be taking Xeloda (chemo) twice a day, 7 days a week in conjunction with radiation twice a day, five days a week, for five weeks.
He started out with a PTCD only on the right side of his liver and a stent on the left side, but his left lobe is quite atrophied and the stent wasn't working so they put a PTCD on his left side as well. They think the tumour started on the left side of the bile duct.
The team at Toronto General Hospital and Princess Margaret are all very familiar with Hilar cholangiocarcinoma and have replicated the protocol from the Mayo Clinic. I didn't realize that it was a relatively rare cancer. I think that John was very lucky with his tumour location because it presented with Jaundice overnight and was therefore caught very early. Weird to see that as a lucky thing!
How wonderful that your husbands tumour was resectable! I have heard that everyone responds to chemo differently. John was told that the most common side effect of Xeloda is hand food syndrome - very dry sore hands and feet that sometimes develop blisters. We'll cross that bridge when we get to it.
Hi everyone. My name is Tanya and my husband, John, 57, was diagnosed with Hilar cholangiocarcinoma, also known as a Klatskin tumor on July 19, 2013. His tumour is located in the Y of the common bile duct and is around 2 1/2 cm. So far there is no spread (PET scan, CT scans, MRI, and needle biopsy of lymph nodes. He is currently on the Mayo protocol for a liver transplant.
He has had internal/external drains placed on both sides of his liver and this has helped reduce his bilirubin from 499 to 37 so that he can finally start the chemo/radiation regime. He will need to have the drains replaced this week with metal stents before radiation begins, (hopefully in 10 days.)
We live in Toronto and are extremely pleased with the team of doctors that are working with us, but it's all rather overwhelming.
It frightens me that the tumour was found in July but no chemo or radiation has taken place (because of the high bilirubin). He's also had two infections since the placement of the drains but has managed to fight them off after time in the hospital on iv antibiotics. Unfortunately he also developed C dificile during the last infection but that now also seems to be gone.
Other than the cancer John has been the picture of perfect health and takes no medications for anything. I guess he has that going for him.
We have been married for 27 years and have three children 24, 21 and 16. I am so thankful to have found this space to share thoughts and concerns. As a caregiver I feel so overwhelmed at times and generally anxious about what lay ahead for John. We are working hard to remain hopeful that he'll be able to get a liver transplant but in the back of my mind I am so afraid that it will spread. I can't imagine life with out John, but I'm also incredibly grateful that we are together here and now. Our entire world changed in the blink of an eye.