nancy246
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Hello Trish, I was so glad to read your mom will be treated by a specialist in cholangiocarcinoma; they are hard to find. Sending positive thoughts for her appointment on Tuesday! Nancy
Hi Nancy T, Welcome aboard. Due to your dad’s pancreatitis and diabetes I would suggest a meeting with a nutritionist or dietician. When my husband was losing weight I made him drinks with whey protein powder to put the weight back on, but with your dad’s complications I would check with an expert. I saw on your other post you asked about cisplatin/gemzar. It seems to be the most popular choice of chemo for cc. It is usually the first line of defence chosen. Wishing your dad good health. Nancy
I was watching a newscast last night on our Canadian news station about this. Sounds promising. We are going to get to the bottom of this one day and cancer will no longer be a killer! Nancy
Hello everyone, Again thank-you for your much needed support and prayers. Doug’s scan did not show any visible change to the tumours in the liver but showed many new bone mets. There was no signs of blockage but the doctor said it does not always show up on a CT, so did not necessarily rule it out. We have been able to keep the nausea under control and he is eating and enjoying food much more now. His general health is declining though. He is now suffering from hepatic encephalopathy and is very restless and confused. He does know everyone though and I can still get him to laugh. Neither of us have had much sleep the last few days because he is more restless at night. We have been giving him lactulose which is giving him the runs but not helping with the encephalopathy. The doctor has given him a new prescription which we hope will help. They didn’t have it in our small town but the drug store is getting it in today.
I went to the oncologist appointment by myself on Tuesday because Doug was not up to going. My daughter Tamia stayed with her dad. We discussed thoroughly all the options and it came down to a decision of treating Doug aggressively or with palliative care. We have chosen palliative care. Doug’s liver is in end stage and has extensive cirrhosis. I can not see putting him through chemo at this time. We are looking into whether it would be beneficial to do more radiation on some of the bone mets.
We had a good run at this disease and where able to kick it to the curb for awhile and enjoy quality time. We’re hanging in there and taking one day at a time. My heart is overflowing with love and breaking at the same time. Somehow we will make it through. NancyHi Mary and Tom, So glad things are going much better for the both of you! I hope Tom gets in that trial. Sounds very interesting! Hugs. Nancy
Glenda, So glad you heard from the Dr’s office. That is frustrating and stressful! Maybe find out from them the best protocol on contacting someone and when it would be necessary to visit the emergency department. Best wishes. Nancy
Hi Brenda, I certainly understand the shock you are feeling. It was a complete shock to our family when my very active husband was diagnosed with stage 4 cancer last October.
I am sending positive thoughts that your sister’s cancer has not spread from the bile duct. It sounds like they did a good job finding that growth right away. Cholangiocarcinoma is not always that easy to diagnose.
We are here for you.
Oh, you posted on a existing thread. You may want to repost under introductions and hit “post new topic” on the top right as you may get missed here. Takes a bit to learn how to navigate the site but it gets easy. Best wishes. NancyHi Glenda, You will find great support on this board! Yes, like Lainy said not everyone gets the itching yet for some it’s the first sign.
I am so glad your husband is able to get surgery. I am sending positive thoughts that everything goes really well. Tell him we are all here cheering for him.
When my Doug’s appetite has been poor and energy low he always seems to enjoy fruit smoothies which I make with vanilla flavoured protein whey powder (can buy at the drug store), fresh and frozen fruit, milk and fruit juice blended together. The frozen fruit makes it cold or you can use ice cubes. I have made him ones with bananas, peanut butter, whey powder, milk and ice cubes too. The whey powder was recommended by Doug’s doctor.
Best wishes to you and your husband. NancyHi Danny, You will find this board tremendous support. My husband was diagnosed with extensive stage 4 cancer last October (multiple tumors throughout liver, multiple tumors throughout spine and pelvis, lymph involvement) and in December they determined it was cc. He chose the chemo (from December to May) which he did respond to and it has given him 8 more months so far. The quality of life for the most part has been good and we have been able to enjoy many happy times with our family. Recently his health has started to fail again. He is 60. Like Lainy said chemo is a personal decision. It seems no rhyme nor reason why some respond to it and some do not and why some live weeks, some months, some years. My husband, as well as others on this site, take supplements to boost their immune system (another personal choice). He sees a naturopath. We believe it helped him tolerate the chemo well.
If the cc is confined to the liver your mom may be a canditate for liver transplant. There are only a couple of places that offer this, one being the Mayo clinic. Of course this comes with a lot of risks but may be worth looking into.
I wish you all the best with your mom. Keep being the great advocate you are and continue to seek out opinions and options. NancyThank you all for your prayers, kind words and support. Doug got his CT scan yesterday of abdomen and skeletal. He also had a chest xray. We go back on Tuesday to sit in the hot seat and get the results.
Doug has yet to have a stent inserted. Miraculously so far, even though the cancer is extensive throughout his liver, he has had no blockage. They are checking for one now.
Doug, thankfully, hasn’t gotten sick since Thursday and the yellowing seems to have subsided. The pain in his back and legs have increased though, making it very difficult for him to get around. He started back on pain killers yesterday after being “pain killer free” for 2 months. He had radiation last fall on the worst section of bone mets in his spine. It is possible we may be looking at radiating further areas to relieve the pain.
He continues to be so stoic and brave. I love him so. NancyHi Peggy, Glad to hear John was able to start chemo again. John sounds a lot like my husband Doug. He too does not talk about cc and tells everyone he is fine or good even when he isn’t. He has never even read about it, he leaves that up to me. He knows I am on this site and is glad it gives me such support. I report to him positive comments and enlightening stories. Are husbands are so stoic and brave.
Good luck to your grandson in his first midget football game! I hope John is able to get out and enjoy it. Fighting along side you here in Revelstoke B.C.
NancyHi mn, How long has your mom been on Gem/Cis? My husband was on it for 2 cycles and the tumors continued to grow. They were going to take him off except for the fact that his liver numbers started improving, so we continued and the growths stopped. He finished the 8 cycles. He was doing well for 7 months with no growth and tumor markers and bilirubin in normal range but symptoms have returned this week so we are off for a scan tomorrow. Just wondered if they should try a little longer with your mom before switching again. Best wishes. Nancy
Hi Sti, Sending positive thoughts for simple answers to Moira’s cough. Have fun with the Gumball! Sounds like lots of fun. Best wishes. Nancy
Yes Issac, continuing to wish you a speedy recovery! Nice that you will have your young strong son around to help you! Relax and take care. Nancy
Hi Pam, Welcome to our board. Your story is interesting. Did they find cholangiocarcinoma on the ovaries or anywhere else besides the liver? I would be sure to get a second opinion and even a third. Try to get to a specialist familiar with cholangiocarcinoma.
You definately need more answers before pursuing treatment. We have had a couple of members who were told they had bile duct cancer and then found out it was not. All tests are not foolproof. It is good news that your scans are clear! Wishing you all the best and that you get some solid answers soon. Nancy
