bonnie5

Hi Heather,
It sounds like your husband and I were diagnosed at the same time. I was hospitalized in September with jaundice and was diagnosed in November as inoperable. The tumour spread to the liver and pancreas. Cheemo and or radiation were not recommended due to my severe weight loss of 50 pounds or more. I am 49 years old and have 3 grown children. No we are not supposed to get this type of cancer. I will say I am doing very well. I am not gaining any weight but I am maintaining my weight. I feel good. I have been travelling throughout Canada to visit family and this Sunday am going on a road trip from Nova scotia to Bangor Maine on a shopping trip with friends. I live every day to the fullest and most days feel very well. Even on what some would call bad days I am just tired so I rest, watch movies and regain my energy! I hope things continue to go well for your husband be very grateful that surgery is an option for him. I have been lucky I have had no problems (knock on wood) with my stent. I had a permanent one put in in December and have had no issues as of yet. Good luck!

I also want to add that I had a permanent stent put In in November and that stopped the jaundice and for the most part the vomiting. I too had so much trouble and pain with the constipation. Finally I was put on liquid lactulose and 72mg twice a day slow release of hydromorphone. I have been on those doses for 4 months to date and am pain free. Every now and again I get a little pain from the constipation and I take 2 extra strength Tylenol and a 4mg break through hydromorphone and it is gone within a half hour…I am actually feeling better now than I was in Nov-Jan so something is working!!! I am maintaining my weight but not gaining. I eat small meals often throughout the day. I have been travelling from Nova Scotia to Toronto and Ottawa and am planning a road trip with friends from Nova Scotia to Bangor MAINE which is about a 7 hour drive. I rest when I need it but try to be up and active as much as possible. Has your SIL had a stent put in? That made a big difference with the vomiting for me. The weight loss all pretty much happened before I was finally diagnosed. Please if you have any questions that I can help with let me know….best of luck to you all…

Hi,
I have also had the same tests done. The best test to my knowledge is the PET scan as it can see the most. I am confused as to whether it is in his liver or not. Either I am reading your post wrong or they told you two different things? Mine is in the liver, pancreas and bile duct. I was told I am inoperable and that Cheemo would not help as it would not shrink the tumour and with my sever weight loss could do more harm than good. I have had a permanent metal stent put in. I am doing better now than I was after my initial diagnosis. I am up and about everyday. I did have trouble with pain and then with constipation from the pain meds but now am doing well. My pain meds are hydromorphone and I take lactulose and senekot for the constipation. I also take a sleep aid as I wads having trouble sleeping. I was diagnosed in September. So far so good. At that time they gave me 6-18 months. I am not gaining weight but I am able to maintain my weight. I eat small meals often throughout the day.
Keep in touch
Bonnie

Sorry to hear your news. This is a great site. You will gets lots of support and information here. One day at a time and don’t worry about tomorrow until it comes!

I was not a candidate for the Whipple procedure but here very good results from those that have had it. As for diagnosis the best most thorough but expensive test is a PET scan. It is a highly radioactive procedure Cat-scan but can see a lot more and can tell Dr.’s exactly where the cancer is. It is not invasive, no pain and gets you good information!!

Hi Christine,
So sorry to hear of your husbands diagnosis. I am not a candidate for chemo or radiation. I also am inoperable. Mine has spread from the bile duct to the liver and pancreas. What I can tell you is that typical of this cancer to spread before diagnosis and to have no real warning signs. I was diagnosed in November and have to say that I feel better now then I did then. With the help of pain meds Hydromorphone and sleep aids to assure I get enough rest at night, I am doing well. I had a lot of trouble with the side effects of the pains meds. The constipation was giving me more pain then the cancer was. They now have me on Lactulose for the constipation and that is under control. I am up and about every day. I also have been doing lots of traveling within Canada to visit with family. It can and does get better once the situation is under control. We have 3 children as well. I am 49 years old. The children are older. Our oldest lives in Ottawa and he is 26. The other 2 boys are still living at home and attending University and community college they are 20 and 16 all boys. They are a huge support to me and my husband and they are handling things very well so far. I have a very upbeat attitude and I find this helpful for everyone.
Keep in touch and all the best to you and your husband!
Bonnie (Nova Scotia) Canada…

Hi Dorien,
I am stage 4 CC. I have a terminal diagnosis with surgery, chemo and radiation not an option at this time. As for finances. I am in Canada so not sure if it is the same there as here. I have been off work since my diagnosis due to the nature of my work. I had sick leave built up so I went off work on September 12th and my sick leave runs out this May 7th. I applied and was accepted for Long Term Disability and also applied for Canada Pension Disability. I am the one that takes care of all the finances here. So I have everything in order. I have made sure that all of my payments that are due for things like cable, heat, lights etc. are coming out of our bank account as automatic withdrawal. Tis way my husband will not have to worry about bills. I do have life insurance at work so I have the paper work all filled out for that and I also have personal insurance which is all in order. We both have good medical insurance so that is not an issue for us and our health care system is quite different than yours. I took care of all of this as soon as I was diagnosed. I don’t want to waste any time thinking or worrying about money. We spend quality time together. we cant afford to go on big trips or anything but we have been doing little adventures as a family that are not expensive. Our oldest son lives in Ottawa and is financially secure. He has a good job, so he will be fine. the other two boys are continuing there studies in University. I don’t spend anytime being angry. I figure I have had a good life and I am continuing with it for as long as I can. I think this is life we are here and we are all going to die. I consider myself blessed with the opportunity to have the time to make sure I say what needs to be said and do what needs to be done. Some people get no notice and boom the are gone without being able to say their final good bye’s. Am I sad that I wont meet my grandchildren or get to see my children get married of course I am but that is life! Do what you can with the time you have left. Upon my diagnosis I decided at that exact moment no matter what the outcome I was going to be positive and happy for everyday that I have with my friends and family! I can tell you that my husband is having a hard time with this and I have spoke with my Dr. about him and made arrangements for him to speak to a psychologist to help him deal with it all. I think it is important as he is going to be the leader of the family and I have to make sure he is ready to take charge when the time comes. Now I spend my time making sure that I build memories and that everything is in order for the boys and my husband to do what needs to be done to secure their future.
Bonnie