bonnie5

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  • in reply to: Another Newbie #73304
    bonnie5
    Participant

    I am 49 years old and the hardest part for me initially was all the waiting. the best test as far as I am concerned is a PET Scan it can see everything that is cancerous from what I know. I am inoperable but just knowing what you are dealing with is much easier than the unknown.

    in reply to: Hello, new member!! #73503
    bonnie5
    Participant

    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!

    in reply to: further introduction #71322
    bonnie5
    Participant

    Hi
    Yes I like the carnation drinks. Before my diagnosis I worked for the school board as an EPA. Which means I worked with special needs children. Some of which were tube fed. Hence why I don’t drink boost or ensure. That is what was put in their tubes and often when feeding them some that had soured in their stomach’s would come out and just the reminder of that smell is why I cant drink it. you would think mind over matter but nope every time I try it makes me nauseated.
    I am doing very well so far. I have not gained any weight but am maintaining my weight. I feel well most of the time. I have been able to travel to visit my son in Ottawa and this weekend Sunday I am going on a shopping road trip from Canada to Bangor Maine with 3 friends, I am looking forward to the trip. I just live everyday to the fullest and am surprised at how well I am doing. Knock on wood so far so good. My diagnosis was in September with the diagnosis of inoperable in November and here it is July and am still going strong!

    in reply to: New Member – sister in law, only 40 with cc #71892
    bonnie5
    Participant

    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…

    in reply to: New Member – sister in law, only 40 with cc #71891
    bonnie5
    Participant

    Hi
    So sorry to hear of the diagnosis. I am 49 and was diagnosed in September and told in November that I was am inoperable. They told me Cheemo would not help to shrink the tumour as it has also spread to the liver, they feel that the chemo would do me more harm than good bc of my severe weight loss….about 5o pounds. I am on hydromporphone for pain. I also take senekot and Lactulose for the constipation due to the pain medication. The only other thing I take is Vidatox…I got this from a friend that got it for me in Cuba….it is called blue scorpion serum and is supposed to be good for cancer it is a homeopathic medicine….I don’t know if it makes any difference but my Dr. said it cant hurt me so I take 5 drops twice a day. I have no pain and am up and about every day. They gave me 6-18 months….so far I am doing well and am just happy to get up every day and spend time with family and friends!! so far as I know there is no cure except for surgery! What I do is make the best of everyday! I eat as much as I can and whatever I can keep in no matter what it is. I wish you well!!

    in reply to: New Member #72471
    bonnie5
    Participant

    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

    in reply to: further introduction #71319
    bonnie5
    Participant

    Hi Jeeyoung,

    I am still doing very well. I have been able to maintain my weight. I eat small meals throughout the day. I tried Boost and Ensure but don’t like it. I do like the Carnation drink mixes.

    I have lots of energy and am up and out and about everyday. I am not allowed to drive because of the meds but all my children drive so they take me wherever I want to go.

    Everyone seems surprised at how well I am doing. I figured I was supposed to get worse over time but I still feel better now than I did just after my diagnosis.

    The biggest problem I had was the constipation pain. Since I have started taking lactulose for that I have no pain now.

    I am also taking Vidatox. A homeopathic drug from Cuba. I don’t know if that makes a difference at all but am taking it because it cant hurt me so why not.

    Cheers
    Bonnie

    in reply to: New member #71467
    bonnie5
    Participant

    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!

    bonnie5
    Participant

    I was diagnosed in September. I am 49 years old and have 3 children. I have inoperable cc. Everyday that I wake up I consider it a good day. I do as much as I can with everyday. Some days are better than others. I do feel better now then I did in November. My pain, weight and constipation issues are all under control. I have been traveling within Canada to visit with family and have had lots of people visit me at home as well. I don’t spend anytime crying. My idea is that you never know when you are going to die. It happens to everyone. I could have been hit by a bus yesterday so everyday is a good day. I spend my time making memories with family and friends!! Enjoy your life and don’t worry about tomorrow!

    in reply to: New member,Any advice or positive support appreciated #70678
    bonnie5
    Participant

    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!!

    in reply to: New Member – Dad not getting any treatment #71648
    bonnie5
    Participant

    Hi,

    Please tell your father he will feel much better after having a stent replacement. The procedure takes no time at all and will alleviate the jaundice and the tired symptoms. I have had a plastic stent and when it was decided that I was inoperable they replaced it with a metal stent. The plastic stents get clogged at last 3 months at the most. I was diagnosed in November and can truly say I feel better now then I did then. My cancer is in the bile duct and has spread throughout the liver and the pancreas. I feel that he and I have very close type as I don’t have a chemo/ radiation option and am inoperable but I am still here. My first diagnosis came in September when I was hospitalized with jaundice. I know it is hard but I feel that this is a very hard disease on the family and I am doing whatever I can to make it easier for them. It is important to have good quality of life for however long we are here! I am 49 years old with 3 grown children and a wonderful husband. It doesn’t matter how old you are his family loves him and don’t want to see him in pain!! Please tell him you want to spend time with him and make some memories! It may seem mean but lay the guilt on him!! I would love to talk to him if he would talk to me?

    in reply to: Husband recently diagnosed #71859
    bonnie5
    Participant

    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…

    in reply to: Digestion Recommendations #51362
    bonnie5
    Participant

    Hi Art,
    I have had issues similar to yours. I was taking senekot at night and it worked for a while but then I was at the highest dose and it stopped working. I can only say what works for me. I am on hydromporphone for the cancer pain and for digestive and bowel issues I take 4 senekot at bed time and 15-20ml of lactulose and believe it or not when I get the pain from digestive/bowel issues I take 2 extra strength Tylenol and it is gone in a half hour or less. It took many months to figure this out but now I am virtually pain free everyday. I stay away from fatty foods, dairy, nuts and eat often and small portions. Lots of carnation instant drink and puddings. Walking even just around the house also is helpful.
    Bonnie

    in reply to: need help –advice please!!! #71441
    bonnie5
    Participant

    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

    in reply to: New member introduction #69950
    bonnie5
    Participant

    Hi Jeeyoung,

    The most important thing that I have found works for me is to eat often and small portions. Prior and through original diagnosis I had lost 50+ pounds. I am now maintaining my weight and have not lost any more in many months. I do the carnation instant breakfast as I do not like the boost or ensure but some people like those. The vanilla instant breakfast are my favorite. I also often have pudding, chocolate, vanilla, butterscotch. She will find she needs to stick to food that is easy to digest. Stay away from corn and nuts, even popcorn can cause issues. Calories are as important as nutrition so I also eat candy such as chocolate and chewy candy. These are small and easy to digest and give you calorie intake. I graze on fruit such as blueberries. I am not a candidate for chemo or radiation due to the weight loss and am inoperable because of the vast spread throughout the liver. My quality of life is very good. I have my pain management under control now and feel great most days. I am palliative but stay at home. We have 2 children at home. They both work so some days I am home alone but if help is needed I have a huge network of friends that can be here on a moments notice.

Viewing 15 posts - 1 through 15 (of 22 total)