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(29 replies, posted in Introductions!)

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.

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(41 replies, posted in Introductions!)

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!

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(7 replies, posted in Introductions!)

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!

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
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!!

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(8 replies, posted in Introductions!)

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

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(7 replies, posted in Introductions!)

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

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(13 replies, posted in Introductions!)

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 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!

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,

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?

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(12 replies, posted in Introductions!)

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...

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(9 replies, posted in Pain Management)

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

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

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(15 replies, posted in Introductions!)

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.

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(7 replies, posted in Introductions!)

So sorry to hear this Wilma. My wish is for you to have peace and know how much you meant to him in this his last year with you. My thoughts and prayers are with you today.

I have the sweating often but have never had any fainting episodes. I have been light headed before due to lack of food. If he doesn't have a stent he may need one or may need a stent replacement. I have a metal stent and have no issues with it. It was put in, in November replacement for a plastic one. The plastic ones are supposed to be replaced every 3 months. He may also need to eat more. Carnation instant drinks are great if eating is an issue. I also am a fan of butterscotch pudding smile

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(7 replies, posted in Introductions!)

Hi Willow,
Due to the cancer traveling from the bile duct to the head of the pancreas and throughout the liver I am inoperable. The were initially hoping to do a liver resection but the liver blood and entire liver is cancerous so surgery is not an option. Due to the severe weight loss chemo and or radiation is not recommended. The oncologist feels that my attitude will get me further than any chemo will. I am happy with the decision as my quality of life is good.

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(13 replies, posted in Introductions!)

Hello,

I was diagnosed in September with final diagnosis of inoperable extrahepatic cc. The originally tumor in the bile duct blocked the liver therefore I was hospitalized with jaundice. The tumor traveled throughout the liver and head of the pancreas. There was hopes of resection until they did a PET scan and found the entire liver and liver blood was cancerous. I was sent to oncology. The information I was given by oncology was single dose gemtacide (sp) possible but not advised. Due to my severe weight loss they felt it would do more harm than good. I have a very positive outlook and am determined to live life as full and happy as possible. I do most everything that I enjoy except work. My job is working with special needs children, it is physical as well I would be exposed to many viruses in a school setting. I am on Long term disability. I am on Hydromorphone for pain and it works very well. After taking some other meds for side affects of pain meds I finally take lactulose for constipation issues and that works great. I am mostly pain free, and have reasonable energy levels. I eat small meals throughout the day and am maintaining my weight now. I had lost 50+ pounds prior to diagnosis I  now weigh 77-81 pounds. She needs to keep eating that is the most important thing. I am 49 years old and have three boys ages 26,20 and 18. We live our lives as normal as possible. I have done and continue to do a lot of volunteering in my community. I was recently awarded "Maritimer of the week" on the news. You can find it online at atlantic ctv news.ca click the section "Maritimer of the week" that was a very special moment for me and was a complete surprise! I feel that I have very good quality of life. I feel better now than I did when I had my diagnosis. Since diagnosis I have traveled to Ontario twice from Nova Scotia to visit family. I have a lot of support from family and friends. My community is great! I look at this as an opportunity to do what needs to be done say what needs to be said and make sure that the people I love and care about have some good memories to have and share! I feel better now then I did when I was diagnosed with great pain management and a great attitude.

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(12 replies, posted in Introductions!)

Hi everyone,

Well to start off the Dr. said I can take the Vidatox. It won't hurt me or interfere with my pain meds. It is just a homeopathic med, not likely any good but why not take it. Anything is worth a try smile You can only get it in Cuba. It comes from Scorpions and is blue scorpion serum. I am going to take my first dose today, you are supposed to take 5 drops under the tongue twice a day. I will keep you all updated on that.
As for the chemo, now that I have the pain under control and am able to maintain my weight I am going to revisit this. The Dr. felt that if we did do any chemo and all it would be single Gemcitabine. He felt that with the huge and continued weight loss it would do more harm than good. At the time I agreed because I was so weak and tired but now I am doing well. Keeping my food down and a steady weight of 77-81 pounds. I am stage 4 extraheptatic CC. Tumor on the bile duct, head of pancreas and all throughout the liver. The liver surgeon I have is awesome and soooo really wanted to do surgery especially because of my age. I am really glad that I decided to join this site. Just having people that know what the heck CC is helps because the first reaction of people is that they have never heard of it. I live in Nova Scotia, just outside of Halifax. Hope this post isn't confusing. I am trying to answer all the responses. So happy to  have responses smile

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(12 replies, posted in Introductions!)

Hi Lainy,
Yes I think I have the posting figured out now. They are not giving me anything. No chemo as I am not a candidate but my friend brought me the Vidatox from Cuba. If you look it up of course it says it shrinks cancer tumors. I will let you know what the Dr. says. I have been reading the postings on here for a while now and find it very informative. So I thought I would log on and tell my story.

I had a plastic stent. They said they would replace it with a metal stent if I was not a candidate for surgery. I had the metal stent put in. That was done in November. They told me that the plastic stents don't last and have to be replaced. I have had no problems with the metal stent. As for the chemo I am not a candidate for that so cant speak to that. Hope that is helpful.

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(7 replies, posted in Introductions!)

I started with issues of stomach and back pain. Then I started to lose weight and not be able to keep food down. I went to the Dr. in June they did a CT scan and nothing showed up. she did blood work nothing there. They tried prescriptions for irritable bowel and things of that nature. I continued to lose weight. I was hospitalized in September with Jaundice. Originally they thought I had gall stones and that they would do surgery and remove the stones and the gall bladder but with further testing discovered CC. I was in the hospital for 6 days. They did many tests ultra sound and MRI. They sent me home with a scheduled visit with a liver specialist/surgeon. At that visit he told me I was stage 4 and that it had traveled to the liver. The original tumor was in the bile duct. They said it was on the CT scan in June but was so small that it was missed. In September it had grown and was blocking the liver from functioning so that is why I was jaundice. Since then they did a biopsy and PET scan to be sure. I seen the oncologist and they said chemo would not help to shrink the tumor and risky because I have had so much weight loss. I weigh between 77-81 pounds. I am doing well with pain meds. They put me off work but I am up and about and eating small meals often and have mostly good energy levels. I am very positive and am enjoying life.

I have been prescribed hydromorphone. I find it helpful. I did have problems with constipation. I have been using lactulose  and senekot for the constipation and found that works very well. A friend brought me Vidatox from Cuba and I was wondering if anyone on here has heard of it or used it? I haven't tried it yet as I am waiting to speak to my Dr. about it first.

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(12 replies, posted in Introductions!)

Hi
I am not sure how to post on this. I was diagnosed with CC in September and have been reading your site and am very interested in the discussion board. I am a 49 year old female. I live in Canada. I have lots of comments and questions and possibly good information on things that I have found have helped me.
I started with issues of stomach and back pain. Then I started to lose weight and not be able to keep food down. I went to the Dr. in June they did a CT scan and nothing showed up. she did blood work nothing there. They tried prescriptions for irritable bowel and things of that nature. I continued to lose weight. I was hospitalized in September with Jaundice. Originally they thought I had gall stones and that they would do surgery and remove the stones and the gall bladder but with further testing discovered CC. I was in the hospital for 6 days. They did many tests ultra sound and MRI. They sent me home with a scheduled visit with a liver specialist/surgeon. At that visit he told me I was stage 4 and that it had traveled to the liver. The original tumor was in the bile duct. They said it was on the CT scan in June but was so small that it was missed. In September it had grown and was blocking the liver from functioning so that is why I was jaundice. Since then they did a biopsy and PET scan to be sure. I seen the oncologist and they said chemo would not help to shrink the tumor and risky because I have had so much weight loss. I weigh between 77-81 pounds. I am doing well with pain meds. They put me off work but I am up and about and eating small meals often and have mostly good energy levels. I am very positive and am enjoying life.