nancypkeen

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Viewing 12 posts - 46 through 57 (of 57 total)
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  • in reply to: Green light on surgery! #19314
    nancypkeen
    Participant

    Hey Lisa:

    What absolutely wonderful news. I have been following your posts and am so very happy for you. My friend Ron had resection surgery back in August. He had done exactly what is planned for you. The first few days after surgery were difficult but he was up walking laps around the hospital on the third day. He had one complication after surgery. His bowel collapsed and as result had a blockage. This is pretty common following major surgery so after that was corrected he started healing very quickly. He had to end up being at Sloan Kettering for 10 days. He was working at home within 3 weeks and was back to work in 8 weeks traveling up and down the east coast. He just went for his 6 month follow-up and he is cancer free now. We are hoping and praying it stays that way. He did have follow up Gemzar just as an adjuvant measure. I know there is mixed opinions on how much good that does but he took the stand he would rather be safe than sorry. He tolerated it very well.

    I will put you on my prayer list and look forward to reading your posts to see how things progress.

    Hugs,
    Nancy

    in reply to: Calling All Experts! #19200
    nancypkeen
    Participant

    Hey Heather:

    My friend Ron had resection surgery in August at Sloan Kettering in New York. We also contacted M.D. Anderson and were eager to go there. The whole process took way too long. A month after we sent our paperwork we were still waiting for an appointment. We were accepted by Sloan Kettering to come for a consultation after 5 days and then finally heard from M.D. Anderson after surgery was scheduled. Please don’t get me wrong, I hear it is a wonderful hospital. The waiting was just driving us crazy. Ron’s oncologist told us M.D. Anderson was “on the cutting edge” of trying new chemo/radiation procedures and Sloan Kettering was “on the cutting edge” for attempting more surgical resections.

    I wish the very best for your husband and will keep him in my prayers.

    Hugs to you,
    Nancy

    in reply to: My mother just diagnosed with CC #19213
    nancypkeen
    Participant

    Hello Mickyma:

    So sorry to hear about your mom. As others have mentioned, this website is wonderful. I do not post often but read it daily. My friend Ron was diagnosed with CC last June, underwent resection in August. He was on Gemzar also and tolerated it very well. He was on it for 5 months and has just finished it. His six months CT scan was totally clear and his CA-199 test number was 10. He was able to work and basically had zero side affects from it. It did not alter his taste buds and he actually gained back the 25 pounds he had lost while on it. It is strange how chemo has different affects on everyone. From all that I have read, Gemzar is one of the easiest chemos to tolerate. I hope and pray your mom will find this to be the case as well.

    I will keep her in my prayers. I pray for the CC board members every night.

    Hugs,
    Nancy

    in reply to: What to expect post surgery #18946
    nancypkeen
    Participant

    Belle:

    As the postings above indicate, your sisters Stage 1 is exactly what you want to hear if you have this type of cancer. My friend also had surgery at Sloan Kettering in August of 2007. His ended up being stage 2A. His surgey went very well. We were ready to fly back to Richmond after 8 days and he became sick the morning we were being released. His bowel had collapsed and he needed to have immediate drainage. As result, on the spot a tube was inserted through his nose into his stomach for 2 days. This delayed his coming home by an additional week. Thank God we did not leave as planned because it would have been a very serious situation. Ron was up walking 2 days after his surgery and actually felt the pain was not as bad as he had anticipated — considering how large a scar he has. He worked out of his house after the first month and after 8 weeks was back working full time. He is a salesman so he was back flying up and down the east coast. He now has gained the 25 pounds back he lost and looks great. All of his blood work looks good.

    He has just finished 4 months of adjuvant chemo – Gemzar. He tolerated the chemo quite well and had zero side affects. He actually worked the entire time he was having chemo. He had clear margins following surgery but his oncologist thought he should follow up with chemo anyway. He has finished chemo (hopefully) and will be going to the oncologist on Monday for the results of his follow-up CT scan.

    Doctors are now taking a much more aggressive approach to this type of cancer. From all the hundreds of articles I have read there is a real mixed opinion from doctors on “why this cancer returns”. One doctor will say lymph node involvement means very little and another will say it means everything. One Asian doctor clearly thinks “absolute hemostasis” during surgery is the key if clear margins are received. The more I read the more confused I get.

    Ron’s surgery was classified as agressive and complete. His surgery consisted of “the entire extrahaepatic biliary apparatus and the left liver en bloc with the caudate lobe. A porta hepatis lymphadenectomy was also performed. Biliary enteric reconstruction was achieved with separate anastomosis to the right anterior and posterior sectoral ducts.”

    Ron’s surgeon at Sloan Kettering was Dr. Journigan. Which surgeon is your sister using? Sloan Kettering was absolutely wonderful — cannot say enough good things about it.

    Your sister will be in my thoughts and prayers. Please let us know how things go.

    Sorry posting is so long — got carried away…

    Nancy

    in reply to: Resection Successful #17270
    nancypkeen
    Participant

    Hello Linda:

    So sorry to hear about your dad. You will find this website to be incredibly helpful and the people are so very caring.

    As I indicated my friend was operated on at Sloan Kettering. His surgeon was Dr. Journigan. He was wonderful. He had a great bedside manner and was always very straight forward. We new going into surgery he had only a 50% chance of having a complete resection. He basically told us if the surgery was over in an hour it would be bad news and if it went on for “hours” we could hope for some positive news. He was turned down for surgery from two other major hospitals. At no point did either hospital refer us anywhere else. They just left us with that dreaded statement, you have 6 – 12 months to live. Ron is 60 years old and was very healthy before being diagnosed. He had never been in the hospital or even had a stitch to his body. The nurses joked with him and told him he had a “virgin” body — too funny!!

    He did have a complete resection — State 2A. He has just finished 4 months of Gemzar and will have a CT scan tomorrow. If the scan is clean, our Oncologist here in Richmond, VA thinks that is all we should do at this point with the exception of having CT’s scans quarterly. If the CT is not clean, of course, that is another ballgame. We are hoping and praying for GREAT news. He looks wonderful and has gained all his weight back. He tolerated the Gemzar very well and had zero side affects from it. We actually just got back from a cruise yesterday to celebrate his having finished chemo. We wanted to take a vacation before hearing good or bad news with his CT scan. All of his blood work is great and his CA-199 remains in the low twenties. We are so aware that CC likes to come back and re-visit old neighbors so we are hoping his was not friendly and the old neighbors are glad it is gone.

    If you have any questions at all, please do not hesitate to ask. I will add your dad to my prayer list — best wishes!!

    Nancy

    in reply to: New to this disease and need help with what to expect #17368
    nancypkeen
    Participant

    Lost:

    I know what you are going though. It is the worst feeling in your stomach and your heart breaks. My friend was diagnosed with CC back in June and had two doctors (one at UVA Hospital and one at Johns Hopkins) tell him his cancer was inoperable. They gave him 6 months to live without chemo and 1 year with chemo. I contacted Sloan Kettering in New York and got him an appointment within 3 days. I faxed his medical records in advance and they agreed to see him. We went into surgery knowing there was an only 50% chance of resection and thank God they were able to perform the surgery. He had the left lobe of his liver removed, his gall bladder and they reconstructed his bille duct using part of his small intestine. His situation was similar to your father’s in that it was only localized in the bile duct and had not mestatiszed to any other part of the body. He started chemo with Gemzar last Friday and so far has had no side effects.

    As others posted, please get another opinion from a major hospital that is familiar with this dreadful disease. So many surgeons are now attempting surgery because it so increases your chances of long term survival.

    You and your family are in my thoughts and prayers.

    Nancy

    in reply to: My dad has intrahepatic cholangiocarcinoma #16141
    nancypkeen
    Participant

    Hey Jeff:

    Is your comment “according to my reseach 5% of people with Ihcc surive past the 5 year mark based on people that had resection or just treatment. That is so scary and hope and pray the odds are higher. Thanks for all your information on this website.

    Nancy

    nancypkeen
    Participant

    Hello Terry:

    So very sorry to hear about the loss of your husband. My heart just breaks when I read all the posts and see how devastating this bile duct cancer is and how many lives have been lost as result. It is hard to believe that your 45 year old husband could be so healthy one minute and then be given a death sentence the next. My heart goes out to you and your family. I sure hope there are brighter days ahead for you.

    Our doctor told us that Ron’s blockage (tumor) was very small (1.5 cm) and confined to the bile duct and no apparent invasion to any other part of his body and that the only possible “cure” was resection. After researching intrahepatic cholangiocarinoma and reading all the posts, I am wondering why he used the word “cure” because that looks like a very small percentage of folks fall into that category even after having clear margins after surgery.

    Thanks for all your information and taking the time to respond.

    Take care…
    Nancy

    nancypkeen
    Participant

    Hey Richard:

    Thanks for your very kind post. So glad to hear your wife is cancer free now. I know it has to be so very stressful as you prepare for each and every CT scan, always anticipating the worst. Did she do any kind of radiation or chemo following her surgery? Our doctor has not mentioned anything about calling an oncologist at this point. I guess we will have to decide if we want to pursue that in New York or in Virginia where we live. It would be so much easier at home to have the support of family and friends close by.

    It sounds as if your dear wife has had lots of unfortunate medical conditions and she certainly has been a fighter. My friend Ron is 60 years old and has never been hospitalized a day in his life so he has no clue what to expect. I will be by his side every step of the way and hope and pray he will be able to enjoy life as he knows it now in the future.

    You and your wife will be in my thoughts and prayers.

    I am so thrilled to have found this website with such caring, compassionate people. Thanks to all…

    Nancy

    nancypkeen
    Participant

    Marions:

    Thanks for your post? How long ago did your husband have his surgery? Did you have to stay in Boston a few extra days after he was released from the hospital? Trying to make traveling plans is a little complicated with the unknown. Thanks again!!

    Nancy

    nancypkeen
    Participant

    Hello Ron:

    Ironically, my friend’s name is Ron also. Thanks so much for your very informative post. You gave me a lot of valuable information. I did not know that this type of cancer liked to sneak back around. I thought if resection was successful, and you had a clean margin, you could perhaps have lots of good years ahead. Sorry to hear you are having to deal with all that once again. You will be in my thoughts on Tuesday and I sure hope the CT brings good news.

    The reason I asked about having to stay over following surgery was because I did not know if he would have drainage tubes that may have to be removed a little later. I read a post on another website where a man got on a plane following surgery and had serious problems with the pressure from the flight. We will be about 6 hours from home so maybe a train ride will be a better option.

    Ron is a sales manaager and travels from state to state on the East Coast so I am sure he will have to take it easy for a few months. He too can do lots of work from home on his computer and postpone the personal contacts.

    The good thing is that he has zero symtoms right now. Once the stints were put in, his jaundice went completely away. The only reason he ever went to the doctor was beause he was jaundice. He never had any other symptoms. Neither one of us had ever heard of Bile Duct Cancer. I wish I still had not…

    Ron, take care and I will stay in touch with how my Ron is doing. Thanks again.

    Nancy

    nancypkeen
    Participant

    Hello Joyce:
    Thanks so much for your very kind post. Did your husband’s cancer return because of the involvement in the lymph nodes? They don’t think my friend has any problems with the lymph nodes, but perhaps the blood vessels. I guess that is probably equally as bad. The surgeon indicated if there was a lot of blood vessel invasion he would not attempt to resect at all. We are just hoping and praying that it is not. From the time of diagnosis to surgery will be about six weeks so that really scares us to death. Our main concern is that maybe it is operable now but will not be in late August Your husband was very young to have this dreadful disease. What hospital did he have his surgery? We have had consultations with Sloan Kettering and MD Anderson. My heart goes out to you and your family. From everything I have read, it is a very long road to recovery.

    I’ll keep you posted and thanks once again for caring…

    Nancy

Viewing 12 posts - 46 through 57 (of 57 total)