marions
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Kristin: Nothing unique about the CC of any of the people I had mentioned nor, is there a wonder drug. I wish there was. Seems, as if their bodies just responded positively to whichever treatment they chose to go with. Two of the five had never used chemotherapy. In fact, one person had two liver lesions for more then 11 years. The lesions have not changed in size, nor have any others shown up anywhere else in her body. She had never been treated for it, no resection, no chemo, and no radiation. Another person (he passed away this year at age 90) had CC for over ten years and had been treated with Xeloda (one a day) without a break. Another person had a resection followed by Gemzar (for 2 months) and she is getting close to the 10 year mark. Another person had a resection and no follow up treatment. I believe he said to be 10 years passed diagnoses. The other lady I had spoken with was being treated with I believe she said Cisplatin and Gemzar. She had a resection 7 years prior to recurrence.
And then there is our Jeff who is 91/2 years passed diagnoses. IsnJean…..that is what we are hoping for – 10 more years and up….and 10 more years and up….and 10 more years….and so on.
Hugs
MarionSince we realize the importance of regular scans the following comments only relate in an indirect way. It adds a bit to Kris
raye….I will make sure for Stacie to receive this although, she might already have seen your posting. Just in case I will copy and send it to her, also. I know that she will need your home address. You might want to e-mail her at: Stacie@cholangiocarcinoma.org. This way we we will be absolutely for her to receive this. And, thank you from the bottom of my heart for distributing the brochures. Your idea of developing something similar in Candada is a wonderful one. Thanks again.
Jean….There are several long term survivors with CC. Personally, I know of five people who have passed the 10 year mark. It is puzzling as to why there can be such a discrepancy in the survival rate with this cancer. We just have to continue to raise awareness of this cancer with the hope that we are being heard and that more research is allocated to CC.
Hello worried… Oh yes it happens. We had encountered many of these instances where the scans showed lesions which later turned out to be insignificant, or even disappeared. The good news is that it is being watched carefully. By the way, you have come to the right place with people ready to support you all the way. So glad for you to have reached out to this great bunch of CC members.
Hugs and good wishes coming your way,
MarionThis has to be the most unique website on the planet. We cover just about everything. All of you are the greatest people, ever.
Kris….what happened when you turned 30? And, what constitutes a “special occasion”?
Hugs to all
MarionSo sorry to hear about your wife. We have had several discussions on vomiting. Others may have more advise to give to you however, until then you might want to read some of the postings. It is lengthy and time consuming however, you might be able to find some answers to your questions. By using the “Search Function” and entering “vomiting” you will be able to read up on some previous discussion.
Hoping for your wife to find some relief, soon.
Hugs to both of you
MarionHello and Welcome, Jim….there are others in the Seattle area….Jean, DianeC, Lisa, and Wendy. You might want to use the “Search Function” and simply enter “Seattle” where you will find postings about Seattle and members living in the area. You might also want to use the same functon for other key words such as “lung metastasis” or whatever you might want to read up on.
Thank you so very much for wanting to hand out some brochures. You might want to email Stacie@cholangiocarcinoma.org and she will gladly mail some to you.
Again, so sorry for the circumstances leading you here but so happy for you to have found us.
Sending tons of good wishes your way,
MarionLuLuu,
I thought that this was one of the most comprehensive postings on this siite and it came from Gene. Gene, I hope that you don’t mind me pullling this up and posting it, again?it depends on how many tumors there are, where and how big they are, and whether any have metasticized outside the liver. I was diagnosed with CC in June and transplanted in August after undergoing radiation and chemo. I only had one tumor measuring 1 cm. If there are mets outside the liver that weren’t picked up by the CT or Pet scans prior to my transplant, I was told that they will grow and spread like wildfire now that I’m on immunosuppressants. I am also at increased risk for other types of cancer (skin and colon, to name two) due to the anti-rejection drugs. That’s the major risk of having a transplant. You can read about the Mayo tx protocol for CC here: http://www.mayoclinic.org/news2005-rst/3026.html
Gene (4 months out from tx, fingers crossed)
sherrig…..You want to ask the Hospice attendants about their experience with GI cancers? Nausea can be a problem. We tried switching to suppositories in order to avoid the digestive tract as much as possible. Compozene had some effect however, not always so we switched around to different anti-nausea meds. Does your stepdad’s nausea become more pronounced after he has eaten something or, is it of a constant nature? Can he chew on ice cubes? A light sedative possibly given intravenously might also help. Pain was also not an issue with my husband therefore; we were pleased with the sedatives combating the nausea. Please, stay in touch. Others may also share some of their experiences
Hello Lulu and welcome. So sorry to hear about your husbands aborted resection. I have learned that this is not an uncommon occurrence as the true extent of the disease can only be observed by the surgeon at the time of surgery. Although I don
Welcome Sherry to the site that no one wants to belong to however, the site where you will encounter some of the nicest members who selflessly share, support, and embrace all people reaching out to us. Lack of appetite has been an issue for as long as I have been on the board and it continues to be discussed. You were being treated with Gemzar in the past. Has there been any change since the discontinuatin of it? Also, has your appetite diminshed after you have started Zoloft? Is your digestion bothering you? Are you more comfortable with the intake of liquids? Until others can respond you might want to use the “Search function”. Simply, enter “appetite” or anything else you would like to find some answers to and you are able to read up on previous discussions. Good luck and so glad that you have found us.
Marion
