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Talking Frankly about Living with Advanced Cancer
Cancer | Last Active: Jun 18, 2023 | Replies (508)Comment receiving replies
Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening
for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma
Replies to "Just had my mid-way scans for my chemo and am trying to figure out what is..."
Thanks Teresa. My husband had his surgery and treatments in Singapore. So far there is no major problem with the liver and hence the oncologist didnt mention anything about liver transplant. The locations of the tumours now are the abdomen lining, liver and the ribs. A blood sample was sent to America Foundation Medicine but no target and no drugs found. My husband has used Fulfox before with good response but not this time. He is 3 days into Fulfori with minimal side effects. Hope it works.
Hi Kris
Our oncologist told us the same thing and has been treating my husband using drugs for colon and pancreas cancer. My husband has had Gemcitabine, Cisplatin and Folfox before. The difficulty now is to search for new drugs that will work on him. He submitted blood sample to the America Foundation Medicine for target testing but no target found and so no drug recommended. He is on Fulfori now. Just stay positive.
All the best to you !
OH Kris @krishh my thoughts and prayers are with you. I hope you have someone (and faith) to lean on, waiting is the hardest thing I think. Some times even when I get good news I don't act happy ( I know call me a kook) but I think I have so prepared myself for bad news that when it is good I am kind of numb takes a while to sink in.
I hope all you hear is good news.
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Hello @lean Welcome to Mayo Connect.
I see that you have joined our conversation from Singapore. Your husband is so fortunate to have you advocating for him and helping him find the best treatment available.
I see that you have already met @krishh and I'm sure that others will be joining in the conversation as well. I thought you might be interested in a webinar from Mayo, from a few years ago, about cholangiocarcinoma. Here is the link: https://connect.mayoclinic.org/webinar/what-patients-need-to-know-about-hilar-cholangiocarcinoma-and-liver-transplant/?utm_campaign=search.
Here is another site that discusses a person who received a liver transplant for this same type of cancer, https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/?utm_campaign=search
Has your husband's surgery and treatments been in Singapore or did you travel elsewhere? Have there been any discussions about the possibility of transplant?
I look forward to hearing from you again and I certainly wish you and your husband well.
Teresa