Feeling like it’s inevitable!
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I would like to reiterate what bglass and missingmom have said about checking out targeted therapy. my mom has been taking ivosidenib for 2 years and it has been remarkably effective in controlling several positive lymph nodes. She has the IDH1 mutation. Perhaps a doctor would be willing to combine radiation with a targeted therapy. Worth asking about.
Hi again Jeff, thanks so much for that offer. I’m so pleased to hear that you’re travelling along ok and feeling more positive. My sister seems to be staying positive too, which is great – she’s about to complete her first round of chemo, she’s feeling good, she’s doing lots of bushwalking… I believe she even “tested the waters” with a little run recently! (she previously did trail running).
All the best,Leonie.
Hi Jeff,
It is good to hear that your recurrence is small and your doctors have a radiation treatment plan for you. Leonie’s suggestion about looking into targeted treatment and immunotherapy options is a good one. We now have a growing number of strong tools in the treatment toolkit and having information about them in case they are someday needed is a sound strategy.
There is a wealth of information on genomic testing and targeted treatments on the Cholangiocarcinoma Foundation website.
I hope your radiation treatment goes well and does the job in beating back the recurrence.
Take care, regards, Mary
Hi Leonie,
thanks for your reply. Reading back in my original post shows me that I was in a negative place then. I guess this happens in cycles. I am more positive now. I do have a recurrence and am going for a biopsy in 2 days. Small growth that will likely be carcinogenic. Then I will have radiation treatment. I am actually relived. I feel this is small and treatable. I’m learning to live with this process and taking it in stride.
I hope your sister is doing well and can take a positive attitude as well. Let me know if there is anyway I can help.
Jeff
Hi Jeff – how are you? I’m very late to your post, have only just joined this forum after my sister was recently diagnosed. I’m too new to offer much but hope you’re doing ok….
Leonie.
From what I read, CC does seem to have a high likelihood of recurrence even post-resection, contributing to its high morality and low survival rate. I think your next step is to look for targeted/immuno therapies that are effective against your specific tumor mutations.
Hi all, I’m about 1 and 1/2 years post Whipple surgery. I have been doing well until my last CT about 2 weeks ago. A small, “possible” recurrence was seen. Will do another CT in 3 months to confirm. Oncologist says not to worry, but I am anyway. I feel like this will be an ongoing occurrence for a few years then it will be unstoppable. I know this is not good mental state to be in. Any advice on how to stay positive? Or anyone else feeling this way who would be open to talking on the phone? Thanks
jeff
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