3.5 years
- This topic has 3 replies, 3 voices, and was last updated 2 years, 10 months ago by
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Thanks to both of you, Gavin and Mary. You are both such a great help to so many people on this forum. Happy New Year to you both, and here’s to health and to new and better treatments in 2022 and beyond!
Hi Hannah,
Thanks loads for posting your mums story here on the boards. And yes, there are a lot of ways for people to survive this cancer, fight it and to live their lives at the same time. Your mums story will give hope to so many people out there not only who post on the boards but also who just drop in to read without posting or joining in any way. So thanks a bunch for posting here in this section about your mum.
Much has changed since your mums diagnosis in 2018 and much will continue to change in the years to come. Of that I am sure. New treatments will come for the better with new procedures, drugs, trials etc and I do feel there is much to look forward to with everything. I am sure that new patients or their family members will indeed read your post about your mum and I know that it will inspire them and give them hope for the future.
Thank you so much for posting and I look forward to hearing further about your mum through your postings here not just on the boards but here in this section!
My best to you and your mum,
Gavin
PS – and a Happy New Year to you both and to everyone else as well!
Hi Hannah,
Thank you for posting your mom’s story. It is, as you note, heartwarming that she has responded well to treatment and that discovery of her IDH1 mutation opened the door to a targeted treatment. I hope her response is long-lasting and that new and promising treatments keep opening doors for new options for our patients.
Regards, Mary
My mom just got the welcome pre-Christmas news that her cancer remains stable, and I want to add her story to our Survivor Stories collection here because it’s important for people to know that there are a lot of ways in which it is possible to survive with this cancer. The long version of her story is available in various posts on this board, but the short version is this: in summer of 2018, she was diagnosed with intrahepatic cca when doctors discovered a large tumor (10cm+) on her liver. The oncologist in our little town who first examined her gave us basically no reason for hope, making it clear that she did not expect my mom had much time left. We said “bullsh**” to that and immediately started looking for more specialized and ambitious medical care. At first, the news just got worse: a failed “open-and-shut” surgery that made it clear her cancer had spread, and 6 cycles of extraordinarily taxing chemotherapy. But she had a 2nd, successful surgery in early 2019, 4 more “mop up” cycles of chemo, and a year of living cancer free before it returned in Feb. 2020, in the comparatively lightweight form of several enlarged lymph nodes. She went on Ivosidenib (she has the IDH1 mutation) in May of 2020 and has been on the treatment ever since. Her nodes have grown by a few millimeters in this time, but she remains free of any tumors in the liver or bile duct, with no new suspicious areas elsewhere.
In the time since we received this diagnosis, the availability of treatments and new clinical trials has given us all kinds of hope that if and when the Ivosidenib stops working, she’ll have other promising treatments to turn to. I hope a new patient will read my mom’s story and take a little heart from it because I know I took heart from other people’s stories of beating this cancer AND of successfully living alongside this cancer.
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