June 15, 2021 at 9:56 pm #101126HannahaParticipant
Thanks so much for sharing your story, Neale. I also cried on reading it. What a breath of fresh air and hope, and well done on staying active through a truly grueling chemotherapy regimen. I hope your scans continue to stay NED. Embrace your freedom! And keep getting regular scans so if it returns, you can kick it hard before it finds a foothold. My mom also had an inoperable diagnosis in summer of ’18 and a remarkably strong response to her chemo treatment (albeit not as complete as yours!). She has had to keep fighting this dang thing but she remains in good health nearly three years later. Like you, she really clung to her regular walks while on the chemo. You’ll find my semi-regular updates on her treatment here on this discussion board.
June 14, 2021 at 7:48 pm #101121bglassModerator
- This reply was modified 3 months ago by Hannaha.
Thank you for sharing this wonderful news. Walking on air describes it perfectly. Your description of your wife as your “pillar of strength and love” really captures how our caregivers support us and get us through difficult times.
Does your doctor plan more treatment? Do you have a plan for continued scans and surveillance?
I hope you will stay in touch and let us know how you are doing.
Take care, regards, MaryJune 14, 2021 at 6:53 am #101119McFmagsParticipant
It was heart warming to hear your story and I cried out of happiness for you and your wife. Please continue to care for yourself and enjoy your wife and family. May you continue with improved health and always cherish your loved ones as they do you. Be Well.June 13, 2021 at 10:37 pm #101118NealebParticipant
My journey started with a routine visit to the GP late September last year which resulted in some routine screening returning elevated level of AFP in the blood. A followup CT scan confirmed a tumour on the liver and the GP promptly referred me to a surgeon.
After further tests, an MRI scan and explorative keyhole surgery the surgeon’s conclusion was not good: ICC, inoperable.
I was refered to a medical oncologist who prescribed a regime of Oxaliplatin (IV, via a port) and Capecitabine (oral).
I managed to keep some degree of normality in life, but the chemo, and more particularly its side-effects, had a cumulative effect.
One of the best defences was keeping up exercise. When I was feeling “yuck” (it’s the most appropriate polite word I can think of to describe how at times I felt) I would go for a two or four kilometre walk, after which I would generally feel less “yuck”. Unfortunately, I didn’t feel steady enough to continue cycling during the chemo treatment (but did eventually get back to it after the recovery from Oxaliplatin started).
Half way through the 8-week chemo regime I had a CT scan to judge progress. The short summary is that the MRI had shrunk to around half its volume! The radiologist’s report concluded “… partial favourable response to treatment”. The oncologist was more blunt, describing the progress as “bloody brilliant!
The second half of the chemo regime was tougher, mainly due to the cumulative side-effects such as “hands and feet” syndrome.
After the chemo regime was another scan, this time a “FDG PET/CT”. In short, this scan was unable to detect the tumour.
After the months of chemo, hearing that I was “in remission” was unexpected but very welcome news, even though that it came with the qualification that the cancer could return.
Leaving the oncologist’s consulting rooms was like walking on air. We (my dear wife and I) stopped in the waiting area to rearrange our bags then our eyes met and we spontaneously embraced. I wonder what other people there made of that.
There have been many many people involved in my journey and I thank all of them, especially my dear wife: this has been her journey too and she has been my pillar of strength and love on this journey we have the misfortune to share.
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