I'd normally respond quicker but I was offline for most of yesterday.
I can only give you my experience of EOX and its side effects but first the positive side. Without EOX I would have died during the Winter of 2013/14, but I survived the therapy and I'm living a pretty normal and active life. I say this because at the time the side effects can feel overwhelming, especially first time around.
My own side effects were inflammation around the site of the canula (it turned out there was leakage around the canula into the skin which became inflamed), feeling as if I'd been run over by a lorry, acid reflux, diarrhea AND constipation, headaches, extreme nausea, vomiting, dry retching, extreme tiredness, massive sensitivity to cold which included cold air almost making my throat constrict so much that I choked. My mistake was in thinking this was normal and not bothering to tell the nursing team until I went back for my second set of infusions after three weeks. At that point they changed my anti-nausea meds, put me on steroids, increased my dosage of Omeprazole (acid reflux was the original symptom of my cancer), diluted the chemo drugs further to avoid the adverse physical reaction (same dosage - just a weaker solution which took twice as long to be administered). I also was told to avoid breathing cold air (not easy, as the day of my second infusion the hospital was in the middle of a blizzard) or touching anything cold. All these things helped reduce my side effects.
I had been told that I'd lose ALL my hair, including eyebrows. I was lucky enough to just have a little thinning on my head - which seemed unfair when I was sat in the chemo circle and all the ladies had lost all theirs.
I got into a routine over the course of the chemo - infusions, sleep for 36 hours, then forced myself to get out of bed and take the dog for a walk at least once per day to stop my muscles from aching so much. After the first cycle, things settled down and I even went back to work for a couple of months before admitting I was too tired and irritable to be there.
Long term, I suffered from minor nerve damage with my hands and feet always feeling cold, but this slowly got better and cleared completely within a year or so.
I hope this graphic description isn't too scary - four years on and the side effects are a rapidly fading memory though I know I will need to go through it all again as my cancer is incurable and inoperable. However, the EOX did its job, shrank my primary and secondaries by over 50% and so far has stopped them from growing or spreading any further.
Thankyou for your response Dave. It is my dad who has just had his first treatment and he does not seem at all well, sleeping almost around the clock and most of the symptoms tou described. I do not know if is too much for him but he wants to continue with it as it is his only hope.
That's how I felt, somewhere between a rock and a hard place!
People said I was being very brave, but I was just being pragmatic. The odds I was given of surviving more than a year without chemo were almost zero (well under 5%) with chemo about 20%. I was so lucky, I hope your Dad is too, though obviously his case may be less clear cut as I was well into stage 4 before I was diagnosed.
Just been reading your story. Sounds very similar to my mum's current situation. Are you able to tell me any more about your cancer, stage at diagnosis? Thank you
If you click on my username, there’s an “about me” section which gives my full cancer history.
At the moment I feel fine, apart from some apprehension about a six monthly routine CT scan which is due in a couple of weeks. I was incredibly lucky and responded unusually well to the EOX chemo. 5 years later my cancer is still there but so far hasn’t grown again. Physically, it took me about 3 months after chemo to regain my fitness.
EOX was unpleasant but I’d go through it again if/when I need to. Being realistic, the chances are that it will start growing at some point but so far I’ve been blessed with 5 additional years of good quality life and I can’t complain if it all ends today.
