Saying hello

Hello. Glad to hear that things are moving forwards for you. When I described the sensation to my oncologist and she said it was called “first bite syndrome “ I genuinely laughed and accused her of making the name up. Such a weird thing, I used to stamp my feet and say some very naughty words, much to the amusement of my husband and sons. 
Hang in there and keep smiling. I started back at work, phased return, a few weeks ago after my bowel was fixed and the chemo was stopped . It feels kind of good to have a bit of normalcy.

Take Care Nevermind,

Nic

Thanks Nic  

Yes, that first bite thing is pretty weird! I swear too, but to myself ! Great to hear that you've restored some normality ,onwards and upwards! 

I'm glad to hear you are doing so well. It is amazing what we are able to overcome isn't it? 

Hi nevermind ( love the name!). I won't repeat my sorry tale, it's in my profile, but some similarities to yours. I'm out the other end-ish of surgery and hideous chemo, but lots of monitoring which feels all-encompassing at times, with some stressors along the way that are challenging! My oncology nurse once said I'll forever be changed from this experience and it's so true but it's also positive in many ways! I've been in danger of becoming a bit 'happy,- clappy' at times ,but it's that huge gratitude for 'it' finally being discovered/ removed & treated and hopefully never to return again, though knowing will never be 'out of the woods'. It forces a different/ more positive perspective that only comes from the most worrying and challenging of times! Wishing you strength and good health to come x

Hi Bamo 

Inspiring post! My Goodness, you've had a lot thrown at you , but your self worth and lust for life shine out ! I read your profile, what a tale ️ I am halfway through 4 cycles of Capox and am today really cheesed off that the neuropathy pins and needles won't clear off , a week after 2nd infusion.. driving me nuts it is! But reading your words is changing my slowly growing guilty thought about maybe getting dosage reduced... Man up, Nevermind! and stick to the trail laid down by determined people ahead of you  !!!!

Don't ignore the peripheral neuropathy symptoms; talk to your doctor. I still have symptoms almost a year later. 

I had 2 dose reductions of the Oxaliplatin and then offered to stop it. I was told that additional doses weren't critical to my success but I chose to soldier on. I can't say what would have happened if I'd stopped the Oxaliplatin but I can say I was fine with the dose reduction.  And even with reduction, my peripheral neuropathy worsened after treatment stopped and continues to this day.

Get complete information from your oncologist.  Even if you end up making the choice to continue with a full dose, at least you are making an informed decision. That has helped me accept my outcome. 

Your story is inspiring! I just read your profile. Thank you for sharing.  

I totally agree Susan13 - don’t ignore the neuropathy.  

I still have it 10 years after chemo for breast cancer.   I start FOLFOX chemo next week and my oncologist has recommended i start on 50% of the Oxy and will withdraw it completely and just continue with 5FU if the neuropathy worsens.  Like you, I have been told it’s not critical to a successful outcome.

There are so many other factors in play and chemo only adds 15% increase in survival rate. Taking out the Oxy component doesn’t significantly decrease this number.  

Best wishes 

Lee

Ah thanks for your kind message.  I have had a  tough time, which continues,  but it's forced a more positive outlook & I'm way more appreciative of the smaller things nowadays I used to take for granted! Slowing down has been hard and I've still got issues post all of this sadly. I, too, was left with difficult peripheral neuropathy mainly to my feet post chemo, which I'm told can ease but could be permanent. Small price to pay for life, but difficult too. Was a time I literally had to drive bare foot as just couldn't feel the pedals! Pregabalin has helped ,though don't like taking it, but can now wear shoes when driving so that's something! Facing complex abdominal hernia repair imminently post hemicolectomy,  I look full-term side ways & terrified it'll strangulate so got to be done but am very anxious as it's going back in that scar . Also so close to bowel with difficult recovery which is frustrating as was so loving getting back to more normality,  working full time again after the 'coma' I describe much of last year feeling like! May be worth you discussing the dosage if side effects too tough, i was reassured the outcome of kicking the cancer remaining via lymph nodes wouldn't be reduced if the dose was reduced and I just couldn't tolerate the max dose, mainly due to horrendous fatigue ( literally couldn't move for hours!), then excruciating mouth ulcers. The reduction helped along with longer steroids and I've remained cancer free so far though a recent 'scare'. Take care & keep in touch x

Complex stuff, this cancer journey isn't it !  I must say, I'd be very upset to find the neuropathy continuing after the chemo ends. I just don't seem to tolerate it too well. Thanks Susan13 and Leelaw with the advice re not ignoring that ,and dosage -reading your thoughts , at my next 'how's it going?' with Oncologist on March 27th I will drill down into just what is reasonable to do re the oxaliplatin, how sensible it might be to reduce the dose etc.

Thank you very much for really helpful comments  X