Forum Replies Created
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- February 4, 2020 at 6:43 pm
I’m 60 this August, within 3 mths of starting ipi/nivo my limited hair, male pattern baldness, actually got thicker and slightly darker, while my eyebrows/beard turned totally white, that was over 3 years ago, since then the hair on my head is starting to revert back to speckled grey, but my eyebrows/beard are still ‘stiff’ white hairs, a weird side effect that i can live with. -
- September 3, 2019 at 8:41 pm
Hi Guys,
I managed 3 out of 4 double dose’s (Ipi/Nivo) due to rash/breathing issues, also the fatigue was bad, but I then then followed up with the full 52 nivo dose’s without any issues, well no serious issues, eyelashes/eyebrows/beard went white. I achieved stable, currently on targeted CDK4/6 trial, still stable but can’t shake the beast totally.
So it’s really different for everybody.
Tony -
- July 2, 2019 at 6:16 am
Hi Celeste and Ed
We are more than interested in your postings and thanks for all the work, information and support you provideGeoTony
Second attempt to post as the first got flagged as inappropriate due to spellcheck correcting r.at.tie.s apparently calling everybody plural overweight is out!
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- June 30, 2019 at 5:45 am
Oh cjm
I’m so, so sorry to hear your devastating news, I was just thinking we hadn’t heard from you in a while, actually dreading it in fact.
The brief time we met and worked out who was who, I remember a big warm west coast dude and you both are so young,.
This beast just devastates all that it touches, a lucky few get away, for those that don’t make it out the other end it is so painfully sad for those they leave behind.
I’m actually in Vancouver for my next round of treatment on Tuesday, maybe our paths will crossMy thoughts are with you both
Tony
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- May 28, 2019 at 10:45 pm
Hi Mark
Totally with you on keeping fit, I bike to work and back every day, only stopped for a week this year due to snow, I have my limits.
Most Saturdays I cycle to a not so local coffee shop, 30km, with a group of guys for brunch, can take a couple of hours each way, but its important for my sanity. Last summer I biked to my infusions, that was a day and the best part of 100km each way. This summer I’m heading to the mountains hiking with my better half as much as possible, just got to get out there and live, I’ve also taken up yoga, apart from stretching, I find the meditation really helps, the last thing I would have expectedI’ll not let this disease run my life.
As for your legacy, hats off to you, totally inspiring, I know the Thames well, being originally from London.
good luck and keep up the fight
Tony
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- May 28, 2019 at 10:21 pm
Tyais
I’m so, so sorry to hear you’re news, been away for 10 days before starting another trial and everything changes………. This disease sucks big time, things change so fast, argh!!!
Direct that anger you must be feeling and good luck this weekMy thoughts are with you
Tony
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- May 31, 2019 at 3:37 am
Hi Mark,
I’d bike over the day before, then bike back the day or sometimes 2 days after, I think feeling tired due to exercise helped to mask the infusion fatigue, if I’m going to feel tired, I might as well have a good reason.
My CDK trial actually starts on Monday, so I’ll be posting something on that next week.You’re in London, so it’s got to be a red or blue weekend, enjoy the match
Tony
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