I’ve been told it’s incurable. It was discovered last month after a PET scan. I had been given the all clear only last August. I underwent my first chem yesterday and was in there for 10 hours with the cold cap on for 5 and a half (does it work?). I am to have 2 more cycles before another PET scan. Can you live for years with this diagnosis?
Hi Jan. sorry to hear your news. I was diagnosed in July 2016 stage 4b incurable. 10 external radiotherapy and 6 chemo. Carboplatin Paclitaxol and Avastin. I’m still well so you definitely can live for years. I plan on being around for a while yet. Can’t help with any info re the cold cap. I decided to shave mine off before I started treatment.
Good luck. Stay positive. And keep in touch.
you have really given me encouragement. Wishing you keep as well as you are for years and years. May I ask how old you are. I am 65. I am being treated with the same chemos as you but not expecting radiotherapy.
i will post more as I go.
Hi Jan. I tolerated the chemo well although I did have a few reactions so long days. The first time was the 2nd chemo and I was there for 14 hours but once home I was fine. I was always exhausted and spent the first week lounging on the settee lol. I’m 59.
My next appointment is mid September and I’m not having a scan this time. This is the first time without a scan and also the longest time (6 months) in between appointments.
Stay positive. You can do this.
Keep in touch
Please let me know how you get on. My 2nd chemo is 21st August. I expect a scan after my 3rd cycle.
I’ll be in touch, take care.
Just wanted you to know I'll be thinking about you tomorrow.
Guess what? My chemo was cancelled as I found out yesterday that I have a tooth infection. On top of this I need my kidney stents replaced on 30th August so my next chemo is 4th September. I am gutted as I did not want any delays in my cycles and I’ve only had one! But there is nothing I can do about it. The reason I had the PET scan initially was due to having to have stents after kidney malfunction and they were looking for the cause. Instead they found the cancer. In a way I suppose it was lucky as I have no symptoms whatsoever. My hair started coming out in handfuls over last 3 days despite the cold cap so yesterday I had my head shaved and bought a wig. Hope you are well. Take care
Hi Jan. gutted for you. But if they had gone ahead you could have been very poorly.
I didn’t consider the cold cap. Made the decision to Brave the Shave and raise some money. Couldn’t believe how generous people were and ended up raising £5,000.
I’m struggling at the minute with rheumatoid arthritis which is normally treated by suppressing immune system. They won’t consider doing this so having steroid injections.
Good luck on 30th for your stents and for chemo. And hope your tooth gets better.
Take care x
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