Just had my follow up PET-CT scan

All sounding very positive Kevin, great to hear from you. Toughing it out without a tube is quite a feat, though I know some can; I certainly couldn't have done! "Enjoy" your confinement as much as you can.

Very well done. 
onward and forward

I had a hot spot after treatment. No follow up PET/CT but a biopsy which was negative. 

Hi Kevin,

I am so pleased to hear everything is looking good, it gives me real hope as I am about to start radiotherapy and chemo for left tonsil cancer and 1 lymph node in the next couple of weeks.I was so worried that this virus would mean I couldn't be treated. Look after yourself and keep safe.

Best wishes xx

Hi Carol,

I think your concern is pretty much the same for all of use as soon as the big C word is used, I know it was for me too. took me quite a while to process and believe that what the consultant and team were telling me might be true rather than just saying nice things to give. me hope. One thing I've learnt, I think, is that in a way oncologists bedside manner in a way sucks! That's not to say they are uncaring or less professional than any other Doctor it's just that I think they are brutally honest about the potential prospects. Mine told me straight up that the treatment was going to be rough and before the end I'd probably go through a stage of hating him and what they were doing to me, but he was confident I'd come out the other side and it would be a positive outcome.

I don't know about you but they never actually found my primary on any of the pre-treatment scans, it was only after they pull me in to rip out my tonsils,  shave a chunk off the back of my tongue and take bits form various locations in my throat that they found a 3mm cancer in my tonsil. They did all that, got the results and just over 2 weeks later I started the chemo and radiotherapy, my throat was rough before they started as I'd barely started recovery from the surgery! Then I was due to have the PEG put in and they had to cancel that due to having emergencies come in so shunted me for 3 weeks later. The team decided, with my okay, that at pretty much the end of week 4 it wasn't worth doing as either I would be in no real state to take the surgery by then, or I'd be coping okay, or they have had to intervene and do a nasal gastric. All of which on consideration made it pointless to keep the booking for the PEG. As it was I managed to get through with any kind of feeding tube, more by luck than design I think. 

As for the treatment I was kind of fine for the first 4 weeks just generally feeling meh, with loss of taste and hideous metallic taste from cisplatin. Even water tasted metallic! It was half way through week 5 when it hit, I went to bed, and woke up the next day and just felt like I'd been hit by a truck. from then until about 10 days post treatment it was really hard but then I started to feel a bit better and was better able to start eating a bit more. Now just over 3 months post I'm back able to eat more or less anything, main thing is that with the lessened amount of saliva some drier foods are more aggravation than it's worth to bother with, rather than I can't eat. Dry rice, obviously cooked, is a pain as in a way it just stick around the inside of my mouth a bit like a mouthful of confetti, takes so much sipping of water to clear it that it isn't worth the aggro!

Other than that all seems to be going well, and hopefully will continue to do so. Just always try to stay positive, it won't help medically, but mentally it will help you so much to get through the rough patches. Just remember its a matter of a few weeks out of the rest of your life in reality. 

Keep safe and all the best for your treatment to come, Kevin

Hi Kevin

I am so glad you’ve posted this as I’ve found it really helpful. My hubby had the exact same treatment and finished mid Jan 2020 so just slightly behind you.

We are waiting for the date of his PET CT scan which they said will be 14 weeks post treatment so likely the end of this month. I am worried that it may still show something dubious. There’s also a chance he won’t get scanned due to Corona so I’m worried about that too.

Were also on the 12 week isolation but Ken is still a bit weak to undertake any jobs. He did manage to potter in the garage yesterday and has actually cut the grass front and back so that’s a huge start.

Stay safe and well and thank you for sharing. 

P.s. I’m also in awe that you did this without a feeding tube of any description. 
Ken just couldn’t have managed without his PEG.

Well done you!

Hi Kevin,

Thank you so much for your reply and for the info about treatment effects and tips, it really helps to read how other people who have been through the same thing have coped and come through it all. It was good to hear you managed without a PEG, I am keeping fingers crossed I will manage without one as they are not keen to fit one with this virus at the moment. I have had a bit of a setback today as after going for my mask fitting and a CT scan yesterday it seems my tumour is larger than they initially thought so going for a PET CT Scan next week and they will then decide on the way forward. 

So pleased things are going well for you, keep your fingers crossed for me xx

Quick update. Just had a call from one of the oncologists, they’ve reviewed and discussed my scan in their MDT and feel that it’s nothing of concern and is highly likely to be last stage of stuff clearing out. Booking me for an ultrasound and possible biopsy at same time, depending what they see, in 10 weeks. Opinion though was that everything was showing very positive results and progress from the treatment. 

Keep safe all, Kevin

Great news

Nice to hear the progress, stay positive it is a strange world we live in at the moment - Shielding is weird