Good to hear from you Anthony.

All too recognisable.  It will all come good. But, as you appreciate, some way to go before you see the light at the end of the tunnel. The taste issues are a trial. I am 5 months out now and although not exactly100% my taste is now well on the way to returning to normal. I was told it usually took about a year to recover and so far all the professional advice has been bang on.
I found the mouth ulcers made eating a real problem. The sides of my tongue were bad especially in the weeks after therapy. It all resolved tho with no ill effects. I was hitting the mouth wash a lot. But even that was an ordeal just to do that.
Have they provided you with a pump for your PEG?  In addition to liquid feeds I set mine up to get lots of fluid in at night.

To get me through the night I was taking painkillers and amytryptaline about an hour before bed and which had been prescribed for migraine type tension headaches. That provided good relief and at least could sleep.
 I felt the same way about wishing to sleep through treatment. I joked with the medics and asked if I could be heavily sedated, put into a coma and woken up after it was all over...

8kg loss? The dietitions are going to whip you!  

Wishing you better.. and better and better.

Paul

Hang on in there man.  The future is bright.

Hi Ant

I have exactly the same as you but on the right side. I've had the tonsilectomy and 3 teeth removed. I've had all the scans and biopsies and am just waiting for the feeding tube to go in and the mask to be made

I will be having 7 weeks of daily radiotherapy and 3 weeks of one session per week of chemo 

I've also been offered a trial and I have to let them know on Monday 

Thank you xxx

Hi LillieSunshine.
Interested to hear that you may be recruited on a trial. 
I was initially offered participation in the PATHOS trial. I was very keen and undertook a number of radiologically observed swallow tests as part of the pre-assesssment. I had to eat biscuits and drink some milky substance. It was quite fun and had a good audience.
I then had a combined tonsillectomy and selective neck dissection. That all went well and took about a month to recover fully. However the pathology showed that I had a tiny bit of cancer on the tonsil I thought was unaffected. I had a single enlarged lymph node on the affected side and which proved to be fairly well contained. So.. and somewhat disappointedly, I was pulled from the study.
I was really keen to enrol on the study as was hoping to have less treatment than the standard. I kept hearing how, and since HPV+ driven tonsil cancer is a 'different' disease, the standard treatment is like a 'sledgehammer to crack a nut'.  All the signs are that HPV+ driven tonsil cancer responds really well to treatment. The challenge is to find out exactly how treatment can be reduced or 'de-escalated'. I really wanted that!  Oh well. It didnt happen and did okay anyhow.. so far so good. :)

Hope all goes well for you. 

I recommend to eat, eat, eat before the treatment. Tuck in to your favourite foods BIG TIME.
 

Paul

Hi Paul 

I will find out loads more on Monday so will let you know 

I've not been offered surgery other than having the tonsilectomy two weeks ago 

I am eating so much I feel like I will explode 

Thank you xxx

Hi Paul 

The trial I've been offered is called Compare 

I'm worried about the side effects of the immunotherapy drug 

But I've signed up anyway

Treatment begins in a couple of weeks just after the feeding tube goes in

Also I've put on 9lbs... I feel like a whale 

Thank you 

Hi 

9lbs..  yeah!!  Nice one. I hope you enjoyed every bite.  
The dietitions were keen to watch my weight and made my starting weight the baseline for my progress... but I stressed that I had, in fact, put on a bit in anticipation. So it wasn't really a fair comparison. 
Anyhow I seemed to be keeping the extra weight off now regardless of what I eat and that is really very okay! 

COMPARE? Not heard of that and cannot find any info. Have you been recruited into a immunotherapy trial?  Do tell what that is about.
My understanding is that immunotherapy is groundbreaking science and will be the next big thing and might even make surgery for many conditions an obselete treatment.

 Respect to you for putting yourself forward for the trial. You are helping everyone.

Another few weeks before treatment starts? Seems like a painful wait. I couldnt help but want it to get going as soon as possible. I knew it was going to be bad and just wanted to get it over with. With hindsight I think a delay might have been good to EAT more of what I loved. :) 

Regardless .. make the most of your good appetite and taste. Eat, drink and enjoy!

You have a date for the feeding tube?   A little sedation and you will be in ga ga land and wake up with it all done.  An inconveniance but essential to get you through the worst days of the treatment.

Good luck Lillie Sunshine.

Paul x

ps. I am a good 5 months out of treatment now and feeling pretty much as I was before all this nonsense..  Taste is still lacking a bit and throat a bit dry at times.. and very recently a bit phlegmy throat wise. But I am really very good.  My consultant seemed quite impressed!

Booked myself a long haul flight (a guilty expense) for the autumn and going for a long walk in the mountains.  That was a trip I had planned with my eldest son last year at a similar time before things went a bit pear shaped. Better late than never and back on track... all going well.

Hi Ant 

I was also diagnosed left tonsil primary on April 9th 2019, i am currently 3 weeks post treatment that consisted of 30 sessions of radiotherapy over 6 weeks and two chemo treatments on day 1 and 1 halfway through . Week 6 and the first  two weeks post treatment were the worst regarding side effects ,but I feel I have now turned the corner with my appetite slowly returning and the other side effects very slowly improving .  During the treatment I suffered with Chemo induced hiccups that lasted for 4 days after receiving the chemo , these lasted for about an hour with a 1/2 hour respite in between all through the night . Receiving both the treatments was fine and strange as it sounds I found the radiotherapy quite relaxing . My voice was a bit hoarse by week 5 and my neck was quite sore . I pushed myself to try and keep my weight up during the treatment period which was tough going but had a minimal weight loss so luckily I  didn’t  need a feeding tube , however I did lose weight in the first 2 post treatment weeks but this week have gained some back . Currently my side effects are a sore throat , mouth ulcers , mucus ,and occasional mouth dryness , the extreme tiredness is diminishing as is the redness to my neck , my hair at the lower neck had fallen out about week 4 but this is now growing back . I started this week feeling quite low but by Wednesday my mood had lifted and with my weight creeping up I am the most positive I have been in a while . It is a tough journey mentally and physically but the key thing to remember that the success rate for cure with this type of cancer is extremely high . Good luck with the treatment and if you have any questions don’t hesitate to ask .

regards

Peter

Hi Peter

This is Hazel I am now 11 month post radiotherapy also tonsil cancer h p v 16 .+ I agree the treatment is pretty brutal but the light at the end of the tunnel can be bright. I have a blog detailing my experience 

www. Radioactiverazraz.wordpress.com where u detail my experience. Seems to sort me out  eating wise my weight is stable after loosing 2 stone I put nearly 11 lb on pre treatment and post treatment put 7 lb back   Meat can some days be difficult but gettingthere  

my life is nearly back on track still gave dry mouth and one a day 20 min nap 

Hazel 

Hi Hazel 

I read your blog last week and I found it really useful , thanks for sharing it . The specialists said the two weeks post treatment would be tough and they were , although this week which is my third post treatment week started badly from Wednesday I have improved and pushed to meet the daily calorie target . I am just impatient during this recovery phase for progress but realise it’s a slow journey , it would just be good to have a block of sleep longer than 3/4 hours and to have the discomfort of the ulcers and sore throat diminish , even slightly would be good , after 4 very good days I am feeling extremely tired today and mouth soreness feels worse .

many thanks for the reply 

Peter 

Hi Peter

know what you mean re sleep there us lightcar the end of the tunnel I  do about 8 hours ok get uo for water due to dry mouth n loo but no longer up for an hour it’s kiter 5 mins. 

Just remember it’s earky days for you and you are doing really well.

At your stage 6 weeks I had just had feeding tube out we went away at 8 weeks and that was hard. 

Bsby steps is the only way to go unfortunately this stage just can’t be rushed you will get there. 

H x