Update on treatment - week 5 / 6.5 of RT and chemo

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Second post so just wanted to provide an update on my treatment post surgery, which was to remove a tumour on the tongue with a free flap repair, and neck dissection to remove cancerous lymph nodes - T2N3bN0 (HPV negative).

Week 5 of treatment now and wanted to share some experiences:

21 of 33 RT complete. First 3 weeks weren't too bad for side effects, but then the mouth ulcers kicked in.
Nasal feeding tube fitted in week 3 but still not using it. Today I am eating soft foods with 2-3 fortisips a day. Eating is a bit up and down, sometimes painful, sometimes quite manageable. I have kept weight stable during treatment but I am still 10kg lighter than before surgery. Docs and nutritionists are a bit surprised I'm still eating and encourage me to continue as long as possible as it will speed recovery
Fortisip shakes are rank and I have recently tried the juice which I find a bit better
I do get flare ups of pain, mouth is swollen and talking has been difficult for a couple of weeks. Swallowing has recently become more uncomfortable and throat is a bit sore
For pain relief, still just on paracetamol. I alternate between aspirin and oxcetycaine to ease the mouth pain before food
Energy levels are generally down but some hours I feel vaguely normal. I have the odd afternoon kip if feeling really tired but hasn't been too often
Overnight I sleep ok for 3-4 hours at night until dry mouth wakes me up and a buzzing mouth. May dip into morphine next week
Saliva very thick and can cause coughing fits as it tickles the throat
5 weeks of chemo complete. First week of chemo the side effects were quite rough - lots of sleeping and feeling sick and a bit of throwing up, relatively easy the next 3, appetite seems to been temporarily supressed (maybe a slight queasiness) but that's about it and feeling ok about day 3. Let's see how the last one goes.
Hearing has been impacted from cisplatin so they moved me to carboplatin. One pro from that is that the chemo time went from 2 hours to 1 hour.
Constipation quite bad from checmo related anti sickness meds

Hope people have found that useful. I now move into the final week and a half of RT before recovery begins. I have read that this will be hardest 2-3 weeks after treatment ends but I see the end of this particular episode in sight.

Beesuit 6 months ago

Hi beckerman

Thanks for posting the update.
You are doing remarkably well so well done.
Youre right the first few weeks after treatment are even more of a challenge but you seem to have your head round that.
Take it easy and don’t push yourself to hard.

Dani

Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

I wrote a blog about my cancer. just click on the link below

https://todaymycoffeetasteslikechristmasincostarica.com

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

beckerman 6 months ago in reply to Beesuit

Thanks Dani - I think I have done ok so far. I'm not sure I do have my head around this completely but I half know what to expect and to be honest nothing can be worse than the post surgery hospital recovery. However I think I've made it relatively unscathed going into week 6 but I have half an eye on on it going downhill from now on so any other outcome is a positive.

RadioactiveRaz 6 months ago

Hi Beckerman. great update just watch the constipation especially of pain meds get increased. Ask for laxido to help keep you regulsr I would ask tomo snd start using thrn. . Otherwise well done and yes watch out for recovery first few weeks

Hazel

Hazel aka RadioactiveRaz

My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

2 videos I’ve been involved with raising awareness of HNC and HPV cancers

https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

https://oraclehnc.org.uk/signawaycancer

CatSW9 6 months ago

Hello Beckerman, it sounds like you're doing well. I just wanted to say that I had a spell of hearing loss during treatment but it came back - I hope it will be the same for you.

Best wishes with your continuing recovery

Catriona

September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Oct 2024 nearly 2 years all clear. See my profile for longer story

Mike Rq 6 months ago

Laxido is your friend:) I used one or two a day while on opioids. (well, not the first ten days, which is why I used them after that!)

At night I still use Xylimelts. Pop one between lower teeth and gum last thing at night. Works for about 6 hours. At first I used 2/night, down to 1/night now and a sip of water if I wake up

Mike

Liesle R 6 months ago

Such a positive post... sounds like you're doing well, despite the challenges. As you say, still a tough time ahead but you're quite right, better days are coming.

beckerman 6 months ago in reply to Mike Rq

Thanks, was on ducloease which was fine but can’t swallow them now. Moved to movicol in water but that was too effective. Chemo finished but have some morphine that I’ve not started.

i guess the xylimelts don’t sting? Nurse recommended biotene products. I’ll have a look at both.

beckerman 6 months ago in reply to CatSW9

More tinnitus than hearing loss. Seems to have eased a bit. Thanks for the info, half my family are a bit deaf so would be a nightmare if I’m another…

Mike Rq 6 months ago in reply to beckerman

no, xylimelts dont sting. You can't get them on the NHS but Amazon do them.

I only needed laxatives when I was taking opioids (morphine, codeine in my case). I was recommended Laxido and used that (solution of powder in water) one a day in the morning (for me they took about 6 hours to work) or two if really needed. I did need suppositories a couple of time when I didn't take Laxido....

Mike

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