Throat Cancer - Radiotherapy and Clinical Trial? [Title changed by MNHQ at the request of the OP]

[Theonlyoneiknow]

Hi,

I was wondering if anyone could help me interpret my dad's discharge notes. He has a throat biopsy yesterday and this was on his notes. My mum tells me that the PET scan he had last month indicated there was cancer in his throat so I'm just trying to prepare for the news that might be coming our way.

Thanks in advance!
TOOIK

Just read your update OP. He is doing so well and is over the halfway point so the end is in sight. I remember her having the throat dryness and exhaustion too. And losing her voice and being frightened to swallow even those fortisip drinks. I just kept trying to encourage her to take little sips as often as possible. I felt so horrible even asking her because I could see how horrible it was. I remember she was given a numbing spray for her throat but I don’t know if that’s still used/recommended. Think it was that Difflam spray that is quite common now but seemed a bit cutting edge in the 80s. Is there any option of upping the strength of DFs painkillers. DM had oromorph. Not sure how much it helped but anything is worth trying . Here’s to the end of treatment bell ring and the start of a good recovery.

Thank you for your kind words and advice 🌻.

Things went a bit topsy-turvy this week and I ended up taking my dad to hospital on Saturday, and he was admitted to the Oncology ward. He'd been struggling with getting any relief from the painkillers (morphine etc) and hadn't been able to eat for a few days. His weight was constantly dropping and had gone down from 78kgs at Christmas to 58kgs now. The Dietician had pre-warned the ward that he might be coming in.

So, DD11 and I dropped him off on Saturday. He was so frail and unwell :( DD busied herself unpacking his bags and making his room nice. They were able to get some liquids into him and you could almost see the colour coming back to his face. Later that night they fitted a feeding tube up his nose (that didn't sound very pleasant and was a bit of a struggle). When I went in the next day he was taking the feed slowly through the tube and seemed in much brighter spirits.

This was short-lived as the following day he woke up with stomach pain and vomiting. They did an emergency CT scan which showed he has some unusual 'twist' in his stomach (been there since birth) which was the likely cause of him being unable to take the feed in at a normal flow rate. They have since taken the feeding tube out and are now looking at alternatives (said something about a wider feeding tube so easier to get rid of excess air, does that sound right)?)

Had he not been on the clinical trial this would have been his last week - but he has one more week to go. This time next week dad .... you'll almost be done - we can all come and ring the bell with you❤although we know there is still a rough time ahead after that, ringing the bell will be a real turning point.

Sorry I waffled on a bit! He has a lovely room on the top floor of the hospital which overlooks the city and he can see the sea, and the harbour with the ships and windfarms. I asked them if I could take him up to the rooftop garden next time as it would be nice for him to feel some fresh air on his face.

Your poor dad, what a trooper.
I presume he didn't have a feeding tube inserted through his stomach wall? Have they suggested this? This is what DH had & it made feeding much easier (once they found a feed he could tolerate, which is a whole other story).
Wishing him well for his last week of treatment & beyond.

Hi! So, there's an issue with his stomach and that twist he's had there since birth (never been an issue until now). I'm not too sure of the implications but I will go there in time for his weekly consultant review on Monday. They did two x rays today and have managed to get another tube in through his nose this evening. I really hope this one works for him, he's so frail and despondent with it all now. DD11 has been making videos for him every day, I'll take her in with me tomorrow if he's not too poorly. Week 7 next week, last week of radio. 💕

Your father is a mighty man to have lasted this long without a feeding tube, hats off to him.

When I was having radio and chemo together and yes I am still standing 😁
I rang the bell, walked outside and said very loudly to no one in particular, right time to sleep and for the healing to begin.

Obviously I was still tied to the hospital, but I had asked for a week off for time served and I slept and slept, it gave me an enormous sense of well being.

I wonder if your DD could ask if something similar is possible for him.

Thanks All :) So the last day of radiotherapy is here! After 7 long weeks. He is still in hospital but up and about. Not sure yet when he will be discharged but has a prescription now for the liquid feed, tubes etc. I know there are tough weeks ahead but what a relief to make this milestone. It was very emotional to ring the bell this morning.

What a relief he has reached the end of the course. So so gruelling . He’s done amazingly well and I’m sure having you to support him has been a massive help.

Here’s to regaining strength and weight and for a much more comfortable time ahead. Xxx

Very best wishes to your Dad and you, OP, and the rest of your great, supportive family How is your Dad feeling now? Very best to your Mum as well, as it must have been a real challenge for her too. What a great family you all are for your Dad

Hi, 🌼so my dad was discharged the day after his last radiotherapy session (Saturday). Things are still really tough for him. He's struggling with a lot of mucus in his throat, some vomiting and his neck burns are bad. It's slightly complicated in that he has moved back in with my mum (so his ex-wife) while he recuperates but that adds a layer of complexity as they separated over 30 years ago. So, whilst they care for each other there is also a lot of tolerances!

He's hoping to be able to move back to his house soon (but I'm thinking not in the short-term?) but the DIY is still being done after his boiler broke and leaked all over his ground floor so still needs plastering/carpeted done first. I'm picking him up tomorrow and we will head down to see how things are progressing.

Although we had talked about the cumulative effects of radiotherapy I don't think he fully realised how bad this next stage would also be. Ringing the end of treatment bell is such a milestone, I keep reminding him how well he has done to get through 7 weeks of radio. He loves keeping busy so being stuck indoors with my mum is quite a struggle. Onwards and upwards dad..... 💛

Well done to him (& to you all, including your mum!). One thing I will say is that DH felt worse after the end of treatment as the radiotherapy keeps on being active for some time afterwards. I would say the peak for him was about 3 weeks after. By 6 weeks he was turning a corner. Reassure him that it will get better. It's so brutal, but it is very effective.
Let us know how he gets on.

Thank you, it's good to have a rough idea of timescales 💓

My DH also felt worse for a few weeks after treatment finished.

His treatment ended at the end of October and he had a rough time for a while, but did manage to join in with Christmas and eat his Christmas dinner, so was feeling much better by then.
Once the feeding tube was removed he felt massively better - I think he felt it was a left-over stigma of the treatment. After it was removed he was so much better mentally.
Hugs to you and your dad and mum. x

My husband is in week 5 of treatment for throat and neck cancer - HPV positive. He had his second dose of chemo on Tuesday too. He has a peg feeding tube which is proving to be a life saver right now. It truly is brutal treatment but trying to keep positive. He is only 53 and always been very fit and healthy.

Hi @Whoknew76 sending love, it's so brutal. How many weeks of treatment is he having? My dad (80yrs) has recently finished 7 weeks of radiotherapy. He's too old for chemo. He's been on a clinical trial (Stage 1 Trial - it's for those too old for chemo) which meant taking medication in Week 1 and Week 4 of treatment and doing an extra week of radio, so 7 weeks vs 6 weeks. He ended up in hospital at the end of Week 5 as hadn't been able to eat/drink and now has a NG tube for feed.

I went to see my dad this afternoon. He's very tired now, sleeping a lot but still able to have some cuddles with DC.

Please keep sharing here @Whoknew76 x

I continue to appreciate everyone taking the time to message with their experiences and kind words.

How is your DH @Whoknew76, has he finished his treatment?

My dad is now into Week 5 post-radiotherapy. He is back living on his own which is making a big difference to his mental health, and he has realised how much rest and recovery he needs. He is still on the nasal feeding tube but was able to swallow some custard the other day (well, it went down his throat, he is still finding actual swallowing very painful). They have had to change the type of feed he is on as he is still losing weight (about 17kgs in total) since Christmas.

Morning @Theonlyoneiknow. Thanks for your message. I’m so glad your dad is moving in the right direction and great to hear that he is well enough to go home. My husband is 2 weeks post treatment. He has been sleeping a lot and it has been hard to keep on top of the pain at times. He has been trying to sip small amounts of water and yesterday tried a few spoonfuls of yoghurt. He is still reliant on his peg feeding tube. His lump in his neck remains at this point which is making me a little anxious. His oncologist did warn us at the start of treatment that it might not disappear and might be just dead cells inside the lymph node. Did your dad have a neck lump? There is a chance that he may still need a neck dissection after his pet scan in 3 months time. I really hope that your dad starts to carry on improving - I think the better weather will help convalescing too.

Hi @Whoknew76 great to hear that your DH has finished treatment and is at home recovering. Throat cancer is nasty, and has associated high pain :(

My dad has been reducing his morphine (he also wants to get back driving!) but I explained that I can take him anywhere he needs to go and if he's in pain then he needs the medication, which in turn will also enable him to swallow more.

Yes, my dad had a big lump - golf ball sized. He said it still feels like there is a lump there (he is still wearing bandages on his neck so I can't physically see it). He just got his check-up appointment through for 3 weeks so am hoping we will know more then.

Warm sunshine on some weary bones will certainly help - let's hope we get some soon (wishful thinking in Scotland!) Sending love to you and your DH.

@Theonlyoneiknow … just wondering how your Dad is? Has he had any follow up scans? My husband has one in 2 weeks but still has his neck lump. Oncologist thinks he will need a neck dissection. Im so worried x

Hi @Whoknew76 - I've meant to update here for ages, but DD is in last year of primary and this term has been chaotic.

My dad is doing okay. He's back living on his own and able to look after himself. He's quite well in that he is up and about, driving over to see us every day. But he is still reliant on the feeding tube. He can melt down Mars bars and swallow those, drink a small cup of tea but can't chew anything yet. His last radiotherapy was 12 weeks ago. Those few weeks afterwards were pretty grim.

His PET scan is on 1st July which we are all quite anxious about. He has a clinical trial follow-up next week. He looks so frail having lost 20kgs.

Is your husband's neck lump visible? How long ago did his treatment end? Sending love x

My DH has squamous cell carcinoma, stage 2. He had a tonsil out a couple of months ago, it was causing him pain. The test results showed that it was cancerous. He declined further surgery, but is starting six weeks of radiotherapy on the 8th of July, five days a week. He has been seen by a dentist as the therapy can affect his teeth, been warned about a myriad of side effects, and we will be seen by a speech and language therapist next week. He is 86, has various health problems, but still full of life. Can't fault the NHS, all the health professionals we have seen have been fantastic.

@Theonlyoneiknow glad that your dad is slowly returning to normal. My husband is 10 weeks post treatment. His lump is still visible which is really why I’m so worried. I keep fearing that the tumour may have spread if it hadn’t been contained. The waiting is torture. My husband is beginning to eat quite a few things now and is eating3 small meals a day but is still having 4 bottles through his peg daily too. We have never eaten ready made meals but his speech therapist suggested that they might try some as they are often softer and easier to eat. He now finds the non tomato based Waitrose ready meals good- macaroni cheese and carbonara go down easily. Also eats soups and very soften weetabix. Really hope you get positive results on the PET scan. Out consultant told us over 90% cure rate.

@Whoknew76 The waiting is awful :( It's great to hear your DH is starting to eat small meals and get his throat working again - I hope you get good news from your scan - has the lump gone down in size? Has he seen anyone since he finished treatment?

Hi @tedgran sorry to hear your DH is going through this awful treatment too. My dad is 80yrs and had 7 weeks of radiotherapy to his throat (he was on a clinical trial which meant 7 weeks of radio vs the usual 6 weeks). He was admitted to the hospital around the 5th week of treatment as wasn't able to eat anything and was very frail so spent the last two weeks of treatment in hospital. Co-incidentally my dad's treatment originated from his tonsils (part of one was left when he had them removed as a child) and it then went to his throat where he had a big golf ball sized lump. Sending well wishes for treatment, it's so tough xx

Hi, thought I would check in and see how everyone else is doing and give an update on my dad. So, he's still on the feeding tube (via the nose), which is now 4.5 months post-completion of radiotherapy. He is very slowly getting better and the most recent PET scan was clear which is great news.

He's still very thin and not putting on much weight, although staying the same and they are slowly reducing his feed quantity. He is able to drink tea and coffee and eat soup and poached eggs (mainly the yolk) so definitely baby steps but that's all okay! He's been over most days of the school holidays and been playing board games with the kids or having them over to his house to do some baking or watch a movie. It's great for both them, and him, to be able to spend this time together.

He would like to try and get rid of the feeding tube soon as it's causing discomfort now in his nose, I am not sure if they can swap the remaining feed for actual drinks, am hoping so. I will call them tomorrow and ask when his next appointment is with the dietician.

How is everyone else getting on?

Hi
Thanks for the update. I'm glad your dad is doing ok.
My DH had milk shake type high calorie drinks to help build his weight back up and they worked really well. If he found them a bit thick to swallow he watered them down with some whole milk. They were called Fortisip and came in lots of flavours.
Other things he liked, and could manage, were ready made trifles from the supermarket, crème caramel yogurty things and home made shepherds pie with lots of gravy.

@Theonlyoneiknow How is your Dad doing? Just a little update from me. My husband had a neck dissection as his lump on his neck hadn’t gone. His oncologist was a little concerned that the lump may still contain cancer. We had the pathology results after his neck dissection and no cancer was found. The best news ever that the treatment has worked and my husband is now in remission. Hope your dad is going on ok x