Dad

Hello Caztom, i wish i could offer personal advice but i never got the option for radiotherapy as my dose was used up after my first operation so i could not have anymore so they had to operate to remove my larynx . Most people i know who have had radiotherapy in this area went on to continue eating very well once everything had healed up . Im not sure how the COPD would affect the situation should he decide to go ahead , having a feeding tube fitted is a good idea as he wont have to worry about eating  while he is recovering ,i had a peg which i believe is similar to a rig which i used quite a bit . I would go back to the consulaltant and ask how your dad would cope with the treatment linked with the COPD, again i have known people to have radiotherapy aged similar age to your dad and made a good recovery .Sorryi cannot offer better or more acurateadvice , wishing you all the best especially your dad in what he decides . Take care .

                                                                Chris x

1. Thanks for replying surgery was definitely not an option and neither was chemo not fit enough .  I know from personal experience going through 6 weeks of resdoothrtsoy is hell and beyond for a good few weeks after - I supppise dad just wants to get a feel of how throes In a similar position to him feel now after treatment .  I wish you well on your own journey  take care yourself Carolimr

Hi Caztom

I'm sorry to hear about your dad bless him.

My mum is 64 and she was diagnosed with larynx cancer this September. she doesn't have any other health problems. She was a smoker and had suffered from bad chests a couple of times.

The tumour was size T4 only in one area and hadn't spread to any near by tissue. she had a multi disciplinary with the med team and they decided to go for the 6 week radiation mon- fri and 2 over night sessions of chemo, so they could try and save her voice.

Mum finished treatment yesterday.

I'm going to share the gist of what mum went through as I believe this cancer needs to raise awareness. 

For a start I am glad your dad won't be having chemo. The second blast almost killed my mum. In regards to the radiation it is very invasive and painful treatment. The side effects from the end of the first week were soreness, fatigue and secretions. It will get worse as the weeks go on. They are good with the pain relief so you can continue to eat and swallow so you don't loose your swallow. Mum still found it painful and she completely lost her appitite.  I don't know if they mentioned this to your dad but aspiration can be a side effect. It's very dangerous and it can kill. We got to about week 4 and due to radiation interfering in that area it can cause food and drink to go into the lungs causing infections. Mum caught an infection and they believed she was aspirating, so they fitted her with a nasal gastro tube and she was only allowed to sip water. She went down hill again and they made her nil by mouth, gave her a chest x-ray and it wasn't aspiration so she is allowed to sip water again. Mum Is tough and she got through the 6 weeks. 

They say she will go down hill for about  7 days now treatment is finished and then she will pick back up. My borther and I are reasearching this step and we are finding it hard to get answers. They said the throat will start to deterioate, more secreations, extreme fatigue and the pain will be at its worst. But we want to speak to peoole who have been through it. Mum has been I'm hospital for over two weeks and she is staying in this week too.  It's not nice but if it means she can have another 20 years with us then you have to fight.  

Good luck to your dad xx

Thanks for replying and im sorry to  hear about your Mum but I wish her a speedy recovery .  I have prepared my dad for the worse case scenario as I do have personal experience of caring for patients with this cancer and undergoing treatment so I know how tough it can be .  You are right about your mum she is in the most difficult period at the moment .  I tend to see patients admitted towards the latter end of treatment and after they have finished .  My biggest fear for Dad is an aspiration pneumonia or chest infection .  My trouble is I only have experience with patients during treatment and upto 6 weeks after hence why I was trying to seek out longer term affects and experiences people have had.  Like you say if you want to live you have no choice but to have the treatment  dammed if you do and dammed if you don’t .  

Could I ask oi a question you mentioned things started to get worse at the end of week 1 did she get lots of symptoms by then .  My difficulty is i aiming to take unpaid leave from work but planned to do this around week 4/5 of treatment so I could be with him at his worse and for a time after aiming to take 6 weeks off .  My brother is covering week 3-4 as the oncologist told us the first 2 weeks tend to be okay ? 

I do wish your Mum all the best and thanks for sharing your experience 

caroline 

Hi Caroline

Thank you for replying.

My mum was very drained, tired and in pain before the treatment even started. She was on cocodemol the first week & her symptoms were the pain in her throat started to get a little worse.. then by the end of week two she was on Oramorph and then week 3 mum was struggling to swallow, she was in agony.

Mum was driving herself to radiation and chemo up until week 4! She was doing amazing. The side effects up until then were soreness, very painful to swallow, secreations and fatigue, which will all get worse as the weeks go on. Mum had to use the soft balm tissues to cough up the secreations into and she would go through 2 boxes a day.

It was when mum had her second over night blast of chemo she went very down hill. It knocked sh*t out of her. It opened up a gate to all sorts of problems. Mum.had tk be admitted then and the hospital she is at were absolutely amazing. Mid week 6 the final week mum had a blood transfusion. She is doing ok before the transusion she couldn't speak to us without falling asleep.

She is still in hospital now. Still on oxygen and a feeding tube.  Mum noticed a big increase in pain every weekend during the break. By week 3 mum was on Mst. They have been increasing the dose each week. Last week being week 6 mum was on 60mg  mst twice a day and oramorph every hour.

Her neck is starting to deterioate but we have been using the cream they gave her epaderm I believe it's called and I cover her in Aveeno cream everywhere else and they have worked, I dreamed to think what it would look like if we didn't do that.

You know what, at least my mum has tried and failing this at least she has another option. She's being so strong and doing what she can to see her grandbabies grow up.

Please can you tell me what you saw people go through 6 weeks after treatment? 

It's absolutely awful. I am really thinking about you and you're dad.

Natasha x

Hi Natasha it Is really hard to say apart from the odd patient we don’t tend to see patients 6 weeks post treatment - a lot get admitted weeks 4 onwards sometimes Just for a couple of days but most of time don’t really see patients 4 weeks post treatment they are just seen in outpatients that’s why I was so interested to find out information of how recovery was post 6 weeks treatment myself as they very rarely get admitted at this point post treatment , only odd one who may not be doing so well but it is the exception.  Suppose that’s a positive thing.  In another 2-3 weeks I bet you start to see a difference in your mum .  Sounds like the chemo pushed her over edge but the side eff3cts from that should resolve it’s the radiation treatment that takes a bit longer .   Dad is so fortunate he doesn’t really have pain at minute he is tired but I put a lot of that down to his age .  He loves his food at minuute and doesn’t really struggle at all which makes me sad as I know that will go.   It is tough watching loved ones go through this but sounds like you are Giving great support .  I really do hope all the treatment has worked and this time next year this is all behind all of you . X 

take care of yourself too 

Caroline x