Dad Stage 2-but seems worse

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Hi, I’m not sure where to start. I’ve never reached out to a forum before, I’m not even on Facebook!

Dad - 71 yrs was diagnosed stage 2 at the end of Feb & started chemo last Friday.  He had a stent put in in March as he could no longer swallow but this has made him worse.

Dad can’t have an esophagectomy as he wouldn’t survive, lung capacity is at 50% (due to COPD) nor radiotherapy (due to lungs & heart again wouldn’t survive) we’ve been told he’s terminal & chemo should shrink it & suggested that he has around 18 mths.

Anyway, as I said he is only stage 2 but seems terrible, the stent is agony, he’s still not eating, lying on his back means he can’t sleep, he’s in constant agony.

Chemo is causing peripheral neuropathy, sickness, & a low temp & the weight is dropping off him.

my question, we know that it’s not an aggressive cancer, (although this has got to stage 2 in under a year as he suffered from Barrett’s Oesophagus & underwent regular Halo treatments)is he’s just stage 2, he’s complaining and adamant it is in his bones (no evidence on PET scan) but he just seems to be fading away & we expected him to feel il but better than this, as he’s not in the final stages so to speak.

has anyone else been early on with this cancer & not improved at all even with chemo. & how quickly can it take them, (I understand it can be to do with mind set, but he does seem to be be trying & he’s had pinned our hopes on improvement rather than worsening).

Any response is more than welcome thanks for reading.

  • Very sorry to read this devastating news that you have received and your dad’s poor prognosis. I can’t answer all your questions but I can say that, having struggled to swallow food, this greatly improved even after my first chemo session on 13th December and I was actually able to enjoy a proper Christmas dinner (albeit with plenty of gravy). Perhaps, now that your dad has started his chemo, he will have a similar positive response after a few cycles and possibly be able to have the stent removed. My tumour was Stage 3 at the junction of oesophagus and stomach. My thoughts are with you both. 

  • Hi McDaughter,

    I was diagnosed last year with oc and have been treated with chemo, op and more chemo.  I am now cancer free but have trouble with eating. 

    I cannot help with your questions as I wasn't in that situation.

    I did want you to know however,  that there are people out here reading your posts and sympathising with your situation. 

    I was 23.5 stone at diagnoses and am now stay at 15 stone.  I feel better for it and happy to have lost it.  But I had it to lose. 

    The side effects of chemo aren't great and affect some more severely than others. Just rest as much as you need to and take all the pills and injections they give you.  Anti sickness, anti diarrhea, steroids and all the others. 

    Good luck to your dad and yourself. 

    Best regards

    Geo

  • Hi

    I'm sorry that your dad is so unwell. I was stage 2, I had chemo and radiotherapy together, no operation. My tumour had blocked my oesophagus completely, so I had a stomach feeding tube fitted and syringed Fortisip, water and all medications through that. The first chemo shrank the tumour a bit and I was able to nibble on cheesy biscuits. The chemo had nasty side effects and I was very poorly. 

    I hope your dad sees some improvement as the chemo progresses. 

    Take care,

    Amanda 

  • Thank you for this, it has really helped.

    From my family to yours, may you keep healthy & all the best for you.

    Thanks again  

  • Thank you so much for your reply, my dad also has it to lose, but it’s hard to see him go from cuddly to frail within 14 weeks.

    From my family to you & yours, hope you continue to keep healthy & we really do appreciate it.

    thanks again 

  • Thank you for your reply, that was exactly the same as dad & that was why he went down the stent path but I know he regrets that due to his pain & discomfort.

    I hope your tumour has shrunk more.

    Thank you for your reply we really appreciate it.  From my family to you & yours, hope you keep healthy & winning.

    thanks again

  • Hi

    Just a thought, is your dad having filgrastim injections after chemo? A side effect is bone pain. Could that explain why he feels it's in his bones?

    I had 4 rounds of cisplatin chemo by IV and also capecitabine chemo tablets twice a day for 12 weeks. I was very weak and poorly. So tired. It's hard mentally knowing that the chemo 'poison' is going to make you feel worse in order to feel better. (I also had 25 radiotherapy at the same time as the chemo which was very tiring). That was in 2021, I'm 2.5 years clear. 

    Take care,

    Amanda 

  • Hi

    My husband also had a stent inserted: beforehand, no pain; afterwards, bad pain needing paracetamol plus morphine. When eventually after 3 weeks he was re-admitted to hospital and scanned, they discovered the stent had 'migrated' (slipped) and was half-way into the stomach where it had caused ulceration. Stent removed, no pain. Perhaps something similar has happened with your father and the stent can be reoved to give some respite?

    Also, swallowing wasn't improved - he won't swallow food as it tastes awful. 

  • Hi McDaughter

    Firstly I'm so sorry to hear that your dad is in pain and finding it difficult to sleep and eat.

    I am undergoing treatment for oesophagal cancer and have had chemo and op and now more chemo.

    I will say that the chemo is very hard for everyone with many side effects. I too have experienced neuropathy, nausea, extreme fatigue and weight loss. They can alter the strength of the chemo to help reduce these side effects so talk to your specialist team and they might be able to make your dad more comfortable as he fights this horrible disease.

    It's not easy for anyone including those around the person that has cancer. I wish you and your dad the very best. I'm always on here if you need someone to talk to and if course the experts are on here as well they will do their best to help you.

    Best wishes 

    Dean

  • Hi ..Firstly I’m so sorry your Dad is having to go through this ..It must be very difficult for all the family .

    My husband was diagnosed with Stage 2 OC in August ‘22 ..He had been suffering symptoms since Feb 22 ..His tumour caused a complete blockage between his oesophagus and stomach .By the time he had his NG feeding line in June 22 he had lost over three stone in weight and was very poorly indeed ..In July of the same year he had a JEJ feeding line fitted into his duodenum whilst having a laparoscopy to stage his OC .. .All his nutrition..fluids and meds were put through the JEJ line ..It was a Godsend at the time as it helped him to regain some strength to go through the chemo and surgery.After his first pre  surgery chemo he found he could eat soup and soft foods so we took this as a sign that the tumour was shrinking and his ability to eat improved with each  chemo cycle .The JEJ remained in situ for twelve months in total and was only removed when treatment was over and his dietitian was happy he was gaining weight albeit slowly .I have to add my husband couldn’t afford to lose the weight as he has always been slim.

    I have noticed on this forum that people can have a similar staging but receive different treatment and surgery ..There must be a medical reason why ? I do understand though that if other medical conditions exist it’s not always possible to follow the medical pathway and it’s adapted to each individual case.

    What your Dad needs now is nutrition and pain relief asap .. I would suggest contacting your Dad’s specialist nurse and his  Oncologist  to discuss everything that is happening at the moment and your concerns .

    Sincerely hoping matters improve for you all very soon 

    regards J