Post chemotherapy fatigue

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My husband has a Adenocarcinoma extending into stomach T3 N1 diagnosis and completed 6 cycles of Capox chemotherapy last treatment 7th April and capecitabine tablets finished on 28th April. He will continue with Pembrolizumab immunotherapy every 6 wks. The main issue causing so much stress is severe fatigue of which he is convinced is permanent. He has a scan mid May to see if tumour has shrunk; scan in February showed no shrinkage but thankfully not spread. The Consultants prognosis in his words is to "keep a lid on it" only a small chance of removal. The original prognosis last August was curative path but FLOT & contracting sepsis through the pic line altered that after one treatment in September.

He is tube fed via  JEJ which at least is maintaining his weight after losing 2.5 stone. He also has a stent fitted which helps with swallowing but says everything tastes vile so not eating anything. Excess saliva is another issue. 

Sorry to ramble on but wondered if anyone can share similar experience and advise if the immunotherapy has helped? I know every patient can react differently but can't get any advise from hospital oncology triage, their attitude appears to be shut up and put up with chemo side effects.

I guess it's just a waiting game but my husband is not in a good place mentally but unfortunately not the type to accept counselling.

 

  • Hello  

    I am Brian, one of the Community Champions here on the Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying it will be "bumped up" to the top of the page and I hope seen and answered by other members of the oesophageal group.

    I wish you and your husband well going forward and hope his condition improves.

    Best wishes - Brian.

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  • Hi  

    I haven’t had experience of Capox or Cape but I do have experience of pembrolizumab. Unfortunately fatigue from chemo can build during treatment and does take a little while to settle down. Most forms of chemo affect red blood cells as well as white cells and it’s not until all of those that were ‘born’ during chemo have been replaced that he will have full oxygen carrying capacity back. It’s not likely to be permanent. Hopefully his sense of taste will return similarly. 

    Whilst chemo side effects follow a typical pattern, immunotherapy is different. Most of the time there.are few side effects but issues can build up suddenly and seriously. If there is any sudden change it’s important to contact the 24 hour helpline. 

    I am not sure when your husband first started pembro but it is usual to go through 2 scan cycles to decide whether it’s working. The first one can sometimes show something they call pseudo-progression, where the immune system activity makes the tumour look bigger, but it’s because it’s being infiltrated by TCells. 

    I hope the treatment works for him. It did for me. 

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  • Thank you for your feedback. Wishing you continued good health.

  • also you should have a dietician allocated to you which can prescribe free of charge, soups, which i find more palatable 250 calories, pre made milk shakes, and powdered shakes, so please reach out and ask for this

    all the best

  • Thanks for feedback Jules. My husband has been eating ice cream & chocolate buttons but even they now taste horrible. We do have a dietician mainly monitoring the tube feed. He can't stand the drinks/food available on prescription he would rather stick pins in his eyes LOL! He's very stubborn but guess he knows what he likes & what he doesn't. Hoping his taste buds improve soon.

    Wish you all the best

    Den

  • I really struggled with the nutrient drinks far too rich and sickly for me and i had to stop taking them.