Looking for advice please to put hubby at ease

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Hi everyone

So hubby has had treatment and is 8 weeks post treatment for stage 3 tonsil, base of tongue and   lymph nodes either side 

So it seems hes going backwards again and still losing weight and finding it very hard to eat.  Nad nasal feeding tube removed but looks like might be going back on it. 

Been to hospital today, hes been trying to tell them for about 4 weeks he has swelling and lumps in cheeks but kept being told too early for anything to go wrong and to wait for pet scan july.

Been told today looks like lymph nodes and nox seeing a consultant wednesday.

Has abyone experienced this or similar and if so what was out come. 

Thankyou x

  • Hi Cazza2190

    I can't really answer on the swelling aside from I am 13 weeks and my tongue  and right jaw "hinge" is still swollen.  Feels worse than before but I suspect that is because other bits around it are healing faster.

    As to feeding I do think it comes and goes.  I have a PEG and used it entirely for 3 weeks post treatment and only stopped the majority meds and hydration through it a couple of weeks ago as my swallow improved.  Although I can eat reasonably well I still need up to 4 fortisips and day to maintain weight.  I think the body continues to burn calories long after we think it should be back to normal in order to heal itself from the trauma we have been through.

    Peter
    See my profile for more details of my convoluted journey
  • swelling and lumps in cheeks

    I had exactly that on one side. My face swelled up like half a hamster. It was a blocked parotid duct. Ibuprofen and antibiotics sorted it. 
    I can’t quite make out how you have lymph nodes in your cheeks. Who said they are likely lymph nodes? 

    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

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  • Hi dani

    Thanks for the message it was the cancer nurse and speech and language guy.  Hes going v to see consultant wednesday.   Im hoping  its a blocked duct too xx

  • Hi peter

    Im glad to hear ur healing xx

    Hubby had nasal tube as tpf chemo cause stomach issues.  But been a nightmare using it all the supplement drinks have been making him ill so they have given him like a yogurt to try till next week.   He also had all teeth out for treatment which hasnt helped at all.     I think recovery is worse than treatment xx

  • Hi I had ng tube with a pump so my feeds were in one litre bags instead of syringe s which I tolerated quite well some feec during the night with pump . I chose tk feed during day with a rucsack provided so I could potted around. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • I would agree about recovery.  Treatment is brutal, recovery is torture!

    Peter
    See my profile for more details of my convoluted journey
  • Yes he had the pump 10hrs a day but he just couldnt tolerate the supplement.   I even put it through by hand.  X.  Been given yogurts now to try and shots x

  • It sure is - no one tells u about recovery and got to wait 4 months for petscan x

  • Hi I waited 18 weeks that’s to try and ensure the radiation has stopped working snd no false hot spots will show  up. I was told in day 1 of meeting oncologist that. If they scan too early with at pet ct scsn it may need doing again. Read this it may help. 
    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    written by a consultant at my cancer centre it helped me. 

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • to wait 4 months for petscan x

    Any earlier and the damage done by the radiotherapy will interfere with the scan. Lots of oncologists would prefer to do post treatment scans at six months. I had one at 16 weeks and even then I had residual activity and needed a biopsy six weeks later. 

    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

    Community Champion badge