Post treatment questions

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Hi. My husband is just finishing the end of week 3 post treatment. He is still in a lot of pain but trying to keep on top of it with regular  paracetamol, Ibuprofen and morphine. He had a zoom meeting with his manager at work today to touch base on his recovery. His oncologist has initially signed him off for 6 weeks after treatment, but suggested a part time return. We are finding that alot of friends think now that he has finished treatment he will be back to normal. He is still reliant on his feeding tube and sleeping a lot so I no fit state to return any kind of normal yet. Just wondered if others have had the same problem and how early others go back to work?

Also just wondered if there have been any studies on becoming hpv negative. My husband and I have been together over 20 years so suspect that his initial infection would have been many years ago. Obviously there is the vaccine now which is wonderful but just wondered if there have been any trials on becoming hpv negative or is it a case that it will always remain in his body?

  • His oncologist has initially signed him off for 6 weeks after treatment, but suggested a part time return.

    I suggest you contact your husband's CNS to ask his oncologist to sign him off for six months.

    That's the usual time lots of people have in mind before a phased return. There are some superheroes amongst us who are back at work earlier but few

    Also just wondered if there have been any studies on becoming hpv negative. My husband and I have been together over 20 years so suspect that his initial infection would have been many years ago. Obviously there is the vaccine now which is wonderful but just wondered if there have been any trials on becoming hpv negative or is it a case that it will always remain in his body?

    The Americans have a saliva test for HPV but I'm not sure it's available here. If you can't test for oral HPV it's difficult to see if you are negative or positive. Are you concerned for yourself or for your husband developing a new cancer?

    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 Worrylo

    Work?.... depends on age....fitness...and on the type of work your husband is returning to....for many fatigue is still present 1 year post treatment...can persist for even longer... mental and physical health will have been put through the wringer....luckily I had retired before the cancer struck but would have struggled with any kind of work for at least 6 months.

    Peter

  • Thanks Dani. I really think he will need 6 months to recover,  so good to know I’m not being unrealistic. 

    I guess I’m concerned that if he is still HPV positive it could strike again.  I have read about AHCC supplement trials. 

  • Thanks Peter. He is a sales engineer but with a lot of international travel so quite demanding. I really think it will be 6 months. 

  • I returned to work full time after 6 months. I’ve been back 2 months and I’m just starting to feel like I can cope. I would advise having a staged return, I started a new job so I couldn’t do that. The first week was really hard and I struggled. if he’s doing international travel - I would put that off for an additional 2 months after going back - at least. 

    I lost a lot of weight and felt weak. I’m still eating a lot less 8 months after treatment as swallowing is still not back 100% as saliva isn’t great yet 

    I hope he gets stronger every day, but it can be up and down, so rest lots and be patient 

    Rachel 

  • I guess I’m concerned that if he is still HPV positive it could strike again.  I have read about AHCC supplement trials. 

    There is data to support that patients suffering one oropharyngeal cancer are at a higher risk than the general population of another but significantly less so if they are HPV+

    There is no treatment for HPV. The virus is pretty good at hiding from any drug and more importantly the immune system in the cells it infects. 

    AHHC, like any other antioxidan,  operates by modulating the immune system to promote optimal functioning. I wouldn't waste your money. It may help prevent further inection but it won't treat an existing infection. It's like any other quackery. Anything that purports to clear HPV is a lie.

    The best thing you can do for your husband is to make sure he eats well, gets exercise to keep fit, doesn't smoke and drinks moderately. 

    Ensure he attends all his reviews, reports anything untoward straightaway and does everything his team tell him to do to get well 

    It's not easy. I had my last review yesterday. My oncologist is very pleased with the way I have healed and put it down to doing what I was told....... He said lots of people don't 

    I know it's useless to say not to worry because I did but I tried very hard to make sure the last five years weren't wasted in worrying about what I couldn't control. It would have been such a terrible waste.

    Give him a hug from me. It's early days. He will get better and stay that way. Most of us do

    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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  • Ah thanks Dani. Congratulations on your 5 year milestone and thank you so much for  giving up so much of your time to advise us all. My husband doesn’t smoke , rarely drinks and was very physically fit before diagnosis so hopefully this will stand him in good stead. 

  • Thanks Rachel. So glad to hear that your are getting better and that you are now back at work. I think 6 months sounds like the norm for a lot of people. I’m 

  • Hi the only words of wisdom I can pass on us I don’t worry over things I can’t control. It never enters my head that I may or may not have HPV in me. If I have can I do a thing about it nope. I don’t drink don’t smoke and today over in Spain our last day have passed the 1100 km mark on my bike.  So for a 67 year old I’m not in bad shape. I still haven’t had alcohol not that I did before   I’ve tried odd sip of hubby’s vinegar ( wine ) 

    As I say one life just live it the worrying won’t change a thing. 
    hugs 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  

  • Good evening Worrylo, i often wonder where some consultants/ oncologist  get thier imformation from as 6 weeks is not an adequate time for him to return to work, i know we all recover at different rates and have different side effects but i would say 6 months after chemo/radio is a safer bet and even longer if surgery was involved. I used to work in a shipyard building/repairing ships and boats and only went back part time after 6 months doing light duties. I dont know about HPV  but i wish your husband all the best in his continued recovery, tell him to take it easy and let his body recover. Take care.

                                                                                                Chris x

    Its sometimes not easy but its worth it ! 

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