Stiff neck and pain and cramps

Chicadee16 said:

Any reassurance badly needed please!

It’s not just swallow exercises but neck ones too. I still do them all at six years. 
Fibrosis is progressive so we need to address any stiffness straightaway. I do get twinges if I lapse. 
My recipe is neck exercises, heat pad in the evening if it’s bothering me and sleeping on a neck support pillow, which I do always now. 
A few of us were discussing these pillows a while back and I know two ladies did buy them. They might pop on to say how they are doing. 

Hi yes please start him doing them again. Dani’s covered the points. Good to hear from you snd that immunotherapy is keeping the cancer at bay. Hugs Hazel xx

p s  a small amount of fibrosis but the exercises and stretches I do keep  it at bay I’ve no pain I just do movement with my neck making sure I can manage it. 
hazel x

Good Evening,

May I ask which Immunotherapy he's on?

Thinking of you both. Best wishes.

Hi Chicadee16,

I am having this same experience currently, and on about the same timeline of finishing treatment for tongue cancer as your husband (approaching two years).  I hope your husband is doing alright on immunotherapy, I'm sorry to hear that, but I am glad to hear that the immunotherapy is keeping things at bay.  

My fibrosis is seemingly the worst it has been so far, at the about the 20-month mark post-treatment. I definitely wasn't expecting this, so I can totally relate.  I concur with Dani and Hazel. They said it best.  I have to do several exercises every day just to keep it managed.  I still have pain and stiffness the next morning, every day.  I also do weight training and a lot of walking, nothing too strenuous, but I always feel better after exercising, even if the stiffness returns right away.  I'm sure the immunotherapy is draining and causing a lot of fatigue for your husband.  Sitting for too long (I am still working, and at my computer all day long), and not moving around about once an hour (even just to stretch) will cause me to have a lot of pain.  Today was one of those days, it was so busy, I didn't make the time to do what I needed.  

My physical therapists have told me that my fibrosis and lymphedema are not reversible, but, are manageable through the exercises they have taught me.  I imagine I will be doing them for many years to come.  I don't know if these conditions are reversible for others, maybe you can ask the doctors (I am in the US, so we go to the physical therapists to help us manage our side effects from treatment) if it is reversible? 

I am wishing you and your husband all the very best.  Keep fighting!! Thank you for your experiences.  I hope you have a wonderful weekend. ~Tara

I meant thank you for *sharing* your experiences.

Sending you all the best from the U.S. ~Tara

Thanks Dani...he was only given swallowing exercises...can you tell me what neck exercises you do please?

Yes, hes on Keytruda which is the generic name for it...cant spell the other name! 

Thanks Hazel...do you massage your neck also? 

Pembrolizumab. Many thanks. 

Hello Tara and thank you for your kind words.  The immunotherapy is keeping it at bay, and shrinking it, but he had some chest lymph node enlargement so he had to have 5 radiotherapy treatments which exhausted him for around two months...but did the job.  The immunotherapy makes him feel lacking in energy and also like he has flu all the time...thats the main side effects but there are more!

I will show him your reply as it helps to knows others have the same issues as him.

He also has lymphodema which has been shrunk by the collar exercises he is given...but as you say, its got to be kept at.

Thank you so much for taking the time to reply.  Much appreciated.