Post treatment therapies - survey

Purplemountain

Hi all NPC survivors!

I was treated for NPC stage 2 in 2013. Doctors did not recommend or mention of any therapy for side effects from chemo and radiation. 

Did anyone had or having any therapy post treatment besides medications?

It seems we are on our own once we rang the bell. 

Please share your experiences if you receive any therapy. 

 

Thanks.

Curlyn

I went for physio at rehab

I went for physio at rehab following very extensive neck dissection. Surgeon said use all modalities to keep my shoulder moving ( spinal accessory nerve cut). But they only gave me exercises to do on my own and said they dont often get patients like me. At any rate, they wouldnt even give me heat or tens as they said it might spread the cancer. So i do exercises at home but its hard to massage your own trapezius muscles. I couldn't swallow either following surgery but didnt have a swallow test. You have to be your own advocate.

Purplemountain

Curlyn said:

I went for physio at rehab

I went for physio at rehab following very extensive neck dissection. Surgeon said use all modalities to keep my shoulder moving ( spinal accessory nerve cut). But they only gave me exercises to do on my own and said they dont often get patients like me. At any rate, they wouldnt even give me heat or tens as they said it might spread the cancer. So i do exercises at home but its hard to massage your own trapezius muscles. I couldn't swallow either following surgery but didnt have a swallow test. You have to be your own advocate.

Sorry to hear that. It seems

Sorry to hear that. It seems there isn't much else "they" can do for us after treatment. That was a ridiculous reason for no t providing heat and modalities. 

 

No no rehab centers speacialize for head and neck cancer. Quite disappointed. 

CivilMatt

We are on our own. Watch me eat a sandwich.

PM,

I had the massage for edema and speech therapy.  Both were very helpful. I learned to do the massage  myself and  exercises for speech.  Now my neck is smooth (and wrinkly) and you can understand every word I say (if you listen closely).

Matt

Mavish

I am having Physio for my

I am having Physio for my neck. The person treating me says there is noting published for HNC treatment complications. So she is theying diffeeent methods to see whixh one works bettee for me. I have also doing excerxises. They say the excercises are the most effective. 

I also learnt lympodema self massage. My personal experience is thatvswimming is helping to soften my neck.

 

I also do Trismus excercises. They had a class in the hospital, now I am on my own. My dwntist says 3times a day, life long.

 

I was wondering if any one use any medication for RT related fibrosis.

Dtanman

P T

Hello, I am 1 1/2 years out and go to physical therpy once a week for my radical neck dissection. Things seem to be improving neck massage along with light weight training.

Purplemountain

Dtanman said:

P T

Hello, I am 1 1/2 years out and go to physical therpy once a week for my radical neck dissection. Things seem to be improving neck massage along with light weight training.

Neck therapy

it seems there is only massages and stretches for the neck. No other methods. 

 

Light weight training fng for the neck or whole body?

MemphisTn

PLUS 1

...For massage and stretching. I am only a year out but I stretch my jaw every day. The muscle pain is tough and headaches at times I believe triggered by the tension but, nothing some rubbing can’t help alleviate. It’s a new normal to get used to but it beats the alternative

Purplemountain

MemphisTn said:

PLUS 1

...For massage and stretching. I am only a year out but I stretch my jaw every day. The muscle pain is tough and headaches at times I believe triggered by the tension but, nothing some rubbing can’t help alleviate. It’s a new normal to get used to but it beats the alternative

Thank you for sharing. 

Thank you for sharing. 

Curlyn

PS. I think we are all so

PS. I think we are all so exhausted after treatment that it is difficult to give timely and useful feedback. But I have been telling team members my experience and how changes might help others. Until one goes through this you have no idea...I am now using Therabite for my jaw, .my husband massages my shoulders c a tennis ball every night before I exercise c stretches and weights. This was a useful thread c good ideas.

Purplemountain

Curlyn said:

PS. I think we are all so

PS. I think we are all so exhausted after treatment that it is difficult to give timely and useful feedback. But I have been telling team members my experience and how changes might help others. Until one goes through this you have no idea...I am now using Therabite for my jaw, .my husband massages my shoulders c a tennis ball every night before I exercise c stretches and weights. This was a useful thread c good ideas.

Thank you Curlyn

Thank you Curlyn

Klingels

therapy

My husband is receiving swallowing, physical, and occupational therapy twice a week. Therapy started about 10 weeks post treatment.