Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[Joolz]

Hi Andrew,

So sorry to hear about your re occurrence of cancer......that’s not the news anyone wants to hear.
My husband was the one with tonsil cancer, diagnosed the same time as you last August 2019. Boy was that a shock, doesn’t drink or smoke but it was the HPV type. They were unable to operate due to the location of the tumours. Left tonsil and 4 lymph nodes. One was pressing on the jugular vein. So only option was  to have radiotherapy and chemo. 
It’s a rough road that’s for sure, I joined this forum in the middle of his treatment to help me better understand what he was going through. He wouldn’t join himself but I wish he would. He would not feel so alone. He ended up having a peg put in which I would recommend If you do need it. Without it he wouldn’t be here as he was totally unable to tolerate any food and only some liquids from 3 weeks into treatment. He lost 20 kilos still and wasn’t a big bloke to start with. His PET scan was all clear. So fingers crossed so far so good.
Hope you have a good outcome. You will find lots of support from others here. 

[April-Showers]

Hi Andrew,

Sorry to hear about your reoccurence, not what you want to hear.  Please let us know how you are getting on hopefully you will start your treatment soon and get it over and done with.  It is a difficult road but there are lots of people on here that have travelled the same road and got through.  I'm over three years out now and life of course has never quite been the same but I got through and recovered.

Take care best regards.

[Alan22]

Andrew,

sorry to hear of your diagnosis and recurrence. Mine was also left tonsil ( And HPV+). Had radical neck dissection and radiation. This was 2010.  I am in the Cancer Connect program if you would like to discuss further. 

cheers, Alan Pottie 

[Joolz]

Hi Alan,

thanks for  your comment. It’s nice to hear you are 10 years post treatment. Wow that gives me some hope, as there is that thought in the back of your mind always of reoccurrence. Brian isn’t coping at times with the effects  of treatment, extreme fatigue, pins and needles in his feet, he has yet to regain any weight. He also had bad anxiety and depression which has improved with medication. It has definitely changed him, he’s still adjusting to his new normal. Wishing you continued good health. 
Julie Aldridge 

[Alan22]

Hi Julie,
Yes, Brian knowing there are longer term survivors out there Will definitely help. Hope is definitely a good medicine for mental health.
If he is up for it, encourage him to call Cancer Connect and talk with another Survivor of similar Cancer type and treatment. It is usually a very cathartic process sharing with someone who has been there, done that, bought the T-shirt! It is a confidential one on one peer support program. My taste has mostly recovered such that I enjoy food again, however, don’t think I will make it as a good or wine judge...sigh. 🙂

[Jaffa44]

Hi Andrew

sorry to hear your cancer has returned. My husband was diagnosed last year with cancer of the left tonsil which had spread to one lymph node. (Also P16 pos) The left tonsil was removed and whilst all surrounding biopsies were clear, he received radiotherapy x 30 and 2 x chemotherapy.

He is now a year after finish of treatment and so far so good.  

I hope for you too that the radio/chemotherapy will see off your cancer.  As I’m sure you know the P16 Positive cancers has a better prognosis than other head and neck cancers.  Let us know how you get on and all the best for  a positive outcome.

[Garth]

I still have it after 6 months

[MyheroCoolSpy]

I still have it but I ma gradually decreasing teh dosage now 

[Andz]

Treatment Week 3 Completed

Plan: Work until early afternoon and then have the treatment at 3pm.

Treatment: Radiation - Mon - Fri

Feeling:  Week 3 was a none Chemo week so I felt good. I’ve started to get small ulcers in my mouth cavity. Taking soluble Panadol every 6 hours.

Exercise:  Running 5 km x 4 times a week

Eating:  Trying to eat normal and convince my taste buds its delicious.  Spicy rice dishes, strawberry jam on toast,  yoghurt, custard and rice pudding.

Sweets: Lifesavers, Soothers (Butter Menthol and Eucalyptus Menthol).

Mouth Rinse: Salt water, Oral 7 and 3-4 litres a day water.

Cream: Aloe Vera lotion

[Mozz]

[Feeling:  Week 3 was a none Chemo week so I felt good. I’ve started to get small ulcers in my mouth cavity. Taking soluble Panadol every 6 hours.]

Hi Andz, You seem to be in good spirits and that's a good thing. I don't think Panadol will cut it for much longer. You may need Fentanyl patches and Endone tablets for the pain.

[Eating:  Trying to eat normal and convince my taste buds its delicious.  Spicy rice dishes, strawberry jam on toast,  yoghurt, custard and rice pudding.]

Good to see you still eat. That may well change as the Mucositis gets worse. You might need a Naso gastric tube and have to inject protien drinks down the tube as eating will probably become to painful.

[Mouth Rinse: Salt water, Oral 7 and 3-4 litres a day water.]

Oncology department should give you bottle of mouth wash as well as Mucosoothe mouth wash to numb the pain. it's kind of like Magic Mouthwash, a thick pink gel.

Wishing you all the best.

Maurie