Hi All,

Im Graham, 36 year old. I was diagnoised with Nasalpharynx in March of this year, following a routine op to have a grommett fitted. We all now the shock at being told you have cancer so I wont go there.

I Started treatment at the end of April and finished begining of June. My treatment consisted of 6 weeks of radio therapy and 3 doses of chemo. Had all the horrid side effects, but thank fully am getting over them now. My biggest problem is the dry mouth. Does anyone have any advise? Im using biotene saliva replacement Gel. it is helping, im drinking less water so only making 3 trips a night to the loo instead of 10!!!

I returned to work mid August, have found that a great help. Im not a work a hollic, far form it! But after spending months as a morphine zombie hardly moving my body, I have found getting back to work and being as normal as possible helped mazing. just pushing myself to et up to physically walk and move around etc its helped my fitnessed and feeling of tiredness.

Ive had 3 follow up checks so far. Nothing has shown up and no news form last months PET scan, so i guess im doing ok. I find the anxiety of the check ups hard. I tend to forget all about cancer and get on with life, then a letter from the hospital arrrives for my next 6 week check! Days leading up to it im very much up and down. Does anyone have any tips on this?

Well thats my storey, well cancer storey anyway. I am also a father of a wonderful 14 month old boy whose the biggest joy of my life, im am an engineer and live with a wonderful supportive girlfirend.


I would be happy to hear form anyone who has had Nasalpharynx to either give support or hear advice.

Bye for now

Graham

Hi Graham

In answer to your question regarding your dry mouth as a result of treatment - I find chewing gum really helps to stimulate saliva. I found it used to burn and break up in my mouth at first, but six months on from end of my r/t treatment I can now tolerate it. I still have to have a bottle of water handy though!

I can’t give you any advice on your particular cancer as mine was to the tongue, but I’m sure you will soon have other responses.

I sympathise with you about feeling apprehensive before each check up, I had my monthly hospital appointment this morning and felt exactly the same. I don’t know if that feeling will ever subside, but on the other hand I find it reassuring to be regularly monitored.

Best wishes
Wendy

Hi Graham,

Good to hear from you. I had cancer of the throat and underwent 35 sessions of radiotherapy - my saliva glands got zapped as well. I have a permanent dry mouth and always carry sprays, gels, chewing gum, boiled sweets and water.

Right now yoghurts, muller rice and fruit pots with syrup really help to moisten my mouth. I use Mouth Kote moisturizer (parnell) which is quite good and biotene and bioextra. I also saw that Boots are doing their own dry mouth spray now - not sure if it's good for us but it moistens the mouth and is a lot cheaper. The Xerotin being tested by site members is OK as well. I tend to use different stuff through the weeks so that I am not always stuck on the same one. As you know we try and adapt to different situations. First time I tried to cut the grass took six bottles of water. Then I stuck a lollipop in my mouth and cut the grass in one go without stopping. Vaseline on the lips helps as well.

I admire you for getting back to work, well done. The checkups are a bit like an emotional roller coaster. After the treatment I struggled emotionally plus I lost my parents. You go in for the check up shaking in your boots and with some luck you come out all smiles and very relieved. Then slowly in the back of your head we start counting the days and weeks to the next check up. The week before the check up I get nervous, stressed, anxious and very worried.

I have found some acceptance though and it makes things easier to cope with by going with the flow and letting it be. Still run out of the hospital with a big smile on my face though when its good news.

Hope a fellow Nasal-pharynx guy responses soon. All the best.

Ken

Thanks for the replys Wnedy&Ken

I think your right about acceptance and just getting on with it. I have been tols I will have 6 weekly checks for the first 2 years, then 3 monthly for following 3 years.

I think I need to concentrate on the reassuing aspect that they are monitoring so closely

Funnily i started chewing gum last week, it does tatse odd at first, some times the mint can be really strong for 10 mins or so then settles down,

Regarding the boots spray, My oncologist was happy for me to use it. she didnt think that there was that much in it that would really help (probably why its cheap!) I also bot a bottle of yeastol (had oral thrush a lot) she recommended that I did not use it, mainly because it containcs cyanide and candida 9oral thrush!)

Thankfully as cancer patients in the UK, we get free perscriptions so my GP stocks me up with Biotene Gel every few weeks, but will check out the other ones as well

Thanks a lot

Graham

Hi Graham, I had SCC in my sinus and 42 RT's. Dry mouth is still a bit of a problem but after all this time I think it's a small price to pay. Saying that, I am a fair way down the line now so well 'over it'. All the best, Hagg.

Hello Graham,
I finished treatment for nasopharyngeal carcinoma early three years ago - my treatment was 6&half weeks radiotherapy and 6 cycles of chemo so i know just how you feel.
You've done ever so well to get back on your feet!

As far as the dry mouth - mine personaly is too dry to chew gum but it does help others. I drink plenty of water with my food which means i can now eat everything! You do get used to it further dow the line.I can't even remember what it was like before! It's amazing how the body adjusts!
The only time it bothers me is when i have a cold and sleep with my mouth open. Bleurgh!

I'd really reccomed NeilMed synus rinses. They're great for moistening the area back there and flushing away the nasties lol

The further you get away from treatmet the less anxious you will feel about looming check ups, i can assure you! However, i still get butterflys the day before!

Welcome to the forum, keep doing what your doing!
Feel free to P.M. me if i can help.
All the best!
Michelle

Hi Graham,

You reminded me of the "dreaded Trush". Please try an Actimel in the morning this really helped keep it at bay, I think it's thanks to Chelle for that great advise. Sadly memory not getting any better!

Please see below more information from the Treatments section of the site by Dr Joshi
( I used Loramyc and it really helped stop the thrush):



Chemotherapy and radiotherapy for the treatment of cancer often cause an irritation of the mucosa (namely the mouth and digestive tract) called mucositis. Among other factors, oral mucositis can in turn facilitate or aggravate infections with yeasts that normally are well controlled by our immune system. These infections are called candidiasis and can be very detrimental to patients’ quality of life and treatment conduct. It is also very important to prevent the infection from disseminating to the rest of the body.

I have been informed of the availability of a new treatment for candidiasis (thrush) specifically designed for head and neck cancer patients. See below:
quote:

Loramyc® is a new treatment with a an innovative delivery system, indicated for treatment of oral thrush (oropharyngeal candidiasis, or OPC) in immunocompromised patients, especially people undergoing chemotherapy and/or radiotherapy.

Loramyc® is a local treatment, in the form of a tasteless tablet that sticks to the upper gum, applied once a day. It is effective enough to treat OPC, while avoiding the increased burden of more pills to swallow and potential side effects to bear with or the several times a day use of a mouthwash. Loramyc® has to be applied after brushing the teeth. It can be administered with food and drinks.

Loramyc® therefore meets the need for a potent, targeted treatment of this localised fungal infection thanks to its innovative muco-adhesive tablet formulation.

Loramyc® was developed by a French speciality pharmaceutical company, BioAlliance Pharma, It is now available in the UK since May 2008 and distributed in Europe by SpeBio, a joint venture of SpePharm and BioAlliance Pharma.

Spepharm UK Ltd.
8A New Yatt Road
Witney
Oxfordshire
OX28 1NZ
www.spepharm.com

Bioalliance Pharma
49, Bd du General Martial Valin
FR 75015 Paris
http://www.bioalliancepharma.com


There have been several discussions about problems with thrush so Loramyc might be a great help but it would be good to hear of members experience with it and if it works for them.

Good luck

Ken

Yep Kenny, that's right!
I still have my Actimel each morning... i know about it if i miss a couple of days!

Thanks al for the advise, well do some reasearch on them all.....might take a while :-)