Jaw pain shock!

Hello Suet and welcome. I had this as well on the same chemo as you and I didn't find anything to ease it. It just happened sometimes on the first bite or gulp of something. I think it is fairly common and I am surprised that the person you spoke to hadn't heard of it. A quick google shows it happens fairly frequently. Sorry I haven't got anything more cheerful to say. Good luck for the rest of your chemo.

Hi Sue

Sorry you experienced this. This is a relatively common side effect of Oxilaplatin, called 'first bite syndrome'. Please don't be alarmed. Talk to your chemo nurse or give Macmillan Helpline a call and ask to talk to one of the nurses.

Oxilaplatin does come with a number of odd side effects, such as causing electric shock like twinge when you touch the fridge without gloves on.

Do watch out for loss of sensation in your hands and feet which does not resolve between chemo cycles as this is a sign of peripheral neuropathy which is potentially serious if not addressed.

Please keep visiting the board and asking questions as the folks here have been very supportive since my diagnosis in March last year.

Mike

First but syndrome. I hate it!! Mine has got better as my treatment has progressed. Ive strangely found that chewing chewing gum durung my infusion seems to mean I get less pain afterwards. Might be a coincidence, but worth a try!

Thank you Mike. Had three replies after my first panic post and strangley I am feeling more relaxed already.  Pain did not go away at breakfast though but now know I am not alone.

• Thanks Jherb. Worth trying anything that helps is welcome.

Good news! Checked out an American website Colon Cares and one of the contributors had the same problem. First bite syndrome. Suggested trying the following,

Sip a small amount of water.

Sip a small amount of Apple Juice then swig around the mouth.

Then take a tiny amount of food, the size of a piece of sweetcorn for instance. Do this twice.

Guess what NO PAIN!!!

Treid this successfully for my last two meals.

It is an issue with the nerve that activates the saliva.

1. Please try it should save you a good deal of pain. Still do not know why it is such a mystery in the UK.

Hi

I didn't reply to your original post as the other guys had covered it off so well.

It is quite a common side effect and the advice I read on the Beating Bowel Cancer site was to take a small bite first (although I never used to remember!) and massage the area. It makes sense what you say about the saliva glands as it used to feel to be just where your juices are when you eat something sour!

Have you had any cold touch symptoms? I bought a cheap pair of stretchy gloves with little knobbly bits on the palms for grip- forgot to put them on one day when I got the jam out of the fridge and felt like I'd been electrocuted!

Hope the chemo goes well - remember to keep your hands and feet well moisturised and tell the nurses about any problems you have - don't struggle on as there is help for most things.

Take care

Karen x

Hi Karen

Just finished my second infusion and although the pain in the jaw is still there the apple juice trick certainly helps. After first meeting with the oncologist I am feeling more in control although I appreciate that can change. Thanks for the tips re hands, feet and cold. It has helped me a lot. One warning to everyone out there. During my treatment yesterday two patients were rushed back in with throat and breathing issues because they did not cover their necks when they left the hospital. Make sure you take warm clothing and a scarf in these situations as you are at great risk even if you feel you feel it will not happen to you. Be warned it did not look fun for those two patients involved!

Sue

So glad to find this thread. I had my first day, first cycle yesterday and have this exact problem.

I will try the tip, although no apple juice to hand and I haven’t tried a cold drink yet.

I did try a very small amount of food but it was just as painful.

I really have the cold finger thing, is it related to the infusion or the tablets, do you know?

Hi Jopeg.

The 'cold thing' is due to the Oxilaplatin.  There's a brilliant thread on tips to help with some chemotherapy side effects here: https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/bowel-colon-rectum-cancer-forum/221768/chemo-care-top-tips--/1598153#1598153

Take Care

Net77