My dentist referred me to a maxillo-facial surgeon, who ordered my MRI and did the biopsy, then proposed the seriously radical surgery removing jaw/nerves etc.
When CT scan revealed primary was in lung +node, I was just handed over to the 'chest/oncology' team for palliative care.
Although the jaw tumour has 'settled' to a bearable level over the months, the inside of my lower lip is really starting to bother me.

When I originally went to the dentist in January and he did exam and took X-Rays, he said my jaw-bone (lower right) was seriously thin and exposing a nerve, which was causing the numbness on the outside and the 'men with knives'--intermittent at the time--on the inside.
When I asked what the treatment might be, (before cancer was diagnosed) he said possibly an op to sever the nerve, leaving the numbness, but getting rid of the pain.
My latest Ct in October didn't include my head and neck.
I have been coping with lip/jaw by taking prescription and OTC painkillers, plus using Oragel Max to soothe the 'knife-wielders' when necessary. I rarely look inside my mouth--seems little point, odd times when it 'feels' swollen, inspection has revealed it's not!
Today it hurts like Hell and actually looks swollen.
Anyone know if there's any point in my going back to dentist/asking for re-referral to Maxioll?--bearing in mind of course that in UK everything takes WEEKS--if not months!
Would it be worth it and could anything be done?

Or am I just 'feeling' everything more acutely because I'm desperate to get to CA next week???

Brenda

Hi Brenda-
I'm confused, do you still have a general oncologist who you would see about the lung tumors every couple of months or so? Is that someone you could ask to send you to someone to do something about the jaw pain? Just seems like there should be one person coordinating all cancer related care. Maybe that's different in the UK though.
When I aksed my doctor if they'd keep scanning my head/neck to see if the original tumor grew back they said no, becuase they wouldn't do anything to treat it anyway, unless it was SUPER bad and warranted a surgery to keep me comfortable.
It does seem worthwhile though to follow up and see if you can get your jaw as pain free as possible.
Hopefully this is just temporary, I know you are looking forward to your trip!
Melissa

Yup--just a 'general oncologist'--when I have review, (mini ones every 2 months)I just tend to say 'I'm fine' as there seems no point in saying much else, and I'm certainly not dealing with issues like horrors from radiation and stuff which most people on here are, and the nurses take care of any issues with veins/nausea/immune system/anaemia etc.
Do have a review tomorrow, so think I will mention it--though as I say, referral in Uk takes forever and still hope to do my 'trip' with the help of the painkillers!
How are you doing and how's the progress with the chemo??

Brenda

Oh, then you should definitly mention it, so it's on their mind for the future as something to keep an eye on. Or maybe they can give you better pain stuff than OTC. Now with my new diagnoses, I want to feel as good as possible so whenever I have heartburn, headaches, etc. I take something for it.

I'm doing pretty well now, although last week I was laid up for days with diarreah(sorry to be gross!). I thought I had picked up E. Coli or something terrible, I kept calling the on-call people and they thought it was the chemo. But the doctor said it is actually from the Erbitux which I'm getting every week. They are giving me this week off to make sure it goes away.
I've had 5 rounds of cisplatin which is still going pretty well, now it takes me about a week to get over the tiredness. The scans show that the tumors are still shrinking at a slow rate, so I will keep on doing this treatment until they stop shrinking or maybe if they go away I can take a break for a few months. Since the tumor type is so rare, they're not really sure what will happenn so I'm being scanned a lot. I figured after the cisplatin stops working I might have to go to a combination of drugs which will make me a lot sicker. Although after this past week though I am really thinking hard about how sick I am willing to be versus how much time that will buy me. But I'm getting ahead of myself there!
The goods news is I get Thanksgiving week off from chemo and I lost like 10 pounds last week so I will be eating a LOT at Thanksgiving dinner. LOTS of stuffing, pumpkin pie, mm!
P.S. The weather here in CA is nice today- it's in the 60's which we call "cool"
Melissa

Hi to you both. I hope you don't think I'm hi-jacking your thread, but just wanted to say hello and hope that you are both doing well.

Brenda, isn't it a pain (no pun intended) that we have to chase our tails to get the right advice/answers/treatments? It shouldn't be the case that you have to deal with unnecessary pain. My doctors are nice enough but there really is no sense of my being a priority to them, I suppose the palliative label is stamped across everything, which makes me so cross.I hope that your review today goes well and that you can get on with your trip, it sounds wonderful!
Mel, good to hear that you are still okay with the chemo although sorry to hear about the Erbitux side effects. Hey, as for the next round, shrinking is shrinking, so that's good. I too find my mind wandereing to 'what next?' but put a lid on it when I can, not always easy.
First chemo over for me now, I was unhooked yesterday, a year exactly since my first diagnosis. What an anniversary!
Take care both of you - I'll be thinking of you in the CA sunshine! Very windy and rainy here in the North West today!

Hi Georgia-
Good to hear everything went ok! It's been a year for me too, definitly a strange anniversary.
Melissa

Mel, Georgia

---I also am doing a constant mental battle of the 'how sick do I want to be to buy a bit more time.......'--but also decide I'll deal with that when it comes--oops, should have said IF it comes!

Aren't hospitals great places?? Arrived 10 mins early today for Zometa plus review--couldn't be found anywhere on the computer system! The nurses did have my nursing/treatment notes ready though.
So was there for 2 and half hours in total--10 minute review, 20 min treatment!

I got to see the Consultant's 'underling' who was very nice, explained that over 50% shrinkeage is maximum expected on my chemo regime, and gives chance for a 'good' breathing space before any new symptoms present/recur, at which point I could then start another same/different regime. Adrenal gland tumour is small enough to not be expected to give me any symptoms at all, and to manage jaw/lip pain with painkillers(prescribed) and the Oragel.

Nurses gave me printout of full blood profile, said I can resume eating all the previously 'banned' foods, and all--Consultants and Nurses, said to go ahead and have a good time in CA!!

So, all in all, feel like it's been a good day! Just feel a bit more 'secure' about travelling all that way and being/looking as healthy as I can when I see my daughter!

Thanks for replies,
Brenda

Brenda,
I may be incorrect here, but I assume your jaw tumour is on your lower right. If it has settled, but is still putting preesure on the nerve you could experience a whole variety of symptoms including, "the men with knives!"
If this is the case and I were in your position I would go talk to the doctors and let them know what is going on. Many doctors don't like to sever nerves and cause permanent numbness, but in your case it may be warranted.
E-mial me if I can help you with this.

Mike

Thanks Dr. Mike,
Yes,
Tumour is in lower right jaw.
I spoke to the consultant on Wednesday and he said that if I can manage the pain with painkillers and oragel, then to 'leave well alone'for now.
He also said that if the pain in jaw-bone worsens, they may consider radiation to ease it, but at the moment I would probably not get any benefit from it as it's manageable.
I guess I've been wary of too many painkillers in case of dependency, but have now accepted a prescription for Co-codamol--I've certainly slept better the last couple of nights!

Brenda

Brenda,
I would suggest that proper rest and self care are more important than the small risk of dependancy that taking some pain medication carry. The medication will help you function properly and reduce stress by reducing your pain. Without the medication I feel you would suffer from fatigue thus causing other problems.
I know it's not the ideal solution, but what in life is ideal.
I'm thinking about you and praying for you.

Cheers,

Mike