I have had a numb loer lip and chin for a few weeks - has anybody else experienced this. I am ud eto start chemo for the third time in mid Jan (biomarkers still going up) so wouldnt be shocked if it was bc related, bt who knows these days
Thanks
Jane
Hi Jane
Sorry to hear you’re having trouble with numbness in your lip & chin. I don’t know where your mets are, but sometimes bone mets (I have mets in my skull, ribs, spine, pelvis, hips & sacrum) can press on nerves, causing numbness – or it’s possible that you could be having some dental or jaw problems. Might be worth speaking to someone in your onc team soon, rather than waiting those few weeks until you start chemo, who could arrange a bone scan for you, if you’ve not had one recently.
Marilyn x
Hi Jane…I don’t know if this is what you’re experiencing but 2 friends I know, with bone mets, had a numbness, the chin and lower lip…it felt like they’d just had an anaesthetic for a filling…they had trouble trying to drink especially hot tea, coffee etc. Both had some radiotherapy which helped. Take Care…x
Hi,
I have had ‘numb chin syndrome’ for a few months now. I have bone, liver and meningeal layer mets. The onc thinks it is due to bone mets pressure on nerve. As I understand, it is a known effect of bc mets.
I have not found it much trouble, it feels really weird when you brush your teeth, and I bite the inside of my mouth (in exactly the same place!) every so often. I don’t find it affects eating or drinking really.
The only pain I have had was when I had the cold/flu that is now circulating. One night the whole of that side of my jaw was in agony. I think that was down to the cold, it brought on bad aching limbs all over at various times.
The onc said radiotheraoy was a possibility but as it has not caused me much grief we decided to just keep on with the Xeloda I am taking.
I hope yours clears up,
Best wishes.
Hi
Has anyone else had numb chin syndrome? I think I have it but onc thinks it’s ok to wait until I see orthodontist which I’ve booked through dentist and isn’t until 13th May. I cant wait that long its driving me mad and am now worried its not my teeth. I don’t have tooth ache. Found I need root treatment hence seeing orthodontist, but on denosumab so cant have any work done as just had injection. Dentist doesn’t know if tooth related but onc won’t investigate.
Should I phone oncology helpline again and push it? Also got tingling in right leg
Xxx
Hiya deedeepuss.
Hopefully someone will reply to you and put your mind at rest about your numb chin. I wish I could help but I’m rubbish at medical stuff.
BUT…I can send you a big hug and I will b thinking about you.
Xxxxx
Thankyou Carolyn x
Oncologist no help. Managed to get referral to a faciomaxillary person through acute oncology helpline. Chin and lip very numb and terrible pain at night
Xx
I’m glad you have an appointment to try and sort out your numbness …there is always something to have to put up with all these treatments !!
Anyway I’m as much help as a chocolate teapot really but loads of hugs xxxx
Yes, it sometimes feels never ending. Waiting for apt to drop through letterbox. Acute oncology said I should be seen within two weeks!
You’re wonderful Carolyn, nowt wrong with a chocolate teapot ?
Xxx
Hi
Still have numb lip and chin. Long story and real mix up at hospital. As I’m changing oncologist got a very blunt letter saying I was being referred back to my GPs care and no longer with the hospital trust! As I was waiting for new apt for oncologist and maxillofacial I was distressed. In same envelope came apt for new onc! Long and short after many phone calls got clinical manager of onc and she agreed wording of letter very poor and the letter has been removed from system. I’m so pleased no one else will receive it. She investigated and assured me my GP hadn’t received any correspondence as the letter I received said they had written to my GP! That really racked me off.
Saw orthadontist, he couldn’t make the call on whether numbness was tooth related as back tooth didn’t react to cold but did react to electric current! Saw maxillofacial, xrays I’d sent to oncology which the dentist sent me to send to them for a radiographer to look at hadn’t been sent on! Had full head xray. Maxillofacial couldn’t find problem with teeth or bone so said I needed a bone scan and MRI. I asked waiting time for MRI, which was 4 - 6 weeks. I nearly cried. He saw my distress. Its really getting me down now. Next day got a call to book in MRI and had it next day! After diazepam and hypnotherapy cd playing over and over (I’m claustrophobic) I had MRI.
Monday I meet new onc and get scan and blood results from a liver progression I had in Dec and changed to Letrozole in March. Should find out when bone scan is, doubt MRI will be written up as only had it Weds. Taken off denosumab for now. Numbness could be many things. My gut is its to do with bone bc, bisphosphonates, or letrozole. Maybe bone somewhere pressing on a nerve. I really don’t know. But the sooner its sorted the happier ill be.
Take care xxx
Hi Helen
Yes you’re absolutely right, NHS keep us going but sometimes if you’re not on top of things yourself you wonder how long you would actually keep going for.
Will get my questions prepared for Monday.
Have a great weekend.
Xxx
All the best for Monday and hopefully something will get sorted to help you through all this. Its horrible as far as I can see - we get the treatments but when there is side effects … no one wants to know.
Hugs xxxx
Hi
Saw my new onc Monday, she was very nice. CT liver lets stable. Only had MRI on Weds so report not written up yet. However they have asked Stoke to write up urgently and they were doing it Monday. Stoke have meeting tomorrow, so I’m going in to speak with Brain Cancer nurse Thursday. They found a tumour in my brain, but don’t know if its non cancerous, a primary, or secondary from BC. Had a good chat with nurse after onc on Monday and she showed me the scan and explained a few things. She said at the very least they would want to biopsy it. Until I have seen report Thursday and spoken with Stoke I won’t know the way forward. I’ve obviously thought about this scenario as many of us probably have, and always felt that surgery isn’t a route I would want to travel. However I need to know the facts before making an informed decision.
I had an inkling as I’ve not felt my bubbly self, and the numbness has got me down. But my partner was in complete shock. He is always in denial too which doesn’t help. It’s so hard for loved ones looking on and not being able to protect us.
They also said this may not be anything to do with the numbness! I suppose once neurology have reported it will be clearer.
Good job I was persistent otherwise I’d still be waiting for an MRI. They’re holding off on the bone scan for now.
Take care xxx
Oh deedeepuss …
Big cyber hugs for you that things arnt as bad as you think.
We all will be thinking of you and sending positive vibes for a good result.
Let us know what the results are.
Loads of love and hugs xxxxx
Deedeepuss.
If you want to private message me and vent some fears etc …I am here for you.
Xxx
Oh deedeepuss. Your instincts were right all the time…thinking of you for Thursday.love Sharon.x❤
Hiya Deedeepuss
What an awful time you have had thank goodness you have pushed for an answer with all the departments you have had to deal with no-one should have to go through that especially when you are so ill through cancer I do wish you all the best with your scan results and i hope they can finally help you
Sending you love and ((((((((((((((hugs)))))))))))))) xxx
Thankyou everyone for your support, it’s good to know you’re all just a message away.
Keeping positive, getting more questions prepared for tomorrow. Hopefully written MRI report will help me establish what I need to ask specialist when I get my apt for Stoke.
I’ll take all your positivity with you tomorrow, and let you know how I get on.
Big huge hugs to everyone, thankyou
Denise xxx
Positive vibes …???
Xxx hugs