Breast Cancer Now Forum

Long time since an update from me - I seem to be mirroring Caron tho which makes me sad someone else is going thru what I am. I'll start with a new bit of text then for my eye sake will just copy in a bit of an email I send non cancereous frinds a but earlier so if this seems disjointed it is!! About early May while inAlgarve I noticed long term nerve jangling in left side of fcae was getting worse and I couldn't see clearly in eye. Back to Uk Saturday, Tues at hosp for chemo check, blind in eye. Told to see optician which did - emergency referral to eye hopspital nex day. Eye man convinced new lesion in jaw bone where al 3 main facial nerves go thru, all wait CT scan. Ct scan supposedly OK so next request (10 days later - grr!) for MRI scan. This done in hurry last Monday. Well, it’s never been said that I do anything in a conventional way. For most people with initial breast secondary bone cancer the path then is liver brain or lung secondary tumours, with them being treatable for a while and then either declaring themselves resistant or further tumours elsewhere developing requiring attention. For me it seems nothing will be normal. I am now blind in one eye, with that side of the face distorted as tho from a stroke, eating and speaking is hard without feeling there and a numb chin. About 4 days back the upper right eye socket went numb and is gradually creeping around with its non sensation. I had an MRI scan on my head on Monday to follow up the good results of my head CT scan earlier, and being a cynical moo I was concerned when they got the results but wouldn’t give them to me same day. All 3 oncs wanted to review them together on Tuesday. On Tuesday after review they wanted to take them to multi disciplinary team for further further review – see you in Clinic on Friday. Friday news is CT and MRI scans clear – Hoorah? Er No. This mean you have no actual tumours we can identify or treat, our most likely guess is cancer cells are in your meningeal fluid surrounding your brain and causing chaos with your nerves etc. Due to ridiculous speed of left side deterioration, I pushed a bit that they bring forward the whole head radio therapy they were proposing for 3 weeks time just a tad, so if there was a chance of saving anything on the right side I could, and consequently I had my measure up, 2 new tattoos and first session of 4 rads on Friday. The hope is – no guarantees and not much evidence – just hope – that this delays at least progression from fluid into nerves and temporarily halts more damage. It’s a one off treatment – no second tries so we have to hope it works. Next in the onc’s shopping cart for me is a different version of the 2 nd chemo I had during my primary treatment – it is a bit of a b*gger to tolerate, but this permutation apparently easier. I’ve said I’ll try it but I’m not going to kill myself with a chemo if I can’t take it – watch this space – it won’t be for about 3 weeks to give me chance to recover from rads - to go with them I get nice big doses of steroids to maleate the immediate side effects of the rads but gives me more to recover from. Prognosis – not good. There is a form DS1500 used to fast track disability claims for people with likely less than 6 months to live – she offered to sign one of them. So it could be LT 6 months, which doesn’t mean it won’t be more, but it’s pretty unlikely to be double decades. Sorry if this is blunt – I kinda hoped you’d have got the picture from the preceding. Sometimes it’s impossible to package things prettily. Don’t know how many times I’ve said this but I’ve never meant it more – I am for once tongue tied so have absolutely no expectations of anyone else being otherwise. A few thoughts of us at the gates of hell might be appreciated and anyone who cares to join Jules in her lone Daily Masses for my lost soul will be appreciated if that’s your thing, as will any “just hurry up and get on with it”s. If my other eye goes, David will have to go onto secretarill duty so any changes in style, quality of content etc please report. ... View more

Hi Sue - welcome. Can't answer al of your question but perhaps some. My rads after initial surgery (WLE and all lymph nodes) were on the scar area of my boob, and the armpit. These aren't probably the eusual areas for rads to secondary bones, cos most of those seem to be needed on pelvis and spine so not really a problem for most people I've read of. Will be interesting to see what others may say. Normally they say no repeat of rads where previously administered, but this is caveated by how long ago and what intensity. HTH. Val - won't say I'm glad to hear you have numb bits too, but as always it does help to know you're not alone. Still no sight in left eye, tho no more tongue explosions which is a relief. Have now been to eye hospital who like optician can see nowt wrong with eye itself, which I spose I should be pleased about, but there's obviously something amiss, and they've taken bloods and are doubling up on the oncology head scan to include the eye and its nerves. CT scan tomorrow but pm, so due to bank hol definitely not going to get results till next week - more scanxiety. Afraid duty GP got edge of my tongue today. To add to my ills, th esteroids are having fun with my diabetes - sugars at 30+ today, and when she rang me back it was so clinical and condemnatory that I'd eraten a nut bar with my am steroid and had forgotten to insulin, I flipped and told her exactly what was going on with me, and apologised that I wans't as precise with everything as I shoul dnbe and maybe she should try it... She mellowed a bit then ... And maybe it did no harm - I keep my 'face' on for surgery visits usually so sometimes they don't realise the quagmire that goes under the smiley face and laughter. One thing my tongue incident has highlighted to me is the need for communication between upstairs and downstairs. I've always thought if I were unwell I could just call down - but having a tongue with different ideas and limited slow mobilty due to knee ligaments made me realise this wasn't the case. It was pure luck I was just in panic mode when my OH came up to wake me. We've now got a buzzer system from Screwfix that I can buzz from anywhere and there are 2 sounders so he can have one in his office and one in the garage (his escape from my woes!). Might be worth othersw thinking about? Thread's bee3n quiet lately - I know a lot of us are having problems right now which may account for it, and in some ways the facebook area is more immediate for responses. I hope thread picks up and doesn't fade away. Such a good source of info. Nina ... View more

While since I postd and it was probably bragging about how side effect free I was on Cap. All may be changing! for a while I've had tingling lip nose ad cheek on my left side but it didn't bother me too much so I mentioned it to my chemo nurse but we didn't really discuss it much. During 2 week hol in algarve I noticed my sight was a bit blurry - thought nowt more f it. Homeabout 24 hours and I realied my left eye was pretty useless. Mentioned t chemo nurse and she said see opticain. This I did yesterday and they did a lot of checks but found nothing obvious wrong. Tey arranged a visit to ey hospital latertoday for me. Events overtake however and I woke thi m with a bloatedtongue - left handside - filling my mouth. OH rang chemo nurses, andadvice just back is stop Cap - if side effect a rareone but only way tto prove one way or other. Start nice steroids to stop me sleeping and blow me up (!) and continue them til we get resuts of CT head scan we're going to request urgently (obviously thinking brain mets). Not a happy bunny and scared too. Sh1te sight, diffs talkining and eating, and a brain scan - what esle can a girl ask for?! ... View more

While since I postd and it was probably bragging about how side effect free I was on Cap. All may be changing! for a while I've had tingling lip nose ad cheek on my left side but it didn't bother me too much so I mentioned it to my chemo nurse but we didn't really discuss it much. During 2 week hol in algarve I noticed my sight was a bit blurry - thought nowt more f it. Homeabout 24 hours and I realied my left eye was pretty useless. Mentioned t chemo nurse and she said see opticain. This I did yesterday and they did a lot of checks but found nothing obvious wrong. Tey arranged a visit to ey hospital latertoday for me. Events overtake however and I woke thi m with a bloatedtongue - left handside - filling my mouth. OH rang chemo nurses, andadvice just back is stop Cap - if side effect a rareone but only way tto prove one way or other. Start nice steroids to stop me sleeping and blow me up (!) and continue them til we get resuts of CT head scan we're going to request urgently (obviously thinking brain mets). Not a happy bunny and scared too. Sh1te sight, diffs talkining and eating, and a brain scan - what esle can a girl ask for?! Nina ... View more

Hi Ali - 'Welcome'... I think I'm a bit like you in terms of bone mets - I've been zapped from mid thoracic to sacrum too, nearly a year ago. It took a while to take total effect - kept getting a bit better as time went by. Like you I wanted off strong pain killers - I was on hydro morphine and progabalin (? not sure of name still - the nerve pain). I did reduce my morphine from 6 to 2 twice daily and wanted to stop all together but my pain man at the hospice put it to me I'd see it as a failure if I had to start again - perceptive man that he is - knows me better than I do! I have recently been upping and downing my morphine as required. If I'm having a more active day I go up a day before and after, if I'm having lazy days I keep it low. I know realise its pain prevention not cure, and take it whether I feel I need it or not. Hard to get your head round I know but has to be done. Activity wise, you have to walk before you can run! Do what you can and be grateful for that! My husband would be laughing hysterically if he read this - all he preaches to me and I try hard to do but struggle with! Nina ... View more

Hi Valai - glad to hear - if you know what I mean! - of another tingly lipper - we're obviously an exclusive club! No-one posted here re tingling but I had a few others on the secondary facebook group who had same problem which encouraged me. Must admit I give up with al the things it can cause - my diabetes has risk for peripheral neuropathy too, and if I thought about all the side effects from all my drugs I'd never stop worrying!! and the possible SEs of my strong anti depressants - gee whiz! I'm told vin... whatever gail is on now! - is my next port of call - also oral and also no hair loss - might be worth asking about? Worth a call to your BCN - sometimes I get results from her quicker than waiting for clinic? Sincere sympathy on the wait tho - I hate that bit more than th results sometimes - at least you know what you're facing with results - its not knowing which is the killer. Hugs Nina ... View more

Hi Ladies - looking for some reassurance here. Few weeks now I've had tingling numbness on my lip at one side. thios has spread into my cheek and nose recently - not all the time, just intermittent. Anyone else suffered? Scared its something other than Cap SE! Nina ... View more