Jill yes im sure after the scan in Jan it will be something to do wth joints/disc i think you could have been saved a lot of stress had they did this 1st with you but i hope you too get some reasurrance and this resolved soon its the waiting i don’t like, anxiety is that friend that keeps coming back even though i have given some more than subtle hints i was fed up with its company!!! Never realised i was prone to it till diagnosis but yeah its good we can come on here and share people get sick if it once your well so to speak!!
Chick im with you on the bone scan stuff i was very pleased but i still don’t want to be given the pesty worrier lady, one thing i learbed from my experience its better to be the dog with a bone sometimes i don’t want my anxiety from the bc stuff to make me look like a hypochondriac!!!
Jill hope everything is ok and you get sorted xx
Scan results in good but not good there is no evidence of cancer in spine however i have significant cervical spine problems with some spinal cord compression have been referred to neuro looks like spine surgery is on the cards loks like im again going to be a guest of casa NHS ? i have no words but no cancer apparently i was red flagges thats what gp thought symptoms the same as cervical spine mets myelopathy x
Good and bad news then Mishy- at least you know what you are dealing with now I suppose ?
Hello Mishy,
Well although things could indeed be better, I am glad you got your results and know where things stand - so to speak. At least no evidence of cancer ?. I hope you can manage the pain at the current time and hope you don’t have to wait too long forneuro referral. X ?
Yeah ladies i know i cried with relief at the no mets news as i wasn’t expected them to be looking for it he confirmed he was concerned it was so hence the quick MRI i have been given Gabepentin to help with the pain as its neurological pain(his words) i will find out what exactly will happen once im at neuro he has said to expect surgery at least now i know what im dealing with and i have a referal to sort it im also slightly bemused as to when it started as i have only had symptoms which were notable for a few weeks i really hope you all get your things resolved soon im wondering if the chemo has made me more susceptible i tbink i will ask at my app, also do you think i should ask my onc about the bone strengthening infusions to help prevent anything as my spine clearly isn’t up to much for a 47 year old!!!
Hello Mishy,
Sorry to hear that you may end up having surgery.
If you take the Gabapentin, let me know how you get on. I have an unused box sitting in my apothecary - not brave enough to try them yet. Stopped taking Naproxen after a week as did not want to be taking Omeprazole on top. However, did manage to pick up the emergency script for more dihydro to last until I return home - thank goodness. Sticking with these now with the addition of a paracetamol on top to enhance the dihydro effects.
When you talk of “bone strengthening infusions”, I am assuming you are on about bishphosphonates infusion like zometa/Zolendronic acid.
I have this every 6 months for 3 years. 3rd one due in September. Onco asked if I wanted these due to research that indicated it could reduce spread to bones for post menopausal women. I also managed to have a Dexa scan after starting aromatase inhibitor (AI) treatment. I was classed as oesteopenic! (Can’t bleeding win - after all the weight bearing activities, good diet etc, good weight). So after weighing up the pros and cons (main con was rare jaw bone necrosis), I decided to have them as it could also protect bone density that would be even more eroded by the AI treatment.
You can ask your Onco but it may not be seen as apt if you are not post menapausal. However, if you are concerned about your bone density and have not had Dexa scan, you could always ask GP to refer you for one or arrange privately. I do not think they would consider bisphosphonate treatment unless your bone density indicated need. Bishphosphonates can also be given as daily or weekly tabs - maybe there are other variations too!!!
Take care Mishy X ?
Hi chick the gabepentin has so far been ok had 1st one last night then one this morn another tonight before bed tomorrow i go on to full dose of three per day se have been last night a good night sleep!!! Felt a bit spaced out today apart from that fine i don’t really want to go down the road of being in these types of meds long term but at least till i see the neuro i suppose will be ok, re the bone stuff i think i might be post menopause now as i haven’t had a period since 1st chemo last July im thinking they surely would have came back by now if they were going to and my mam has osteoporosis which she was told years it can be heriditory and i should look after my bones i can’t now do weight bearing exercise so i think im going to ask GPS to run a menopause status and ask for a dexa then see if i can have a chat with my onc about it, im just determined to look after myself as best i can and do everything to try and prevent mets i really think yesterday i was a bit in shock im alot calmer about it now as it could have been news i really didn’t want, wow this cancer stuff really doesn’t leave us mentally does it my anxiety levels yesterday morning were through the roof before seeing the doc then the tears followed when i realised that im always going to feel that way every time i have to have any tests ? Jill hope you are ok and coping with your pain i really hope you get some answers soon
Jill, Chick, pain is very debilitating so as someone also struggling atm i really do empathise with you both xx
Oh and ladies just to add i requested a copy of my full MRI report and was given it i thought it might help if needed to attend any meetings/check ups and for any work related stuff for you ladies this could also help so I would definitely ask for a copy x
I would be interested to know how the Gabepentin works out - would love to be pain free but not zonked !!
Ill keep you posted Jill i refused to take pills for the anxiety as i was too scared to take them on top of these but i have got it a little more in check atm touch wood i am not having many issues with that atm apart from yesterday when i had an absolute meltdown anxiety is truly awful its the fallout from breast cancer noone warns us about thank goodness for counselling and this forum ?
Hello all,
Naproxen, dihydro and paracetamols were not killing the pain to an acceptable level so tried the Gabapentin. One ? 3x day, to increase each dose by one tab every 3 days until 3 ? 3 x day.
Feeling more spaced out and tired and more concerned about the damage these sorts of drugs may be doing. Have had to add other pain relief on top. Even rang 111 to ask if ok to take double dihydro on top of everything else one night.
From just about 0 tabs to all this in nearly 3 weeks and still agony to walk!! I was told it can take a week or two for the Gaba to build up. But then it also does not work for everyone.
Wouldn’t mind taking stuff if it was repairing any damage but they have no impact on that. Not being able to walk without excruciating pain obviously having impact on quality of life. Trying to keep upbeat but it’s going to be difficult if no improvement soon.
Hope you are all doing well and things have improved for you. ? X
Can totally sympathise Chick - I’m currently gritting my teeth on a steam train day out booked months ago - if I take strong painkillers I am just zonked out but I’m very uncomfortable without - oh for mobility and a pain free existence .Amytryptaline at night has been mentioned as helpful for some people - again it builds up over a period of time - as you take it at night you are sleepy at night time rather than during the day - may be worth a try for both of us ? Where are you up to with investigations ? A friend of mine had excruciating pain in her hip and leg - was arthritis and a steroid injection stopped her pain completely .
Hello Jill,
Day out on a steam train sounds good. Which one is it? Last one I went on was the one to Kingswear and then boat to Dartmouth. Hope it is distracting enough for you to have a good time.
Oh the sun is shining and my natural inclination is to go on a coastal or country walk. But everytime I press on my right foot ?.. I even succumbed to being pushed around Boots in their customer wheelchair yesterday!!
I did well losing Anasty weight the past couple of months and I think 8lbs of that has now piled back on!!
I return home on 24th, managed to get MRI for 28th and see a physio on 30th. If no pain relief from Gabapentin, will also book GP appointment regarding pain managenent. Would rather take more dihydro or similar as it does touch the pain to sone degree, then mess with antidepressants or anticonvulsives that are having little effect.
Hope you manage to have a lovely day. X ?
Settle to Carlisle railway over Ribblehead viaduct - very beautiful. You can’t really win on the painkiller front can you ,there are side effects whatever you take - I’m very sleepy on the dyhyracodeine - try not to take it til afternoon or I am fit for nothing but makes mornings hard with the pain .
Hello again,
Oh brill Settle to Carlisle. I am a Yorkshire lass originally - born about 16 miles from Settle. Must do that train journey.
Just realised the last one I did wasn’t the Dartmouth one but the West Highlands journey from Inverness up to Kyle of Lochalsh a few months ago. Bleeding drugs doing my memory in ?
Hope you are having a lovely time with the scenery being a sufficient distraction from the ? side of life. At least on a train journey youbcan sit there and just enjoy the sights.
X ?
Hi ladies love the sound of steam train but feel it re oain, got my app with neuro surgeon for 2nd Oct will chat about op options and run another mri to see if any changes
Chick pleased you have a date for Mri and app at least you will have a picture of whats going on, im finding the gabepentin making me really drowsy and dopey also feeling mild nausea haven’t upped dose passed the 2 as i don’t think i would cope, still in alot of pain in neck however the electric shock sensations is relieved so they must be helping with that side of things feeling a little iff balance hoping this is a se from gab rather than my neck symptoms getting worse obviously they are nit treating it as an emergency but gp says a 6 week wait for app is very good as its usually 18 weeks for neuro unless its an emergency
Its getting me down nit going to kie i had a big plan in my head that i was going to look for a new job etc now feel like im between a rock and a hard shoulder i was really feeling sorry for myself at the weekend wondering would my life ever be normal again but have snapped out of it now thank goodness Jill have you heard anything yet rre your app i hope it won’t be too long now xx
Hope you have enjoyed the scenery Jill theres nothing nicer i have a 4 day break to look forward to in September in Scotland near loch lomand staying in a little Loch village called Arrochar the scenery is amazing waking up to veiws of loch long every morning can’t wait for some relaxation away from the hustle and bustle of home life,xx
Hello Mishy,
Lovely to hear from you.
I am returning to Beautiful Scotland at the end of the week. Lovely Loch Lomond, really hope that will be a super tonic for you.
Glad you got your neuro appointment. 6 weeks is better than 18 but, oh goodness, haven’t we had enough of waiting. If one more person tells me that I am going to be soon back to “normal”, I may not be responsible for my actions. I can always blame the tablets. I am feeling more spaced out at times but come Thursday I am going to up the dose for the third and final time.
Hardly surprised I am spaced out with all the pills. I nearly fell asleep yesterday with a dinner plate in my hand ?. Had a couple of strange moments that I will file under the day dreaming dozing off category rather than hallucination category. I wish I could just feel a bit more relief even just when sitting or lying down. Going upstairs is fine as long as I go up on all fours. I sometimes have had to go on my knees in bed and ended up falling asleep in that position ?.
I know how you feel about just wanting to get on with things and plans. Constant pain and restrictions can put such a downer on things. Mustn’t let it win!! X ?
Ah Chick i love bonny Scotland, between there, Northumberland Coast and Yorkshire dales, i can’t think of anywhere that any country abroad could offer which would be better for Natural Beauty we really are lucky when you think about it, you enjoy the rest of your week hopefully it will take your mind off waiting for results etc waiting… Is rubbish isn’t it ?
Oh and enjoy Scotland when you go back do you go there alot ???