Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Hi Chick and Jill happy New year chick glad to hear you are doing better re pain and if the injection is working that is probably a lot better than surgery
I'm currently on the waiting list for certain spine surgery I didn't want to but weighed up what was the best thing to do and recovery from surgery is a lot better than having a neurological decline in symptoms which can't be reversed so I'm on the list and if things do get worse he will fit me in the list is quite a size so not imminent can't be walking around atm because of black ice no falls I've been told haha!!! So atm I'm having a ct scan Sunday for some shadowing on 5th rib on bc side my onc isn't concerned but radiologist wants a scan to rule out stuff fed up of things popping up to scare the crap out of me!!!!!!! Anyway my onc was reassuring so I'm feeling OK about that
I try not to take pain killers as I don't want to get reliant on them only take them now when I'm desperate
Jill how's you haven't spoken in a while I hope you have been able to get to the bottom of things
Just thought too girls maybe if we had a different thread or hijacked another rather than on the possible bone mets one as I'm sure you will both agree that's a possibility we definitely want to avoid!! Mmm just a thought!!!!!
Take care Mishy xxxx
Member
Posts: 343
Registered: ‎13-03-2018

Re: possible bone mets

Hello Mishy and Jill,

I am on a return visit 😁. Happy New Year to you both (and everyone else) How are you both doing? Have things progressed for the better for both of you? Hope you got a definitive diagnosis Jill.

I eventually got the injection. The doctor who did it said it can take up to 2 weeks to work, another doc said up to 6 weeks, blah blah - make your minds up and do you really know anyway?

So, initially it didn't seem to have any benefit (apart from a blissful evening hours after having it which could have been due to the local!). I also stopped physio sessions as did not see the point of appointments in dribs and drabs to use the specific equipment. Anyway just did my own thing with exercise and the pain killers.

At the moment not taking any regular pain relief and have not done for nearly a week. Still have pain but it is more manageable and variable. I think it has helped to be in a standing position a lot of the time!! Walking can still be a trial but is less painful. I have more pain now at night. Previously, I could sleep on my good side without pain. Now it is painful all night after I have been laying for 1 to 2 hours. It usually wakes me up and then I turn over to my bad side and so on. But at least I can now sleep on the bad side! Painkillers before bed don't help so I don't bother. It also does not help when I get some pains and cramps from the anastrazole as well. A night will be agony every now and again.

I have a review appointment end Jan, so will see if they may risk another injection on me. I was told by physio that they would not if first one did not work - not sure if that is quite right. I would not mind trying once more and I also could argue that things have changed for the better since the first injection. I am resolute that I do not want surgery even though I received another consultation appointment in Dec.

Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Merry Christmas Jill and Chick have a lovely day xxx
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Merry Christmas Mishy and Chick - hope you both manage to have as pain free a day as possible !
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Jesus Jill i really hope they haven't been mucking around delaying treatment but hopefully they will tell you def no mets the other thing sounds unverving but you will be surprised once you see the specialist in that field you could be more settled when you can have everything explained better of course it will not stop you from worrying this cold weather i think is definitely making things worse he explained thst can happen i have been thinking all kinds till he explained in detail everything which thr rheumatology will do just bloody annoying that you have been passed around with no clear answers up to now big hugs and good luck xxx
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Thanks Mishy .Glad you have made some progress hope I do move things forward - my DEXA scan said I don't have osteoporosis .Im scared they will say I have mets and I have wasted 6 months not having treatment that could have helped ,the other option is not very appealing either though - rare bone disease with no current treatment funded on NHS !! My ribs are agony this week - I've sent for a support belt thing to see if that helps .
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Hey Jill good luck for Thursday hopefully you get some answers i had my meeting today no on surgeon waiting list he has 3 im in the needs it done but not an emergency symptoms quite stable should be in a couple months to 4 which is worse case he wants me to have some extra time to get over chemo rads aa i didn't finish till feb this year and it can hinder healing also need sone bone meds as test came back osteopenia so something is starting but can be sorted with pills i need my bones nice and strong before surgery im having olus side is i can have Christmas unspoilt xx take care x
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

I know I am having to adjust to the fact that I am going to be permanently disabled to some degree also .
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Keep in touch Jill let me know how you get on im really nervous about my op now i5s quit a lot of spine work so looking like i won't be getting back to work at all now just going yo have to get used to the idea xx
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Mishy - half asleep so sorry reply a bit brief -Rheumatology next Thursday 6th Dec , back at neurosurgeon January to discuss op on lower spine ,stil have hole in leg after abcess - Nurses still coming twice a week to dress it .Still on crutches and can't drive .Oncology still can't say 100% not mets but looks more likely rare bone disorder - not a great outcome either as no treatment apart from surgery - DEXA scan says not osteoporosis so other things causing fractures - so prob a choice between 2 rubbish options - oh well . Applied for and got my disabled car badge just need to be able to get in car to use it now .Good luck Monday - I will opt for op too as my symptoms are also pretty scary .x
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Hi Jill Chick not posted in a while on this thread been having a bit of a time with anxiety since my last app with neuro how are you both doing i hope everything is ok for you both
Ihad my bone density checked last week should find out results at gp app tomorrow got my surgeon appointment on Monday with surgery date i def think i have to get it done i have been having some awful and at times pretty scary symptoms so i think i just have to grit my teeth and got on with it
It has brought alot of fears about bc back too which i think were probably still there as with all of us but have resurfaced thanks to my setback
Jill hows your leg now i hope its better and you are at least getting some relief
Chick did you get the injection and if so did it help xx
Take care lovely ladies xx mishy x
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Oh Mishy can totally sympathise re your appointment I really don't think I asked any questions apart from "do you think it's is secondaries" when I saw neurologist - it was only after leaving that I looked into what Id been told and thought * *** should have asked more questions this is serious stuff .How depressing that he doesn't think things can be improved just stopped from getting worse - can that be right ?? I'm pretty sure I was told taking pressure off spinal cord would help relieve symptoms .The thing with my neck is also pretty scary as it actually means that because of a malformation of my skull part of my brain is poking down into spinal canal !!!! Looks like symptoms can be helped with that too but again it's major surgery.I understand how you feel about work too ,I lost my job after 12 months off sick and have not been well enough even to consider voluntary work since my hysterectomy for womb last year - feel like my life has shrunk very small indeed and very jealous of those living their lives to the full post treatment .Good idea that you are going back to see surgeon to discuss in more detail - is he sure the op won't improve things for you ?? I have appt with rheumatology on 6th December so will not be any closer a diagnosis til then .x
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Hi Jill the ribs he just felt them!!!! He checked my last bone scan (jan) which was clear very confident its that, my neuro app on the other hand i was offered surgery there and then to be out in his list or think it over or see him in 3 months to be monitored cant make anything better surgery is to stop it getting worse 😨 says i can end up getting balance problems arm weakness leg weakness as it progresses and if this happens it cant be reversed he is also concerned about me not falling as tbis could injure my neck more the prospect of becoming disaled by this is scaring me he can't say how long etc as everyone is different, its not a severe compression which would need immediate surgery but you could clearly see on scans my spinal cord is being squashed in a couple of places which is causing the problems i have got dropping things clumsy hands etche also asked what was my job i explained that i haven't been able to go back as after bc treatment this has also started so he said oh thats ok then?! i chickened out and left appointment saying I'll see you in 3 months probably not the best way to handle it so i have decided to see him again and discuss surgery properly the pros cons etc it doesn't help when because clinic is running over you feel rushed and i was also stressed before i went hopefully when i see him next we can come to a sensible decision for me after all i don't want to end up potentially in a wheelchair through it sorry for the moan and rant girls i just felt so damn deflated yesterday when i got home
Jill how are you getting along lovely i hope you are feeling a little better after leg surgery have you had any appointments yet its so tiring isnt goung to different appointments i really envy the ladies who have been abke to get back to some kind of normality after their bc treatment xx
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Mishy how did you get on with your surgeons appointment ?
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Chick - sorry you are still struggling so much and yes I totally understand how you feel .Ive given up telling the truth when people ask how I am and the list of ailments is so long and depressing !! The most debilitating at the moment is my ribs - which I'm sure I'm aggravating due to using crutches .Mishy how did your Onc diagnose your rib issue ?
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Hi Chick i know exactly what you mean how frustrating for you but as you say surgeon may speed things up for you, sometimes i think its also good having a break from forum too, it can be good for us, i do think exercise can help i make an effort to walk every day im even thinking of doing some tai chi as its not as strenuous but still exercise i feel the same too re surgery i really would prefer to not have to have it sick of being a patient and sick of second guessing everything after bc i think i need some much needed respite from it all, we all do
Jill hope you are ok too i think once you have some answers you will be happier too
Stay positive ladies remember we are 💪 we have been through a long haul so we need to be kind to ourselves xxxx
Mishy
Highlighted
Member
Posts: 343
Registered: ‎13-03-2018

Re: possible bone mets

Hello Mishy and Jill and anyone else reading, 

 

Having a bit of a break from the Forum, well apart from this response.  

 

Mishy and Jill,  so sorry to hear you are still having so many pain and mobility issues. 

Mishy - glad you got an explanation for the rib soreness. 

 

Jill - glad to hear you have at last received some specific explanations of causation.  Hopefully,  you will get explanation for the remaining issues soon  and treatment started to alleviate at least some symptoms.

 

I got a letter the other week from hospital saying I was now allowed to ring up for an appointment.  I rang and found out it was for a neurology appointment but no other details could be given.  I went to the appointment yesterday thinking that after 8 months of crap symptoms, they considered me worthy enough to have at least a discussion of having nerve injection.   

 

The appointment was with a neuro surgeon to discuss and examine suitability for effing surgery.  What a waste of mine and his time.  I clearly expressed my frustration,  though obviously not blaming him as it wasn't his fault and we both agreed there had been confusion.  That it would have been more apt to look at injection first.  However that was not his realm.

 

We still made use of the time. I actually informed him that I was against invasive surgery for now (a lot to do with my BC experiences and I have decided that I am  not in a place at the current time to accept surgery).  I also asked if he could use his influence to speed up appointment to discuss nerve injection.

 

Apart from that,  I am trying to ignore the pain and follow my own exercise routine.  Well I can't do any worse than the so called professional treatment.  My breathing has gone downhill again. I think some of it is down to the pain meds and the chilli pepper cream so going to try and reduce use even more. 

 

Some of it is down to reduction of activities as well as side effects of cancer treatments.   I did quite well trying to build myself up after chemo etc but it is a bit more difficult at the moment to be positive again.  It is just like having no respite from the BC -  over a year and half of active BC treatments and then straight into this.  I am sure you both know what I mean. 

 

Best Wishes, 

Chick 🐣 

Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Eeh Jill i feel bad for you it must have sent your anxiety levels through the roof thinking it was mets i have a form of arthritis caused through psoriasis which flares up from time to time at moment its not bothered me but my skin is terrible atm, i have episodes of anxiety which elevated when i was going through treatment im alot better now hardly bothers me till i have any investigations then my mind goes into overdrive i think its awful that you have had to deal with a possible mets diagnosis for months im pleased you now have had most of your answers take care x
Community Champion
Posts: 7,664
Registered: ‎29-05-2015

Re: possible bone mets

Yes Mishy ,it does sound very similar.I can put up with the neck issues but the leg weakness has made my mobility very poor so I would def consider surgery - when I have recovered from the last one !!! I still have an open wound that is being dressed by district nurses every other day !! I am waiting for DEXA scan and rheumatogy opinion about the bone issues - there is a chance of a genetic bone disorder according to Oncologist - just want to know what I'm dealing with after 6 months of investigations .
Member
Posts: 1,856
Registered: ‎29-04-2017

Re: possible bone mets

Jill your feport sounds very similar to mine! I have spurs compressions of cord too however mine is neck not lower back thats has bulging disc degeneration i am back at neur5 on Rhurs to find out what hes doing and when back went yesterday couldnt lift my leg sit or anything has settled this morning but i haven't had any sleep my neck is still the same i really don't want the problems i have with my arms and hands to get worse so i suppose surgery shouldn't be turned down, had my onc app he reviewed my scans of head and spine saus not mets and has out my hip and rib pain down to spine and radio therapy!!! I think when you have a spinal problem the pain can be deferred to the hips legs and feet i also have chostochindttis in my ribs onc could feel the inflammation but no mets which was whst i wanted to hear, Jill i suspect if you have oestoarthritis and have gone through menopause you could have some osteoporosis my doc has arranged a dexa scan in Nov
Chick hi hope that you are chugging along ok and your back isn't causing you to many problems be careful when jts slippy out girls my neuro doc told me to be careful and avoid falls xx