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possible bone mets

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Re: possible bone mets

Hello all, 

 

Welcome back to posting Jill 🤗 🤗 🤗 

 

That's 💩 about the pain and mobility.  Hope  you get full results soon and all is clear.  Fingers crossed for you Jill.  I would be mentally climbing the walls wanting to know one way or the other. .  It has been too long for you in my opinion and I find it unacceptable. 

 

Hello Mishy,  Hope you are feeling as good as you can be today. 

 

Going off subject.... Did you see the final Bodyguard episode?  Jed Mecurio is ace in my opinion - I was an absolute fan of Line Of Duty - Keely Hawes got blasted in that as well! 

 

Take care all, Chick 🐣 X

 

 

Community Champion

Re: possible bone mets

They said 2/3 weeks post op for follow up .I will get sent an appointment re spine - from a different hospital .Im expecting breast clinic to ring re biopsy results - not a phone call Im looking forward too as it looks like bad news is on its way .
Member

Re: possible bone mets

Jill when will you find oud what is happening aee you scheduled in for an appointment for check up etc, i suppose it won't be good to give you any more surgery till you are healed from this one it aounds really painful Jill
You should apply for pip too as you are not exactly in a position to work and it could make life a little easier for you
Sounds as if you have lots of thungs ti help you get around the house i do hope you stsrt to feel a little better and in less pain soon Jill x
Chick that lady sounded so unprofessional as if she was kept back just because of you
Its sounds as if you might as well wait and get it dine NHS route as there doesn't seem much difference
With the injections i know you can only have them done 3 times i knew someone that had it done it did help lasts a few months and as i say she was told she was only allowed to have it 3 times i suppose you could get some relief whilst you weigh up the benefits of surgery
Community Champion

Re: possible bone mets

Sounds like I will have a bit of a wait then re spinal issues even if seen quickly .Since having leg done virtually impossible to find a comfortable position to sleep in as I have no choice but to lie on my back .Strong painkillers work but make me a zombie - had oromorph im hospital a couple of times and on both occasions made me feel very odd and heart racing away .I know have nearly the full hit of mobility aids - crutches walker ,wheelchair ,toilet frame and commodes 😳
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Member

Re: possible bone mets

Hello Mishy, Jill and anyone else,

Really glad Mishy that you have got appointments through and you know what is happening. Of course, I would rather you did not have to have any appointments at all.

Have had a few days of despondency but will pick myself up again no doubt. I was upset to miss my trip away and meet up with some family I have not seen for a few years.

The person I saw from Spinal Services irritated me when she rang with the MRI results and to tell me the outcome of the MDT meeting. I had just been dosing late afternoon (pain had been quite bad at night and had to keep getting up nearly every hour so grabbing sleep when I could). When she rang, I was disoriented and thought it was the next day. I said on the phone that I was feeling a bit out of it etc. OMG did she not make out that she was a bleeding martyr and here she was at nearly 7pm ringing up when she should have finished at 5 and how she would like to rest. What the F did that have to do with me! I didn't ask her to ring over her time etc. I use to work over my time a lot but can't remember trying to make staff or clients feel bad about it!

I got some stronger Capsaicin cream from docs. However, she did not seem to think there was one at first - so glad I did my homework. However, I think the fumes can irritate my throat but ok once I am covered 😊

I have tried to be as active as possible, but to be honest, I have had the best relief from resting more this week. I have even managed to lie on my back and also on my right side a bit without wanting to cry today. I hope this lasts.

I checked with private hospital here about getting the xray guided nerve root injection privately. Oh dear, it would be about a month before I even got an initial consultation, never mind an injection. Then I read it could work, may not work, can make things worse, can take weeks to work, is only temporary blah blah - think I may as well save my dosh and wait for NHS consultation. After all, it's only another 8 weeks if I am lucky, so only nearly nine months from when it all started!!!

Mishy, I agree about treatments taking their toll. Before BC, I was very active exercise wise, yoga, swimming, walking, resistance training. After BC treatment, I am oesteopenic, short of breath more than ever, and using a walking stick despite trying to be active again. Yes I do think the treatments like chemo, Herceptin, Anasty, Bishphosphonates all take their toll in different ways.

Anyway, last episode of the Bodyguard to look forward to watching tonight, and a roast chicken 🐔 dinner - only trouble is I still have to cook the latter... 😊 X 🐥
Member

Re: possible bone mets

Chick another one of us with spine issues!! No wonder you are in so much pain prolapsed disc not good, well all my apps have arrived head ct scan next Thursday then on 9th the 2nd Mri to c spine and 11th nerve conduction tests i think i def over did things as still feel quite disoriented in my head with a wobbly feeling at top of spine and of course the pain! I suppose by i get results back ir will be about the same time from 1st app to surgery too probably a similar op apart from mine is cervical and yoyrs is lumbar is nit a prolapsed disc with me though its spurs and mine is a corrd compression not nerve root both equally aa painful no wonder you have been climbing the walls too
I hope you can get away but if not going to make you feel worse
Jill if you see this sending you my very best wishes and thinking of you xx
I find it really interesting that quite a few of us bc ladies are having spine problems as jills scan has shown up a few things too i wonder if rhe treatment could have made us a little more susceptible due to bine strength its some im very curious about, it doesn't make any difference as it was a no brainer had to have it otherwise i might not be sitting here now im eternally grateful but still curious all the same!!!
Take care ladies xx
Member

Re: possible bone mets

Hello Mishy,

Apart from the accident, it sounds like going away was a tonic for you. How are you feeling now?

I was supposed to go away this week i was really looking forward to catching up with some family. But no way can I undertake a long journey. I still don't quite undersrand how I manage to return, in August, from my last jaunt.

Eventually got a phone call follow up from Spinal Services yesterday. MRI shows prolapsed disc. Will be offered Nerve Root Injection and to be put on Surgery Appointment list for possible Decompression Surgery. Not holding my breath - the former can take up to 2 months for an appointment and the latter 3 months. Not keen on the surgery but I think I would try the injection. However, it may not work and could make things worse. You would have thought they could have offered an earlier appointment since this originally started in March and they know I have had issues with pain killers. I was looking into private treatment but it seems relatively costly.
Just feel a bit left on the scrap heap. This really isn't living.

Anyway, hope you are faring better
Chick 🐥 X

Member

Re: possible bone mets

Hello Jill,

Hope you see this if you are managing to peruse the Forum. Just wanted to send you best wishes and hope you are feelibg a lot more comfortable.
All the best, Chick 🐥 X
Member

Re: possible bone mets

It waa awful had a lovely time aside from that lota of sight seeing and went on a lovely loch cruise of Loch lomand truly breathtaking its just a shame that afterwards we ran into the accident so tragic
I feel a little better today i think sitting in the aame position got me yesterday
It waa also lovely to be around people who didn't know about my bc history so no one qas asking awkward questions met some lovely people at the hotel too hit lucky with the weather it did rain but not while we were out and about
Hope you get some stronger pepper cream and hope you are not suffering since the acupuncture!!!
Jill hope you are feeling OK after the op and keep yiur chin uo sending lots of positive vibes your way xx
Member

Re: possible bone mets

Hello Mishy,

The accident sounds awful - the poor girl and anyone else involved.

Not sure how Jill is doing - but if you are reading this Jill then positive best wishes to you.

Sorry to hear you are in pain Mishy. It is so wearing isn't it. Sometimes the constancy and level of it just makes me 😢. Physio gave me an acupuncture treatment yesterday. I was warned it may initially make things worse. I was in constant agony yesterday. Can't get another appointment until 1st Oct though so 2 weeks between treatments may not be great. Anyway need to get ready for GP appointment as I want to know if there is a stronger chilli pepper cream available (but don't want the Patch) . Need a giant pot as at the rate that I I am going, I need a tube per week.

Take care Mishy,

Chick 🐣
Member

Re: possible bone mets

Hi Jill how are you doing after your op i hope everything went well for you
Chick hiw are you doing too, hopefully not in too much pain back from Scotland in alot of pain now i need a rest after my break!!!
Definitely going to have to take it easy next few days as feel like my neck is really going to give me hell after being away it didn't help that yesterday tgere was a terrible accident in loch lomand with a young girl riding pavilion who was also 7 months pregnant an air ambulance took her to hospital but i don't think she survived the road got closed and driver had to reverse drive to nearest turn pount with police escorting then basically had to go right out of rhe way to get to hotel probably about 65 miles and we had been 15mins away from hotel but obviously with the accident the road was closed off so tragic im home safe and sound but can't help think about that poor girl x
Member

Re: possible bone mets

Mishy, I hope you're able to enjoy your trip to Scotland xx

Member

Re: possible bone mets

Hi Chick yes i meant abraxane haha typo error i gad a couple of them very similar symptoms to doxetaxol but also with hair loss like with fec but didn't need the jabs with that i had them throughout chemo till i went over to abraxane as it doesn't deplete the nuets x pleased that stoned foggy feeling goes i just hope im not in too much pain whilst im away packed the drugs just in case i definitely think my problems with fingers are a combination of chemo and my neck things i hope your hand is OK any sign if results iff your mri poor Jill's showed up some upper spine stuff too its interesting that after having intensive treatments for cancer that some of us are having these problems im nit saying it caused it but maybe it made something thst was already there worse!? Thats my theory
Keeping everything crossed it isnt pouring down in Scotland haha
Jill hope you are feeling OK after the op and getting plenty of sleep and are coping wiyh everything sending you my 💪👭
Member

Re: possible bone mets

I can't believe that you've been treated like this Jill x I hope your op went well this afternoon, thinking of you x

Member

Re: possible bone mets

For Gods sake just as well you had the scan yes my hands arms pins and needles of course was dismissed for a while and put down to chemo mri showed different so pleased i gad it dine and for you too as you say they know what to not do in surgery so 👍 mind i tell you what re the miscommunication they need to be clear as its nit just bloody arthritis they are saying you have best of British with your op Jill i will check in on you later xxx
Community Champion

Re: possible bone mets

Waiting to go down at 2.30.Mishy I have had pins and needles in my hands .I saw a anaesthetist and they are going to to be very careful with my neck /back and won't be having a spinal - so glad I got MRI done .Hows this for a head**** - anaesthetist says - oh yes secondary bone cancer ,half hour later - surgeon -" oh I really don't think your leg is secondaries from MRI .... you're dying ,no your not ,your dying ,no your not - how many times !!!!
Member

Re: possible bone mets

Hello Mishy,

So sorry to hear about your touch and holding/gripping capacity being affected. That is so debilitating on top of everything else. I hope it has got a bit better for you. The only issue I have with my hands is a sore 2nd right finger that just started a couple of days ago. I am hoping it is just because of gripping onto the walking stick with dear life at times.

By the way, I had docetaxel too. Suffered awfully at the time with bone pain from the effing GCSF injection (refused all subsequent ones - good decision for me) and then neuro pain, especially in feet/toes especially near the end of treatment and after completing. Have always been left with minor numbness and pins/needles round toe area and get a little pain at fingertips but nothing to write home about. By the way, when you said "Abraham", did you mean "Abraxane"?

I am still managing without regular pain killer tablet cocktail - have asked for more 🌶 pepper cream. That "stoned" feeling has just about disappeared. During the night can be a challenge with waking and pain but I just get up and walkabout a bit. Did take a dihydro during last night, not so much for the pain but in the hope it would make me sleepy!! The occasional one seems ok. I also have found sitting on my knees and then in between them (like a 🐸) seems to help! Oh the things we try!!

Best wishes to you. Have a lovely holiday ☀ 😎 in Scotland,
Chick 🐥 X

Member

Re: possible bone mets

Hello Jill,

I am assuming they have now admitted you. MRI results must have sounded more confusing and scary on top of everything else. I hope you are getting your op and they do that bleeding official bone biopsy. I find it hard to think that they would treat someone with highly suspicious bone mets in the way that you have been treated. On this occasion 💩 NHS performance.

Hope any pain is now under control and that you are being treated with the respect you deserve and in a manner that reduces your anxiety of being in hospital.

All the best to you as always,
Chick 🐥 X
Member

Re: possible bone mets

U take it that means you are getting your op Jill, 👍 sending you a virtual 🤗
Member

Re: possible bone mets

Have you experienced any pain in your arms or across your shoulders Jill x
Member

Re: possible bone mets

Oh 💩 yes Jill neck problems can cause pain in legs, flippin heck i bet you are getting really fed up i was shocked when i got my mri too my lower back things were nothing to be concerned about bjt i wasn't expecting what did show up try not to freak out over Jill like i did xx
Community Champion

Re: possible bone mets

Just gets better and better ....
Community Champion

Re: possible bone mets

In admissions unit waiting -MRI of spine through up multiple issues - some suspicious others that need dealing with but not suspicious - including a problem with my neck which may be cause of some of my leg weakness /arm symptoms -eek !!!
Community Champion

Re: possible bone mets

🤞🤞🤞- if you don't hear from me for a couple of days presume they have actually let me through the front door !!!
Member

Re: possible bone mets

Im getting used to it Jill trying not to think about it its not getting worse at any speed if that makes sense i bet you are fuming with the hospital its getting beyond a joke keep cancelling on you will keep fingers crossed you get to keep tomorrow app x
Community Champion

Re: possible bone mets

Hi Mishy ,your symptoms sound very scary and debilitating - I hope you get a date to get it sorted in a planned way rather than emergency - scary stuff .Had another aborted hospital admission today - was supposed to go this pm - didn't .Tomorrow at 11 is next date to be cancelled ...
Member

Re: possible bone mets

Hi Jill hope you are feeling a little better today after your rubbish last few days i hope the pain isn't as bad for you today x
Chick hi are you still ok doing the less drugs i am going on the CBD oil next week fingers are really numb strange feeling i can move them normally just can't seem to do anything wjth them even holding a knife and fork is a challenge as i keep dropping them gave up trying to read a magazine as i can't turn the pages 😨 i wonder how much of it is neuropathy left over from chemo maybe 🤔 i only had 1 and a half doxetaxol as i was allergic but i had a couple of Abraham which apparently can cause it too!!! Other than neck pain no new symptoms touch wood it stays like this till i have my scans and see surgeon i really don't want an emergency situation scenario i don't think mentally i could cope!!!
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Re: possible bone mets

Thank you Jencat .
Member

Re: possible bone mets

Jill, so sorry that you are still being messed about with your op and also that the bone scan looks like you might have bone mets. Just wanted to let you know that I'm thinking of you x

Member

Re: possible bone mets

Ih Jill just saw your post sorry you are having a rotten time im pleased your gp has been so good with you i really feel for you atm i really do, im sorry to hear it's looking like it could be mets i was really hoping the outcome could be different for you but am i right in thinking this needs confirmation from a specialist i do wish they would get their fingers out and get you on a treatment plan if that is what it is can the gp contact your oncologist
💖👭 for you xx
Member

Re: possible bone mets

Hello Chick good to hear from you and yesterday went well what a relief for you after a very long day, im pleased to hear you are also doing better without all the meds its quite sunny today still cold but hopefully it will stay like this for Friday looking forward to Scotland
Jill i hope you are ok any news on op or have you already had it?
Community Champion

Re: possible bone mets

Hi Chick ,had op postponed 5 times so far ! They now want me to go in tomorrow afternoon and stay overnight with view to have op Thursday - great -sitting around on hospital bed waiting in pain and no sleep .Rang GP yesterday as I was getting desperate with the pain - ended up having a weep about all that was going on - he was lovely and even got the painkillers delivered .GP had nuclear bone scan report and it looks like they are working in the premise I have bone mets and would be surprised at any different outcome .Just wish I could get on with some treatment now .
Member

Re: possible bone mets

Hello all, 

 

Gone a bit quiet on here - everyone OK?  Jill - hope you have been admitted by now and things are moving positively on.  Mishy,  I hope you are  packing for Scotland and relaxing watching more past episodes of GW. 

 

Well another "day from hell" out of the way yesterday.  Had ultra sound and FNA.  Not a good feeling lying in that ultrasound room almost two years to the day from original diagnosis. The flared up area around mastectomy site is a cyst (advised to leave and not have drained for now)  and the hard area where they took cells to test, showed up normal healing cells/scar tissue.  Sigh of major relief. 

 

Was on verge of tears when waiting for consultant at one point, but distracted myself by getting my Capsaicin cream out and putting it on.  It made me chuckle afterwards thinking if someone had walked in and there was me with a gloved hand rubbing my buttock 😂

 

To top it all, it is very possible that the cyst and other issue has been caused by the way I have had to lie on my left side for the past few weeks because of the "sciatica" issue.  

 

Whilst I was celebrating with a cup of coffee at the hospital cafe, I got a message from my neighbour either indicating my flat had been broken into or implicating that my place had been used to break into hers.  Turned out to be bad communication between her and her hubby but major crisis hopping was not what I needed at the time. 

 

Regarding the "sciatica" issue,  best decision I made was to stop all the regular pain meds.  Still a bit agitated and stoned but feeling more normal emotionally.  Also feeling a bit better physically.  The Capsaicin cream seems to be working it's magic along with irregular pain killer use (mainly plain paracetamol). 

 

At times,  the cream can cause very warm,  burning sensation (some hours after application)  but don't care because that is nothing compared to what I have been feeling.  Also went to Physio before hospital appointment yesterday.  The therapist gave me a massage.  Whilst wary of pain at first,  it actually felt quite good.  That is the first time I have felt positive at Physio. 

 

Take care, 

 

Chick 🐣 X

Member

Re: possible bone mets

Hello all, 

 

The following is for infoinformation incase   you want to try.

 

The "chilli" pepper cream as I call it, otherwise known as Capsaicin, is a POM according to the box, hence not available over the counter.  I got it prescribed last year when I refused Gabapebtin for nerve pain caused by Docetaxel.  I think it comes in different formats like gel,  cream,  or a patch.  I think the patch is a bit different and needs different handling.  

 

Ah Mishy.  Yes it's funny how we can react.  When I had my first post mammo and clinic appointment last Jan,  I was quite happy to go because I like the idea of an objective physical check especially with mastectomy.  I got told the mammogram result the same day with it in writing later.  They hopefully will say at the time of the ultra sound if anything suspicious and if  necessary do at least a FNA at the same time.  I usually have quite an assertive gob on me and to be honest,  this continuous pain is making me more of a grizzly.... 🐻 X

 

Chick 🐣 X

Member

Re: possible bone mets

Jill pleased the CBD oil has worked for you
Chick i hope everything goes well for you at your appointment tomorrow i don't think that feeling will ever go away no matter how much time has passed i broke down in tears at my mammo which was my 1st time back at the breast clinic i will keep everything crossed for you
Lije the sound of the chilli cream i wouldn't mind some of that
Jill i hope you get your appointment this week preferably tomorrow have you rang your onc team and out them in the picture Jill i remember when i was worried about some skin changes on my breast i rang my onc i had just had mammo and he had a cheeky look to see it was ok its just a thought but i thought thats probably what yours would do re your scans im quite forward like that as things can niggle away with me and i like reassuring!!
Community Champion

Re: possible bone mets

Good luck tomorrow Chick - have you tried CBD oil for pain ? I tried it for anxiety and found it helpful - I think you need to be careful that it doesn't interact with any other medications you are taking but worth a try ?
Member

Re: possible bone mets

Thank you Mishy and Jill,

 

Well who would have thought taking the drug cocktail for just over a month could be so damaging.  God help people who are on for long term and at higher doses.  I think if I had continued,  I would need an anti depressant on top.  OMG I have not remembered having dreams for ages but last night what a mix of vivid and real life like dreams. 

 

I found some "chilli" pepper cream left over from chemo when my toes were so sore that I could not walk . In pain last night so took a dihydro and rubbed chilli pepper cream from right hip to toes.  My leg felt on fire for a time but that is quite common.  Will continue 3x a day as don't think it can do much harm.  Don't know why I didn't give it a go before. 

 

Still waiting MRI results.  I would have thought if there was anything noticeable showing they would have said by now.  More concerned at the moment about ultrasound tomorrow.  Can't believe it.  It's 2 years this week that I got my first breast clinic appointment after finding my lump and now I am  finding myself back there again.  I hope I get a conclusion one way or another tomorrow and don't have to replay more waiting games.  I even have a Zometa infusion on Wednesday so it's hello to the Chemo Ward again.  Deja Vu and all that.....

 

Jill - hope you get some news soon

 

Chick 🐣 X

Community Champion

Re: possible bone mets

Oh ,Chick what a miserable time you are having - being in constant pain is soul destroying .My back has gone from painful to excruciating over the past couple of days and like you say even the max dose of strong painkillers doesn't seem to have much impact apart from to turn me into a zombie .I think it must nerve pain which would seem to be the most difficult to get on top of unless you can get to the bottom of the cause.Where are you up to with your investigations ?
Member

Re: possible bone mets

Should have added there that i was watching gw on catch up incase you all thought i was weirdly going off tangent there 😨
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Re: possible bone mets

Chick that siunds like you have definitely had a 💩 time i too stopped my meds as i was feeling like i was away with the mixer and as you say still in pain i now am just taking it when i really can't stand it any more and don't feel worse than when i had everything its terrible what they have been doing with you Jill really not fair that is definitely evidence of the cut backs isn't it hopefully it will be resolved next week i hope im ik for Scotland next Friday i don't want to cancel as i won't get money back and was really looking forward to it but hope im not going to regret going either i know its only 4 days
Oh to be young and carefree and be a risk taker not bloody now!!
Well im gkung to have some hot milk some lavender and chamomile onmy pillow and my sleepy cream from lush on so hopefully it will knock me out!! I know it sounds daft but i find watching gardeners world really relaxes and helps me destress there is something about Monty Dons voice too i could listen to him reading i swear they should pescribe that show on the NHS instead of all those tablets that dont even work!!!!
Member

Re: possible bone mets

Hello all,

 

Yes Jill - psychological and physical torture.  Hope you can have got some good distractions to take your mind off it.  Unfortunately, I have no wisdom to offer.  

 

I am feeling like the pits.  it  has been an absolute rubbish week.  I don't know how much longer I can deal with this continuous pain. I wish it would stop just for a little bit.  I felt so spaced early in the week that I stopped the Gabapentin.  Oh goodness, on Thursday I could not stop crying and just kept telling myself it was the pills.  I then stopped taking the rest of the cocktail.  It was not really making a difference to the pain now  and god knows what damage they were doing inside.  I lost 4 pounds in weight since stopping these past few days even though eating and drinking. I have been going around feeling like I am still stoned.My emotions are running high at times and I have been getting a bit hot and clammy,  I have taken a couple of paracetamols. The only release I get is if I manage to fall asleep.

 

I got 3 more piddly physio exercises on Friday.  Well too little too late.  And the only thing GPs can do is fill you up with more or higher dosage drugs.  To top it all, I noticed my mastectomy area feeling more tight and sore than usual and a puffed up area that I don't think was there before.  A BCN checked it Friday afternoon and after discussion with doctor, arranged an appointment for Monday morning  clinic when they would have the utlrasound available to do a scan.  I am hoping it is just something to do with how I have had to lie on my left side due to the leg and foot pain.  

 

Best wishes

 

chick X

 

Member

Re: possible bone mets

😠😠😠 i would switch off from it Jill if you can till they ring so you can wind down a little some lavender on your pillow i do that when i feel stressed xxxx
Community Champion

Re: possible bone mets

Not happening tomorrow am now ,could be tomorrow pm but I'm not holding my breath - it's becoming like pschological
torture now as nothing else can progress until it happens .
Community Champion

Re: possible bone mets

I think it just means the others are more urgent and in hospital - same happened to me when I broke my ankle - that time I was in hospital - got told 4 days running I was going to theatre but didn't .
Member

Re: possible bone mets

Bleeding heck Jill.  What a farce.  On the plus side,  does this mean that they are not as concerned as they first were ?

 

Best wishes to you and also to you Mishy, 

 

Chick 🐣 X

 

Member

Re: possible bone mets

Dear me Jill i bet you aren't happy at least you can eat today i suppose but still hope its lovely and sunny so you can at least enjoy the day xx
Community Champion

Re: possible bone mets

Not going today - maybe tomorrow am .
Community Champion

Re: possible bone mets

Thanks Mishy ,still not heard .
Member

Re: possible bone mets

Jill fingers crossed for today i really do hope you get in and no hiccups sending you a 👭💖
Community Champion

Re: possible bone mets

May have op tomorrow pm but won't know til 9am tomorrow ☹️