Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

Hello bon,and all the others,

 

You've hit the nail on its very head. I'm a multifactorial patient as I'm sure many are.....If you have been in pain in excess of 8 weeks, surely u should report in.

 

I have reported into oncology last Wed...& absolutely zilch response. Meanwhile I'm on Morphine sulphate, panadol ( hospice's nurses odea), and I'm adding Gabapentin at increasing levels just trying to rid myself of this pain. In this day and age, i feel 'we' should not hhave to suffer daily bad pain without help & support.

 

Are u an olde hand at this forum stuff?

 

Take care.....

silver xx

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Member
Posts: 1,598
Registered: ‎01-05-2012

Re: Bone mets - please join in

[ Edited ]

Hi AngelSam

You are very welcome to post here. Sounds like you've got sciatica which happens when something affects your sciatic nerve, Good that you are going to see your GP. Emphasise that you've had it for 2 months and don't be fobbed off. There have been stories on here of women whose symptoms were not taken seriously but it may well be nothing to do with cancer.

Good luck

Bon xx

Member
Posts: 62
Registered: ‎08-01-2016

Re: Bone mets - please join in

Hi I hope you lovely ladies don't mind me asking a question. I've had this pain in the back of my leg for a couple of months. It starts under my bum cheek and goes down to about knee level. It hurts when resting and tingles a bit. I will make an appointment with my GP but was wodering if anyone else had this. I was diagnosed in 2007 . Thank's Xx

Member
Posts: 360
Registered: ‎31-12-2016

Re: Bone mets - please join in

To add; I was achy, and very weak, chemo just destroys doesn’t it and it’s just the hope that is does what it’s meant to do whilst the rest of our mind and bodies tries to withhold the tortures !
Massive hug to you M darling lady xx
And massive big up to all you ladies on here fighting this most cruel lottery draw xx
Member
Posts: 360
Registered: ‎31-12-2016

Re: Bone mets - please join in

M
I was only on pac no carbo unless that’s what pac is ?
Still rubbish at the whole cancer language..
I was ok on pac it was Fec that nearly killed me .
I actually felt ok on PAC it was weekly though and if I remember correctly you are 3 weekly hun .
Sorry you having SEs they suck.
I popped on and saw your name and had to write , Not great at writing on my phone though so il pm you when on laptop xx
Community Champion
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Re: Bone mets - please join in

Yes, I’m fuming about that last point..,loads of love....Mx

Community Champion
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Re: Bone mets - please join in

Hi there Zena..how lovely to hear from youxxx

’of course you are very welcome here...this the happy chat thread.

 

i am now on carbo, have lost my muscle strength, ache both arms, and neck...stomach aches, eye sensitivity,

 

Did you get all or some of those.?

 

i think they are treating me as triple neg...but am hoping this works.

 

I recall how ill you were on Paclitaxel......l hope you are better?

 

please keep in touch and pm me if you like...I’d love a chatxx]

much love and hugs, Moijanxxxx

Member
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Re: Bone mets - please join in

Ps I had 8 lymph’s removed and 2Xwle to get Marcin’s . Showed it was in 3 lymph’s but chemo killed it all ..
Also I can’t spell ..
Also fuming that if we’ve had chemo they won’t give us stuff !!! Tell that to my 6 year old who wants her mummy .. x
I’m so scared of another cancer diagnosis and that il totally melt down ! ..
Member
Posts: 360
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Re: Bone mets - please join in

Hi all
Not posted in ages ( hi M xx)
I’ve bern having pain in my hip when resting now for over 6 weeks ..
I had bc her + diagnosis in dec 16
Also in lypmhs
Had some Fec which nearly killed me
Then 12 pac
Then 3 wks rads
And 18 herceptin through that all .
When on tamox ( vile for me )
Then had ovaries out as a precaution!
Then on anastrozole but I sweated soooooo much it was unbearable.. so I’ve been put exemestane which is less sweaty .. but just read nicky08 stuff about it and nhs not letting other drugs be used if you’ve had it before .. what shall I do ? Go back to anastrozole as I may need Exemestane in future?
I’m freaking out about bone scan .. sorry I prob should not be on this thread .. but then I’ve never been one to follow rules on here , for me it’s aboyt respecting each other and being about to say what we need too when we need to ... we get enough judgements from those non- cancer muggles xxx
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Re: Bone mets - please join in

Stillhere have pmd you
Community Champion
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Re: Bone mets - please join in

I agree with you Siver, most have abssoluetly no idea unless c has touched them.ihave heard the buses. Comment over. Again for 18 years now...what I have said back, was,, well at least you haven’t been given the heads up that there is a ? About the rest of your life, that is the hard stuff...we tend to live our lives as we wish, until c comes in, then that innocence is gone.

 

my very best friend, when she heard from me that the options for my treatment.  seem less now as I’ve had many...she said, oh, firsts x died and then y...now everybody is going! I love her dearly, but was annoyed...said loudly, well..you seem to be doing ok. And she realised and reverted to the bus comment.she was sad that friends are leaving her..,I quite understood..

 

hopefully you havent lympoedema as people in small droves used to. Sidle up to me and say what have you done to your arm? Quite rude, you could see them coming over in shops or on trains and. ask, or do you mind if I ask you a q? I said once no questions today sorry..and got..well I was only going to ask you...,,,,

 

in in the end I said..shark bite!  People ARE rude,

 

‘’hugs Moijan

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Registered: ‎19-11-2015

Re: Bone mets - please join in

I think its ever so sad that people don't treat us with tact and sensitivity but then again their flippancy might belie a genuine feeling of really not knowing what to say as Ca is rather a taboo subject.....i wish it was not so as their comments do actually hurt.....xx

Member
Posts: 1,598
Registered: ‎01-05-2012

Re: Bone mets - please join in

[ Edited ]

Dear Stillhere

I wish you could feel well again.

 

It's true people all die eventually and in all sorts of ways but this way is  particularly hard work (and I've barely begun)

People you encounter usually don't understand what's involved and there are only a few people that you can or want to explain it to.

 

love to all Bon xx

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Re: Bone mets - please join in

[ Edited ]
 
Member
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Registered: ‎16-06-2018

Re: Bone mets - please join in

Just to add to the thoughtless comments;

 

Telling my new hospital physiotherapist that although my cancer was terminal I didn't want to give up on trying to be less pain free. Her reply was "oh well, life is terminal isn't it?" 

 

I suppose there's no training for dealing with difficult conversations but I would have thought health professionals would be a little more careful with their choice of phrase!.

 

 

Member
Posts: 358
Registered: ‎26-07-2014

Re: Bone mets - please join in

Thank you, Silver, I'm just feeling down because my SEs are hammering me, I've been very lucky to be on a successful drug trial for 2.5 years but in the last 2 cycles my body has had enough and seems not to want to continue.

One drug is Ibrance but the other is an experimental one, Taselisib which I read has not shown much of a result on another trial, but too many SEs and I think Roche may be discontinuing it?

Anyway, mustn't grumble...would just love to feel well again, like all of us xx

Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

Hi stillhere,

 

I'm sorry u are being plagued by unpleasant side-effects. Are u in the midst of chemo.? Is there anything u can use to help u?

 

Yes, indeedy, peeps can be ever so thoughtless.....& they really do not think b4 they speak. Its hard when we so very often feel below par owing to various t'ments.

 

The whole shebang makes us emotionally vulnerable, too....xx

Member
Posts: 358
Registered: ‎26-07-2014

Re: Bone mets - please join in

Yes, that's my pet hate comment...."oh I could get run over by a bus tomorrow!" Seriously? Is that supposed to make me feel better? I'd take my chances with a bus over cancer any day... Only bettered by the classic " you must beeee positive, your attitude will help you win the fight!" Yawn, I can't even be bothered to explain secondary breast cancer...

..don't know why I'm feeling fed up, side effects have really kicked in with a vengeance, sorry! Hope everyone is enjoying the cooler weather xx

Member
Posts: 156
Registered: ‎19-11-2015

Re: Bone mets - please join in

hi sarah....

 

this is a shocker.....last X'mas my ex said...oh well, he could get run over by a bus....all i could say was...how dare u compare cancer to a bus!!! x

Member
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Registered: ‎18-03-2018

Re: Bone mets - please join in

Aw instead of brave - mmm resilient???!! X