Bone mets - please join in

[silverlining]

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

[bonariensis]

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

[angelSam]

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

[zena75]

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

[zena75]

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

[Moijan]

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

[Moijan]

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

[zena75]

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 ! ..

[zena75]

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

[Moijan]

Stillhere have pmd you

[Moijan]

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

[silverlining]

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

[bonariensis]

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

[lululu650]

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!.

[Stillhere]

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

[silverlining]

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

[Stillhere]

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

[silverlining]

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

[Sarahlew]

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

[Sarahlew]

Yes I agree with you absolutely hate being called brave - fIremen are brave as they choose to put themselves in danger to help others . I didn't as along with thousands of others didn't choose this but I am bloody determined to make the most of the time I have left whilst I feel well!. Don't get me wrong get my down days as I'm sure you do too just indulge myself those then move on.
It must have been such an awful blow being diagnosed with secondaries straight off - I had 6.5 years after primary then started to feel unwell so knew in my gut it was back. Fantastic letrozole is working well for you and hope long may it continue😊. X

[silverlining]

Oh, dear Sarah,

That is very harsh. I hate it when friends and family say that I'm brave as I just feel we don't have a choice but I take my hat off to you.

I was Dxd with secondaries in both hips as my 1st Dx....so that was a shock. I'd no idea. That was just over 3 years ago. I'm on Denosumab & letrozole......oh, after the initial onslaught of chemo. & radio.

Take care.....whst do we say instead of 'brave'??

best wishes,

silver..xx

[Sarahlew]

I was eventually diagnosed with secondaries may 2017 after a lot of back and forth since the jaunary. Secondaries in the liver bones and pleural lining (lung). I have a permanent chest drain that I drain fluid from my lung weekly. Currently on letrozole but awaiting change in treatment as some progression . Had carboplatin last may till August 2017 so done really well having year off chemo I thought. What treatments are you currently on silver?
Sarah x

[silverlining]

hi sarahlew,

many thx for your reply.....may i ask how long you've had secondaries & where?

Thinking about this; i think its his way as I've had so many of my questions just dismissed. Initially i asked about the 4 main sites...lymph, brain, lungs and liver & again his retort was don't think 'bout that. Methinks i'm going to have to inform him that i really would like more info.....my body, my life, as it were.

My garden is literally 'glowing' after all the wet stuff as am i......take care & have a good sunday.....xx

P.S this forum is ever so helpful...

[Sarahlew]

It can be daunting at first especially if you don't like needles but you will soon think nothing of it and be part of your routine! Do it with the nurse until your comfortable doing it yourself
Sarah x

[bonariensis]

Well it sounds like I should stop being a wimp and learn how to do the injections. Getting used to the idea now.

[Sarahlew]

Hi silver
My understanding of hormone status is that a score is given between 0-8 which indicates how strongly receptive to hormone the tumour is. My er score is 4 but my oncologist said that even lower levels can be responsive to hormone treatment. You should never have queries brushed off ask your doctor for explanation if you want to know or your breast nurse if your more comfortable with them.
I also do my own denosumab injections through choice as it gives me more freedom - I usually telephone the chemo unit to get my bloods results
Gardens getting a thorough soaking today which means the grass will need cutting again - enjoyed the draught and lack of growth!!! X

[silverlining]

could hear a pin drop on here...hoping one & all are OK....take care....x

[dragoncarine]

My partner does my Denosumab at home for me as oncologist thought that was the normal procedure - got the first one done in chemo ward and they gave me a pile of needles & sharps bin and we've been doing them ourselves since (about a year) It's really easy as it's not into a vein - so can't see why it couldn't be done at surgeries - personally I find it much more convenient to do it at home as then I can pick whenever suits me.

[silverlining]

maybe a 'silly' question

when I asked my oncologist about my pathological figures, he said don't worry about those. So i was somewhat dismissed.

What do the ER & PgR  numbers indicate? & do they infer anything important?

silver...x

[silverlining]

Hi Linda,

we have not met...so a wavy hello......x

Although I'm 3+ years in from my secondary diagnosis, i've very little knowledge about all these different drugs....

take care,

silver

[LYNDYLOO]

Evening Silver

I have been on this forum so long you automatically think people know about all the different treatments.

I see someone has sent you the link.

Thanks bonn.

Linda

[bonariensis]

Hi Silver

Read all about it.

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Xeloda-Capecitabine-Your-Top-...

[silverlining]

Hi Linda,

Many thx for your reply. I've been on monthly Denosumab since 2015. I'm beginning to realise how little I know about my various t'ments. May i ask....what is cape?

Have a good day....blissfully so much cooler....

silver x

[LYNDYLOO]

Morning Silver

Just a short reply to question about the injection we have for bone mets.

I have been on it since 2014. Monthly till last October then my treatment was changed to cape so it went to 6 weekly. I have been told it will be stopped.

Hope that helps.

Linda

[silverlining]

Hi one and all,

I'd like to know the longest anyone has been on monthly Denosumab injections. I found a NICE directive that said its monthly @ 120 for secondary Ca patients.So this 3 monthly thingy is really hot off the press. It costs £4,300 p.a. per patient.

With my tooth extraction forthcoming, I'm rather worried about the prospect of jaw necrosis....eek!

Many thx

silver x

[Kate21]

Hi funnyface, confusing is exactly right! I wonder if what my Onc said about still finding out about the effects for cancer patients, as opposed to osteoporosis, is part of the confusion? Maxillo Facial have always said to me that it stays in the body for a very long time, and they have probably had more years of seeing patients on it because of its longer use for osteoporosis. Have to say everything they have said about what would happen with my jaw has been spot on, and my Onc has been happy for me to follow their advice. Kate x

[nicky08]

To add to the denosumab info Prolia is used, as FF has said, for osteoporosis and is half the dosage of denosumab as the Xgeva that we are given for bone mets 60mg per dose to 120g per dose. So goodness knows how long our denosumab dose lasts for! Btw I was only being a bit nerdy about this as I had never heard of Prolia until FF mentioned it.

As has also been mentioned I'm sure if we do eventually have to get our Xgeva from our GPs the practice nurse would, I hope, be able to give it to anyone who felt they couldnt administer it themselves. From what I've seen over the years I've been having it it is no worse than the GCSF injections or Heparin injections I have had to self administer, and the nurses are more than capable of giving those.

Nicky x

[funnyface]

That's what I was told Kate! I wonder if another onc would say something else! This is confusing!

[bonariensis]

Thanks Nicky for your as always well informed comments. I would be more than happy to have denosumab administerd by GP or district nurses. The plan is that the drug will be delivered to me by courier so I could take it to the surgery and they wouldn't have to pay for it, just administer it. I think the hospital could try harder to come up with an acceptable solution.

Everyone seems to have been told something different about the lasting effects of d. 

love to all Bon xx

[Kate21]

Hi Funnyface, is that active for six months? Only asking because the Maxillo Facial consultant definitely said it can remain in your system for years, and that it can vary greatly. Kate x

[funnyface]

Hello ladies! I get Prolia which is a brand name for denosumab. It is given every 6 months to me for osteoporosis. Supposedly it stays in your system for 6 months. 

[silverlining]

This is pure speculation but I wouldn't be at all surprised if there has been a brand new NICE directive about the treatment of secondary breat cancer patients. My red flag is annual rather than biannual CT scans....I must admit to being a tad concerned about my monitoring. Max is a nasty beast....insiduous....xx

[Kate21]

Hi Silver and Helen,

While I agree that cost cutting is most likely behind this when I had to stop Denosumab for dental work and then later had to stop it for 8 months or so, my Oncologist assured me it wasn’t a problem and would continue working for some time. I also asked why then give it monthly and why the time scale for giving it varies so much and said it was usually done either to fit in with other treatment, or with the Chemo unit, and said if I wanted it alternate months that was okay with her. Then explained the drug had only been used for about 5 years, this was last year which would fit in with what you’re saying Helen, and they were really still finding out more about it for cancer patients, as opposed to it’s use for osteoporosis.

When I saw the Mac Fax Consultant, (I’ve usually seen the Registrar) last week for my check up I asked again what they considered the correct time scale for stopping Denosumab prior to dental work (not regular fillings) and while the Registrar has always said he personally thinks longer than most Dentists and Oncologists recommend, the Consultant said once it is in your system it can take years to clear and explained some patients are on it for years and have no problems dental wise, others have only a few doses and do, I’d only had 5 injections, my jaw healed but broke down later but is fine now. What always baffles me is why we all get the same dose regardless of weight? 

Kate x

[silverlining]

Hi helen,

Curious & curiouser....I saw my oncologist 10days ago. I've been on monthly Denosumab for 3 years. I was told I'd be getting it every 3 months.....cost-cutting is my take on this!! Sorry to say so!! 

[helen44]

Hi
Interesting to hear about Denosumab. A friend of mine who is sadly no longer with us used to have her injection at our local hospice.
This drug was licensed in late 2012, I was diagnosed Dec 2012 & was put straight on it in Jan 2013. Over the years I have had it 3 weekly, 4 weekly & 6 weekly depending on what other treatment I happen to be on. My onc is now moving me to 3 monthly injections. Apparently it stays in your system for quite some time.
Helen x

[silverlining]

hi dear bon....

Been cogitating....would your district nurse/macmillan nurse do the injections for u? I think this is really awful!!! xx

[nicky08]

Hi Bon and other Denosumab ladies

I think when they introduced Denosumab in 2013(?) that the intention was that the GP surgeries would take it on and at the time the practice nurses would give it rather than chemo units at hospitals. However I understand that this wasn’t rolled out partly due to costs as the GP units have a different budget to the hospitals and the drug costs would come out of their budget and, at the time as it was a new drug, the costs per dose were quite high. So, it remained with the hospitals and the practice nurses weren’t trained in how to administer it. I had hoped it would be given at my local GPs and had asked on several occasions but once I went back onto IV treatments I was at the hospital anyway so didn’t mind going up there as my Denosumab cycles were changed to fit in with my treatment cycles. It is a concern that if it moves now to the GP units that the necessary blood tests aren’t organised but assuming you are taking calcium tablets there shouldn’t be a necessity each time (I’m told you only need one every 3 months and it’s to check your calcium levels as Denosumab can affect that). The actual safety net we have with regular blood tests and knowing what the results are of other things being checked that we all like to know about and the contact with the chemo unit are things that no doubt the GPs and hospitals don’t take account for! I will wait with baited breath to find out if our local hospital is changing its procedures or if it’s just an isolated area.

Nicky x

[rosie53]

Hi Bon, that’s really worrying! There is no way I could do the injection myself, not good with needles, no massive phobia but i never look when they do my denosumab and zoladex. Like you i find it reassuring to visit my Christie unit every six weeks.
It’s a shame as it looks like more cut backs on the NHS of which I am very grateful we have!
Hugs Janette xx