62836members
330427posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Community Champion

Re: Bone mets - please join in

Stillhere have pmd you
Community Champion

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

Member

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

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

 
Member

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

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

Highlighted
Member

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

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

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

Re: Bone mets - please join in

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

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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.....xxSmiley Happy

 

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

 

 

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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.

 

 

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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



Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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. 

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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!! 

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

hi dear bon....

 

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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
Member

Re: Bone mets - please join in

Hi dear bon,

 

I need to wait 8 weeks from my lasr Denosumab shot, both before & after...danger of jaw necrosis...really does not bear thinking about.....many thx for asking.....xx

Member

Re: Bone mets - please join in

Silver, good luck with your tooth extraction. Do you know when it will be?

Bon xxx

Member

Re: Bone mets - please join in

Hi Silver,

 

Makes you wonder why they were ever doing them in the first place! Sounds like they’re doing all the checks regarding your extraction...Kate x

Member

Re: Bone mets - please join in

Hi dear kate,

 

Its all systems go with my tooth extraction. I mentioned to my GP that my monthly blood tests would end and her comment was that really does not matter! So my concern continues.....

silver..x

Member

Re: Bone mets - please join in

Hi Bon, I can understand your concerns about this, did they say what they plan to do about your bloods? When I didn’t have Denosumab for eight months I ended up contacting the chemo unit to ask about what I did regarding my bloods etc., reply ‘was why are you contacting us?’ I explained and was told to get in touch with my GP practice who happily obliged and did a full screen on me, but the chemo unit couldn’t or wouldn’t accept my concerns that at that point I was still taking Letrozole and nobody was checking anything whatsoever, yet I’d previously been checked every month. While I understood that was in part due to actually giving the Denosumab, they were assuring me it was still effective in my system. As it happened my Oncologist sorted things out but do think they’re trying to put more onto GP’s  As said I understand your concerns but can’t say I’m surprised as that experience made me feel it really wasn’t a priority, if you know what I mean. Overall I consider my unit a good one and as I’ve said here before really like my Oncologist and would be devastated if I had to change, but did feel let down on that occasion. Kate x

Member

Re: Bone mets - please join in

hello dear bon,

 

Gosh!!! I'm really shocked on your behalf. I'm also on monthly Denosumab injections. Whatever is the NHS world coming to?? I find it all a bit frightening.

 

I thought my once yearly CT sans were bad. I brought it up with my GP & she said that'll be for the whole of the S.E.

 

Hoping you find another way...I'd not trust myself....hugs

 

silver x

Member

Re: Bone mets - please join in

Just had a call from my chemo unit to say they are looking towards patients doing their own denosumab injections to take pressure off the ward. I was quite upset. It's just another step down the NHS's slippery slope. I asked if the GP practice could do it, she said no, they are not licensed. But i am apparently! I'm sure i read on here somewhere that a member of the forum was getting it at their GP. It was quite reassuring seeing someone once a month. You feel really isolated with this disease as you go from one unsatisfactory onc appointment to the next.Man Sad

Community Champion

Re: Bone mets - please join in

I did forget to say. Manicures can also put us at risk._ _As they push down on the cuticle hence bugs can get in at the nailbed...again all advice from my nurses

 

the LSN. have lists of therapists whocan offer,manual  lymphatic drainage which you’d have to pay for

 

best of luck

 

Moijan

Member

Re: Bone mets - please join in

Thanks Moijan....all that information is extremely useful. I'll get in touch with my local breast cancer unit. What a great place this forum is for sharing useful information.