Bone mets - please join in

[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

[silverlining]

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

[bonariensis]

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

Bon xxx

[Kate21]

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

[silverlining]

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

[Kate21]

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

[silverlining]

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

[bonariensis]

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.

[Moijan]

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

[silverlining]

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.

[Moijan]

Siver

i have lymphoedema. My hosp has a department which 1/confirms wether it is lymphoedema, 2/. Measures it

regularly on a special machine, 3/shows you how to self manage, so you don’t get infections. 4/prescribes compression garments.

practically, what I’ve learned is, not to lift  with that arm.wash it am and pm moisturise as bugs can get in through dry skin if minute cracks. Appear, have my own towels and soap just for me. Protect hand when gardening.

mine has worsened over the years and cellulitis is now more frequent even with all those in place.

i hope this helps and maybe ( hopefully) it’s not permanent.

Moijan

https://www.lymphoedema.org/

Lymphoedema Support Network - LSN

Home

Welcome to the Lymphoedema Support Network website. If you have developed lymphoedema, you are not alone; recent research suggests that lymphoedema affects at least 240,000 men, women and children in the UK. Although lymphoedema is a long term condition, with the right information, support and treatment there is much that can be done to improve both swelling and other symptoms. 

The LSN is a registered charity run by people who live with lymphoedema and is the largest information provider about the condition in the UK. This website forms part of our work and contains information for patients about the condition and the experience of living with lymphoedema as well as information for health care professionals looking to support patients with lymphoedema. Should you not find what you are looking for here then please do not hesitate to contact us.

[silverlining]

To one & all,

On Thursday, my G.P. confirmed lymphoedema in my upper arm. She didn't say any more. Do I ignore it?. I'm not sure what to do....some numbness in my hand, too.....

With many thx & kind regards,

silver...x

[Moijan]

Ff thank you 

vinorelbine was easy but didn’t work for mexx

loads of love,

moijan

[Moijan]

Thank you Sarah...

iwas avoi ding a port for years, then decided to plump for one...ff and others all told me how it helped...had one put In. In About feb.....never looked back..once in no more soaking arms in sinks etc!

not every hosp here uses them tho so a+E trips are still veins and trauma.

they often will put in a central line or a picc...last would limit my activities a bit so opted for port...all under skin so can swim if allowed, but I don’t 

have a think and ask to see a couplexxx

Moijanxx

[Sarahlew]

No moijan never had any hospital admissions or issues with high temperature whilst on carbo. I did have anaemia but had injections to boost red blood cells so avoided a blood transfusion.
Ff at my hospital they use iv unless you are having lots of chemo and views collapsing. If I have more iv chemo I would definitely need a Porto cath as my viens are pretty knackered now!! I wanted to try and avoid Porto cath as that corbited with chest drain would make it very difficult for me to get holiday insurance I would imagine? However far easier to have iv chemo than the struggle to find views! X

[funnyface]

I have a question ladies. I saw cannulas being mentioned and traveling. Why do they give you cannulas vs. a portacath. I haven't seen a cannula in use at my cancer center in many years. Even in 1995 with my primary they wanted to place a portacath. I refused it back then bc I was only having 4 treatments of chemo. Then surgery. After surgery they would decide if I needed more chemo. I told them if I needed a lot more then I would get one. For those 4 treatments they just did an IV each time. Why aren't you getting protracted? Mine has been in for over 12 years. They flush mine every 3 months when not in use. I love having it! I would hate a cannula! FF

[funnyface]

Sarahlew and Moijan, Another chemo in tablet form in vinorelbine (navelbine). At least I was told UK as tablet form. We don't have it here. I haven't heard anyone talking about this chemo for awhile. Years ago I saw it on here as treatment. It was the easiest of treatments for me and worked 5 years. I started with 3 weeks on and then one off.Then I saw a few people doing it every other week. I talked to my onc and he agreed to it. It wasn't so bad every other week.

FF

[Moijan]

Let us know how you get onxx

M

ooh and were you ever admitted to a+e on carbowith high temp?

last time iwas the nurses bunged up teicoplanin, another nephrotoxic before asking me or chatting to the doctor. I was on Paclitaxel then tho not carbo..not sure wether kidneys can  cope with both..,theytailor the drug dose to your kidney function...At my hosp.

moijan🤗😘

[Sarahlew]

Yes I had insomnia think it was more the steroids though (still don't sleep great! ). Took zolpidem which did help 10mgs I think it was. Yes the trial he mentioned is at my local hospital I did say I was prepared to travel if he knew of any other trials I could access.x

[Moijan]

Have just had third of first cycle it’s made me a bit miserable, but the premeds always fix that,,,,not sleeping well.thanks for askingxx

Yes, I almost said ask about the trial first as that will maybe give you some extra months/years as well, they take liquid biopsies (blood)and look for markers in them, I had fulvestrant looked for too...no markers for the trial youmention but yes for fulvestrant...but didn’t work for me.  ,, do they do that trial where you are..I know marsden do ..you might neeed to consider with your onc whether to be referred to another hosp. Or wether to 

plodd on...again your choice, has to be, know it’s hard xxx

Moijanxx😘😘😘

[Sarahlew]

Yes feel happier guided by the experts. I have recently changed oncs as my last one left and I have more faith with my new one and did appreciate him phoning so we could discuss it further. He's going to find out more about a trial using palbocillib and fulvesterant first then start next week ( the trial is not up and running yet so unsure of criteria didn't want to start e/e until establish if it's prior use is permitted prior to trial. I was dis appointed last year to miss getting access to palbociclib and letrozole as by the time my onc referred me I was too unwell to take part in the trial.
How many sessions of carboplatin have u had and how are u finding it x

[Moijan]

Hi Bon,

‘’I was chatting to a friend yesterday about. Our meet up in 2016

we both recal lthat get together with fondness.....and the Tea we had in John lewis

Ah well, maybe again one day xxxx

Moijanxxx

[Moijan]

Ps sounds a good oncxx

i can always reach mine via his pa and get email replies, but never phone calls. He sounds very good at communication xxx

mx

[Moijan]

Are you happier now, that he has stepped in? Helpsa bit doesn’t it xx

iidont know, but I think they are tablets...which might be travelable, it might be good to see how you feel on then.i know some people have had side effects xx

very very best of luck...when do you Start? Would love to hear how it goesxx

m🤗

[Sarahlew]

How fantastic you have been to Oz! . Yes had insurance with mia in march to vegas cost 800.00 as I also have a chest drain but was only on letrozole then - but was worth every penny😊. Would really love to go to Asia so will see . Onc rang this morning to say bloods ok apart from raised tumour markers up from 69 to 150 so he advised may be worth trying e/e combo first x

[silverlining]

Hi bon,

Many thx for your kind wishes. Are u still in the Orkneys? What a treat to be living in Devon. I've never been but heard all good things.

The heat seems to be building up again. My poor postman looked like he was melting!! I keep hearing the witch's wail in Wizard of Oz....'I'm meeeeelting'....

When are u setting off home?

xx

[Moijan]

No...I wanted to go back to Oz again, I emigrated there in my 20s.

but I’m afraid, I was latterly doing one of my projects...an hnd in fine art and delayed going, then cape failed me, was tied to a cannula....ever since really

if you have travel plans...I’d chat to onc, and if he’s happy, scout around..,there are good companies who will insure us...they alway asked me’how Many times a year do you see your doctor....well, have other doctors for other things so sometimes the answer puts them off, or they will cover anything non cancer related..which as you know.’ Is a bag of kittens’ but we can get insurance..I never skip it, because if I were to become ill in transit, the plane would stop and may put me down in Asia or other - then needing to be medivacced home..,which they do by giving you a plane to yourseef witt doctors and nurses..

.that can cost in the £40, 000  range...apols if you knew thatxxx

Last time I went back to oz....just before I became metastatic, a company asked me for two year printout from my gp and insurance cost me £1060 !  But I went because I really wanted to go.

good luck whatever you choose 🦋🤗

moijan

[Sarahlew]

Thanks nicky that's reassuring to know love my travels😊. Hope our lovely summer contines so you can have some trips here in between treatment. X

[kirky_68]

Hi Sarahlew.

I too took Cape for about 20 months and tavelled frequently - Majorca, Canaries and even Las Vegas. I got insuance thru a company called InsuranceWith. I have lots of mets and take blood thinners and morphine so always got referred to the underwriter but eventually get a decent quote. In common with a lot of the specialist insurers they will only quote within 2 months of travel.

On IV chemo with a PICC line now so can't travel and really miss it. If your condition is stable and you're on oral chemo and you ONC approves I would say go for it.

xx