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
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
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!.
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
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
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
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
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'??
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...
Well it sounds like I should stop being a wimp and learn how to do the injections. Getting used to the idea now.
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.
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?
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....
Read all about it.
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....
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!
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
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.
That's what I was told Kate! I wonder if another onc would say something else! This is confusing!
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
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
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.
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
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?
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!!
hi dear bon....
Been cogitating....would your district nurse/macmillan nurse do the injections for u? I think this is really awful!!! xx
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.
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
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
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.....
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
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
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.
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
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.
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.
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.
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,