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Bone mets - please join in

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Re: Bone mets - please join in

Really pleased for you Jellytot re the trial. Keep us informed how you get on with it.
Love Helen x
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Good luck jellytot got everything crossed for you. I also had good news in that my bone and ct scans were clear which will hopefully give all the other newbies hope

Suze -there is nothing worse than being in pain at work . I know only too well. Is there any update on your treatment for this? My radiotherapy is taking a while to have effect but 3 months on I am feeling slightly better

Wendy x

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Jellytot, That's wonderful news!

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Hello everyone
Jellytot ..think u will be the first lady here on the drug so keep posting as we will be interested ..I have googled it and it works the same sort of way as ibrance.
Suze
I'm sorry you are still in pain ..it's really miserable and u might have to go for the big guns painkillers rather than put up with the pain. Sounds like you pushed yourself too much so some rest and relaxation is needed. Have u tried "sketchers" type shoes ..they are full of bounce and might give u a bit of support ...I hate to use the swear word but u can't beat "crocs" either ..I almost bought a pair at boot sale recently but smacked by own hands and walked away !!
Hello everyone ...hope your Sun tans arnt going rusty with all the rain this week.
Xxxx☺☺
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Good evening Ladies - Very tired after my second day back. Spoke to Head - I still want to work but struggling with pain and tiredness. Getting some support so we'll see how it goes. It is good to be with the children though. 

Jellytot - fabulous news. I've heard about this triall and it does sound good. I think it was something on cancer research because they send me updates every so often. I'm on Letrozole alone and apart from tiredness and a bit emotional I feel ok. 

Carolyn - What can I say? Everytime I go to the bathroom I think of you and passing a pineapple and get the giggles! Still struggling. I've tried the heat pads and pain relief gel. To be fair, I think I overdid it at the weekend and then I dragged my leg round Manchester in the rain, to look at the flowers and hearts that have been left. Very moving and I picked up a heart for my friend's daughter, who was at both of the concerts. 

I've planned for tomorrow, so PJs for me now. x

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Wonderful, JT! Good luck with that. Please let us know how you get on. May you have few/no se's!

 

Hugs. Barton.x

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Congratulations! I hope it fulfills all of your hopes, good luck. Keep us informed x 

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JT, that's brilliant news! Really pleased for you, you must keep us updated with how you get on with it.
Hugs janette xxxx
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Some good news, just found out I have been accepted onto the ribociclib plus letrozole NHS "trial". I say trial in inverted commas as it has already been trialled, this is another wave before they look at rolling it out. It's apparently one of the most exciting advances in bc research in a long time so I feel very privileged to have got on to it xx

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I made rhubarb chutney today. Have to be very discreet about throwing stuff out. Hugs B xx

 

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FF
Once I get a plastic sack in my hand ..it's like red rag to a bull ..got to fill it!
We have a power washer too but I get soaked using it so it needs to be sunny and warm.
Have pm you ..
Hugs xxxx
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Carolyn, Yes me! I've been on a roll! Over the weekend I power washed both our decks have a small porch left! Did them with just water and they look almost like new lumber. Have a couple areas I'm not pleased with so now going to use a chemical cleaner on them. Then they are getting stained. I also power washed the siding on the back of the house and most if the front. Now, the ends need done. Not me!! That requires a big ladder! Today the weather is yucky, so working on kitchen cabinets. I have to place things to throw in an area to grab when hubby isn't here! He is a saver! I can't throw when he is home. He will be at work in the morning and then I can bag it up! Trash day tomorrow and I can get rid of it! I'm going through this house room by room! I wish hubby would go away for a weekend and my son could come over. We are a good throwing team. FF

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Well ladies ..the weather is rubbish today outdoors so having a clearing out cupboard day ...two large sacks of clothes, handbags and shoes so far ..to cancer care charity shop tomorrow ...
Next kitchen cupboards ..why so many plastic boxes ? Tins and empty roses / quality street boxes ..do I ever use them ? No so they are going too....
Anyone else got this bug today ??
Hugs xxx☺☺☺☺
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Thanks Barton and Moijan. Xx

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Hi Jellytot
I have had Denosumab since diagnosis in Dec 2012. It had just been licensed for use & I can honestly say that I very rarely get any side effects from it. It's quick & I have had had it every 4 weeks and every 6 weeks depending on what chemo I'm also on (currently eribulin). xx
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Hi everyone...sorry I haven been on much over the w/e.

 

re Zometa( Nicky) yes, I now have it three monthly...I know some can have it 6 monthly, but my onc

was reuctant as He is keen for the bone mets to be controlled. .my Request for three monthly or longer was due to my teeth recently needing treatment and was fearful about poss of jaw necrosis....a long term fear a lot of us have....but which could occur whilst on either treatment.

 

i once tried denusamab as had heard that there was some evidence it might help prevent bc, but the jury is still out...and upon my first dose, which was given alongside my first Eribuln, I got a bit of pain....so opted to go back on Zometa next time. Lots of ladies now have zometa 3 monthly as opposed to 6 weekly, which was whati first I  was on....and results are as good...apparenly.

 

regarding dvt.....and any blood clot, eg, pulmonary embolus or tia.....yes Cape has blood clots as a s/e as has been said and I got a dvt after my first two cycles of cape.... As cancer sufferers we are all at risk of blood clots anyway as cancer changes the clotting mechanism...however, I had had bc Initially in about 2000

( missed till 2001) and never had a clot until put on Cape. i dont blame the cape alone...as I was also takng high doses of prochlorperazine for sickness...and both drugs have clots as possible s/e. Was miserable at the time and lounging about on my bed....

 

re oncs v gps......I have a super onc at a specialist cancer hosp and I had noticed one ankle swelling up, which my super onc hadnt thought was remarkable....nor did the radiologist I saw for an mri, .....

 

but later my lower leg swelled up...knee to ankle...and my gp sent me to a kind of medical day unit at my general hospital to have an ultrasound which picked up two clots in my calf and one in my thigh......like Barton, I am on blood thinners permanently......about 8% of cancer patients are primarily diagnosed with clots first and then find they actually have cancer too. ( just a little aside for you!) recently my onc talked about the practicalities of maybe stopping the blood thinners if I were to be suited to a different chemo.....and my venous consultant has reiterated I need blood thinners for life.

 

incidentally...there are newer anti clot drugs out now...which are tablets....but which have no antidotes in case of a bleed, so short term heparin is much safer for us cancer sufferers just at the moment.

 

Babsy, you must have had a scary time....so sorry...hope all is sorted now xxx

 

hugs everyone

 

Moijanxx

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At least your GP is doing something, Babsy! Good luck.

 

Barton.x

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Thanks all for the warm welcome back!
Carolyn, I have sent you a PM back lovely. I did watch the OneLove concert last night it was very touching and emotional to watch, made me very proud to be a mancunian. The atmosphere there must have been amazing!
Hugs J xxxxx
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Once again thanks for kind concerns and advice. Rang cancer unit first thing this morning and was told by oncologist  to go to GP as planned, and unless I was unwell again to just keep my appointment to see oncologist on 22/6. GP not very impressed with A&E, she didn't want to prescribe any further medication cos of all the stuff I'm already on. She's making an urgent referral to TIA clinic who will test to find  out if I did actually have a TIA. A&E had said they would ask for a MRI scan but that could take up to two weeks. So it appears it's just a waiting game and let's hope I don't have another episode but I know to go by ambulance to A&E if I do. 

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Thanks Nicky for explaining the bone strengthener so well ..I did see jellytots posting and did think about trying to explain it but knew I would just do what I normally do and confuse everyone.
Just for info ...our hospital have virtually gone all denosumab now and phased out zometa type iv due to staff time savings ....
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Phew jeanette
I was worried about my letrozole buddy...I sent you a pm but it didn't get to you .

Well Manchester did the UK proud last night with the concert ..I have recorded most of it but did see Arianna sing " SOMEWHERE OVER THE RAINBOW" at the end ..very emotional . Hope moral is recovering in the town a tiny bit now.
Hugs xxxx
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Hi Janette ,wondered where you had gone! We had the same problem with password and when we sent for a new one it never arrived! Hence now Ladybird2.
Chris
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Hi rosie/natalie/janette - welcome back!! We wondered where you'd been! Just have to get used to the new username now.

Nicky x

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Hi ladies, not posted on the forum for around a week now, had a nightmare with my password! I forgot my original one then kept putting the wrong "new one" in so it kept getting blocked. The lovely Bonita helped me finally get back on.
As you can see I have a new username now (formerly natalie1) still been reading all the posts though but been unable to reply which has drove me nuts!
Babsy, you really should get in touch with your onc regarding TIA that must have been very scary for you.
Jellytot, at the beginning of my treatment I was given alendronic acid, a pain in the backside tablet that you have to take whilst standing and around an hour before food and drink, I complained to my onc about this saying it is really difficult to use that bone treatment and she happily changed it to denosumab but did say that "guildlines" say that she had to offer the alendronic as a first line treatment as it's cheaper!
Hello and hugs to all Janette xxxx
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Hi jellytot, sorry I seemed to have caused you to question ZA as opposed to Denosumab. As the others have said Denosumab is more costly as a drug but I do wonder what the overall costs are for ZA as it involves more nurses time, more sterilisation, more equipment etc and I think some trusts now use Denosumab as the go to drug because it is so quick to administer etc. They both do the same job but in different ways, I'd ask your oncologist about the reasoning behind their decision. It also doesn't seem to matter which type of BC you have as to why you would get one against the other, it seems only to be the oncologists decision/choice. I think Moijan has now said she get ZA every 3 months but initially at least it is every 3 -4 weeks so it could be your onc would move you out to 3monthly eventually? ZA is an infusion given over 20 mins (I think, having never had it!) but the actual time would normally be longer presumably, ie get cannula in, get saline going, administer ZA, followed by saline flush - correct me anyone if I'm totally wrong on this! Denosumab is a subcutaneous injection ie under the skin, no veins involved, usually given in a pinch of skin of the stomach or upper arm, time taken about 2 mins - sterile wipe to area, injection then a plaster if needed. Having had pamidronate which is another IV bisphosphonates and then a tablet form of bisphosphonate before having Denosumab i can honestly say I have few if no side effects from Denosumab and it is the quickest, least intrusive treatment I have had for bone strengthening over the 9 years I've had bone mets.

Nicky x

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Hi Babsy

Sorry I didn't se this yesterday and am only adding to the posts today. I'm not sure if Cape caused the TIA but you should definitely see your GP, or go to the dreaded A and E, to get something sorted. I had an underlying heart problem whilst I was on Cape in 2013 and ended up with a TIA although I doubt if Cape caused it as such. I woke one morning not able to get my words out properly! I was diagnosed with a TIA and spent 2-3 days in a stroke ward whilst medication was sorted to stablise my already problematic heart. I found that oncologists and cardiologists know therir own areas of expertise but don't know much about the other's. It was a horrible time for me and I needed it sorted. My lovely oncologist, who has since moved onto research, rang around his mates (as he put it!) and got me an immediate appointment at the cardio-oncology unit at The Brompton hospital in London. This is a research unit that has been created entirely because cancer patients are living longer now with the disease but suffering the consequences of the medications, a combined approach is necessary. I still go up there for regular check ups but they literally saved my life. I can give more details should you need them if you PM me. Btw I didn't suffer any long term effects from my TIA but you should get it checked as you are probably more susceptible to having another one if not treated correctly.

Nicky x

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Hi Babsy, just replying to your text about getting help. I had an horrendous time as no specialist cancer nurse at all at my hospital, as you say gp's don't want to know, have no contact details for oncology doctor. However, I contacted our local hospice and bingo! Everything has changed, they are lovely and helpful with everything. Could you try yours?

good luck

ramade xxxx

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Hello Babsy, you are definitely doing the right thing in contacting your GP and your Onc! Please let us know how you get on.

 

Hugs. Barton.x

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Thanks Bon, don't even know who my breast care nurse is. I know they initially only had them attached to the breast care unit but not to the Cancer Macmillan centre. I think they've got one now but I haven't been given the contact details. B x

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Hi Babsy, Sorry to hear about your TIA, hope they sort you out with some medication. I agree entirely about not knowing who to go to to ask about problems. GPs seem reluctant to act on anything that could possibly be cancer related.  My onc's secretary is only there 3 days a week and the whole department is short staffed. Maybe breast care nurse is the best first stop if you have a good one.

Jellytot, Denosumab is more expensive than Zometa but the under the skin injection once a month is surely better than an IV infusion and I think the side effects are less.

Hugs to both. Bon xx

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Hi Jellytot! So far as I'm aware they both do the same but zometa is cheaper than denosumab.  Zometa is given by iv (I had it 3 times) but as it was so hard to find my veins (tried 4 times before they could find it!) they changed me to denosumab which is given by injection.  I'm not sure which one is more effective as my understanding is that they both do the same type of job (strengthening bones). 

 

I'm sure other ladies here will be able to give you better info than me.

 

xxxx

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Hi FF, no haven't had any unusual pains, just the normal ones. I must admit I didn't go to Accident and Emergency until Saturday morning as I couldn't face it on a Friday night and got a real telling off from staff there. I'm going to ring my GP first thing tomorrow morning and as someone with cancer they will give me an immediate appointment. What I find frustrating in the UK is the fragmented service you get as a cancer patient and always difficult to know who to go to for any particular problem. I've asked my oncology service to create a chart which highlights which medical team you should approach cos you can get passed from pillar to post. I appreciate your concern xx I'm also going to contact my oncologist first thing on a Monday morning . 

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Please could someone help me understand the difference between having zoledronic acid and denosumab? And why my onc would have recommended ZA over denosumab? Am ER+/PR+/HER2- if that makes any difference xx

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Babsy, I googled it and yes it can. I agree with Barton, your Dr may want you to take something besides aspirin and maybe further testing. Have you had any leg pain or pain else where that could be waving red flags at you that you have missed. The blood clots from other places can travel to the brain. Please don't put this off! I know how sick of drs and pills we can be! FF

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Thanks Barton. X
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Hello Babsy, no, not heard of this as a possible se of Cape, although one really well known one is DVT - if a small clot formed in your brain, that could cause a stroke. You might have to go on proper blood thinners instead of just aspirin. I had a DVT in my right calf in October 2014 (on Cape), and have had to be on blood thinners since.

 

Hugs, and wishing you all the best. Barton.x

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Hi everyone. I'm been a bit lapse in posting on this forum but do regularly read the posts. Had an interesting weekend with having a suspected TIA on Friday evening ( mini stroke). Don't know if this is chemo/ drug related but have been told that I do need to get in touch with my GP first thing on Monday morning to ask for low dose aspirin. I'm also going to email my oncologist on Monday to make her aware. Anybody ever heard of this is relation to being on Capecitabine? Have to laugh really that it might not even be cancer that kills me ha ha. 

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Suze57, Emla cream. Have a good weekend. FF

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Hello all, I joined a week or 2 ago and then disappeared but I'm catching up tonight and will reply properly...
Just wanted to reiterate to newcomers and newly diagnosed that it does get easier and this thread is really helpful and positive. I'm 39 and by bone mets were diagnosed a month ago now. So many good things have happened and nice times in the past month as well as plenty of tears and sad bits.
Warm wishes and gentle hugs to all.
Abbey xx
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Hi Littlelis83, I think you must be the same Lisa that I've messaged on YBCN (I'm Joanna C). I'm also newly diagnosed with mets and 33. I know exactly how you must be feeling, big big hugs xx

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Lots of chocolate will help that pineapple problemxx

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Love your description, Carolyn! But thats if you can get it to "pass" at all!

 

Hugs. Barton.x

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Hi Nicky, just wanted to throw in a comment re Zometa/Zoledronic acid!  Am now on it three monthly

so it really is less of a tie than the alternativr....apparently research shows its just as effctive...but you need to build up to it.

 

...Moijanxx.

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Hello suze
Just remember the golden rule with the heat pads ..stick them to your underwear and not your skin like Jeanette did ..very painful to remove !!
I just rub deep heat everywhere there is a ache !!
Hope you enjoyed your welly wedding and I bet the feet got hot in the sparkly wellys though !
Hugs xxx
Ps: Jeanette you are on radio silence ? Are you ok and hope the itchy scalp is better.
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Yes Barton, I agree the painkillers mess my tummy up and i'm already on Omeprozole. I hate taking pills and like Carolyn i try ro keep walking. I think ttats what has happened - I've donr too much whilst I've been away. Finding it all very frustrating but I will find a way to deal with it.

 

My doctor did offer liquid morphine and I didn't want it because I've reacted badly to morphine in the past. Didn't realise I could use it as an emergency for bad days, Crissy. 

 

I will go to pound shop and try the heat pads. I have used the deep heat at times but never sure whether to put it on the painful leg or on the back where the pain originates. Need to see orphopedic consultant soon. 

 

Brightening up a bit here. Emjoy your weekends. I'm busy writing reports. 

 

 

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Hiya Barton
You have just hit the nail on the head with painkillers and constipation ..hence the reason I hate them too !! Nothing worst when you have pain and then get bunged up and have to pass sonething that feels like a pineapple !!
Hugs xxxx
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All this talk of painkillers - can I just say, ladies and gentlemen - please remember that a lot of them can cause constipation! I know, from personal experience! This can make any pain you are in worse.

 

Welcome to the "newbies" - not that you want to be here, and, of course, in the nicest possible way, we would rather you weren't joining us too (for your benefit)!

 

Hugs and best wishes to all. Barton.x

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Hi Suze,

 

My onc gave me a bottle of liquid morphine solution to use when the co-codamol didn't take the pain away in my hip and lower back. It does help, just a 5ml spoonful every few days or so when the pain gets me down.

 

I cannot believe how many of you out there, at such a young age, are going thru this awful, cruel disease. 

I had my primary in 2013 and secondrary March this year and I am 68. I don't think I could have coped if It had been 20-30 years earlier. My heart breaks for you having to go thru all this in the prime of your lives. Stay strong and positive.

 

Lots of love to you all, have a great weekend xxx

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Hello Lisa
Welcome ...my heart goes out to you as like jellytot and others you are so young to be dealing with all this .
The one thing you will have to do until a treatment plan is sorted out ..is lots of hospital visits you will find you are tooing and froing a lot so will need childcare support with your little boy.
Well stay with us and we will all join cyber hands to help you through this .
Hugs xxx
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Hello ladies
Phew how busy is this thread today?
As far as hip and back pain is concerned I find the stick on heat pads very good or just a hot water bottle.
The heat pads are two for a pound and stick to your underwear ..they last for eight hours and although feel heavy ( know how babies feel now with full nappies !!) They do help .also the rub on gels like deep heat and ibuprofen do help too rather than popping painkillers.
I have hip,pelvis and spinal Mets so walking far is quite hard but I do like to keep a bit active ...this week I went to a boot sale in a field, on a hill and with long grass ..self inflicted but the heat pads worked a treat the next day.
Hugs xxx