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Bone mets - please join in

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Re: Bone mets - please join in

Cyber attack..?

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Had typed a post but it bggrd off, so was wondering..,.,,,it is so difficult to log in at present....do we think the site is cyber attacked?

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Dear DJD 

 

hi ladies, I SO  agree with Carolyn, you are very sweet to be concerned about us, but you need to move on

I was treated for my initial, poor prognosis primary in 2001..... And I too had 10/12 years NED.

 

Imagine how very sad it would have been to spend those years worrying about the future...I learned to sing, learned to paint, became an NLP practitioner and learned loads of other things.,,,,...try to feel blessed now, with another chance, another go at doing the stuff youve always wanted to do xxx

 

very best wishes,

 

Moijan💚💚💚

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Hi Carolyn

Yes, not so much naps as sleeps! I can nod off for three hours maybe more at the dop of a hat. Always could nap but since chemo 3 1/2 yrs ago 30 mins is not enough. It plays havoc with body clock since I am frequently then wide awake till 4 am! It's v disruptive and I'm not sure how to best manage it.

Pippin

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Hello ladies
Does anybody have daytime naps? I've never done before but the last week ..I lay on my bed afternoons .pop on tv and boom boom ..asleep for 30 mins or so!
Is this just a growing old thing ? Or a cancer thing?
Hubby can nod off 3/4times a day in his chair and I normally tut ..but now I'm becoming a "power napper" too !!
Xxx
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Yes, Optimissy, I agree cancer can be a wake up call.I was diagnosed in 2007, having found my lump on my 50th birthday and like Carolyn, I had a long period of NED. Now, as a fluke, I've been diagnosed with secondary bone mets. Cancer taught me to look after myself, it gives you new values. I'm an optimistic person usually and once the little sods came back, I realised it is what it is and know that there are treatments out there to help. Cancer taught me that I am beautiful! It is hard to stay positive - I've just had a couple of low days but then I had them before the cancer. Try to live for the day and don't listen to th st devil on your shoulder. As Carolyn said, treatment for prime cancer has improved greatly and they are learning more and more. I like to think I'm a pioneer for treatments that one day my children will benefit from, should the need arise. X

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Thanks Caroline. A very positive post. So glad to hear you have done so well for so long. I'm pretty philosophical about it all most of the time and fears do not dominate, but I think at this early stage post-treatment most of us will have the odd "what if" thoughts now and again, I doubt we'd be human if we didn't, but I certainly aim to appreciate "what is" rather than worrying about "what isn't". In an odd way, my cancer could have been a bit of a wake-up call - I've made a couple of lifestyle changes, and  another will occur before the end of the year. Thank you so much for posting and best wishes for your ongoing treatment.xxxxx

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Hello ladies
Welcome ...I understand your fears as I remember feeling the same at my primary in 2004 but you have to try to rise above it all if you can. The primary bc treatments are so much better and thorough now ...a lot more scanning etc is done.
I had eleven very happy healthy cancer free years before mine came back in my bones to party ....during this time I worked full time ..became a nanny three times ..took nice holidays etc etc so try not to let cancer fears overshadow your life ..I know its easy said.
Hugs xxxxx
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Hi DJD - I'm at much the same point as you are - WLE & SLNB, radiotherapy ended Feb and now on Anastrozole. Feeling lucky that it was picked up early etc. but also sometimes have thoughts about recurrance or SBC, and wondering how I would know I had it if I felt well, as I did before diagnosis and do again now. I'm pretty sure that after treatment that is the number 1 concern we all have, and just this morning I was thinking that from now on all future plans seem a bit "provisional". Being, like you, a "glass half-full" type, I came to the conclusion that I am actually in no worse a position than I was this time last year when I had no idea I would get BC, 'cos all plans are provisional for everyone- we really could get knocked down by a bus, that old cliche, or be on that holiday flight that disappears into the sea, and lately aquaintances around my age - 60s -are dropping like flies of all sorts of horrible, non-cancer conditions, so on balance I'd rather have had mine right now. I think these thoughts we sometimes have are normal and I'm sure that over the years as we get our routine annual mammos done they will recede a bit. I guess we just have to get on and book those holidays, get that dog (in my case) and enjoy today. I suppose it's all part of that process that we have been going through. Enjoy this sunny (where I am anyway) Sunday. xxxx

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Posting here as it's such an active thread!  I'm just coming to the end of active treatment for E+ BC.  Had mastectomy, RT and now Anastrazole.  Know I'm very 'lucky' as it's the best cancer to have!  My prognosis stats are excellent, so why am I so anxious about SBC?  My BC was picked up at routine mammogram.  I had no signs of symptoms.  How will I know it's come back?  Family and friends are considering me to be cured, so why do I keep mentally adding, 'for now'...  I'm normally 'glass half full' person. 

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Hi Crissy,

 

i agree with the others, go on your trip. Wear your flight socks and sleeve( I also have arm lymphoedema) took my o/h to oz a few years back and insited we have a walk every hour and do our excercises!

 

Was on a jumbo then..and at the back found a whole row of fellow travellers all doing their excercises....also took small doses of aspirin , but now on blood thinners, so cant do that, but next time will still do regular walks and drink  loads of water.  Xx

 

i hadnt had a dvt flying, but got one since, whilst on Cape....the trick is to be as mobile as poss and drink loads of water...

 

Best wishes, enjoy your flightxx

 

Moijan💙💙💙

 

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Bandit. Great that you are on this trial and following the guide lines. 

I Googled it and it seems to have good feedback and working well.

Goodnews that it is now available on the NHS and so it should be, thank you Pfizer.

 

Hope all goes well, keep us informed. xxxxxxxx

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We all start of frightened but within reason I just carry on as before. I have 3 onc's dealing with my case & I loved the advice one gave me when I asked about massage etc which was "have what you want but don't tell the therapist you have cancer 'cause they won't treat you". I am on a drug trial which was they only way I could get Palbociclib (Ibrance) in the UK although I understand that it is available now on the NHS paid for by Pfizer but as you are on your good regime this is currently not of importance to you. Being on a trial means that they are very strict & I can't even pop a vitamin pill but while it's working I'll do what I am told - well almost. Xx
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Hi Bandit,  Will take your advice about the socks.

I think I am panicking as I don't know how the bone cancer if going to affect me in the short/long term.

I have cancer in about 7 places down the spine and 3inch dia on my scull.

I have Lymphedema in my right arm so the the sleeve is on most of the day. It's my popeye arm, without the anchor tattoo.

Your right this we should get out and do whatever, live life to the full, but just a bit frightened at the moment.

xxxxx

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Hi funnyface, thanks for the info.

We booked a Carribean cruise just after christmas to travel in November, before all this crap started .

It's for my hubby's 70th in November and we are due to fly from Heathrow to Miami, 8-9 hr flight. 

After hearing about the DVT problems we both said we should cancel it but it's for a special birthday and he deserves it as he has been my rock. We have until  August to cancel it so we will see how things go and decide then.  xxxx

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Hi Crissy. I don't often post but do occasionally lurk hoping to see that everyone is doing ok. I have monthly Denosumab jabs & also have done 8 cycles of Letrozole & Palbociclib. I often fly and in fact am currently in Miami. To get to LHR from where I live in Wales also involves a 2 hour car ride each way. One of the s/e's of Palbociclib can be a DVT. I get my compression socks from the chemist (your Dr will give you a prescription) & you need to measure your lower legs to get the right fit. If you have had lymph nodes removed I would advise a lymphedema arm sleeve for the flight. I feel it is important to continue living as normal a life as we can. I have mets to almost all my spine, some ribs & sacrum but take pain relief everyday and go out and do what I want/can. Enjoy your holiday. Xx
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There you go crissy ..advice from the master of cancer treatment !! (FF )
Suggest you put on those gorgeous flight socks though ( Nora battys) for extra protection!!!
Glad you have coped with the bone juice ..it's the fear factor of side effects thats always makes me nervous !!

Well ..suddenly thought its mid May and I am normally the flip flop queen but haven't had warm enough feet yet to think about wearing them! Want some sunshine and warmth !!
Hugs xxx

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Crissy, Happy to hear you had some fun!! People who gets those jabs fly all the time! I woukd just make sure to move my legs around, do some stretches and don't cross them. You and your hubby need to get away! Where are you headed?

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PMOL, I had my second jab on Tuesday. I had aches and pains after my first but did not know this may have been due to the jab, just thought it was all part and parcel of the cancer. Today i'm a bit achy but not as bad as the last few weeks, may do a spot of light cleaning.

 

I had the same set of appointments five weeks ago and it was so difficult not to think about them, but chocolate and wine helped.

Keep us informed on how they all go and have a super break with the family.

xxxxx

 

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Thanks for your support and all of you for your comments, much appreciated.

Today is the first day in the last few weeks I have got up and felt normal (normal for me anyway). 

Yesterday I went out with my sister and our husbands for lunch,had a few drinks and laughs, the food was good to and It's the first time in weeks I felt that the gloom has lifted.

 

Need advice on a couple of things please, 

Can I still get my hair dyed, the cancer is in my scull ?

The Denosumab leaflet says it can cause deep vein Thrombosis. We have a long haul flight book in November. Has anyone done a long flight and was it OK, don't know if to cancel the trip for my hubby's 70th now or wait a while? 

 

Hope you all have a good weekend and thanks for being there. xxx

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Suze, Glad you got away from"C" with your friends! Makes life more bearable.

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Carolyn, Mine is a yellow lab.

 

PMOL, First "jab" over! Yeah!!

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Hi girls! Had the first denosumab monday and so far so good, although I do have some aches and pains but thanks to you all I know that I was to expect this.  

Today had the appointment letters for ct, bone scans and onc appointment... trying not to think too much about it but  you all know the scanxiety starts kicking in...

anyway, enjoy the sun and cleaning (trying to do a bit at a time) but up to date with the washing and ironing!!! Back working 6hs to trying to keep this up beat.  Going away for half term and can't wait! It will be super exciting as the girls dont know where we are going 😀😀❤️

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Been out with ladies from school tonight. Been struggling to eat on scanxiety diet but stuffed with pizza and ice cream now and not a thought to c all night. Think I might sleep better tonight. Could do with one of you ladies to clean my house. Still struggling with the wonky leg. X
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FF
That all sounds a nightmare for you ..especially if u get a "off" day ..phew.
Hubs and I spent 4 hours just doing lounge, pulling out furniture and cleaning behind etc etc.
I am a huge lover of dogs but both my son's have mucky ones ..black lab ..that sheds mountains of hair and boxer that snots, dribbles ..even found snot on curtains and lampshades !! Every time he shakes his head ..it's like he's pebble dashing the room with dribble !!
Hope u are coping with e and e ...always scary but maybe yr knees will be better.
Hugs xx
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Cleaning and gardening spree across the pond too! Dogs allergres kickerd in big time. Hair comes out in clumps. She has to get a bath every other day with special shampoo. I bath her, put her out on deck. Then I wash the bathroom rugs and her towels. Clean the bathroom, wash her dog bed and vacuum house. Then I shampoo carpets in LR and our bedroom. I keep all other doors closed so she can't get in. This is exhausring! FF

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Hiya
Like you Jeanette ..I'm having a washing/ spring clean session this week....been doggy sitting on and off over two weeks and as much as I love sons dogs ..they are mucky creatures ..it's a wander they arnt bald with the hair I found behind furniture etc !!
Achy this morning so will pop a paracetamal so I can finish my cleaning ..onwards and upwards as they say !!
Hugs everyone xxxx
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Hi Moijan, yes that makes lots of sense to me. I had hardly any s/e with tamoxifen but now on letrozole and I get most of them! 😡 down to hot sweats, achey bones, stiff joints, constantly tired and feel 100 year old most of the time......BUT they are my "best friend" because they are kicking the backside out of the nasty little blitters at the moment, so yes s/e can be rubbish but they can be a small price to pay to stay "stable Mabel" and compared to some of the nasty s/e you can get with some of the chemo treatment mine are nothing!
Beautiful morning here in sunny Manchester, washer going 😆
Hope everyone is keeping well.
Hugs Janette xxx
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Hi Ladies,

 

as I seem to be having progression and feel like being honest...today, if you are oestrogen positive and respond to say, Letrozole, then later on the bc is resistant, then it might mean, possibly, that it has mutated and found a new fuel/driver.....if that happens then its quite likely that re visiting it may not work...as in my case......

 

..if you think about say antibiotics and bugs, if you stop the antibiotic, too early, then the bugs get resistant.....and that antibiotic wont be any use for that bug anymore...

 

I have been on three drugs, now, where they were doing just fine, until i had a break....then the bc got resistant to them and no longer useful.........all these wretched drugs have side effects, some worse than others......so I personally would rather suffer a little more pain and try to counteract it with painkillers, than give up a drug which is working!

 

but...I know its not easy, love and hugs...Moijanxx

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Great news crissy
Relax and enjoy.
Welcome back Jenny ..hope u stay with us this time ..always good support and kindness from real people.
Xxxxx
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Hi eeveryone, it's been a while since Ive posted, so just saying hello.

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Hi crissy

great news from your scan, that it hasn't spread elsewhere, and I hope this has given you a lift and you are not feeling quite so low. Obviously you are still being treated with tamoxifen and denosumab for bone mets so any anxiety hasn't magically gone away but with any luck you will learn to adjust to your treatment and be able to get on with living, as we all have managed to do with a SBC diagnosis. We are here for support so do keep coming back with any questions or help you might leave, I think many of us find it a good place to sound off and know it's not affecting our loved ones who are also under stress.

Good luck with the tablets, they can keep the little critters at bay for many years, as Janette has already said, I had nearly 5 years stability from anastrozole when my mets were diagnosed in 2008 and, you're right, there are plenty of other tricks available to fool the nasty C cells!

Nicky x

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Dear Crissy,

Great news. You can relax now
Srilata
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Great news Chrissy! Hoping you can unwind some now! The stress of this cancer is worse than the cancer!!

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Glad you had good news Crissy. I know lots of people who have remained stable on tablets. You should get a good nights sleep now. X

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That is good news, Crissy! Long,may it continue, and may your cancer be as thick as you wish!

 

Hugs. Barton.x

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Great news crissy, hope you can relax a little now, just keep faith in the tamoxifen, it's surprising just how powerful these little pills can be and can keep the little blitters at bay!......enjoy the sunshine!
Hugs Janette xx
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Hi All, just to let you know how today went.

After having another sleepless night and geting up with an upset stomach I got to my appointment looking a total wreck. 

The news that nothing was showing in my organs, except for a thickening in my stomach wall which could be precancerous and they will keep an eye on it, was somewhat of a relief.

I have to carry on with Tomoxifen and the 4weekly injection of Denosumab until such time that these stop working and the clever cancer gets immune, I so hope my cancer is as thick as S***.

Then as you know, they try something else, ??? 

It certainly help having this site and reading all you journeys and knowing that there are lots of lovely people out there going thru the sameish. 

Love, hugs and kisses to you all, xxxxx

 

 

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Hi Suze yes I couldn't get my full prescription for letrozole on Saturday at Boots.she said manufacturing problems but she couldn't order me a different brand either(I have accord) so not sure what is going on.didi 

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Hi Chrissy

Good luck with your results today. At least you will know what you are up against and hopefully will have a treatment plan which you can focus on. We will all be holding your hand today.

I was 68 when I was diagnosed with sbc in pelvis and skull. My breast care nurse could see I was a total wreck and got me referred to the Macmillan psychologist at our hospital. It wasn't a magic bullet but it was a relief to talk to someone who knew about these things. Maybe there's someone like that you could talk to. I'm 70 now and still stable so don't despair, read other people's stories and they will give you hope.

A big hug today B xx

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Hi Crissy,

It is really difficult coping with the initial shock. But afterwards you learn to accept. This forum is a great comfort to know you are not alone in this journey. Helps a lot to share your anxieties . Antidepressant can help but only for a short time
When they don't work doctors keep increasing the doses and there is no end to it
Love and hugs to you and i am sure you will feel calm with time
srilata
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Hi Chrissy, I agree with the others a, hold off on the antidepressants if you can. I think too, once you get results and a plan you will cope better! Chat, rant and scream with us, it might help! FF

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Oh, meant to ask. Has anyone had problems getting Letrozole. Went to Boots tonight and they said they couldn't get it and to try Tesco. 

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Good luck tomorrow Crissy. Xxx

Jeanette, could it be stress? My scalp sometimes gets dry for no apparent reason. I tend to only use simple shampoo now. 

Night, God bless everyone 

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Hiya Jeanette
Have you had highlights done recently and may be started an infection ? Mine's itchy but not infected .have u changed your shampoo ? Could u have nits ? Ha ha .
Otherwise ...can't offer any help really?
Gorgeous weather today here ..really hot and yes done two loads of washing again ...
Hugs xxxxx
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Crissy - just a quick note to wish you all the best with tomorrow's scan results. Will be thinking of you.

X

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Evening ladies, quick question, I posted just over a week ago about problems I had with my scalp. It's been dry and itchy for a good while now and about 2 weeks ago it got infected and I was given antibiotics which cleared it up nicely.....3 days after completing the course and back at the doctor's again today with it infected again! This time she gave me a 2 week course and also took a swab of it to send away.
I'm convinced it's to do with my treatment/dx as before all this i never had any problems at all! I questioned it with my onc last week and she dismissed that theory! Just wondering if anyone else has had similar problems since starting treatment?
Hugs Janette xxxx
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Hi girls - so injection was on my arm and was painless 😅A bit of discomfort afterwards but the same as any injection.

 

Crissy I'm sorry you had to join us (and all the new ones, sorry but too many names to remember and my memory is pants at the best of times!!!) Agree with the rest, try to find something that will take your mind off for the next couple of days... my children 10/11 have managed to do that as they still need feeding and help with school.  And I don't thjink it gets "better"... once you have the treatment you fall into some sort of normalcy but it will hit you at the most unexpected times and my best advice is to just cry your eyes out, scream (if it helps and doesnt scare the neigbours 😉) and accept all he hugs and cups of tea friends and family are willing to give!  Xxxxx❤️ 

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Hi Crissy, welcome to the forum, we all understand your worries and fear. Oncology appts NEVER get any easier unfortunately, you just learn to cope a little better. Please feel free to ask any questions /concerns there is always someone who can help.
As for the antidepressants, for the moment I would hold back, it's early days and you are still taking it all in.......however, if in the coming weeks /months you feel you are still struggling then please take your GPs advice on antidepressants, there is always a stigma about this kind of treatment but believe me there are lots of people who take them (I work in a pharmacy) and they can be a very good treatment long or short term depending on the individual.
Hugs Janette xxx