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Bone mets - please join in

HelenAquarius
Member

Re: Bone mets - please join in

Hi alay got out of hospital yesterday.. Pneumonia and a pericardial effusion (fluid around the heart).

Was a lovely ward and I quite enjoyed my time there! Feeling better but the heart thing needs monitoring. 

 

Janette - fingers and toes crossed for you tomorrow :-)))). Hoover sounds good! Can't sleep so might go browsing in a mo.

 

Welcome to the new ladies, frightening times. I've been here since Jan 16 with bone and lung mets and once I got my head round things after a couple of months I've been having as many adventures as I can squeeze in.

 

Infact the next one is on Monday.. Me and new hubby are hiring a VW camper in Sidmouth and have 5 days of fun ahead of us but no plans. Carolyn or anyone who knows Devon/Cornwall.. Any ideas of where we could go.? I'm after quaint towns, nice scenery, not too bothered about shopping (as hubby gets too bored!) maybe a place of interest? Like a good museum.. Well he does! Happy to drive for a few hours each to get about.

Note.. I am in a wheelchair so no massive hills!

 

Any ideas greatly received.. Apparently I'm in charge of navigation. 

 

Helen xxx

 

rosie53
Member

Re: Bone mets - please join in

Hi Sharon, I've bought a Vax cordless hoover, got a great deal off the Martin Lewis website, should have been £299 but got it for £129....bargain! Only problem is I've got a week until delivery, oh well!!!😆😆
Janette xx
rosie53
Member

Re: Bone mets - please join in

Hi Helen, sorry to hear about the problem with your jaw, can I ask what symptoms you have? I've noticed I seem to get a kind of clicking jaw sometimes, don't know if that has anything to do with denosumab?
Janette xx
scratch
Member

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Natalie I bought a Bosch portable stick type hoover .it charge last an hour time yo go whole house.it was about 170 pound worth every penny dont even use my heavy old Dyson anymore
..
Had it about six months..its light as a feather and powerful..sharon.x
Carolyn52
Member

Re: Bone mets - please join in

Hiya Helen.
This denosumab is a worry with side effects but after two years its probably done its job and made the bones stronger anyway ? It doesn't pass through the system and stays in the body ..so I have been told.
I had to wait ages to start mine due to having a couple of teeth out first.
My oncologist said to eat loads of cheese and dairy stuff until I could get the injection
Probably end up with a heart attack and high cholesterol now !!
Hugs xxx.
Carolyn52
Member

Re: Bone mets - please join in

Oh Jeanette
Not having much luck are you ? I can't b faffed with researching things ..just rush to Argos ( across the road) and grab something ..pot luck these days with it all.
Grandsons tv broke too yesterday ..lucky enough had a spare.
Well you will b on the " scan results diet" tomorrow waiting for your results ...it's a good one ..loo visits BUT the jeans fit better for a few days !!!
Will b waiting to hear from you .hope its good and you get a glass of something ready to celebrate .
Hugs 💟💟
Helen_12
Member

Re: Bone mets - please join in

Hi ladies ,have had bone secondaries for 4 years been stable with arimodex and been on tablets and denusumab for nearly two years ,have now got osteonecrosis of the jaw and can't have the bisphonates now and there is no alternative ,really worried about not having bone strengtheners now .Has anyone else had similar or have any knowledge ,feeling so down xx Helen x

rosie53
Member

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Thanks Andrea!
hahaha I've been wishing my washing machine to break I've never liked it, sods law it will probably go on forever!!!
Hugs Janette xxx
andrea_carts
Member

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I'd be careful what you use tonight Natalie as they say things come in threes (Hoover, TV, ........)

Will have fingers crossed at 3:45 tomorrow for you!

Andrea xx
rosie53
Member

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Evening ladies. 

Thanks Carolyn, results appt at 3.45 tomorrow  so have got all day to sweat it out!!! I've had a banging headache all day think it must be the stress of tomorrow!  Well, I have finally ordered a new vacuum 😆 oh Carolyn you won't believe what happened last night, I was getting square eyed keep googling hoovers and reading reviews I said to hubby I've had enough of looking now let's go to bed and watch TV , 10 mins into Law and Order SVU and the TV blew 😁😁😁 so now I'm on the hunt for a new telly too!!

Hope everyone is doing okay, hugs Janette xxxx 

andrea_carts
Member

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You are so right, in Jan when diagnosed I was thinking,oh well that's it! I might see my hubbys b'day in Feb, but...

6 months later and I'm thinking of next years holiday...

It is a day at a time but I have so much more fun & enjoy life much more knowing I have a shortened expiry date!!

Just making Strawberry ice cream with son for his sleep over on Friday, it's Carter D'Or as we are Carters! It's the little things.....

🍧🍧🍧🍧

A xxx
bonariensis
Member

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Andrea, Great news. Once you find out it's not an immediate death sentence you can learn to live with it, especially a little at a time.

andrea_carts
Member

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Sitting in the garden sounds like a very good idea, I might even have a pimms, well it is summer..

I'm off to my first SBC support group tomorrow (in Sutton) does anyone else go there????

Andrea xx ☀️☀️☀️
Carolyn52
Member

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Hiya louboo
Thanks for looking up the difference between a pet scan and a ct scan.
They are all a nightmare for us when waiting for results.
Jeanette ..fingers and toes crossed for your results coming up too ....will sprinkle some fairy dust with the positive vibes .
Xxx
Carolyn52
Member

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Hello ladies
Been a bit late on parade today ..been to visit my sis in bude ..weather not that good for holiday makers ..always pick them out ..flip flops and wac a macs ...and a few bum bags !!
Hope everyone is ok ..sea air has made me sleepy plus a large lunch out on beach cafe !!
Hugs xxxx
LouBoo
Member

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Hey all

That's such fantastic news Andrea, I bet you've been floating round on cloud 9 since that result!!  It really does give hope to the rest of us - love, love, love the good news you shared!

Welcome Avrelia - I've been on this forum 4 or 5 weeks now and I hope you find it as helpful and supportive as I have found it.  Good luck for tomorrow - did you get to choose a wig today?

Hope everyone's keeping well (as well as can be expected at least!) - sun is shining where I am - might go and sit in the garden for a bit xxx

Carolyn52
Member

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Hiya funny face.
Sending you positive vibes for your results on Thursday but honestly you are like a little Duracell bunny with your energy!!
Just hope we get ibrance licensed here soon for treatment as it seems to get good results
Hugs xxx💙💙
Barton
Member

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Hello, Andrea - never apologise for giving us all good news - it's what keeps us all going! It's wonderful to read good news! So glad you have had such good results. Long,may it continue!

 

Hugs. Barton.x

funnyface
Member

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Andrea that's fantastic news!  Jeanette, I live in Pennsylvania, about 1 hour west of Philadelphia. I met a lady from this forum not long after I joined. Her name was Dot. She played cribbage on line with a lady that lived about 11/2 hrs from me. Her son also lived on the west coast. She has been here several times before I knew her.Her cribbage friend brought her too meet me. She was such a sweetie and quite hilarious. Then group of ladies from here started a private forum. They used to have meet ups and take my picture and place it on the table. A couple of us used to Skype. They have all passed. I miss them! Avrelia and Carolyn thanks for being good luck charms. I should have my results by Thursday. Vacation was great. We did our camping trip party weekend then went to visit friends for a day. Went to a big lake in the state of New York and ented a bow rider to play on the lake. Visited a museum and had some nice dinner outs. We were very limited in activities because hubby has an infected foot, with an open sore. Came home and had to have a 2nd skin graft to try and heal it, plus my knees are killing me! By the way just finished a year of letrozole and ibrance! No scan til October. FF

Marie123
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Hi Andrea,

Thank you for sharing your marvellous news, I was feeling a bit weepy today , but you have put a big smile on my face. Enjoy your moment , hugs Marie xxx

Waffles
Member

Re: Bone mets - please join in

Hi Andrea,
What brilliant news! I am so pleased for you. Bone pain is an odd thing. I had lots before my last scan and I was certain I had progression but it turned out everything was stable.
Avrelia, I hope everything goes well with your chemo on Thursday. Wigs are very natural nowadays. When I go to clinic appointments I find it impossible to tell who has their own hair and who has a wig.
Best wishes everyone xxx
avrelia
Member

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Andrea, that is so great to hear, hope that this stays the same for ever!!! You gave me hope today that is why I hug you so much!!!! I was very sceptical about joining that forum, but with each post I read I realize the oppposite!!! Keep hoping guys, we can do it

rosie53
Member

Re: Bone mets - please join in

Hi all. 

Andrea, that's great news, no wonder your so happy!! We always like to hear good news on hear it gives us all a boost. I see onc on Thursday for CT results so I'm hoping to be celebrating too! 

Carolyn, I still haven't got a new hoover yet, so fed up of looking on line and reading reviews!!.....its a good excuse for not being able to do the vacuuming though 😆

Hi funnyface, hope the bone scan went ok, 11 years is a very long time since you last had one!  Where abouts in America are you? We have friends in Michigan, we met them on our honeymoon 11 years ago and we have been writing to each other ever since, unfortunately we have never met up since. They are a beautiful elderly couple,  she calls me her English daughter and when I was dx with secondaries in 2014 she sent a teddy over with a card that read "everytime your feeling low give this bear a hug and and know I will be hugging you back" oh my word I bawled my eyes out when I read it! 

Hugs Janette xxxx 

avrelia
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Hi guys, thanks for all the supportive letters yesterday, tomorrow I have got an appointment at the Wigs clinic, have not even asked for one, but recieved the letter in my letter box, so ....I am going. I am still a bit dubious abot the cold cap, since I cannot imagine having it for that long on my head, and still, I do think I will loose may be some of my hair, so what is the point. The other yhing is that I have heard that the chemo will not reach the hair so that is why it might be preserved, but I have some mets on my skull as well, will the chemo be able to reach them if I choose to try the cap or not. 

My first chemo is planned for Thursday, and I think my period is due then as well, I guess that will make the side effects even worse, but I think that I am prepared. My cancer is Estrogen positive and HER2 negative as far as I know....

As it comes to work I plan not to stop. I do housekeeping in a hotel with my partner, who is going to do my job as well when needed, poor he, I love him so much,he is my hero...I have been advised by the nurse to contact McMillan citizen advise bureau, but since we are self employed and we will hopefully still recieve our full wages, is there any point for me to apply for any type of benefits? What do you think? Lots of hugs everyone, hope that each and every day of our lives is better than the previous.

andrea_carts
Member

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Good luck with the scan FunnyFace hoping it's just general side effects or aches and pains! Let us know how it goes.

Andrea
Carolyn52
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Re: Bone mets - please join in

Hiya funny face.
Don't think I've heard how your holiday went unless u posted somewhere on the threads that I don't visit !!
It was a big challenge ..such a roughing it holiday and I salute u .
I think in General they r cutting the bone scans down due to the radioactive stuff they pump in but eleven years is a bit too long !!
I'm thinking of you today ..no doubt being in the US ..you get the results virtually whilst u wait ?
Out of Pjs now .all showered and make up in place ..
Please post soon and let us know how yr scan etc went.
Hugs xxxxxx
funnyface
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Carolyn, This PJ girl was showered, dressed, and make up on by 5:45 AM. Have to be at the hospital by 7 to register for bone scan. Injection at 7:30, scan at 10:30. Hubby is taking me to breakfast in between, in what I call my lovely scan clothes! Not much better than PJ's. Black exercise pants with a white stripe and a white top. I've never exercised in them, only thought about it. I'm anxious over these results since I haven't had a bone scan in 11 years. Somewhere along my journey a bone met  was spotted on my back when they did a CT  of my chest. I was told in March that my bone met was stable. I told them that's nice but no one had to  me I had it. My new oncologist was supposed to check on it. The only thing she told me was yes it has been there. I have no idea when this developed. She said at first she didn't think I needed a bone scan bc it was only one met. I told her I disagreed. I said you only scan my chest how about the rest of me that hasn't been scanned in 11 years. My right hip has been aching, hoping it's just arthritis or the letrozole. Hope you all have a good day. Scorching here! FF

Carolyn52
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Andrea
What brilliant news and I can understand the few wines last night.
You stay in your Pjs girl ..you deserve to slob today after all the worry.
So u r a letrozole girl too ...long may that tiny pill control the little tikes that have squatted in our bodies ...
Hugs xxx



andrea_carts
Member

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Carolyn, still in my PJs too, being 'relaxed' today! A xx
andrea_carts
Member

Re: Bone mets - please join in

Hello All, hi to all the newbies, sorry you've had to join but this is a great forum with loads of supportive & positive people! I've only been a member for a week or so and have found it really useful!

So, I wanted to share my news! original BC Oct 14 left side, SBC Jan 16, only in Right humerus and op to remove it but, once it spread there is no telling where the little 'blighter' (!!!) has gone! Had bone & CT scan last week and got results last night..

NOTHING SHOWING ANYWHERE AT THE MOMENT!!!!

Feel a bit fuzzy this morning as has wine last night.

I know it's early days for me but I'm walking on air today. So Denosumab, zoladex & Letroxole I love you! My cancer was in 17 of 17 nodes and very high grade so the chance of it spreading were high!

And apparently the damage to my T7 (!) is being reversed (what damage?) by Denosumab- always had a bad back, maybe that's why!

I was still totally thrown by the SBC, I think it was being told it's not curable that sticks, nobody mentions there's lots you can do to control in... within weeks I was one my treatment plan & had op booked, I then felt a bit more in control. I take a day at a time and I'm now looking forward to the next three months (next CT in October).

You do 'adjust' to living with cancer and there's a lot of help & support but you sometimes have to look for it (The Haven, brilliant place, I've lost 18lb (8.2kg) since April through there amazing dietician, I like to blame chemo for the weight but it wasn't, I was just overweight!)

I wasn't sure whether to post as I know other people are just coming to grips with finding there SBC so hope it's ok. And sorry for rambling but I was convinced it would have spread due to all my aches and pains...

Keep as positive as you can & enjoy every minute!

Andrea xxx
Carolyn52
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Good morning ladies .
Thought I would just check in for roll call this morning.
Dont expect to hear from Jeanette as she is probably playing with the new Hoover now !
Jultx ..how are you these days ?
Sharon ..bet you have been cleaning after all the visitors at the weekend.
Confession time ...I'm still sat in my Pjs. .no excuse for the slovenly behaviour this morning ..feel fine just lazy ..come on carolyn ..shower ..make up and a visit to Sainsburys .
Hugs xxx😅😅
helen44
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Re: Bone mets - please join in

Morning all,
Just returned from Paris, watching the Tour de France - all those lovely men in lycra certainly lifts my spirits! ! There's been lots of newbies joining the cyber family and welcome to you all-really sorry you have found yourselves here but we are here to offer help and support.
Just reading through posts and a lot of discussion around Denosumab-I have been on this since dx Dec 2012, firstly every 4 weeks and for last 2 years every 6 weeks. Apart from fatigue I don't have any other side effects so consider myself very lucky having read some of the stories on here. Also on Zoladex every 12 instead of 4 weeks and daily exemestane and herceptin (but not pertuzumab). I was dx with bone mets from the start and liver mets 2 years later. The help on the forum is brilliant and if you can meet up with anyone in real life that is good-try the meet up threads, I met our lovely Nicky 08 on the Hampshire one and she is a real inspiration to me.
Good luck with your treatments everyone,
be kind to yourselves. My little mantra is 'be happy in this moment, this moment is your life '.
Take care, love Helen xx
daisyjane181
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Re: Bone mets - please join in

Hi Avrelia

I know exactly how you feel as I too was diagnosed with primary and bone mets at the same time.  That was in May 2016 so I am a couple of months ahead of you.  It's is the most scary time but as many other ladies have said once the treatment plan is in place you will start to feel a bit more in control.  I am currently on monthly Zoladex injections (have now had three).  Don't look at the needle and you will be fine.  It's just a large scratch, all over fairly quickly and then you forget about it for 28 days.  I am also on tamoxifen as my primary is very oestrogen positive.  For the bone mets I also take Ibandronic acid which I chose to take by a once daily pill.  I really didn't want to have to visit the hospital every month to have it by intravenous methods.  I take my little pill every morning first thing with a large glass of water and then sit and meditate or look at the iPad for a full hour before having my breakfast.  If you would like to talk or you think I can help you with anything then please just ask.  I would be very happy to share information.  My very best wishes to you.  Debbie xx

London1
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Sorry you've joined us avrelia, I was diagnosed stage 4 bone and liver soon after primary diagnosis Dec 2013 and had EC chemo first. (I'm 55) You will lose your hair after about 2 weeks after the first infusion, but you could consider the cold cap which can help keep the hair, but I couldn't face having a freezing head for 4 hours each time, but there are plenty of world on here which did do it and it worked! The nurses had to give the chemo to me by hand rather than machine which I think is normal as they needed to keep the flow under strict control, you have a mix of E and C chemo drugs one (can't remember which one!) is bright red and you pee red for a bit afterwards! They gave me anti emetics and a saline flush too intravenously, and the whole procedure took about 2-3 hrs. I was lucky and wasn't sick so stopped the anti sickness tablets quite soon after, but if you feel sick in any way keep taking the tablets! The worst side effect was sudden extreme tiredness but it didn't last long. Suggest if you possibly can to go for a walk, I had to go out and give my dog a walk and that really helped all side effects! You have a blood test before meeting your onc and getting the go ahead for the next infusion 3 weeks later. After 3 infusions I had a ct scan and nothing had changed but after the final one another ct scan showed everything had reduced by a half so it had worked! The 4th and 5th ones were delayed a few days as my white blood cells were low, and I had a refuced dose for the last one. Reducing the dose is very common as everyone reacts differently so don't worry. All in all it was very doable and it did work! I did have to go back to chemo 8 months later as tamoxifen didn't work and had Doxetaxol chemo then, which worked well. Im now on Letrozole and I'm very well at the moment and have just had a mastectomy to get rid of the primary too! One day at a time and you can keep having a good life despite all!
Carolyn52
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Hiya stress head
Barton has her denosumab injections every six weeks too as it ties in with other visits. I don't think its too much to panic over ..to b honest I would like to put mine back to six weekly as I'm having bone pain with mine on the monthly basis .
In Australia they do them quarterly I think and some of the US clinics do them every eight weeks from what I have been reading.
Xxx
Carolyn52
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Hiya avrelia
Welcome to our world !! At the beginning its all so scary with all the medical lingo and treatment names but you will get used to it all very soon !!
I would think ec therapy is a type of chemo but I'm not that knowledge able. Zoladex I think is something to switch the hormones off so that oestrogen doesn't feed the cancer. That's just a monthly injection ..nothing to panic over. If you have bone Mets ..they might put you on denosumab injections to strengthen the bones.
Take a day at a time ....try to take someone with you to hospital and write things down as its so much to take in at the beginning but you will soon get used to the hospital appointments.
Anyway stay with us and we will try to help you through it all with our cyber hugs !!
Xx
avrelia
Member

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Hi everyone, I have been diagnosed with BC last month. First they thoght it was a primary but when I did the scans it turned out that I had mets in my bones as well. My whole condition is good, I feel only a pain in my back and breast, and my lymph. I will be on EC therapy and on Zoda-wahetever the next month. Has anyone been through that types of treatment, how are you feeling. I am 37....Sorry, do not even know how to start all of this

stresshead
Member

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hi Scratch.(and others)..thanks for telling me about the four weekly denosumab injections...i think this is the norm but they said i could have them 6 weekly to fit in with my 3 weekly chemo cycles to save time and travel just for the injection. I only have one cycle left so i will ask about having them four wekly if they give me the rest from chemo they kep talking obout.x

stresshead
Member

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Hi everyone...i feel terrible...i have only just noticed the post about Tomboy....absolutely devastating news..so young. My thoughts and best wishes to her family.x

Carolyn52
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You caught me just in time before I go out for fly swats and mozzie bracelets ( they r brilliant ) against the war on the Damn things.
Son went camping weekend and got 17 bites ..they live him too.
Hugs xx
Carolyn52
Member

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You have asked the queen of Hoover's as I've had a few lately.
If u don't want the expense of a dyson ...I bought a nice upright from Argos ...Hoover spritz ..think it was about £80 ..but it picks up doggy hairs well too.
Hubby says its the best one we have had for a while.
Hugs xxx
rosie53
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Hi ladies, a quick question for the queen of shopping Carolyn 😆my hoover has packed in this morning 😠do you know of any good hoovers on the market at the moment?  Preferably a lightweight one? 

Hugs Janette xxxx 

Carolyn52
Member

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Hi Sarah
Firstly welcome to the private forum and the word games. Don't expect you have time to read and join our book club though !!
Phew ..it's so hard with little support when you have five young children and its
School and nursery holidays too!!
Sounds like your hubby is one in a million for support and help during this time with the chemo treatment. It's only people like us that really understands what you are going through. Steroids/hair loss/ sickness /horrid taste of most foods etc !!!!
Anyway there is always someone around these threads to listen to your rants and raves .
Hugs xxx
mrswright87
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Thanks I feel a bit better today.. I can actually get off the sofa without huffing and puffing and my heart racing 🙂
It is very difficult with 5 children and unfortunatley we dont have a good support system at all. its just me and my husband but i am lucky i have my husband to care for the children when i cant as dont know what i would of done otherwise. we have family around but none of them wish to help!
Carolyn52
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Hiya Sarah
Well hope you are feeling better today. With 5 young children it myst b so hard to actually get some peace. Hopefully you are having a lot of support from everyone.
Chin up ..hope chemo is doing what it said on the tin for you.
Hugs xxx
mrswright87
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Thanks everyone I spent all day on the sofa yesterday i have a cough and my chest hurts (i have lung mets) but im hoping its just infection causing this and not progression.. I always seem to get a cough after a round of chemotherapy (had some monday). no immune system sucks.

p.s My name is Sarah you can call me that 🙂
Carolyn52
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Apart from the chemo thread ..this is the busiest one ..sometimes a posting gets 100/ 200 hits so if you are just a lurker / reader ..feel free to post and introduce yourselves.
We are a friendly bunch and don't bite.
Xxxx
Carolyn52
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Oh Jeannie ..didn't realise the baddie bit was so high up !! It's going to b trickie but I'm sure u will find a way !!
Sharon
Nice to hear from you and I know the feeling your house must be like a bomb site but hey hoo ..it soon gets tidied.
I would spend my last penny on the kids ..it's nice to b able to treat them and help them out .
I used to have one of those fly swats that sizzled the flies ages ago but the dog ate it!!
Fly spray is horrid ..but this time of year they all seem to settle in my house !!!
Hugs xxc
jeannie19
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Carolyn, my sore bit is right between my shoulder blades so I'd have to wear knickers my gran would be proud of,lol......Or I just tuck it in the back of my bra, either way I'm gonna try them. We're off to stay with family in Vancouver, such a beautiful area. Hospital has delayed next treatment to let us go for 3 weeks. Looking forward to break in every sense of the word. Hope everyone feels better soon, jx

scratch
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Chocolates I used to lay in the sun for hours..but cant now.and the last two weeks have got to me especially the heat at night..xxsharon