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Bone mets - please join in

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Re: Bone mets - please join in

Hi girls,

 

It's been a week since my oophorectomy and I finish my antibiotics tomorrow, hooray, they have been making me feel so very sick. I'm recovering slowly but I have to remind myself it's only been a week!

 

Today I had a CT scan to establish baseline results for my trial drug. I had to have a blood test first to check renal function before the scan, 4 attempts later... Plus it was in my arm that was damaged in my oophorectomy by the leaky cannula. Ow ow ow. Then for the CT scan, I had to have a cannula put in the same arm. More ows.

 

I have two days grace and then on Thursday I have a bone scan (another cannula) and another blood test (for the trial drug) so I shall be like a pin cushion come Friday! Are they able to use feet or anywhere else does anyone know? They can't use my left arm because of lymph node removal. I don't need a picc or port as I'm not having regular IV drugs other than my zometa but that's every 6 weeks.

 

Hugs to everyone that needs one,

Jelly xx

 

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Afternoon ladies, hope everyone is keeping well, I've just been out for lunch with my good friend and finished up with a big fat chocolate pudding for dessert on the first day of my diet.....that's willpower for you!
Moijan, don't know if you have read any previous post from me omg itchy scalp has been the bain of my life lately, to the point where I have been close to tears, I have itched that much it's got infected twice. I spoke to my onc about it and she kind of poo pooed the idea that it could be anything to do with my treatment/disease.
Hugs Janette xxx
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NO my friend you are definitely not the only hypocondriac on this site ,as this is one replying to you.

Reneex

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Hello Moijan
I replied to your text this morning ..sorry was asleep.last night ...the itchy problem is a strange one isn't it ..I'm only on letrozole but sometimes I itch ...no rash but once I start can't stop .. like a family of ants is partying inside and is doing the birdie dance ( oh I hate that dance !!l) ..I usually just jump in shower and boom boom it's gone.

Now .I know I'm a numpty with medical things but I think that mets in the bones can be itchy ..before i got dx ..I itched the top of my leg a lot ..later on a huge hole in femur from mets dx .. I might be talking rubbish so ignore me ladies as nothing proven !!
Hugs xxx
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Hi Moijan

Yes, I itch too but skin flakes off and is red underneath esp on hands and corner of eyes. Nearly drives me mad - its the little things that get to me.  I also imagine all sorts of horrible things things! Presently waiting for scan results.

Julie, welcome back, I missed you too.

Suze, big congrats so happy for you. I feel you shot out of here like a bat out of hell and I don't blame you. I deliberately waited a while to post as if you really are out of here you prob won't be reading this. I've mulled over this a while. I certainly (and possibly some others here) just occassionally indulge in the thought that the diagnosis is wrong (onc puts me right immediately and 99.5% of the time I accept the diagnosis) but it is wonderful to see that it actually happens sometimes! You have returned to the "real world" and returned to work though still I think with your symptoms (which I do hope get better) and you now have tremendous insight into what is is like to be stage 4. My personal opinion is that you have earned your place on this site and maybe are in a position to contribute something valuable as some of us return to work (and I speak for myself here as I am struggling to explain or not explain to various colleagues and bosses what has happened to me and what I can and cannot do and then cope with their reactions, and I struggle with all of this). What I am trying to say is that to leave the forum is great and I wish you all the best for the future and don't want to try to drag you back here or burden you in any way but if you did return I would welcome you back!

Pippin

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Yes, hi Julie D xx

Does anyone on this thread ever get days when they itch all over, with no rash?

I've had a couple recently, days apart!
Today I've got backache from sitting badly in front of the Tv on Friday and have convinced myself it's a kidney infection with NO. Other signs at all - am I the only hypochondriac on the thread too?

Mx
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Hello Renee
Yep I often have to take my laptop back to factory settings when my grandchildren have been dabbling on it and loading down various things ...glad you are back with us again.
Hope you are comfy again with pain etc ...and just think how much money you have saved on not buying a new laptop now ..splash out on something else nice.
Hugs xxx
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Well hello stranger ..Julie. .welcome back ..it's been a long time since we heard from you ...
Hugs xx
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Hello ladies, sorry I  havenn't posted for ages but I  do still read your posts even if I  don't always comment, Welcome to all the new members, I  see you have been well looked after by the lovely women on this thread. It's rotten any of us have to be here but thank goodness we have each other for support!

 

I'm still on Zometa. Denosumab is the new kid on the block and is now considered the 'gold standard' treatment as was Zometa when it first came into use. I  was offered D but as I  have a port which would still need flushing and as Z has kept me stable for 7 years I  saw no point in messing around with something that was working. I  can't comment on D but I  know that Z can give you achey joints. I  have know people on Examestane who say they have aches and pains with tht at times. I  think these aches and pains are often a mixture of the medications, the way we might hold our bodies differently etc and the mets themselves. Sometimes our bodies adjust, sometimes the pain comes and goes and sometimes we have to take pain meds regularly. I  would say to anyone suffering, talk to your medics and see if they can help, don't just go on suffering when you could be more comfortable - I  have pain patches which I  supplement when necessary with co-codomol.

 

Bone scans use radioactive dye and give a more detailed pictre of the bones, abnormal areas absorb the dye faster and so any problem areas show up as 'hot spots'. .Not all hotspots are necesaarily cancer though.So for diagnostic purposes bone scans are often used as well as CT scans.

 

I  will try to resume my regular postings and am sorry I've been a bit abscent, life sometimes gets in the way Smiley Wink. Have as good a week as possible and hold on to hope. xx

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hi carolyn,

nothing to do with bone scan ,but just thought i would let you know my lap top has been playing up for days ,so decided to buy a new one ,then grandson came and took it right back to factory settings,hey ho its as good as new,just wanted to say i am still here .

reneex

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I had bone scan and CT scan on diagnosis. CT scan doesn't really show the bone mets very well, bone scan is significantly clearer but no good for soft tissue mets. Just had my second CT scan, but they have not suggested a second bone scan, I think it's because it's easier to spot changes in the CT scan when they know which area to look at.

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Hello remade
A bone scan is a whole body thing of bones which shows "problem spots" ..not always cancer but I had mine at dx and haven't had another for 20 months ..the ct scan is only the torso ..no head, legs or arms.
It's painless but you have to have this radioactive stuff injected and then wait two hours ..it takes about 30 minutes but radiographer is sat beside you all the time. I think I read somewhere that they don't do them so regularly as ct scans ..but different hospitals do different things ..
Hugs xxx
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Bone scan

can I ask if anyone else here with bone mets has had a bone scan. I also don't understand how this would show up anything different to a ct scan.

anyone ??

thanks in advance

ramade

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Hi Sylvie and welcome. I am another lady with now extensive bone mets and the hip pain you decribe I really sympathise with, I find it difficult to walk and so the impact on life is huge. I agree with Carolyn about hotties and heat packs, also take paracetamol which is pretty harmless. I found slowing down really hard and fought against it with all my mighty might ....and felt worse, now I have had a big talk to myself about that silliness. Take a little walk when you feel you can, if it's a really good day maybe nice shopping trip if you can, it perks me up no end. I am also very confused about whether the pain is from treatment or denoumab or cancer, I don't think anyone knows. Anyway you've come to the right place, people here are all going through the same thing and are the kindest, most helpful people, I wish you all lived next door as I can always manage to put the kettle on.

hope this helps and big hugs to you

ramade xx

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Joelliek

Here is always a good place to post, you will always find a listening ear and a hand reaching out though we may sometimes feel at a loss to know what we can say. Your poor mum, and poor you having to watch her going through all this. You must wish there was one person who was in charge of all her problems that you could speak to. Hugs Bon xx

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hey ladies,

so today is the first erubilin session not quite sure what been going on.

im finally here with mom, but we have been back and for to the ER first it was an infection where the biopsy was done on her tibia. and since shes been throwing up everyday were not sure if its the anti biotic or not? we tried changing it and still same problem. not sure if its the pain meds? if its the cancer? all i know is that nthg seems to be getting better....hopefully this chemo does the trick

im not even sure where i should be posting anymore if its the erubilin thread or bone mets or lung mets or liver mets.....

joelle praying for a cure xoxo
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Hi all

Last time I went for a denosumab injection I talked to the nurse about denosumab and zoledronic acid. She said how much better d was than z because it was easier and less invasive to administer and probably had fewer side effects. I said that I knew of people on z and said this was probably because it was cheaper. She said it was probably because they had been on it for some time from before d was approved. But it seems that patients are still being prescribed it.

 

My s/es from d were really noticeable this month (but I have been on it for 18 months) - hip pain that made my hip collapse for about 3 days but then it got better. It's hard to separate the s/es of denosumab and exemestane as they seem to be much the same so I assume the ones that get worse at certain times of the month are down to d.

 

I'm afraid I'm a bit of a pill popper but nothing too strong so far.

Hugs to all Bon xx

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Hello sylvie
Welcome to the forum where we are all real people and can associate with the side effects of our treatments! !
I think the bone strengtheners and exmestance can increase bone pain especially when it hits the bad bit's and it's hard to know what's happening ...
I take cod liver oil daily but I think all those sort of things do help ...I have extensive bone mets too ..I try to avoid popping painkillers and tend to use a hot water bottle or heat pad ...I think a gentle walk daily at least does help the stiffness a bit but only what you feel you can do ....
Hopefully ..you will stay here with us as it's a busy thread and always someone around when u feel a bit down in the dumps ....there's so much information too ...
Hugs xx
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Hi I'm new here, diagnosed with secondary bone only breast cancer in Feb. 

Been having Examestane (no side effects) and Zometa (Zoledronic acid) and getting more and more pain in my hips (where the cancer has been treated with radiotherapy back in March) 

Is there anything we can do for the aching and stiffness?

Anyone use Glucosamine?

Any advice gratefully received.

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Fab Jellytot, just be careful if doggy pulls though - sure it's better behaved than my naughty pair used to be (gone to doggy heaven now as were very old ladies)- they nealy did me in when I had my op. LOL.

Glad you're feeling well enough to get out and about. Bit bracing here in not so sunny Merseyside (as anyone watching the golf will see).

Hope you continue to improve.

Hugs

Paula

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good on you jellytot and keep up the good work ,if you feel up to it of course .

you are getting there and wish you luck .

reneex

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After feeling pretty rubbish for the past few days, I have just managed a half hour walk with my doggies! Shattered now but feeling accomplished 🙂 Xx

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hi again ,

i have had no mails through from this site since thursday evening ,dont know why as this one came through ok.

i have a feeling some ex servicemen would look nice in sparkling heels and fluffy slippers if some of us ladies were with haha

 

reneex

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Hello Renee
I thought u were radio silent for a few days ..hope you are beamed up again to the forum ..
My sketchers were a birthday pressy but I have 4 pairs of similar ones from matalon. .I just live in them. I would honestly say they are brilliant for hip and leg support.
I hope you find a good site that you can donate your shoes. .I'm sure they will be well received but I hope the army personell are all female as I don't think the males would appreciate sparkly high heels or pink furry slippers ....ha ha ...
Hugs xx
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hi carolyn ,

i dont know why but getting no posts through from site at all ,i just wanted to say ,do you use GROUPON at all as they have SKETCHERS on at the moment at reduced prices i believe ,they are memory foam trainers .

 

i have also joined the DOUGLAS BADER forum as i am lead to believe they take odd shoes ,plus apparently there is a site for army personel who have lost limbs but as yet have not found it .

 

much cooler here today with a strong wind ,but lucky as we could have been in turkey or greece ,just dreadful 

 

take care reneex

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Hello ladies
Well feel sorry for all the holidaymakers here in Devon today ..it's cold, wet and windy ..I'm lucky I have all my home comforts but they are just wandering around in soggy flip flops and disposable ponchos ...not much of a holiday but hey hoo ..the sun will come out again soon.
Hope everyone is ticking boo
Xxx
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Too pointy toed for me.

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Hello Renee
I only just realised what you are going through ..you are paying twice what you need to pay but that's good if you can donate one to a useful cause. Would they not issue you a false leg so you can at least get use of both your sketchers ..
Sorry your pain is still giving you problems ..if it doesn't get any better ..then chase up your oncologist maybe ...

Think sketchers should be issued by NHS on prescription ..brilliant support for us bony mets ladies. .I feel like a little budgie ..bouncing with energy !!
Hugs xxxx
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hi carolyn ,we have had no storms ,not even rain although it has looked like it all day.

 

my stomach is the same and back i think is a little easier ,not saying too much as it could return with a vengeance .

 

i bought some sketchers ,first ones and was delighted with them but then had my leg removed so only one gets worn and such a shame ,but my district nurse has just told me to look on line as she is ure there is a site that you can donate one shoe or slipper to,which would be great as i have a wardrobe bottom full of left shoes going to waste,have you or anyone else heard of this site.

take care 

love reneex

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Hey Carolyn, I got some Sketchers a few months ago omg how comfy are they! The best trainers I've ever had!
Hugs Janette xx
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We had the thunderstorms last night .. really pretty and lasted about an hour but its still hot and sticky here and it didnt clear the air much. Its still 24c or in my lingo 75f .. ish ...im waiting for it to cool down a bit so I an have a little walk around to stretch the old bones and christen my new Sketchers ,,  really bouncy and comfy so I might even break into a little jog !! Ha ha . 

 

xxxxx

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Afternoon ladies, no thunder storm here....yet! We've been expecting it though, it is very close and sticky and is starting to look a little grim!
Carolyn, sorry to hear about your daughters mother in law, we've all been there and know how scary it is!
Think there is a few of us with scans coming up, I've got mine on the 4th August with results on the 10th so not such a long wait this time, had my TMs done Monday and will ring for the results of them in a few weeks.
Best of luck to anyone having /getting scans and results.
Hugs Janette xxx
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Custard creams and a hot cup of tea will set you straight for the rest of the day Carolyn.

 

I am so very sorry to hear the news of Lisa (Racer), I am just so very glad that her daughter has the memory of her Mum getting her ready for the prom that will be priceless for her.

 

This is all just so crap isn't it ......  . Love to all xx

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Hello marie
Nice to hear from you and I too have a scan due soon and so anxiety begins again but hey hoo we all hold each others hands and cope on this thread.

I'm sorry to have to tell you but lovely Racer ( lisa) passed away last week but she did make it to see her daughters prom at the end of June. It's such a vile disease ando hopefully better treatments coming along will help more.
I've just had a cuppa tea and dunked some custard creams so think my hangover is passing ...yes it was nice a couple of proper grown up drinks after so long !!
Hugs xxx
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Oh Carolyn, how awful that you feel rubbish this morning but did you enjoy the processco last night as you drunk it.... hold onto the feeling of how nice it tasted at the time :).  We had 3 solid hours of thunder and lightning in the east early hours of this morning so everyone, dog included is a bit tired and touchy this morning !!  Its still hot and sticky this though.

 

I hope everyone is busy getting on with things and that scans, treatments etc are being kind to you all.  I have a scan coming up on 1st Aug so getting a little worried but I know you all understand those feelings.

 

Not sure if I have missed any posts but was just wondering if anyone had heard any news from Racer.  I know she was busy planning her daughters prom and I had everything crossed that she was well enough to enjoy the excitement of the day with her  xx

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Oh dearie me ..why did I have two glasses of prosecco last night with my meal ? Been up all night so I guess I need to stick to tonic water ...I want my old life back! ! Self inflicted so no sympathy being asked for ....
Renee ...hope your back and tummy is better as it's not nice having such pain.
What about the thunder and lightning last night ..anyone else outside of Devon get it? But it's cooler now and so sweaty Betty here is much more comfy.
Hugs xxx
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hi carolyn,

hope you enjoyed your meal out ,,but sorry to hear about daughter in laws mum .

i am sure you will be a great help to her and yes hopefully she will join the forum ,when the shock wears off a little .

reneexx

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Hello ladies
Well just been out for a family meal and I'm sat here like a big fat Buddha and feeling bloated and I didn't even have a dessert ...
My daughter in laws mum has just been dx today with bc ..and memories of 13 years ago when I had my primary came back ...the shock, and fear etc I'm hoping she will use the forum and get support from the primary ladies there once she gets her head around it all ..but things have moved on ..loads of scans and a lot more planning now ....
Hope everyone is feeling OK ( ish) ...
Hugs xxx
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Oh jellytot that looks sore but hopefully it will settle down. .I'm sure in a day or two you will be back to your normal self again.
Best of luck with the new drug. ..hopefully you will find it easier to tolerate than chemo ..
Hugs xxx
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PMOL, sorry I meant to say I haven't started ribociclib yet. I have scans next week, then some tests (vitals, weight, bloods etc) and then I should be good to go xx

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PMOL, it's ribociclib I'll hopefully be having.

I'm feeling a bit battered and sore today. My poor arm where the cannula leaked is very sore (noticed I wrote saw yesterday, must have been out of it!). It's bright red, hot, swollen and painful. I ended up at the GP in the end and got antibiotics as it just didn't feel right. I have 7 days worth xx

IMG_0533.JPG

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Hi Jellytot!! Glad you are home!!! There's nothing like one's own bed/home.  Make sure you rest plenty. Have you started with palbociclib? Let me know how you get on as my onc will try to get me into the trial. Xxxxx

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Jellytot, Glad you are home. Now, rest up and treat yourself well!! FF

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Hiya jellytot
Well it's done now so hopefully you will feel better for some relaxation.
Assume this is instead of the monthly injection that some ladies have.
Hugs xx
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hi jellytot83

great news and hope all goes well ,just rest up for a few days and enjoy whatever you like doing most .

good luck

Renee 

 

 

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I'm home lovelies. My incisions sting and my stomach hurts. Issue with cannula as I have crappy chemo veins. It burst and leaked the drugs into my arm so it's swollen and bruised. Throat also hurts from tube, which was already saw from rads so it's kind of compounded the issue. Feel okayish, groggy and a bit disorientated but glad to be at home xx
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It's always devastiting to see another needless loss of life! Racer RIP! Many hugs to your family and friends! FF

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Jellytot

Thinking of you today.

Wendy x
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Thinking and praying for you today xxxx