Bone mets - please join in

[ramade]

Moijan, haha! My spiky ball keeps trying to run away from me along the wall to the door.

hugs

[bonariensis]

Hi Ff. Good luck in your new job. I'm sad for all the seniors at the place where you were working but glad they had somewhere else to go. I'll be thinking about you next week while you wait for results. Bon xx

[Moijan]

Hi again Ramade,  its hard to keep making yourself shove that spikey ball all over your bum, isnt it when you have noone else around to encourage you?

( Carolyn - are we allowed to say BUM on here when its not an official swear day?)

but getting back to you Ramade....just realised we could get together and practice.....am thinking of going to the Summer Exhibition at the RA tomorrow....if you can meet me there we could 'display' ouselves

demonstrating how to wield the spikey ball.

Moijan💚💚💚😄

[Moijan]

Ff...yes, good luck. Now xx

Carolyn......ill put this in brackets so the others dont look too closely but

( arent those knickers...THE knickers you wore to that pub on the day we first met -along with our O.Hs?)

I had thought they were some new Devon summer fashion or such like....xx

Mx

[redridinghood]

FF..........all the best with the new job! A fresh start now, and perhaps interesting too.  Let us know how you get on.

mo                      x

[jazmia]

hi funny face,

just great to read your post and good luck for the future ,,you are my kind of gal as i would have done exactly the same as you ,i once tipped a mop bucket full of water over my manager,[when i could lift it ] then went back the next day to ask him for my wages he owed me ,and received them. 

[Carolyn52]

Ff
I think they will be perfect under your caprice pants and what's a bit of lace showing ...they are going to be more comfy than those thong things we used to wear for fashion !!
Hugs for next week xxxx

[funnyface]

Carolyn, I will need them next week on T,W, and Thursday. Scan T results Th. Do you think they will stick out of my Capri pant legs? It would make quite a statement at my new job!! FF

[Carolyn52]

Sorry to disappoint but I haven't eaten much chocolate lately but today I ate a whole terry chocolate orange ..I feel like a hamster on steroids on one of those treadmill thingy they run on all night!!
Ff ....I'm glad u have left the stress behind and u now have a new challenge but the big loss is the patients as you are a very unique special person and not many of us could do that type of work.
Rest, relax the weekend you deserve it.
Hugs xxxx

[Carolyn52]

To all ladies waiting for scan results or having a bad time ..the big girl pants are all washed and ready for you to put on. 

[funnyface]

Moijan, The spikey ball sounds interesting. It sounds like it might just feel good to roll it around on anything that aches. 

Carolyn and Renee, Funny you are talking about carpet cleaning! I just vacuumed and decided to take a break before I got out the carpet cleaner. My Maggie girl had a UTI and had a couple accidents, so it needs a good scrubbing. I really need new carpets but it's not in the budget. Like you Renee, my dog is more important.

To all of you ladies, I have been quiet. Work had me completely dressed out, but the stress is gone. They closed the dementia program I was in charge of! I figured they would let me go and they did. This new director has turned the senior center into a miserable place. She will eventually hang herself!  When they told me they didn't have another position for me, I got to have the last word! I got to walk over to my desk and get my resignation letter, signed it and wrote effective immediately! I had it ready bc I had a new job. I had already decided to leave. They were quite shocked!! The board me m bed who was with the executive director when they let me go said to me that I walked out before the director was finished speaking to me. I looked at him and said maybe she wasn't finished speaking but I was done listening and I walked out the door! I go Friday morning to hear more details on my new job and get my start date. I actually think they are going to have me start Monday. After my meeting at the new job, I'm headed to the shore again. There Is 12 of us getting together. I will be able to relax knowing I have a new job to return home too. I didn't realise how stressed out I have been til it was over! The day before I left I was off work and they cut everyone's hours and she hired two of her friends. Lol they didn't cut my hubby 's hours. He doesn't have to deal with her though, since he cleans when the place is empty. Quite a few seniors have left  too. There is another center close by that they can attend with their friends. I hate how this lady is treated them.

OK, time to get cleaning and packing! Have a good weekend! FF

[Carolyn52]

Well Moijan and remade will be thinking about you both and your spikey balls tonight ...ha ha 

[Moijan]

Ramade....this is me today xx

[Moijan]

Yes Ramade, btm and hip felt a lot better this am...however, my drive to and from the hospital reset the problem!have moved the car seat again in the hope that it helpsxx

[ramade]

Moijan, your post is interesting, had bad hip pain for weeks. Went to see a physio privately and she found it was the piriformis muscle in bum. Exercises with ball against wall plus stretches.it is improving now but took a little while.

[Moijan]

Now Carolyn, today has been interesting, I fed back to lovely onc that my p.n. was much better, casually mentioned my hip and I said 'well, it hurts if I touch it-it wouldn't if it was due to mets, would it' he said 'well, it would actually'. However, I think it's muscular and went to see chiro this pm -she delved deep into my btm muscles - said my pelvis is skewed( again) gave me some excercises to do with a spiky ball( relating to bum) and actually, I think she's right ..... prob not mets at all! Lovely onc did offer me an MRI, should things not improve-so have a back up plan. Xxx M

[jazmia]

hi carolyn

thanks for that ,i am going to speak to my oncologist as dont usually tell him how i am feeling and i dont have a good BCN she doesn't get back to me and only tried her twice in 7 months but nothing.

thanks again

Reneex 

[Carolyn52]

Renee
Tell your oncologist of problems as mine always says ..it's living with cancer and some sort of quality of life that counts ....
Maybe u need to train your dog to wipe her feet! My son's dog is a boxer. ..he's the most mucky dog ever ..he shakes his head and the slobber hits the lampshades, curtains etc ..it's a never ending job of cleaning up ...
Hope tomorrow is a good day for you.
Hugs xxxx

[jazmia]

hi carolyn ,

my carpets are also cream ,except staircase and it's a mixture of creams and browns,but as you say having the dog does not help ,although would rather have her than carpets ,

i am having more bad days than good ,but have my treatment monday and see onco on friday so hopefully he can help,strange disease this ,different every day ,but het i am here to  tell the tale ,what tale i dont quite know.

my friend is coming tomorrow so she will cheer me up ,always does .

take care 

Renee

[Carolyn52]

Hello Renee 

Well clean carpets .bet u feel nice and refreshed .having a dog doesn't help ..we have cream carpets...aagh spend so much time shampooing them ..going to replace with dark ones later this year ...no excuse as son is a carpet fitter ....

Hope u feel a little more cheerful now ..good days and bad ones ...

Hugs xxx

[jazmia]

hi all ,

not been on here today as felt too down to post ,but had carpet cleaners to do right through house and he cheered me up no end,  when he finished i gave him a tip and he said ,,all my tips got to cancer charities which i thought was very nice ,he then produced thank you letters from Mcmillan and cancer research thanking him for various donations,so one nice gent i thought.

rained all day here so very soggy and dull.

Reneex

[Carolyn52]

Hello Moijan
Maybe hip pain is just old age and not cancer related ..we blame everything on it or treatment side effects but forget things could just be age related sometimes and we would have got them anyway ...ha ha ..I'm quoting what my very kind friend always says to me !! But wise words xxx

[Moijan]

hi Chris...never had that, but maybe not anything awful xx

Carolyn, ended up at the gp because latterly got ache over left hip...thought was it a kidney infection but wee test showed nothing....so fingers crossed.

i wanted to share re Cannulas etc,,.at my hosp had to have three scans, so got them all on one day......mri, then bone scan then ct, so the one cannula dealt with all three instead of three cannulas.l.l.try and do that if you need to...have done it three  times during the past three years.( oh and none needed back of hand)

I am the worlds worst with veins!

best wishesxxx

Mx

[Carolyn52]

Hello Chris
Good to hear from you but as usual I have no answers but your GP is on the ball getting a scan done quickly ..try not to worry not everything is cancer related ..I had a growing wart thing on my leg for a year ..thought it was something sinister but it just fell off !!
Keep in touch ..hope some other ladies here can help more than useless me ..
Hugs to poor ladybird xxxx

[Ladybird2]

Morning ladies
Hope you are all coping well!
Ladybird's is really suffering with leg pain recently and also has grown a tangerine sized lump on her kneecap! The gp has booked her in at Didsbury Spire Hospital for a scan on it. Dr said local NHS hospital would take too long. It appears to be a bursitis type lump but has been there for more than two months. Anyone else had similar?
Take care
Chris xx

[PMOL]

Oh Jellytot!! I hear your pain!!!! They can do it on the hand too. Make sure you drink at least 1pint water beforehand and keep the armhand warm.  Also, tell them and thye use a blue needle or butterfly which are smaller.  I know that for CT they can't though...

i've got liver mei next week and panicking abiut the canula but they've said to see the girls in onc for them to do it.  Might help?

big hugs xxxxx

[Carolyn52]

Oh jellytot ..I do feel for you as most of us only have the one arm and the poor veins there harden and say "no more" ..I think I'm remembering right but the radioactive stuff for bone scan ..has to go in the back of the hand ...so maybe you will be spared the ow ow ow bit on veins that are newer!!
Hugs xxx

[jellytot83]

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

[rosie53]

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

[jazmia]

NO my friend you are definitely not the only hypocondriac on this site ,as this is one replying to you.

Reneex

[Carolyn52]

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

[Pippin]

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

[Moijan]

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

[Carolyn52]

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

[Carolyn52]

Well hello stranger ..Julie. .welcome back ..it's been a long time since we heard from you ...
Hugs xx

[JulieD]

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 . Have as good a week as possible and hold on to hope. xx

[jazmia]

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

[dragoncarine]

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.

[Carolyn52]

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

[ramade]

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

[ramade]

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

[bonariensis]

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

[joellek]

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

[bonariensis]

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

[Carolyn52]

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

[sylvieprouse]

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.

[kirky_68]

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

[jazmia]

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

[jellytot83]

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

[jazmia]

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