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Bone mets - please join in

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Bone mets - please join in

I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!

I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....

finty x

19,633 REPLIES 19,633
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Absolutely and get sorw near time of new injectoo. Didnt get it this week as calcium to low and i fair miss it x
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Hi

I have been lurking about reading your posts since May when I had an xray of my hip after a fall. It showed a suspicious shadow which after a CT scan and biopsy was confirmed as a bone met. I have found reading your posts very encouraging and they have helped me through some very dark times while waiting for results. I had been on tamoxifen since my primary in 2014. I have been on letrozole since July and I am having my 2nd zometa infusion in a fortnight.  My oncologist is also talking about adding palbociclib to the mix. There doesn't seem to be many of us on it. I know it is new but I can only really find much about it on the American sites.  I have a couple of weeks to think about it but I am feeling a bit overwhelmed by it all. Had just got my head round the letrozole and 3 monthly zometa. Got myself all worked up about changing over to letrozole as I convinced myself I was going to have every side effect going. Tamoxifen was a breeze..... just a pity it didn't work. Anyway so far so good with the letrozole.x

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Hi

Anyone else find that pretty much immediately after the Denosumab injection the bone pain disappears then by the week before the next injection is due the pain is back at its worst only to ease off again straight after the injection? This seems to be happening to me.

Big hugs - 'cos it's the right time of the month!

Pippin

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hi funnyface,

you are so right ,as not looking forward to some nurse sitting for two hours to make sure i have no side effects from herceptin,i dont understand it at all as have had 11 sessions intravenousley and one in thigh ,so surely they know by now i have no reaction,i was hoping someone on this site could explain why this happens ,or even someone who is going through the same treatment.

as for the ambulance i am now going on friday so lets hope they turn up ,its not the drivers at fault it's the switchboard, and when speaking to them they dont appear very bright at all ,not that i am so clever but dont have to repeat questions and answers over and over which they always do ,plus they are not the nhs ambulances but some firm contracted out and can not give medical assistance ,just basic first aid ,but also the drivers are only paid minimum wage ,which is wrong as well ,but hey what is right at the moment 

we are into autumn temperatures now, around 15 degrees so definitely not summer 

take care .

renee 

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Renee, I wouldn't like a nurse sitting around either! What a pain! Sorry you didn't get picked up to go finish your radiation. I know you must have been upset. Wow, you are tall! I'm only 5'3" was 5'4"" but shrank one inch. 

 

Crazy weather here. First we were in the 60's, then the 90's, then back to 60's, now the 70'sand headed back to 80's. I keep pulling out summer clothes then packing them. Back and forth. Very annoying! 

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hi carolyn,

the hospital have told me i have to have thee nurse here for two hours every time i have injection ,which is every three weeks,yet i did meet a bcs nurse while at the oncologist on friday and she said the time had changed to a one hour slot ,but the nurse coming here as never heard that the time has been reduced ,as long as i get along with her i dont mind ,but a little awkward if we clash,so have to be on my best behaviour ,[very difficult for me]

like you i loved shoes and boots when able to use them and now i have lots of left foot shoes doing nothing ,although did get rid of some to a charity but they wont take strappy sandals or toe posts .

take care .

love renee

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Oh Renee. .what a let down not getting the last nuking done today but it will soon be over.
When I was having my bone juice at chemo unit last week. .lady in next chair was having herceptin by injection in her thigh ..so.much easier than iv and she was up and gone quickly ..

Wow having a nurse for 2 hours ..maybe u could just make a big pot of coffee and share some donuts. ..or even ask her to cut your toe nails even to fill the time !!
Hugs xxxxx
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Oh ff ..Lucky you loosing that weight but I know it was hard work for you ..I'm being miss piggy eating pizza as I type here! !
I've been out today doing some retail therapy ( got to be done) and I went to a large shoe store ...all the heeled boots and glitzy shoes were tempting ..then I put on my sensible head looked at the flats ..walked away most uninterested !!
All the money you save on choc and naughty food .you should put in a jar and then splash the cash on some new clothes.
Xxx
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hi funnyface

,i have just read your post and can not believe the weight you have lost and also the amount you still hope to lose as in my reckoning that will be nearly 8 stone,i can only praise you for doing so ,good grief what an achievment ,you should be so proud of yourself and guessing your family and friends are proud of you,

i have never been above 11 stone and i lost a full stone when my leg was taken off ,plus lost half a stone in the past year but now look too thin as around 5ft 8in tallso look scraggy ,and not a good look at all.

 

should have been for my last radio therapy today but ambulance did not turn up for me so now have had to re book for friday,,,on my second session of chemo tablets for two weeks and a week off ,but coping up to now ok and tomorrow start herceptin injections into thigh but in my home and the nurse has apparently to stay for two hours after its administered to watch me dont know why as have had 11 sessions intravenousely in hospital and always been ok plus one in thigh and ok with that ,but nurse reckons this happens all the time you are on herceptin,hoping someone can tell me different as dont fancy sitting looking at a nurse for two hours .

 

take care ,and also all ladies on here .

love renee

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Carolyn, I wear 10 wide in shoes. I was wearing extra wide. I have usually shop on line. I did have a lot of ballet type shoes but they are too loose now that I lost weight. Before I lost weight my toes weren't wanting to hold them on right. I'm having to switch to Mary Jane types! Feel like an old lady! In the US we use the term handbag, pocketbook and purse interchangeably. I usually say pocketbook bc my mom did. I usually use purse for a small "change purse"! They also use the term evening bag for using with a gown. Funny the differences in words.

I've been trying on clothes. Lol with 80 lbs.off I need new sweaters and some long sleeve tops. You should see the pile of clothes I have that doesn't fit! I will pick up a few items. Luckily I have a birthday coming and Christmas! I want to lose 30 more, so don't want to get too carried away. I want to be finished losing by May, then hoping I can start building my wardrobe back up. FF

 

 

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My heart hurts for these victims of such a senseless attack. These acts of violence need to stop! It sickens me that so many innocent people have lost their lives over such a senseless act of evil and hate. So incredibly sad ☹️😥
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Ff
I watched the vegas attack coming in live this morning ..horrific again on innocent people enjoying life ...my son was there in may ..renewing his marriage vows. ..
What a world for the future generations. .
Xxx
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Oh dearie me ff ...now I'm feeling guilty but I also own a dozen pairs of ballet type pumps, sketchers and enough pairs of furry slippers to warm up the whole of UK cold feet !! Ha ha.
When u say pocketbooks ..I think u mean the little messenger type bags we use as I think in US you call proper handbags. .."purses" . In UK a purse is something we put our cash and credit cards in ..within our bags !!!
Down here in Devon we call sweaters "Woolies " too ..strange language really.
Hugs xxx
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What is wrong with people? Where does all this evilness come from?!?!? Why would you hurt people you don't even know? This horrendous acts in all countries are upsetting!! FF

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 Carolyn, Oh my gosh! I have 1 pair of boots,1 pair hiking boot, and 1 pair snow boot, 1 pair of sneakers, 1 pair black shoes. I have big feet so hate shoe shopping. I don't like to change pocketbooks, so I have 1 black and 1 brown. I thought when I had 8 jeans that I had a lot. I do have a lot of sweaters (jumpers). Jumpers in the US is a certain kind of dress. FF

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Babsy, Sorry the pain meds sent you to the hospital. Sounds like you have a quick acting hubby! Our OH's go through a lot with us. Hope you are sorted out now. FF

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PMOL, Hope you enjoyed your company and get some rest before your op! If you're like me you will go on a cleaning frenzy before the op! Don't forget to get yourself some treats.New jammies, robe, chocolates, etc. Good luck! FF

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Hello Maria
Actually I'm still wearing my beloved sketchers ..but boots will be my next step !! Boots just stacked in bottom of wardrobe ..plenty of room there for more if I move some handbags first !!!
Xxxxc
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Hi Carolyn,

 

I am still hanging onto my summer shoes, I don't like the bunged up feeling of shoes and boots ....  but 12 pairs of boots, where do you keep them all ha ha.

 

Maria xx

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Hello ladies
Well it's October. .I've just packed all the flip flops and summer stuff away so if we get an Indian summer I'm going to be the sweaty Betty in warm clothes !!
Decided to have a capsule winter wardrobe ...20 jumpers, 20 jeans and 12 pairs of boots !! Please stop me doing anymore retail therapy ...I just don't need anymore clothes !!!!
Xx👖👕👢
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Hello babsy
Sorry you had problems with the morphine ..something that is supposed to help you not almost put you into hospital.
Hope u are well settled into the coastal life now and relaxing with some nice sea air ...
Xx
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Hello pmol
Good to hear from you and you will be better after the oomphdaisy op!! It will save the monthly injection that you are probably having now. Some of the ladies here have had it so hopefully will be able to give u info.
I also agree that a lot of day patient stuff is just too quick and a night in hospital just gives you the extra rest you will need.
Take care xxx
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I'm on comcodamol for my pain which works well. I changed to morphine at the weekend but the dose was all wrong so collapsed with terrible pain. Hubby called ambulance and I've gone back onto my original tablets. However, three days after taking magic ingredient my pain has completely dissipated, appetite is greater as well as energy. So, it's true what they say.  

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Hi girls

Sorry about the radio silence for a while. Things seemed to have calmed down although had visitors and that was crazy. Anyway, got a date for the oopherectomy 23/10 and whilst they said it'd be a day op I've asked to stay the night, and they've agreed.
I also saw the onc last week and they've added everolimus to the exemestane. Hopefully it'll stop the growth - ct scan in November.
How is everyone doing? ❤️❤️
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Ramade- sounds like you should be glowing after all that treatment. Hope you are comfortable and the pain meds are doing their job. Have a lazy few weeks. Xxx

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Ramade, You were a trooper with that amount of rads! I agree with Carolyn to the couch with you!! Spoil yourself!  Hoping in a few weeks your pain level will have improved! I always wonder how the cancer chooses where it's going to rear it's ugly head??? Yours is strictly bones and mine was strictly lungs and lymph nodes in chest until a few years ago when I got the one spot in the spine. I wonder if certain kinds of breast cancer hit the organs more frequently and others the bones? FF

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Hello Ramade
That sounds very good and it's a lot of nuking but if it helps ...sounds like you will need some rest for a few weeks but don't feel guilty .... lots of box sets, comfy pj's and cushions on sofa for you ...
Keep in touch and sending hugs xxxx
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Hello, much love to all of you and thanks for all your lovely comments. Every day this week I have had what they call a heavy load of radiation down the spine, and area from the neck 14 inches down abd 5 inches wide. I feel blitzed now but have good pain meds and feel very calm. They said that there is a lot of cancer in every bone in my body but that the organs are at the moment free. As soon as the inflammation goes down I will be back on a chemo to try to solve the smaller pieces of cancer. The good news is that they did x rays through the radiatiin machine and saw that the bone is desperately trying to rebuild itself. Will update in a few days.

love again to all of you very very brave troopers.

ramade xx

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Glad to hear mostly positive things about the radiotherapy 😊

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Thank you - it's good to hear all your thoughts on the radiotherapy. I've now got an appointment to see radiotherapy consultant in 2 weeks, full body Mri in 3 months to check on spread and onc appt in 3 months to decide whether to switch to tablet chemo- capetabine. My oncologist said it's in the bone marrow of my vertebrae- not quite sure exactly on the implications?

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Hi there just to say i have had radiation to my spine it took a full 3 months to be pain feee. Initially was sore and had flare up but is so worth it. Hope this helps xx
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Hi Ramade,
I am happy that your new treatment is going well. Does radiation kill only the cancer cells? You will also be on new medication i suppose. Is this hormone therapy ? I am on the same medicines but dose reduced. I have pain in my ribs and spine. I was wondering if radiation may help.
It is autumn festival here in India . A time for family gathering and celebration.so we are having lots of fun.
love and best wishes to all
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Hi all

Thought I would add my 10p worth. When I had rads to hips I had no immediate relief or extra pain but after a couple of months felt better and could walk pain free and sit without burning pain in hip. Unfortunately I have more mets in spine and being radioed this week so am expecting the same . I also now have to have a bone scan to check elsewhere and dreading they will find something as have pain in rib near my breast bone but as my Onc says we can zap bones!
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Hi funnyface and all ,

i am not doing so well this week ,have had terrible pain through shoulder and collar bone so going to have to try and sort this out now ,i saw oncologist yesterday and he is seeing me again friday for bloods etc ,its just strange as never had any pain previous to having this radio therapy ,which i have had five sessions so only one to go,many one out there any ideas please,the rads were on my outer breast .

take care all

love reneex 

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Hi! I had radio for spine and hip and it hsa helped pain.  What they said was that it could be felt either straight away or take a bit of time.  For me it made me realise that I got used to living with the pain 😞 - And remember everyone is different so do what feels right for you xxx

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Hi Ramade and Renee! You two are doing great with all these treatments. Sending big hugs!

You and Renee are troopers! FF

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Welcome TNMTNGAL, I'm sorry I only have 1 bone met and have never had a PET scan. I always thought when the PET scan lit up it was cancer. Ask a lot of questions. Get a second opinion. Don't stop until you are satisfied!! You could have it biopsies. Best of luck. FF

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*both pain and hot spot in right hip, not left. Sorry. I hope I'm posting in the right place?
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Hi everyone. I was dx November 2009 with stage 2 grade 3 involving lymph nodes. Had double mastectomy & took lymph nodes. The "bad" chemo 6 months, daily radiation 6 weeks, herceptin weekly for a year, tamoxifen 5 years. They wanted to put me on a different daily pill for 10 more years. I've had enough. So my right hip has been hurting for over a year. Now I'm hurting into my pubic bone. PET scan showed a hot spot in my left hip but they said it was indicative of a torn psoas muscle so sent me to ortho. They said not a torn muscle and looked like it's from my degenerated lumbar spine, scholiosis, and dx today with spina bifida occulta. My question...would just a torn muscle show in a pet scan? Because from my understanding, the glucose serum they mix with your blood draws cancer cells to that spot, thus showing hot spots on a PET scan. Do torn muscles or maybe even pain show up as hot spots? I'm really worried. I've had X-rays, CT's, MRI's, PET scan, everything except a bone biopsy, but I've heard of women having mets in hips that doesn't show up until later?
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Hello Ramade

Just sending you a massive hug and hope rads helps the pain .
Keep in touch xxxxx
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Hi ff, carolyn, all you bone mets ladies. This week I amm having radiation to my spine all week.

the reason is that I have bone mets all down the spine and around hips and around breast bone. However for months I have been having bad pain in my shoulder that radiates down my arm and the side of my body, it was terrible. Anyway the onc sent me for radiation in one in the neck and one in the high back because these were infiltrating spinal nerves, tingling and pain moving around all the time. They said they hoped the radiation would kill this cancer because there was a danger as it was about in infiltrate the spine itself which would not have been good. 

The less invasive cancer down the rest will hopefully be tackled by a change in meds. Day 3 tomorrow, pain is expected to get worse next week after it is finshed and them get better. I will report back to let you all know what happens and hope that might help you make a decision.

love to all

ramade xx

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Hello pina
Welcome to the forum ...rads can help pain a lot for many of us ..I had hips / pelvis done in one blast two years ago and it did help I think.
It's a decision you need to make but be guided by your oncologist ...ask lots of questions and anything can help if it's pain relief! !
Hugs xx
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Hello everyone. Was wondering if any of you have had radiotherapy to help reduce pain ? My onc has suggested I have some on my spine and pelvis. Not sure whether to wait longer or to go for it now ? I hate making decisions!!!!

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.

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Thanks girls. It shows up when they do the CT of my chest. Due the beginning of Nov. for that. Little over a month away. FF

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Oh bon
You have described bone mets perfect ..I had a flutter feeling and pulse in my femur at the beginning ..felt like there was a spider in there living ...then I got a big bruise that didn't go away.
Bone mets on spine ..cause different effects though ..
Hugs
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Hi FF

My bone mets first felt like a flutter or a soft pulse, this before I was diagnosed, so naturally I didn't think anything of it. Then I had a pain for a day but this went away and only comes back infrequently mostly when I've been doing too much gardening. So it seems that mets make themselves known in any number of ways. Hope your stinging goes away and you are feeling OK otherwise.

Bon xx

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Bon

You gave the spider a chance ...it let you down and bit you so deserves a big splat from your slipper or book. .whatever is nearest! !
Hugs xx
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Hello ff
Bone mets are clever little blighters ...they can sting, burn, ache and itch so it's difficult to know what they are doing. Most times unless they press on a nerve or limb ..we don't know they are there .
Hugs xx
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Hi Renee

I'm glad that your treatment is coming to an end. Hope you can enjoy a bit of peace and rest now. Wish I could send you a cream tea. I live a bit further down the road from Carolyn. Sometimes Carolyn, Barton and i meet up for lunch or tea. Unfortunately last time i managed to find the place with the worst cream teas in Devon.

 

Found a garden spider dangling in my bedroom the other day. (Just noticed it's there again this morning). Wrapped my hand around it to put it out the window without hurting it and it bit me so i let go. Will try a different tactic this morning.

 

love Bon xx