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Bone mets - please join in

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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 !!!!
XxπŸ‘–πŸ‘•πŸ‘’
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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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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

 

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Bone Mets Ladies, I've had one none met in my spine for a few years at T-11. It's never given me a problem. A couple of weeks ago I had a little soreness in the area and some stinging. It went away. Today it started again. It's not really a problem, it's just there. I was just wondering if maybe it's going to start acting up. Has anyone with bone mets in the spine had stinging? FF

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Oh Renee
You have the best taste in clotted cream ...roddas
The best in the West.
Ilfracombe is about an hour or so away from Exeter and it's a bit tired these days but there are lots of nice bays around the north coast .
Maybe once your treatments are less ..you will be able to make the trip again and enjoy your memories.
Xxxx
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Hi Carolyn,

i can tell you i am completely shattered with it all and pleased it is coming to an end i hope ,as dont think i can take much more ,serousely i put a brave face on it all ,but drowning in all the treatments at the moment ,i know the onco is doing his best but sometimes wonder is it all going to be worth it in the end and who can answer that NO ONE just hope for the best.

 

we were coming down to ilfracombe once and and broke down on side of road ,i dont remember exactly what happened or why we ended up in exeter to have it fixed but the rac  sorted it all out at this exeter garage so we spent all afternoon looking around exeter and really enjoyed it .

also my mum had a friend from exeter ,moved up to the lake district ,she was a fantastic cook and made all her own cream scones and also pasties ,but never ever lost her accent all the years she was in the north.

 

i can not eat very much at present but can keep scones with strawberry jam and rodders clotted cream  down,also remember the times we have spent on various harbours down there munching on large cornish pasties ,those were the days carolyn.

 

love reneex

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Hello Renee
It's good some of your appointments are coming to an end ..you must be exhausted with it all ...you are doing so well to tolerate so many things at once ..I'm a wuss ..don't think I could.

I live in Exeter. ..born and bred here so a true Devonshire dumpling with a love of cream teas and pasties !!
Gorgeous weather here today ..sunshine but with a autumn chill ....
Hugs xxx
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HI CAROLYN,

i have noot seen a daddy long legs as yet this year ,but lots of spiders with tiny bodies and great long stringy legs ,all over and like you had one visited me in bed 

finished my first two weeks of cape and feel ok ,but is feeling ok good or bad sign ,will soon know as seeonco friday for bloods etc ,plus only have two R T left tomorrow and next week ,i do have pains in my collar bone and shoulder but putting that down to RT i hope thats it anyway.

i keep meaning to ask where abouts do you live exactly carolyn ?,just curious no other reason ,but i am nosey and always have been

love renee

slinging it down here so horrible

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Good morning ladies ..
Hope your all had a good weekend , well the wasp and mozzy problems are better now another ...daddy long legs ..aagh creepy things ..we had 7 in our lounge last night ..hubby did his bit with them but got into bed last night ..switched off light. .felt a tickle on my face ...yep you guessed another one so I had a swat and spray to hand ..not afraid to use it either ...glad I don't live in oz ..could be snakes and killer spiders I suppose.
Xxxx
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Hi xxamandaxx and welcome to the forum. There are a lot of informed and supportive ladies on here, most of whom have bone mets so you have come to the right place for information.

It is quite likely that you oncologist will suggest a chemotherapy treatment if your scan results show that letrozole is no longer working. However this can be a tablet form, Capecitabine, which is generally kinder, less harsh and has less side effects that IV chemo. It will depend on what your oncologist orefers to be honest as there doesn't always seem a set pattern to these things. I went onto Capecitabine after anastrozole had stopped being effective and got a good 18 months from it, other ladies have been on it for much longer than that so its not a chemo that has a defined number of cycles.

Although it is difficult not to worry, as we all know, I've found over the years that I've often been thrown a curve ball and something has been suggested that I hadn't even thought about and therefore I have stressed about something that I didn't need to. So try to carry on until your appointment, after that you will know a bit more and can prepare yourself for what you know you will be having, it may also stay the same with no changes.

Nicky x

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Hi i am new to this. I'll give a bit of an update. I am 34 wi stage 4 breast cancer spread to spine hips neck and shoulder. I was originally diagnosed in 2013 with stage 2 breaat cancer.i then had chemo mastectomy and radiotherapy.
Then in 2016 had secondary diagnosis.since then I have been on zoladex which stopped working so had my ovaries removed.since January this year I have been on letrozole which I think has now stopped working as my tumours markers have got higher. I am just wondering what is next after letrozole? I'm sure I will hear from my scan results soon to what is next.just looking for a little bit of a heads up before I am called in. Really hoping it's not more chemo xx
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Thank you to any ladies who have posted since my original Thank you about my girl, Maggie. I'm doing good. I've made if through the weekend without any tears. I miss her, but know she us in a better place. FF

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Babsy, Are you strong enough to repeat treatments. You can try "revisiting" some treatments! Also, if I had no treatments left and felt strong enough I would try something non traditional.Good luck! 

 

Thank you for your kind words on my doggie! It's hard letting go! FF

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Hello Barbara
It's good to hear from you but sad that chemo option is running out ...I have often read here that many ladies are put back onto a hormone therapy to keep things under control ..maybe you could ask oncologist .
I hope you have settled into your new home ..I think when you last posted ..you had just moved to the coast ...
Sadly I can't join you in Birmingham although it sounds good as I'm not mobile enough to travel up from Devon.
Sending hugs xxx
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It's so sad when you lose a member of the family. We had two dogs and one of them just became ill really quickly and she was the same age as her sister and we had to put her to sleep, so sad. 

On a personal note, I've now come to the end of the treatment road so am now struggling to find my positivity. I am going to a two day conference at Birmingham on Saturday and Sunday called , I Can Do it, look it up on internet. It is all hayhouse authors, including Anita Moorjani. I'm sure I will leave there much more positive. I have got a spare ticket cos my husband refuses to see the " quacks" so I have a spare ticket if anyone is interested 

barbara x