Bone mets - please join in

[LYNDYLOO]

Evening Avrelia

So sorry to hear regarding another cancer. Hope you are recovering well after such a major ooeration.

Regarding your spine I would think it is upto you if you want the radiotherapy especially as you say you have no pain. You are still recovering from a major operation which normally takes about 6 weeks.

Linda

[avrelia]

Hi all,

I did not post here for ages and did not read to be honest, I think I only come back when I am feeling low and do not know what to do, quite a selfish thing isn't it.

I apologize, but probably some of you have felt the same way. I hope you are all fine.

Here is my small issue now:

I have been feeling ok, apart from my continuous bleeding dow there, so I continued insisting to be checked up and finally I was diagnosed with another cancer, this time endometriosis one, as if the other one is not enough. Luckily this one was a primary not invasive. I had a total histerectomy last week as they said that this is my only choice to have this one cured. No treatment needed afterwards. Now I am recovering. However my oncologist is not happy with the response of the bones so she wants me to have sam rads on my spine. I do not feel any pain at all and I am not sure I need that. I am so scared that after a radiotherapy I will start experiencing pains and I just do not want them, or at least would like to postpone them as long as I can. I know that I am selfish but I would highly apprecieate if you give me any kind of advise or share with me similar stories. I know that I will have to make the decision myself but yet, would be eager to know what you think.

Thanks

[jazmia]

hi FF

sorry about your back problem ,i have three ruptured discs ,do you think another one has gone as is quite possible and no other pain like it ,so i feel for you ,,hope they sort it and soon .

love reneex

[Carolyn52]

Hiya FF

I'm so sorry about your poor back ...must be horrible but hopefully they can find out what's caused it ....I think Barton here had something similar a while ago ..maybe if she's reading she can offer some advice ...
Hugs xxx

[bonariensis]

Oh FF

Back pain is dreadful. I know. You shouldn't be surprised that it hurts so much when you are lying down. Everything seizes up. When I had a ruptured disc the pain was often worst at night. That's when I needed painkillers the most. Hope they find out what's causing the pain as soon as possible and can kill it.

Lots of hugs Bon xx

[ramade]

Lovely news ff, a real pick u up. Great having the birth to look forward to and just after Christmas is a great time so you can avoid that winter blues feeling.so pleased for you, hope you are well.

ramade xx

[funnyface]

Bad night! I've been having back problems. Saturday night I slept in a chair, last night I tried to sleep in the spare bedroom. BIG MISTAKE!! When I lie down my back starts with spasms. They are stabbing, jolting an crushing. They take my breath away. Hubby was upstairs with the door closed. I barely got hold of my cellphone and called him. He didn't answer. You could drop a bucket of ice water on him and he would still sleep. I almost called for an ambulance myself, but could hardly get any words out of me. I managed to call hubby again, this time he answered. I screamed help and he knew I was bad. We tried for 45 mins to get me up. I was on my side and couldn't even get up on my elbow. Hubby would have to p read on my back every time I got a spasm. We ended up calling an ambulance.Hubby applied pressure to my back and the 2 other men pulled me up. OMG I will not be getting back in bed for quite a few days! I don't understand why this jolting crushing pain happens when I'm laying down. I can be perfectly still and it keeps happening. As soon as I'm out of bed it stops. My back was tender to the touch after this episode. But no more jolting pain.Sitting here waiting for the doctors office to open.I think I must need something for inflamation and a muscle relaxer. I want a MRI and if everything is OK an appointment with my chiro. I did read that repeatable can cause back pain. BY the way my finger nails have got thin and tender. So look much fun. FF

[nicky08]

Yay FF, congrats and enjoy the shopping.  We have just welcomed our first grandchild, a boy, a month ago.  Never thought I'd see the day, when I was dx with bone mets 9 years ago, so it's extra special.  The cuddles are lovely so you have plenty to look forward to.

Nicky xx

ps hi to all other boney, and other, ladies (and gent!). Hope everything is going well with your treatments, I've just had good news from my latet CT scan showing that Eribulin has knocked back the liver mets to a single one now and all bone mets are stable or healing. Phew, scanxiety over for a while.

[jazmia]

congratulations FF,

you will never ever have any spare cash again as all will be spent on this lovely child

best wishes to you and yours

love reneex 

[Srilata03]

Congratulations FF

[funnyface]

Thanks ladies! 

Jobey my first baby was a 10 lb baby was presenting one foot down and one foot up. He was that way for weeks. They said no way, that I had to have a C-section. Lol he is my skinnest one now!

[Jobey68]

Congratulations!! My first grandbaby a little girl is arriving on 18th of this month!! She's breech so coming out of the sun roof which is why I know for certain when she's going to arrive! huge excitement here in anticicpation , can't think of her without welling up so god help me when she's born!! 💖💖

[Carolyn52]

Whoop whoop FF....so exciting for you and you will make a lovely nanna ...enjoy shopping for all pink fluffy things ....that little girl will steal your heart and your purse strings !!
Hugs xxxxx

[funnyface]

I have some SECRET news! For those of you who are friends with me on Facebook, I have sent you a private message there. This may not go on Facebook or I will be disowned! I'm going to be a Grandmom in January. I will be shopping soon for a tutu and ballet shoes. Soooooooo stoked! FF

[Benten]

Thank you Carolyn for your welcome. I am so glad I found this site.x

[Carolyn52]

Oh bon ..what a gorgeous photo ..definitely needs printing off and framed ..

Think we are meeting next Monday for coffee arnt we? Be nice to see you.
Xxx

[rosie53]

Oh Bon, what a beautiful picture! Definitely warrants a frame!
Hugs Janette xx

[jazmia]

hi bon,

what a fantastic pic i do hope you are going to frame it as something you may never see again so clearly and well woth keeping,thanks for sharing it with us .

love reneex

we have country file on tv and they ask for unusual pics for their country file calendar ,,,sure this would win it ..

[bonariensis]

Hallo all

Did anyone see the harvest moon last night? My daughter took this picture of her children looking out across Start Bay yesterday evening.

Love and hugs to all. Bon xx

[Carolyn52]

Hello Ben ten
Welcome to the forum. ..you will find a lot of support and help here .
There isn't many ladies on ibrance( paclociblib) yet because it's still not funded for everyone. If you search you will find a thread here with some information.
There's a lot of us here on letrozole ...but if you go into " going through treatment" ..hormone therapy you will find oodles of threads there too for info.
It's always hard to accept secondary dx but feel free to rant and rave as we understand ..
Xx

[Carolyn52]

Hello pippin
Yes denosumab does work like that ..I have mine 6 weekly and find I ache for a while before the jab and then get a couple weeks pain free between. .I get flu like symptoms for a few days after it too.

[Weemee]

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

[Benten]

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

[Pippin]

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

[jazmia]

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 

[funnyface]

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! 

[jazmia]

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

[Carolyn52]

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

[Carolyn52]

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

[jazmia]

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

[funnyface]

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

[sgagliardi]

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 ☹️😥

[Carolyn52]

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

[Carolyn52]

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

[funnyface]

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

[funnyface]

 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

[funnyface]

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

[funnyface]

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

[Carolyn52]

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

[Rose47]

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

[Carolyn52]

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👖👕👢

[Carolyn52]

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

[Carolyn52]

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

[Babsy]

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.  

[PMOL]

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? ❤️❤️

[pina_c]

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

[funnyface]

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

[Carolyn52]

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

[ramade]

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

[pina_c]

Glad to hear mostly positive things about the radiotherapy 😊