68079members
358357posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Highlighted
Member

Re: Bone mets - please join in

Omg Carolyn! Can't believe she said that to you!....so rude, ignorant and thoughtless! 😡😡
Hugs Janette xx
Highlighted
Member

Re: Bone mets - please join in

Good morning ladies
Mild irritation of the day:
Met my new elderly neighbour this morning ..she asked if I had a hip replacement bla bla bla and so I told her briefly ....she replied " wow you look too well to be dying from cancer" ...grrrr what are we supposed to look like ? Should we have a warning tattooed on our foreheads or wear a badge !!!
Xxxxx
Highlighted
Community Champion

Re: Bone mets - please join in

Hooray for all you stable Mabels - enjoy it esecially when you are on a treatment such as hormones which generally aren't as harsh as some of the chemos etc.

Nicky xx

Highlighted
Member

Re: Bone mets - please join in

Natalie
Glad to hear your TMs are stable, good luck with your scan. I was full of gloom and doom before my onc appt on Wednesday as had all sorts of pains in my pelvis that had appeared recently but it seems c was not to blame

B xx

Highlighted
Member

Re: Bone mets - please join in

FF
No we don't have Klondike bars here but I googled and they look yummy ..could easily munch away on them.
Boo hoo ..haven't had my Magnum bar yet today as we have my son's dog and hes on a strict diet as vet said he was overweight ...I normally share it with him but didn't want to tease him so have gone without !! The dog was allowed an Apple for his lunch!!
Xx
Highlighted
Community Champion

Re: Bone mets - please join in

Carolyn, We sure know how to celebrate and spread cheer! Do you have Klondike bars there? I love them too! 

 

 

Stable Mables, I'm tickled pink there are so many of you!! With Springs arrival and all this good news everyone should be floating around in the clouds! Long may it continue!

 

Janette, You made me think of my mom.When she would come watch my kids she would do all kinds of chores. The ones I didn't get too very often. Like lint out of the tube to the outside dryer vent, scour the bottom of pans til they were spotless, etc. I do things for my daughter too.

 

Have a good day! FF

Highlighted
Member

Re: Bone mets - please join in

Thankyou everyone for celebrating with me, My granny's name was Mabel, never thought I'd end up using it.
I go round and do some cleaning and tidying for my daughter sometimes. She suffers a bit from depression and has chronic back pain and her husband has been abroad for 6 monhs. My son and daughterinlaw came up from Cornwall and helped her blitz the house yesterday which was pretty good! The ironic thing is that a friend now comes in and does a bit of cleaning for me. She says that another person she cleans for goes and cleans her daughter's house. I tend to avoid buying clothes that need much ironing.
My legs and feet are aching something dreadful. Had denosumab yesterday, hope they feel better soon although that's not where the c is.
I have now been on exemestane for 17 months. My next scheduled appointment is in October.

love to all B xx

Highlighted
Member

Re: Bone mets - please join in

Hello Janette, well done for being brave and ringing your BCN! I don't think much of you having to do your daughters ironing, though. Mum's, though, will do (almost) anything for their daughters, I know.

 

Hugs. Barton.x

Highlighted
Member

Re: Bone mets - please join in

Brilliant news, Bon! Such a weight off your mind, and after such a long wait, too! I'm so pleased for you! All hail (?) to Exemestane!

 

Hugs. Barton.x

Highlighted
Member

Re: Bone mets - please join in

Jeanette
I hate to admit but twelve weeks without denosumab ..I did ache a lot more too. I had my fix two weeks ago and beginning to be like a little Duracell bunny again with it.
🐰🐰🐰🐰🐰
Highlighted
Member

Re: Bone mets - please join in

Carolyn, with TMs they tend to look at the trend rather than the number, 18 months ago before she switched me to letrozole they had been slowly rising, they were at 167 then.
Will still be glad when my CT results come in though.....don't like to "count my chickens before they hatch" been worried about my increased aches and pains but hoping that's down to the denosumab change (gone from 4 weekly to 8 weekly)
Hugs Janette xx
Highlighted
Member

Re: Bone mets - please join in

Hiya Jeanette
Well best of luck with the ironing ..youngsters just don't do it ....
Although I don't have tm done at my hospital that is surely a amazing low count ? I read on another site of a lady with them at 5000 and she was still working full time and running !!
You scan has come around fast again ...you certainly get good after care at your hospital.
Talking of dining tables ..I burnt mine whilst ironing on it ..so turned the bad bit towards the wall where it won't show !!
Xxxxx
Highlighted
Member

Re: Bone mets - please join in

Well after hearing Bons news I plucked up the courage to ring my bcn for my tumour marker results.......still nicely sat at 19! 😀 got my CT a week today then results the following week!
Carolyn, nice to hear you have that washer going, I'm sat waiting in at my daughters house for the delivery of a dining table, she kindly left me a pile of ironing so I wouldn't get bored though!!
Hugs Janette xxx
Highlighted
Member

Re: Bone mets - please join in

Come on ladies that just read this thread ...if you are a "stable mabel" then let us know as it really boosts moral that treatments are effective against this disease!!

Happy Thursday everyone ....I'm going to jinx the weather ...load the washing machine and get my summer clothes out of hibernation..Time to pack away the furry boots and sloppy jumpers and show off the lovely winter fat !!
Xxxxx
Highlighted
Member

Re: Bone mets - please join in

Bon, yeyyyyy that's great news, our Stable Mabel club is growing nicely!
Hugs Janette xxx
Highlighted
Member

Re: Bone mets - please join in

Bon
Whoop whoop whoop .so pleased for you to join the stable mabel club but with FF making so much noise with her pan lids I've decided to have an extra Magnum lolly in celebration today for you !!
👍👍👍xx
Highlighted
Community Champion

Re: Bone mets - please join in

Bonariensis, Oh my I've got my pan lids out again! Bells on my ankles and tooting my horn! Excellent my friend!! FF

Highlighted
Community Champion

Re: Bone mets - please join in

Carolyn,  Glad you found something to help with your chocolate fix! Yes we have those Magnums! Very dangerous! Only brought them home one time last summer!! Best not even to go up that aisle at the store! Yes I am nervous. I've done fairly well on all my treatments with side effects. The worse was gemcitabine when I couldn't breathe. Some of them were a little tough, but could have been worse. I just feel too lucky sometimes, and get nervous that one of these treatments is going to really bad sometime. FF

Highlighted
Member

Re: Bone mets - please join in

Hurray. I'm another stable Mabel!

Highlighted
Member

Re: Bone mets - please join in

Thank you girls! Changing from zometa to denosumab as my veins are extremely hard to find! 😔 Bit worried about having more spasms but will have to see... seeing the onc next week and he'll tell me when I'll have my first check up scan... watch this space for anxiety/nerves etc etc etc.
Hope you all have been well enough to enjoy a bit of sunshine. Xxx
Highlighted
Member

Re: Bone mets - please join in

Hello FF
Yes my teeth are better now but I do treat them with respect as they old teeth now.
I've enjoyed Easter choc but gone off it a bit and switched my daily habit to "magnum" ..not sure if u get them in US ..they are icecream on a stick with thick chocolate on the outside ...yum very nice.
You must be a little nervous at switching your treatment soon ...it's like comfy slippers u get used to the existing ones !!
Hugs xxxx
Highlighted
Community Champion

Re: Bone mets - please join in

Carolyn, Oops I'm a dummy. I forgot what thread I was on and typed you a message on the evermolimus/exemestane thread. FF

Highlighted
Member

Re: Bone mets - please join in

Ladybird's been on Letroxole/Denosumab for just over 2 years. She still has her spots but so far they're not growing or spreading. 😄
Highlighted
Member

Re: Bone mets - please join in

Hello pmol
I've been a letrozole/ denosumab clubber for 18 months. There are others here that are a lot longer.
Xxx
Highlighted
Member

Re: Bone mets - please join in

Well done to all the stable Mabel's!!! Quick question for you: how long have you been on letrazole/denosumab combination?? ❤️
Highlighted
Member

Re: Bone mets - please join in

Congrats to Ladybird, yet another Stable Mabel!
Janette xxx
Highlighted
Member

Re: Bone mets - please join in

 

Highlighted
Community Champion

Re: Bone mets - please join in

Congrats to our group of Stable Mables!! I just got out the pot lids and I'm parading through the kitchen creating a racket in your honor! FF

Highlighted
Member

Re: Bone mets - please join in

Oh what lovely news for you ..Jeanette and myself here are both stable mabels on the same treatment plan. There are also other ladies here that have been this way for many many years too ...so let's say whoop whoop to letrozole/denosumab club metzers! !
👍👍
Highlighted
Member

Re: Bone mets - please join in

Just had letter from The Christie saying bone situation is stable and there's no sign of any new problems. Good old Letroxole and Denosumab still working well!
Happy days!
Good luck all.
Xx
Highlighted
Community Champion

Re: Bone mets - please join in

Carolyn, That's great! I really can't pick much at all or I gain. I should be able to eat more than I do with out gaining. I eat a yogurt for breakfast, salad for lunch or this low calorie veggies soup and a piece of fruit, and I eat a basic dinner. I can change it up a little. Maybe a veggie omelet here or there. A sandwich now and then or a snack, but that's it. If I go overboard with changes I gain. I exercise 20 minutes 2x  a day almost everyday. I really am fighting against this weight! FF

Highlighted
Member

Re: Bone mets - please join in

FF
I think I read on another thread that the new e and e plan you start soon can cause weight loss so you might loose even more !!
I'm not a big eater but like the wrong stuff but have managed to stay the same weight for eighteen months so must be grateful for something !!
Xxxxx
Highlighted
Community Champion

Re: Bone mets - please join in

 Carolyn, I just picked up a few tops. My daughter works at a clothing store and gets a 40% discount at its sister stores. She can get me the discount.  Also back in 2012 I was down at this weight. I had paced up the clothes and put them in a spare bedroom. I had got sick and changed drugs and added drugs. The drugs made  me gain weight rapidly.  I was in a medical diet of 800 calories and still gaining. I finally just gave up. I finally weaned myself off the one drug and started to be able to lose. I weigh just a little more than I did back then, but I'm a little thinner bc of my exercising! I found a few tops and capries in the box that will work. I might need two pairs. I still have more to lose, but I'm stoked for now! The picture I posted with my son is from 5 years ago. That's the size I am now! FF

Highlighted
Member

Re: Bone mets - please join in

FF
Well done for 50lbs ..that's an awful lot of self control ... nearly four stone in my language ...New wardrobe required !!
Xxxxxx
Highlighted
Member

Re: Bone mets - please join in

Well ladies ..i resisted my eggs until 3pm but ugh I'm feeling sick already ! Started off with hot cross buns ..for breakfast !!
Only on Easter Sunday can we eat our body weight in choc , feel sick but its only once a year.
🐣🐣🐣🐣🐣🐣🐣🐣🐣
Highlighted
Member

Re: Bone mets - please join in

Hello all, chocolate for me, too, this afternoon! Not quite sure where I will put it (but promise to make a valliant effort), as have just got back from a wonderful Easter lunch at my sisters. She is an excellent cook, and stays so calm (I panic dreadfully when I have to cook for visitors). We are all (took elderly parents over too) totally stuffed.

 

I have a lovely big egg, which I bought myself, but also made the mistake of stocking up on other chocolatey treats too (including choc orange, Carolyn (well, 2 actually!)), so not sure where to start.

 

Happy Easter, everyone!

 

Hugs. Barton.x

Highlighted
Community Champion

Re: Bone mets - please join in

Happy Easter all!! I caved! I bought hubby and I some chocolate yesterday. I made the mistake of going down the candy aisle. It kept calling out to me. I usually only shop the perimeter of the store. I only go down aisles if I need something. We were playing cribbage last night and hubby broke open the bags. They were fair game then! I'm trying to not over indulge, because I'm down 50 lbs now. 

Highlighted
Member

Re: Bone mets - please join in

Morning Jeanette
Yep I've got a posh one from hubs too ..also I overbought for the family eggs ...ha ha and I think there is a couple of smaller ones that would be rude to waste !!
Enjoy ..mmmmmmm.xxxxx
Highlighted
Member

Re: Bone mets - please join in

Yes, happy Easter to all you lovely ladies.
I totally agree with you Carolyn, chocolate all the way today! Hubby has just presented me with a big Dairy Milk egg which will definitely be eaten by the end of the easter weekend!
Hugs Janette xxx
Highlighted
Member

Re: Bone mets - please join in

Hello and happy Easter 🐣🐣🐣🐣

Hope you all have Easter eggs to chomp today and forget proper food ..it's a day for eating choc until u feel sick !!
Weather could be warmer but sunshine is fine.
Xxxxxx
Highlighted
Member

Re: Bone mets - please join in

(The tramcars on the Seaton tramway terminating at Colyford are half full size. Getting up the stairs requires some agility. A long time ago when our son was in a backpack we had to pass him up the outside of the car)

Highlighted
Member

Re: Bone mets - please join in

Many thanks...your words mean a lot to me x

Highlighted
Member

Re: Bone mets - please join in

Moijan Sounds like the journey pictured in the film 'The straight story' where the guy travels across part of America on a ride-on lawn mower to visit his brother.

 

Katey you've had lots of advice from amazing women whose stories can only give you encouragement. Can't say much more but send youu big hugs
B xx

Highlighted
Member

Re: Bone mets - please join in

Hi Carolyn

 

great to hear about your driving exploits!

 

next time we 5 meet you could drive to Reading lol

 

howevr, now the tram fom colyford is extnding to Reading maybe you could all catch that?

 

image.jpeg

Highlighted
Member

Re: Bone mets - please join in

Hi katey, try not to worry there are lots of different meds to take and I know someone who works in pharmaceuticals who told me there are lots more in the pipeline and will soon be there for us

ramade xx

 

Highlighted
Community Champion

Re: Bone mets - please join in

Katey, I can say that when I get busy and focus on the positive I feel better. It is too easy to sit and mope! Btw I had 10 years between my primary and mets. My mets set up camp in my lungs along with a few friends! It is in most of the nodes in my chest and one spot in spine. 

 

Janette, I didn't  know about forums with my primary. That was 21 1/2  years ago. Maybe they didn't even exist then. I never felt the need for support witb my primary. I was under the naive impression that if you got breast cancer you treated it,  moved on and pretty much end of story! I knew I f could come back but I thought it was extremely rare. I went on my merry way! Then my happy bubble got busted! I then felt the need to seek, info and understanding! FF

Highlighted
Member

Re: Bone mets - please join in

Hi there...thanks for your lovely comments. Yes I'm currently on denosumab, zoladex and letrozole...hospital every 4 weeks is still tricky for me....I build myself up every time...my mum was recently diagnosed with ovarian cancer and uncle fell off a ladder and passed with the same weekend so have been hit with a run of bad luck...but on the positive side I got married last year and made lots of lovely memories ending in a honeymoon in the Maldives (thought I deserved a treat!).
The anxiety is sometimes so extreme it can stop me doing things...currently having CBT to help...
Need to put my positive pants on ! X

Highlighted
Member

Re: Bone mets - please join in

Hello katey
Welcome back to the forum ..sorry you have had to return but we are real people here that can offer kindness if u want to rant and rave and let off steam !!
There is a thread in the forum for younger ladies that might help too ..although we do have all ages here ..
I had primary in 2004 and thought it was history but it came back in 2015 to bite me on the b.m too !!!

Hugs xxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Katey, welcome to the group, sorry that you have had to join us though! I got dx with bone mets in 2014 after primary in 2007. We all understand how scary it is living with this disease, it's like a none stop roller coaster of fear and emotions. I didn't join the forum first time round but when I got dx with mets I felt I needed more support and understanding of the disease than I was getting from the medical team. The ladies on here have been a massive support and there is always someone on hand to offer answers /support or even to just make you laugh (Carolyn!!)
Do you mind me asking what treatment plan you are on? I'm now on letrozole, denosumab and zoladex.
Hugs Janette xxx
Highlighted
Member

Re: Bone mets - please join in

Hi katey, welcome. I agree this forum provides lot of comfort
I also have spine metastasis and vertebral collapse . I am on hormone therapy. I just try to have a positive mind to calm down my anxiety. 🤔☺wish you all the best.