62210members
327488posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Member

Re: Bone mets - please join in

Afternoon Carolyn

Just sent you a PM. So pleased there is nothing sinister going on.

Time to celebrate.

Hugs
Linda
Member

Re: Bone mets - please join in

So glad all clear but very sorry you’re not well. Hope you get some answers soon. Agree about the NHS.
Member

Re: Bone mets - please join in

Hello ladies
Been a bit quiet here lately as I haven't been too well ..had a brain scan a few weeks ago and been waiting for results .
Brain head and face. .clear
Dental x ray ..clear ..no jaw probs.
Lymph nodes in neck ..clear.

Still haven't found out why I have a numb swollen face and dizzy spells but carrying on with exmestance and everolimus for another 4 weeks.

Had a new oncologist today ..brilliant ..just got everything checked out whilst I waited ( 5 hours but worth it )

Hip hooray for NHS. ...
Highlighted
Member

Re: Bone mets - please join in

Hello Briony, welcome to our group. Definitely tell your doctor, always. i have pins and needles because of cancer pressing on nerves. For this i am treated with Pregabalin which is brilliant.

Hope this helps

hugs

Ramade

Member

Re: Bone mets - please join in

Good!
Member

Re: Bone mets - please join in

That’s good to hear Anne! Enjoying the sunshine here too.

Member

Re: Bone mets - please join in

Hope you get an answer. Not sleeping is horrible
Member

Re: Bone mets - please join in

So glad you had a good day. Blood count back up so on Ibrance again but lower dose. I haven’t heard of the tingling but someone else may well have done! I was very achy after my first zometa injection. Still sunny here!
Community Champion

Re: Bone mets - please join in

Welcome Briony! It could be the drugs causing this. Maybe a change in treatment would help. I have had a lot of different treatments, but not this one bc I'm HER2-. If anyone else had this treatment I'm hoping they jump in and answer you. 

 

Hugs, FF

Member

Re: Bone mets - please join in

Hello all, this is my first post. I was diagnosed in June 2016 (breast spread to spine + ribs) and was initially put on docataxel, herceptin, pertuzumab + zometa. Docataxel was stopped after 6 sessions. Then in January this year I was told that wasn't working so they put me on TDM-1 and denosumab.
Anyway now I have horrendous tingling and pains in my toes, hands, feet which means that I haven't slept for 2 weeks!! I think I am losing the plot.
Any advice on how to manage this intolerable torrent?
I am seeing my oncologist on Wednesday and I do have a fairly helpful CNS.
Thanks in advance x
Member

Re: Bone mets - please join in

Hi Anne, glad you have good support. Funny you should say about not thinking about cancer every minute, as I’ve thought that the last couple of days. Nice feeling isn’t it?

Hope your blood count is good to go tomorrow. 

My secondary is also in my bones, it was on my sternum that a lesion reacted to the chemo to show up on a repeat ct scan. I’m hoping that as I’m HER2+ they will agree to keep me on Herceptin and Pertuzumab for as long as it is working - I see the Doctors at the end of the month when I hope to be given the 👍 Also having Zometa every 6m for 2 years initially. Had the first one in March. And have Letrozole daily. 

Had a lovely day thank you, and the sun was shining which makes the countryside look so beautiful. Xx

Member

Re: Bone mets - please join in

Lovely wedding. .watched every minute from 9am but Victoria Beckham looked liked she was going to a funeral in that drab dress and she's a dress designer ..all that money and a handsome hubby doesn't seem to bring her much happiness ..she wants to live in our shoes ..that's what misery is.

But a good day for the British economy with all those designer outfits , shoes and hats bought. Thought George Clooney wife stole the day in her beautiful mustard outfit and of course queen looked nice in lime green .
Member

Re: Bone mets - please join in

It was nice and quiet on the beach yesterday but I did watch it later and loved their happiness, the music and Bishop Michael's sermon. Let's hope they are given the chance to have a happy life together without all the pressure.
Community Champion

Re: Bone mets - please join in

Did we see the cake? I watched but saw No Cake?M

Community Champion

Re: Bone mets - please join in

Victoria Beckham.apparently is miserable!! Someone's commented that she doesn't need to smile,  just look at her. Well I don't know what they see. Oh, she has a nice figure but her miserable expression takes all her beauty away. The drab outfit also added to the miserable look! I googled her and she looks miserable most the time. Very unattractive pouting!

Member

Re: Bone mets - please join in

By the way why does Victoria Beckham look so miserable? Her life looks pretty good from the outside!
Member

Re: Bone mets - please join in

I have excellent support and am just starting not to think about cancer all day every day! My secondaries are in my bones. I am on Anastrozole and bone injections plus Ibrance but I have had to have two weeks off Ibrance as my white cell count has dropped. Appointment tomorrow. Do you know what treatment you’ll be on? I’m not sure where your secondaries are? Maybe you’d prefer not to say. Enjoy seeing your daughter. Enjoy all you can. It’s easier said than done but between appointments and treatments life needs to be lived. Well done you for the progress you’ve made. Hope it’s sunny there!
Member

Re: Bone mets - please join in

Hi Anne, fab wedding yesterday they so made it their own, and seemed to enjoy it all as did the rest of us!

I am doing ok, general aches but manageable and fatigue but again I’m working out what i can and can’t do, so still learning!

Got another 10 days until I see the doctors, when I hope to have my treatment plan agreed, so for the momemt I’m feeling calm and even have times when I don’t think about cancer at all. That’s certainly progress! Still waiting for my first counselling appointment. 

I hope you are doing ok and managing the side effects of your treatment. Do you have good support? 

I am off to see my daughter today, can’t wait! 

 

Have a lovely day everyone. Xx

Member

Re: Bone mets - please join in

I.just loved the royal wedding yesterday ..breath of fresh air ..and a boost to UK economy with all those designer outfits, hats and shoes!
Victoria Beckham looked miserable and drab but George Clooney wife stole the style stake for her beautiful outfit. Queen looked lovely in lime green too.

I'm proud to be British when I see how the wedding was staged so beautiful .
Member

Re: Bone mets - please join in

 
Member

Re: Bone mets - please join in

How are you getting on butterflyflyfree? Hope you are okay and enjoyed the Royal Wedding and maybe some sunshine.
Member

Re: Bone mets - please join in

Yes. Lovely weather and a stunning bride. Loved the dress. So elegant
Community Champion

Re: Bone mets - please join in

Meghan looked stunning! Elegant gown and gorgeous vail. The groom looked handsome. They both were shining with love. Wish I could have tasted cake. FF

Community Champion

Re: Bone mets - please join in

We have a moth infestation...so creepy, keep finding pure all over things and even under my quilt!

 

so I think stink bugs and huge ferocious bees would really creep me outxxx

Member

Re: Bone mets - please join in

Hey Carolyn

He was only looking for the thread on the web and spied you!

Pippin

Member

Re: Bone mets - please join in

Ff
Stink bugs sound awful ...ugh. it's funny once u get it in your head ..it makes sleeping difficult.
We have these rough ugly bees that keep coming in our lounge. .they are not honey bees but have a large stinger. Hubby thinks he's killed about 2 a day for the last month as they won't go if u open the window and are quite aggressive ..think they must have come from Europe or something. ..never seen them before.
Community Champion

Re: Bone mets - please join in

Carolyn, That's what I've heard too! We also have these bugs called stink bugs. You can smell them when you squish them. They have a shield which makes them hard to squish. They came from one of the Asian countries and are spreading over here. If you have a couple of them in one spot you can smell them too. We drown them in a bottle of soapy water. Before I get in bed I do a search. Ceiling, walls, windows, shake my sheets, etc. Especially the ceiling. I don't want one to lose its grip and land on me.  We usually get one stink bug a day. They say an exterminator can't do much for them. 

Member

Re: Bone mets - please join in

Got into bed last night hoping he didn't have any brothers or sister's seeking revenge but took a few extra tools to bed just in case ....a bowl to cover one with and a fly swat !! I am not that scared but hate the thought of them crawling on my pillow. Didn't I read somewhere once that everyone swallows a few whilst sleeping during their lifetime ! 🐜🐜🐜🐜🐜
Member

Re: Bone mets - please join in

My daughter can't stand spiders. She didn't get it from me, and it was apparent from a very early age. it seems to be a deeply embedded primal instinct.

Member

Re: Bone mets - please join in

Carolyn, it gave me the creeps just reading your story! If they have a picture of a spider in the newspaper, I have to turn over the page and not read it!
Community Champion

Re: Bone mets - please join in

AAaaargh. I would not have been able to get back to sleep unless I had done the same thing Carolyn. I really hate spiders and I can feel awful for days if I see a big one. I even hate the emojis of them and keep meaning to write to the developers to take them off the animals page!

Hipe you got back to sleep and you have seen the last of them.

Nicky x

Member

Re: Bone mets - please join in

Oh ladies what a shock ..woke up 2ish for my coffee /bicky and there's a huge hairy spider on my pillow . No time to scream ..hit him with my kindle but he ran off ...So pillows,sheets removed and found the little blighter licking his wounds ..hit him with my slipper ..still refused to give in so sprayed him with fly spray that seem to give him energy to recover ....well was a bit short of lethal weapons for hunting spiders so in the end grabbed him in a baby wipe and flushed him down loo. Enjoy your swim mate .....

 

Member

Re: Bone mets - please join in

Oh ladies what a shock ..woke up 2ish for my coffee /bicky and there's a huge hairy spider on my pillow . No time to scream ..hit him with my kindle but he ran off ...So pillows,sheets removed and found the little blighter licking his wounds ..hit him with my slipper ..still refused to give in so sprayed him with fly spray that seem to give him energy to recover ....well was a bit short of lethal weapons for hunting spiders so in the end grabbed him in a baby wipe and flushed him down loo. Enjoy your swim mate .....

🐜

Community Champion

Re: Bone mets - please join in

A beautiful day in Hampshire as well. I love days like this with a bit of a breeze and clear blue skies. Washing on the line for me as well. The good thing also is that we don’t get the hit and humid nights when it’s this breezy so hopefully get a good nights sleep.

Nicky x

Member

Re: Bone mets - please join in

i agree Carolyn! What a lovely day. This isn't very relevant to the thread but I have my washing out, blowing on the line in the sunshine. Happy day! I haven't discarded my vest yet because I am a cautious person, but the week looks good.

 

Hoping everyone out there is having a good day! Lots of vit D available for free!

 

mo          xx

Member

Re: Bone mets - please join in

Hello ladies

All quiet here so guess you all enjoyed the lovely sunny weekend ...
Summer is such a nice time of the year ...got my flip flops out and summer things now ..that will jinx the weather. .all chunky jumpers binned. ....

Member

Re: Bone mets - please join in

Thank you Nicky and Anne. It’s good to know there are treatments that are working. Gives us all hope. Xx

Member

Re: Bone mets - please join in

I’m doing my best! I’ve certainly struggled to come to terms with the secondary diagnosis. It seems that everyone I meet has had no spread and is over it all. It’s so good to connect with people who understand. It’s also reassuring to hear that sometimes treatment can work well! Thank you for the encouragement
Community Champion

Re: Bone mets - please join in

Hi butterfly

When I was first diagnosed with secondaries (in 2008) I had chemo as I had a local recurrence. After that I had anastrozole which worked well for nearly 5 years so it is possible to live fairly normally with little hospital intervention and few side effects. I have since had other chemos as well as other hormone treatments  so although it might seem strange that a tiny pill can keep secondaries at bay I can vouch for the fact that they can! And that was before all the additional drugs which work alongside them have some along, such as palbociclib which increase the period of effectiveness of the hormonal treatments.

Giod luck

Nicky x

ps Anne - it’s good to see you joining in the forum and offering advice, you seem to be in a better place now which I hope you are. This secondary business is the pits but by using this forum you know you’re not in it alone.

Member

Re: Bone mets - please join in

Well done you. In my hopeful times I see that in some cases secondaries can be kept relatively quiet for some time. There are ladies here who will confirm that. I didn’t have any treatment for primary as the secondary was found in my bones. On Ibrance and Aristozole plus bone injections. Seeing family today and learning to see beauty again. Hope your treatment is bearable and successsul. I think there’s quite a few they can try!
Member

Re: Bone mets - please join in

Hi Anne, having a good day today. Was signed off from consultant radiographer yesterday, which has made me realise that all of the primary treatment has now finished. Which is good. Now the emphasis is on keeping any rogue escapee cancer cells away, for as long as I can, by continuing with Herceptin, Pertuzumab and Letrozole. 

 

Walking in the woods seeing the fading bluebells, and returning across a field with cowslips was my beauty for the day. Shame it’s turned nippy again though, have had to dig my hats back out again. Still not got enough hair to keep my head warm! 

 

Have a a lovely weekend. Xx

Community Champion

Re: Bone mets - please join in

Ramade, Oh, I've seen them flip out from UTI's! She is still in the hospital. No one is saying anything. 

 

Keep plugging through! It's such a pain needing the IV chemo and having to go sit there! I tried not to whine about it. My brother was on dialysis and it took 6 hours 3 x a week. Very daunting.

Member

Re: Bone mets - please join in

How are you getting on butterfly? Hope you are seeing some daily beauty in life. My mother sent me a picture of some ducklings today. So sweet
Member

Re: Bone mets - please join in

I hope it’s working.
Member

Re: Bone mets - please join in

hi ff, just read your post, it seems from my experience with dementia patients they flip out when they have a uti, i don't know why though.

haven't been posting recently because i am still going through 6 months of iv chemo (third time). half way now, just had an mri last week to see if it's working, waiting for results next week.

lots of love and hugs

ramade

Member

Re: Bone mets - please join in

It is very time consuming dealing with all the appointments and things. It can all get a bit frustrating. Totally understandable. But a holiday sounds good!
Member

Re: Bone mets - please join in

Hello Ruth

Its good to let off steam and this is the place to do it as we totally understand ..it's bad enough dealing with this disease but chasing and having to keep things on par is something we shouldn't have to do.

I'm chasing scan results and getting no where ..I do not have a bcn nurse!

Hugs xxx
Member

Re: Bone mets - please join in

Hi everyone,

 

I very rarely post on here, but always read what others have said.

 

Going back to dentistry, I have been led a bit of a merry dance lately.  I was supposed to have a crown removed from a back molar, the underlying tooth filled and then a new crown fitted.  The first part was to be done yesterday.  It was quite difficult to arrange this as the dentist wanted confirmation from my consultant that it would be OK to do it, because of the danger of osteonecrosis.  My consultant is presently on maternity leave so the secretary asked another one who said it would be OK but it must have it no less than four weeks after my Denosumab injection and no less than four weeks before the next one.  I therefore booked an appointment with the receptionist for yesterday and cancelled my injection for that day.  However, after waiting about 20 minutes after the appointed time in the dentist's, I was informed they couldn't do it as the receptionist had only booked me in for 30 minutes and it would take 75 minutes!  I was really fed up.  You would have thought someone would have told her how long it would take.  The dentist also said that asking the consultant had only been a precautionary measure, as the jaw bone wouldn't be involved.  Fillings are OK (which I have had before whilst on Denosumab) but extractions or implants are not.

I made another appointment for 21st May and then had to phone the Macmillan unit to explain what had happened.  The lovely nurse there decided I should come for my appointment for bloods and to see the doctor on 31st May and then he could say when I could have my next injection.  

This is really annoying as we are trying to book a holiday some time in June that will not clash with any of my appointments.

I am off for a CT scan tomorrow.  I had to press for it as I hadn't had one for twelve months and haven't got any noticeable symptoms.  I don't think I have ever had any TM tests, just the usual blood tests.  

Anyway, I just wanted to let off steam and hope I haven't bored anyone!

Ruth (Windflower)

Member

Re: Bone mets - please join in

How are you getting on? Hope the treatment isn’t too awful and you are coping
Community Champion

Re: Bone mets - please join in

Carolyn, My one heart drug is on the medium reaction list. I have been feeling lightheaded since I started it. I've slowly been weaning myself from it. I'm down to 1/2 pill every other day. I was going to call my cardiologist about the dizziness. Now, I need to call bc it's on the list. Can cause face to swell, legs etc.  FF