Community Champion
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Hiya Maldives

Everybody has a unique pattern for cancer and yours is very unusual ...the procedure planned must be a good one as they wouldn't be risking it if they thought it was a waste of time.
You don't say whether it's going to be done under general or local anaesthetic. ....general sounds best
As u go sleep and wake up ...all done !!
Special hugs xxx
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Re: Bone mets - please join in

Hi Maldives, please try not to look into "survival rates" too much, this cancer lark is VERY individual and not one is the same!
Good luck today, I hope things go ok and they can explain things to you so it makes more sense.
Hugs Janette xxx
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Hi Maldives, hope you get some sense out of your onc nurse today. You shouldn't have to find out about such things by reading a letter. I hope all goes well on Saturday we'll all be thinking about you.

Hugs Bon xx

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Maldives...try and ignore the 'survival rate' stuff...we dont know how valid the research was and anyway...it wont help to think about that!

 

hope tomorrow goes well...poor thing you have had a lot of things coming up!

 

yes I was on Taxol, made me tired...give yourself some slack and rest upxxx

drink loads of water thoxx

Mx

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Re: Bone mets - please join in

Hi. I'm feeling really rubbish at the moment. I have been lucky with side effects and I'm ashamed to say quite blase about the cancer. Some say it's my way of coping but I just think I've been lucky not to have had bad side effects. My cancer is very widespread throughout my body in the bones. Now in my liver too. My worry is the metz in the mandible and dental nerve.
Reading up on it I didn't realise it's got a low survival rate. I just thought it was a nerve thing they were blocking. I'm going to speak to my oncologist nurse tomorrow to find out what's going on as there has been no mention of this till I got a copy of my referal letter this weekend. I hope I've misunderstood the letter. Oh well what will be will be. Femur nails are ok but legs are not working side effect of the chemo.
Sorry to blather on but I can't talk to my family about this one yet. Xx
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Jellytot Hope tomorrow goes well and you feel good being back amongst you colleagues
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Re: Bone mets - please join in

Maldives
It's been ages since we heard from you and it's good to hear from you ..I think last time u had just started cape and you were feeling very energetic walking your dog!!
Wow ..that's pioneering surgery isn't it but if it takes the pain away ...you will feel so much better.
I personally haven't any experience of taxol as a chemo but others here will have .
How are the femur pins ? Are you mobile still when you are awake ?
Take care ..and don't stay away too long this time.
Hugs xxx
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Ops didn't finish that.my new chemo is pacl itaxel (taxol)
It's knocked me off My feet. I'm so tired even getting out of bed is exhausting
I'm finding it difficult to everything.
Have any of you ladies had this drug? What was your experience with it?
I'm also having problems with my jaw. I don't know if you remember me saying earlier in the year Carolyn but it now turns out I have mets in the jaw blnd which is being operated on in Southampton on Saturday. It's a balloon procedure to block the nerve to stop neuropathy pain in the face.
I. Really scared about it as it involves Neuro surgeons going across my main arteries with a needle. It will leave me with a numb face but hopefully pain free. If any of you ladies have experienced either of these things I could reply do with some support. Thanks maldives CD
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Hi everyone maldives here. I'm still alive and kicking been busy trying to stay alive with all different treatments. I'm on a new chemo for me anyway called paci
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Hello jellytot
Phew glad u can restart the drug again this week ..unfortunately being such a new treatment there isn't going to be much support with side effects ..I think you maybe might have to Google the drug and side effects/ results of trial etc ....
But we can help with a bit of useless banter here ...that's the wasp problem sorted ...please no reports to cruelty to wasps club but ssh I have an electric fly swat which I zap them with if they even dare to come into my house ...I have a little wasp cemetery on window sill now ....
Xxx
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Another wasp hater here!

 

Hope you are all doing as okay as possible. 

 

I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.

 

ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x

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Isn't it strange that something an inch long wearing a yellow and black jumper can petrify us ...when we are all living day to day with treatments and side effects !!
☺☺☺
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Yes...I am terrified of wasps tooxxx

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Re: Bone mets - please join in

Hiya Moijan

Yep ..this thread has gone very quiet ...but with this weather ..wow why post here when we can all be out surfing ( or kayaking like ff)
The thing that spoils the great outdoors for me is wasps ..they are evil little devils ..I'm petrified of them so I've perfected my wasp dance now !!
Anyway. ..forgetting them ..have a good bank holiday ladies ...
Hugs xxx
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Re: Bone mets - please join in

[ Edited ]

Hi Guys!

 

my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.

 

however, I think we all worry when one of us disappears.....makes us wonder if they are ok!

i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.

I do hope everyone is chugging along nicely?

 

 

MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.

 

 I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group' 

arent we ladies?. And my guess is, this forum also extends lives.

Moijan💚💚💚

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Re: Bone mets - please join in

Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum! 

Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.

Nicky x

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Hello bon
Lovely photo and yes ..as you don't sleep at least u saw the lovely sky ...
I had a good sleep one day this week too ...makes such a difference the next day ..never thought sleep would be a luxury !!
Xx
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[ Edited ]

There are few upsides to not sleeping well but sometimes you see beautiful things. The other day I looked out at 5 am to see Venus close by a slender crescent moon. Dawn was breaking, bats were still flying and crows were having their first morning squabble. This morning I looked out at 4 am and saw Orion low in the eastern sky - a sign that autmn is almost here. It didn't look quite like like this picture.

 

orion_Large-e-mail-view.jpg

Slept really well the night before last, can't remember when I last did. Felt so different yesterday.

 

This has nothng to do with bone mets. We used to post things that had inspired and moved us in the secondary private group but hardly anyone goes there now so please excuse me for postng here.

Hugs to all Bon xx

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Re: Bone mets - please join in

Good morning all, 

 

I am amazed at all the breast cancer knowledge I have gained from this forum.

Thank you all who take the time to get this information and post it for us to read. 

 

I can't believe there are so many treatments oncologist use to help us live longer. 

 

I was diagnosed with secondry bone in March this year and was devastated but over the months this forum has helped me cope and I am more relaxed about the situation. Thanks ladies.

 

Take care out there and I hope the sun shines for you this bank hoilday. 

 

Crissy xx

 

 

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Thanks Nicky, that does explain why they had to wait quite a while to get these results through.  I am afraid I am a head in the sand kind of girl when it comes to my oncologist appointments and I just get the urge to bolt !!  I must be more pro active and knowledge is power but I am a complete disaster as soon as I get in the hospital.  So a big thank you to you lovely ladies .

 

The sun is out here this morning so I hope everyone has a lovely long weekend, out and about, in the garden or just winding down.

 

much love xx