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Bone mets - please join in

scoobiesue
Member

Re: Bone mets - please join in

Hello funny face. I am new to the forum and indeed to SBC. I have been so encouraged by the remarkable stamina of you ladies. It is so true that ladies are reporting great improvements ,even when things may seem to be failing. I wish you the very best and will be looking out for news of your scan. SSue xx

belinda
Member

Re: Bone mets - please join in

Hope the Onc can sort out the problems for you this week FF , so you can get back to feeling more yourself in good time for the wedding. Take care, Love Belinda. X
Barton
Member

Re: Bone mets - please join in

Hello funnyface, sorry to hear you are currently struggling. It sounds like you are doing the right thing by ringing your Onc to get him/her all set for your CT scan results and to be prepared. Don't rule out your daughter's wedding yet - some ladies on here have had remarkable turn-arounds after a low period. Wishing you all the best. Hugs, Barton.x

funnyface
Community Champion

Re: Bone mets - please join in

Hi girls. I've been away for a few days and seem t o have taken a down hill turn. My O2 levels are fine sitting still but when I move they really drop. They have been dropping at night too. I was already scheduled fir my routine CT on Tues. and chemo Thurs. I'm going to call oncologist in the morning so hopefully he can look at my CT on Tues. and have a plan on Thurs. Very upset bc my daughter's wedding is in 7 weeks. FF

rosie53
Member

Re: Bone mets - please join in

Yeyy Helen great to see you posting again, I check the forum daily to see if you have posted and worry when you are quite 😯

It's good to hear that you finally have someone fighting your corner for you, keeping EVERYTHING crossed for you lovely lady 👍😉 it's about time you had some good results in your treatments!! Sending you a GIGANTIC hug.

 

Hi to everyone hope you are all keeping well and enjoying the lovely weather.

Hugs Janette xxxxxxx 

JulieD
Community Champion

Re: Bone mets - please join in

Helen I'm so pleased to hear that at last you may getting a proper Onc! Thank goodness for K and your other wonderful support team! I hope the Taxol does it's job and when you get transferred to new Onc they will have other ideas for you too. xx

 

belinda
Member

Re: Bone mets - please join in

Morning Helen, will send you a PM re the Taxol. Thank goodness for wing women and people like K! X
2catlady
Member

Re: Bone mets - please join in

Good morning lovely ladies. I hope everyone is okay or doing the best they can xxxxx.
Saw onc yesterday after we'd been over to see K at Maggies. She'd been to see her hubby and asked him which drug I shout be on to try to get me a bit better so I can later be considered for a trial !

So I'm starting Taxol weekly hopefully soon. Pain in side is back giving me hell again. I said to onc I can feel big lump in side! I showed him his answer was oh yes that's a mass??!! And got back mumbling to himself again!!! Went back over to see K and she said get a referral from GP to hubby. My onc is only a specialist in radiography and not chemos!! Her hubby is specialist in chemo and trials. So fingers crossed. And a huge thank you to everyone xxxx two wonderful ladies have been my wingman and started the ball rolling and kept me form giving up.💜💜

Belinda can I pick your brains later for Taxol ?💜
A massive hug to all my cyber friends,Helen xxxxxxxx
sallyhennypenny
Member

Re: Bone mets - please join in

I've been away for a few days and, gosh,  there is alot to catch up on.  Very sorry to hear the news that lovely Bevlaar has died, like everyone, my thoughts are with her family.

 

Good to see Catlady posting again, sorry to hear you have had such a rough time xxx

 

I saw my chief onc yesterday and my tumour markers are now over 3,000, (that's not a typing error!) so i had a 12 minute blast  of radiotherapy there and then on a sore rib, and he is starting me on 12 weekly taxol on Monday.  Not looking forward to it as had chemo back in 2010, but glad something is being done.  Amazing what a difference it makes when you see the top dog.  He is a pretty impressive chap.

 

Now I'm off to see what's happening in the cybercafe...

edwina64
Member

Re: Bone mets - please join in

Hi everyone...so sorry to hear about Bev my thoughts go out to her family, so sad.

Sorry to hear Helen is having such a bad time hope you get on the trial soon. I had a scan yesterday and an onc appmt. I have to stop my bone inj for two months to get my wisdom tooth out. Missing jab tom and August and then get my tooth out hopefully all will be ok. Worried about scan results as last one showed v small progression so this one should tell if e/e combo is working.if not what next? Just had letrozole and e/e so far so I suppose it will be chemo, a bit scared so when I think how Helen must be feeling ...well it must be awful worrying what next! 

Has anyone stopped bone inj? What happens, should I expect my bone mets to progress.... onc said he would leave a message on my answer phone with scan results, thinking of not turning it on so I won't get bad news but oh says have to be  brave..suppose so.

Smartie
Member

Re: Bone mets - please join in

So sorry to hear about Bev, this disease is so cruel.

Helen, sorry the Eribulin didn't work for you. I hope the oxygen is helping and you can get onto an alternative treatment soon. Hope you are feeling a bit better.
Smartie x

funnyface
Community Champion

Re: Bone mets - please join in

Very upset to hear Bev has passed. Hard to understand how some people's cancer is so aggressive. It's so unfair. 

 

Sarn, WOW!!!! You have a busy week. Best of luck.

 

Helen, Happy you are posting. Hoping you feel better soon!

Jam
Member

Re: Bone mets - please join in

Our thoughts are with Bev's family too. Hugs to everyone xJanet and familyx
Macie40
Member

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So sad to hear about lovely Bev my condolences to all her family and friends R.I.P. dear Bev x x x

Stillhere
Member

Re: Bone mets - please join in

Another who has just read about lovely lady Bev's passing. She was an inspiration on this forum and will be sadly missed. Hugs to her family at this sad time xx
rosie53
Member

Re: Bone mets - please join in

Morning ladies 

So sad to hear about our lovely Bev, sending my condolences to her family, yet another heartbreaking loss to this ugly disease!!!

Hope everyone is doing okay, good luck to those having scans, results etc 

Hugs Janette xxxxxxx 

nicky08
Community Champion

Re: Bone mets - please join in

So, so sad to hear about Bev. She will be missed by all on this forum. Thinking of her family and friends at this awful time.
Take care everyone especially anyone struggling at the moment or being anxious whilst awaiting scan results.
Nicky x

Sarn123
Member

Re: Bone mets - please join in

Hi stress head I don't know if you ve had one but maybe a biopsy could shed some light on why the hormones and treatment s your having are not working, it's worth asking things can change from neg to pos I know quite a few now. Good luck love sarn xxx
Sarn123
Member

Re: Bone mets - please join in

Thank you marirose and Belinda for your thoughts and messages they really help❤️Hi Helen hope your starting to feel a bit better and are in not to much pain, thinking of you love sarn xxx
Chocolates
Member

Re: Bone mets - please join in

Just so upset about Bev, it's just so hard isn't it. She was such a lovely lady and I just loved her sense of humour - Bevlaar - she could have hailed from Essex!!!! She was so supportive of everyone and her commitment to her family and her mum - she was always taking her away for a break was just lovely. My thoughts are with her family and everyone who loved her like we did. Another lady lost but not forgotten. Our secondary pin I shall continue to wear with pride as it makes me feel close to us all.

Huge hugs to everyone,
Hxx
helen44
Member

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So saddened to read of Bev's passing. My thoughts and prayers are with her family. Rest in peace Bev, now free of pain. Love Helen xx
Marirose
Member

Re: Bone mets - please join in

Hi Helen nice to see you posting again hope you are feeling a little better x

 

Sarn hope you get some good results this week will keep fingers crossed for you. x

 

Best wishes to all ladies getting results this week x

Marirose
Member

Re: Bone mets - please join in

Seen the bad news about Bev on another site and she has been in my thoughts all day. Rest in peace Bev you don't have to go through that pain any more. Condolences to all Bev's family and friends.xxx

springsummer
Member

Re: Bone mets - please join in

so sad to hear the news about Bev. she too was so kind when i first joined this forum and made me feel so much less panicky about this horrible disease. a kind strong lady. i will miss her very much. condolences to her family. may she rest in peace ss

Tinkerbelle
Member

Re: Bone mets - please join in

Also saw this sad news on another group - This is so sad - my love and thoughts with Bev's family x

LemonDrizzle
Member

Re: Bone mets - please join in

So sad to hear about Bev. Sending strength and love to her family x
Barton
Member

Re: Bone mets - please join in

Oh, Julie! Thank you for letting us know about Bev - so sad! A wonderful lady, who gave me so much advice and help when I was first diagnosed as secondary and put on the Capecitabine. She is sadly missed. Wishing her family all the best and all my sympathy. RIP, Bev. Hugs, Barton.x

Barton
Member

Re: Bone mets - please join in

Hello, Helen. So glad to see you are home now, but sorry to hear how poorly you have been. Your Onc is a right *#*#*#*, but glad to hear you have people on your side willing to fight for you! Lovely to see you back posting. Hugs and best wishes. Barton.x

belinda
Member

Re: Bone mets - please join in

Hang in there S Head, I hope your chemo nurse is right, 4 cycles may well be too soon, hope you feel more relaxed and the chemo starts showing it's working very soon. X
belinda
Member

Re: Bone mets - please join in

Thank you for letting us know Julie. Sad news. Rest in peace Bev, my sincere condolences to your lovely family and friends, much too soon. Belinda. X
belinda
Member

Re: Bone mets - please join in

Hope all goes well this week Sarn, always such an anxious time leading up to these things. X
stresshead
Member

Re: Bone mets - please join in

So sorry to hear the news about Bev...she was such a help to me from when i first posted. Another beautiful lady lost to this awful disease. My thoughts and condolences go nto her family. Sleep peacefully Bev. xx

 

Catlady....so pleased to see you posting again but sorry you are having such problems. You are a ray of sunshine..always picking us up even when you are down yourself...such an inspiration. I hope you begin to feel better soon

 

Feeling a bit low at the moment....halfway through my 4th cycle of erubilin and i am terified that its not working. I don't seem to have had any side efects at all and i am sure i have developed more 'patches' on my skin. The redness all over my 'breast' does not seem to have faded at all. Chemo nurse said this chemo can take a while to kick in but i think she was just trying to pacify me. None of the hormone treatments seem to ahve worked and as far as i know there is only faslodex left and if this chemo doesn't work seems there is gem carb but what after that?  it scares me to think that as each treatment fails my time is being cut shorter. The one piece of good news is that my latest ct scan showed internal organs clear so i really should be grateful. I don't seem to believe anything i'm told anymore after all the misdiagnoses i've had.

 

Sorry to moan..i know there are lots worse of than me but just needed a rant and hopefully a it of advice/reassurance. Thank you lovely ladies. x

Lucy_BCC
Member

Re: Bone mets - please join in

Dear Julie
I am also very sorry to read the news that Bev has died, thank you for posting and please pass on our sincere condolences to her family and friends from all of us here at BCC

Take care
Lucy

2catlady
Member

Re: Bone mets - please join in

Thank you Julie for letting us know.
Oh,I can't believe our Bev has gone after only a year. She was a wonderful lady,great sense of humour and cyber friend. So very sad to hear this news.RIP lovely lady ,you will be sadly missed. Xxxxxxxx
Sarn123
Member

Re: Bone mets - please join in

Hi all you lovely ladies it's great to see you Helen back home and back talking to us all with all your wise words( much appreciated) very sorry to hear the news about bev my thoughts are with her family at this sad time sleep in peace bev 🙏🏻x
I am feeling a bit anxious for this week have ct scan results tomorrow and TM results Tuesday hoping they ve both improved since last time, both had shown progression. I also am booked in for my liver biopsy on Thursday so quite a big week in all! although natural anxiety I am feeling really well at mo and almost completely pain free so fingers crossed(bit hung over though lol few too many wines in sun yesterday but had a good day so worth the thick head today) hope everyone else is having a nice weekend love sarnxxxx
Marie123
Member

Re: Bone mets - please join in

I am so sorry to hear this sad news about Bev. She was very kind to me when I joined the forum. My thoughts and prayers are with her family. Marie xxx
JulieD
Community Champion

Re: Bone mets - please join in

Belinda, we have a few short showers here in Brighton. Missed out on the storms and not sure the rain is clearing the air much but ....

 

I'm afraid I have some sad news for you all, I was on another site thismorning and Bev's(Bevlaar) husband told us that our  lovely Bev passed away peacefully last night. It is of course sad news but Bev can now rest peacefully and pain and fear free. Bless you Bev, RIP xx

belinda
Member

Re: Bone mets - please join in

Morning all, can we all do a gentle rain dance, please, I really want the weather to break here!
Have a peaceful Sunday all. X
belinda
Member

Re: Bone mets - please join in

Ah Helen, we needed you back lovey, no one has sat on the naughty step for ages. 😁 And the husbands will only take their orders from you. X
nicky08
Community Champion

Re: Bone mets - please join in

Helen
How lovely to see you posting again but not such good news to hear how your breathing is. I hope you get a different treatment that works, or at least confuses the little uggers for a long time, and that the Rottweiler is on your case. Big hugs, look after yourself and build your strength up as much as you can. Get some fresh air which you will need after your long stay in hospital and get your Vitamin D topped up in the sun.
Take care
Nicky x
Ps just edited this to wish the pink ribbon walkers the best of nights 👟🌜🌠 x

2catlady
Member

Re: Bone mets - please join in

Oh,ladies,thank you for all your lovely messages. I have tears rolling down my face reading them.
Thank you soooo much ,you get me through the down times,you are all wonderful,very special ladies and I love you all xxxxxx huge hugs,Helen xxxxxx
rosie53
Member

Re: Bone mets - please join in

Oh Helen so nice to see you posting again, so sorry you have been so poorly, it's so unfair you are such an inspiration to us ladies on the forum.

You stay strong lovely lady, sending you a GIGANTIC hug.

Janette xxxxxxx 

yil
Member

London at Night Pink Ribboonwalk

Hi everyone,

Just a quick update my daughter and her friends are walking tonight, they all look pretty and exited.

 

I like to wish all the walkers very best wishes and hope they enjoy themselves and raise lots and lots of money

for this good cause.

Take care

Yil 

Mermaid007
Member

Re: Bone mets - please join in

Big hug Helen xxx
Marirose
Member

Re: Bone mets - please join in

Hi Helen how nice to see you back home you have been reallyreally missed sorry you are a prisoner to the oxygen tanks but as Belinda says they have got one fixed up at the cafe for you so you will be able to join your crazy mates and go mad again. Did you hear the  Abba night think it could be heard over the water in France we are still looking for Marie's white platform shoes. Sending you lots of love and hugs xxx

Stillhere
Member

Re: Bone mets - please join in

Welcome back Helen! We missed you and hope that lots of rest help you to get stronger. We have a specially feather-soft swing seat for you by the lake and 2 hubbies to fan you and rock the seat gently, all in the cyber cafe.
Nan of three, I'm also getting a bit anxious about possible IV chemo now that my Cape is not working so well. I had such a horrid time on EC chemo 6 years ago, had to give up after 2 cycles, had terrible sickness and mouth ulcers, lost loads of weight. I'm just imagining another hormone therapy but have already been on 3, here's hoping. Both tamoxifen (although I'm post menopause) and faslodex have been mentioned to me, I'm ER + as well.
Jam
Member

Re: Bone mets - please join in

Sending love and hugs Helen x
springsummer
Member

Re: Bone mets - please join in

Catlady! so good to hear you are back home. But what a dreaful time you are having. If there is anything I can do re parp trials please just ask. When I next see my Onc ( on the 8th() if you like i can ask him about parp trials and being ill - if you think that will help.

 

\Take care lovely lady,  ss 

LemonDrizzle
Member

Re: Bone mets - please join in

Marie, enjoy the ribbon walk tonight - hopefully the weather won't be too hot or stormy.
Helen, so pleased to see you back here, but not so happy that you're no feeling too good. Thank goodness you had the Rottweiler on your side as your onc still sounds useless. Let everyone spoil you as you get stronger each day.
Hope everyone is having as good as weekend as you can.
Love to all
LD x
belinda
Member

Re: Bone mets - please join in

Hi again Ruth, yes it's a condition caused by chemo damage on the ability of your heart to function, pump efficiently, cardiomyopathy. But I have an assigned specialist nurse, she's great, it's just juggling which takes priority at a given time, cancer or heart. X