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Bone mets - please join in

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Re: Bone mets - please join in

Kaye,that's fantastic news yippppeeeeee 🎉🎊
Wow! Your markers are at "normal" level too! The cap is kicking Cs butt.
Huge hugs to you and your mum in law,take it easy and don't wear your self out, Helen xxxxxxxxxxxxxx
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Hi bertie1, so please for you that is doing so good for you. My mum has been told it's 2 weeks on and 1 week of for as long as it works, is this your treatment too, as you know new to this chemo so trying to get info before my mum starts. How quick did you see results ? And where are your met ? If you don't mind me asking x
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Kaye I am so pleased that your scan was all okay and that your TMs are stable as well....
It must be a very sad time tor you with regard to your MIL, but she will be gaining some comfort from your presence.

Xx
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Thanks once again ladies for your supportbrain scan was all ok thankfully and TMS stable at 30 so onto my 10 th cycle of Cape.Have just had a bit of lunch 5 minute sit down with cup of tea now off to sit with mother in law so my sister in law can go home to have a break.
Take care all
Kaye xxx
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Just got off the phone to the onc to ask if they ever checked the HER2 statue in the original biopsy and he said it was checked but came back inconclusive so did know weather heceptin would be of any use but now he is going to meet with the pathologist in the morning to look at the tissues again before he jets off on his holidays to re-evaluated it. Does this sound it something anyone has come across ?
Lemondrizzle- thanks for you comment and I hope you enjoyed your holiday, you been anywhere nice ?
Lynnq- FairPlay the lady in your group must be a tough cookie
Thanks again for all you support and letting me pick you brains xxx
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Good afternoon everyone
Just back from my 10 day break and already got the washing machine on - can't waste a glorious drying day!
Helen, so sorry to hear that your pain is no better, I really wish someone would sort it out for you.
Kaye, sorry to hear about your MIL. Keeping everything crossed for your results.
Oh Bev not another holiday cancelled. Hopefully you'll feel stronger soon and book somewhere and go straight away.
Sianie, don't know anything about Cape, but the other posts sound very promising for your mum.
Marie, glad to hear you're feeling more like yourself.
Hope everyone is as well as you can be. Back to reality now - off for scan which I hate, even though the onc nurses put the cannula in they usually struggle. Putting my brave face on
Love to you all
LD x
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Hello everyone I am trying to catch up with everyone so forgive me if I miss someone out.

Siane - one of the ladies in my sBCC group has been on cap for 4 and a half years, she us 73 years old and lives life to the full, her SE are dry hands and feet.
Kaye - so sorry to hear about your MIL ...hope your scan results are okay, thinking if you.
Bev - so sorry about your holiday, but as everyone says things will get better for you. Can you get away in the UK...my elderly neighbour has told me that the crows are nesting high in the trees so we will have a good summer. Hope it works, but just a change of scenery will help
Helen - I really wish they could get your pain under control, it is so debilitating to be in constant pain.
Good to hear that you are feeling better Marie...we all have 'down' times but with the support on here we can struggle through it.
Hope everyone else is as good as they can be, taking it easy when they need to, but living life well when they can.
Take care all xxx
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Thanks everyone for your positive comments, we just can't believe things started to move again so quick after the taxol. Hope everyone else it coping ok with treatments, scan and results etc xx
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Kaye,huge good luck hugs for today 🍀🍀xxxx
Sorry to hear about your mum in law ❤️
Helen xxxxx
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Thanks for all your lovely messages well off to hospital keeping everything crossed for scan results.Hope all you ladies are doing ok will update you all later.

Take care all
Kaye xxx
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Morning all, lovely day here in Manchester the sun is shining, hope you all waking up to the same,

Kaye, good luck with your results today will be thinking of you, so sorry to hear about your mother - in- law  I did the same a few years ago and it's a horrible thing to have to go through 😞

Hugs to all Janette xxxx 

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Kaye I hope those scan results have good news stamped all over them for you. It does sound like things have been a bit tough for you lately and it can't have been easy sitting with m.i.l. with all that on your mind as well.

 

Dawn

xx

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Sianie not Diane - wretched spellcheck!
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Diane I have been on Cape twice and have had a good quality of life on it - work full time, reasonable social life, lots of holidays and relatively mild SEs (mainly hand and foot).
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Hi everyone I'm fine - thank you for asking. Taken me ages to catch up on the thread. I'm going to pm bcc to send Sheila a message. I'll let you know if I hear anything.
Kaye - so sorry it's a difficult time. Thinking of you. I hope you have some good news with your results xx
Bev so sorry to hear about your holiday. You will get away but it's important to listen to your body and rest at the mo. You'll be feeling a lot better soon and then like Helen said you can plan a proper holiday without worrying xxx
Sianie - can't help with cape but really hope things work out and a new treatment plan is effective. It's sounds like your mum is struggling and so she is very lucky to have you supporting her. Let us know how it goes.
Helen, I'd feel better if that pain was under control. I hope your onc does something - things don't sound right - there must be something they can do.
Hello everyone else. I hope everyone is doing as well as they can. Good luck to anyone getting results/scans/treatment this week. Im really busy at work and tests on Friday so letting you know now I'll be back on at the weekend. Don't worry xxxxx

Huge hugs,
Hxxx
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Marie, glad you are feeling more you. X
Good to see you FunnyFace, I was wondering if you were ok, was going to put out a call for you, I hope all is well over there. Wedding excitement. 🙂 X
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Good Luck for tomorrow Kaye. Hope your results are all ok.
Sorry to hear about your Mother in law. X
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hi ladies I get my scan results tomorrow anxiety already setting in hope it's good news.Hi Siani sorry to hear about your mum I've been on capecitibine for 9 months and it's been working well for me so far the worst side effect being sore hands and feet .
Helen hope your pain gets sorted soon,nothing worse than being in pain .
Chocolates hope your tests results are good.
Bev so sorry you've had to cancel your holiday ,hopefully you'll be feeling better soon and be able to book one a bit later on.
Hope all you other ladies are doing ok.
I've had a crap few days mother in law not well and the doctor says she's only got days left so sad but thankfully she's not in pain as they've got it under control,so been spending lots of time sitting by her bedside even though she's asleep most of the time now.
Just hope my results are good tomorrow
Take care all

Kaye xxxx
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Oh Helen and Bev, so sorry things are so tough at the moment. Bev friends who have had rads, WBR rads, have taken a long time to recover. Having chemo as well, you really have done well. X
Helen I hope this pain is investigated, why oh why is it such an uphill battle at your hospital? Shout or get someone else to, although of course you should not have to at all. It must be exhausting. Yes you are quite right some of those symptoms can be found in SCC, they are supposed to treat SCC as an emergency. To be honest I would consider presenting at A and E if it gets you investigated sooner and you are very concerned.
Your GP can refer you to go to straight to hospital for investigation to.
Sianie I was on Cap for four and a half years, my good friend Marilf was on the chemo for nine years, she had liver mets. Your Mum should not get the big chemo whammy as they are tablets. The dose can be lowered and still be effective too. As they are tablets your Mum can try them and stop them at any time. PM me if you want to, have any questions.
The main side effects can be tummy upsets, Imodium.
After a time, sore hands, Udderly cream, bought online, Boots Eucerin.
Sore, red, feet, Udderly again and Flexitol.
If your Mum has hair, used the cold cap, she should not lose her hair on this one. After Taxol she should find Cap much easier I think, having had both I know I found it so. X
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Hi Sianie
Sorry to hear about your Mum, as you say you must all be very shocked with this news. I had Capecitabine when my liver mets were diagnosed in 2013 and had nearly 18 months of being stable on it. I then went on to Taxotere (docetaxel) which I didn't get as good a response as I expected/hoped although the continuing regime of a Herceptin and Pertuzamab is still shrinking my mets. Cape is a more tolerated chemo and many ladies have done well on it for a long time so I hope your Mum does the same.
Hi to all the other ladies on here, especially those struggling at the moment. Bev, so sorry to hear you've had to cancel your holiday, I hope you get away somewhere nice soon, even if it's in the UK for a short break.
Helen, I hope the pain gets sorted soon, it must be so exhausting to be in constant pain.
Chocolates, I hope the tests don't show up anything nasty and that you can continue with your current treatment.
Stress head, I have had a portacath since August last year, really glad I insisted on it as my veins are rubbish. I could get my bloods done using it but I tend to still get them taken from my one good vein but I did use it for chemo and now 3 weekly Herceptin and Pertuzamab. It was put in under local anaesthetic and hasn't been a problem.
Hi to everyone I've not mentioned, thinking of you all, but chemo brain makes me forget too many details!
Nicky x

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Sianie,so sorry about your mum.as the ladies have said cap is a more tolerable chemo. I think our wonderful Belinda got 4 years out of it.
Huge hugs to you and your mum,Helen xxxxx
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Hi Siane,

 

I am so sorry to hear the news about your Mum.I have not had Cape myself but I know alot of women who have and hopefully they'll be along soon. It is an easier chemo in terms of SE's than many of the others, the main one's are sore feet/hands but you can use creams to help with this. It can be very successful for good periods of time, we have had women on it for years at a time.. In addition to being less harsh than some it is also easier to deal with because it's oral so less invasive. I hope when you are able to tell your mum more about it she will rethink.

Best wishes

Julie x

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Hi Sainie, really sorry to read your post about your mum,  I can't give you any advice as I know nothing about it but i'm one of the ladies on here will be able to give you some, take care

Hugs Janette xxxx  

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Please please can some help, my mum had amazing results on taxol but then had to waiting 3 weeks to start exemstane and today we have found out that the liver blood last have risen drastically. She has now been offered cape oral chemo but sayes she doesn't want to prolong our agony and try this. Has anyone had good results with it ? As you can imagine we are devastated
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Good afternoon Everyone,

 

Helen ,  I am so sorry you are in such pain.  Please take care.

Bev , so sorry about the holiday , but I am sure as soon as this grotty time is over you will be off somewhere nice.

 

Hope everyone is okay, good luck with results and please look after yourselves.

Marie xxx

PS After the big rant last week , I have slowly turned back into my normal self xxx Thanks everyone

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Hi ladies,

Helen, can' t  believe that you are still suffering, hope they can sort out that pain soon for you.

 

Bev, so sorry you have had to cancel your holiday that's such a shame, stay strong there's always later on in the year when you are feeling stronger.

 

Chocolates, how you doing? When are you having your tests??

Hi to all you other lovely ladies 

Hugs Janette xxxx 

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Helen, Hang in there chickie! I hope they get your pain under control and get to the root of it!! Don't let them wave off your symptoms. Push for answers! Funnyface

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Bev, I'm sorry the SE from rads are still playing havoc and have messed up your  vacation. I hope you feel better soon. Glad the vinorelbine is going smoothly. Wishing you the best! Funnyface

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Oh,Bev,I'm so sorry you've had to cancel holiday as it just what you needed xxx

Right now it's angry eyes👀 as soon as you've had your scan next month you are getting a holiday booked,somewhere AND straight away! The cat lady has spoken xx

You need something to look forward to after all this 💩 you've put up with.
Remember SEs from rads take ages to go.
You stay strong lovely lady and huge hugs are coming your way,Helen xxxxx
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Lovely to hear from you Bev, I am so sorry you are still feeling so poorly and that you will miss your holiday. Hopefully you will soon be feeling a little better which will enable you to arrange something else to look forward to. Look after yourself you lovely lady, we are all thinking of you and everybody else dealing with this awful disease. Jackie xx

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Sorry havdnt posted for while. Still suffering the awful fatigue from the brain rads. Cant do anything...falling asleep on and off all day. Started my 2nd cycle of Vinorelbine last wed. Been ok on that. Have my next scan on 11 june but not feeling hopeful as ive noticed that the small swelling on front of my throat seems bigger and my voice is quieter....also when i cough the sound is different from the airway. More wheezy.
Ive had to cancel my holiday Helen as its only a month away and i dont feel fig enough to travel. ..i cant even walk on my own outside the house as I'm too disorientated and giddy. Onc says this is still side effect of rads.
I had a gut feeling months ago that i wouldnt be going....everything seems to have been snatched away from me.
Hope you're still well and treatment still going ok
Love bev xxxx
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Good morning lovely ladies.
Thank you for your lovely texts.

Chocolate,how are you doing? XXXX❤️❤️🍫🍫

Still no word from Shiela ,please get in touch we are all worried about you.❤️❤️❤️

Bev,how are you getting on? Is your case packed👙for your holiday ❤️❤️❤️

Well I would have loved to say pain was better. Think I was shocked this morning when it wasn't .
Got chemo yesterday and I was in horrendous pain.so onc on duty upped morphine by another 20mg and put me on steroids,hence misery on waking.
I told them I thought it was all coming from back and SCC ,half my tummy is numb and freezing cold to touch. Nobody seams alarmed by that. (Apart from me!) kept telling Dr that I didn't have any SCC symptoms last time apart from this pain around half of torso. She's going to tell my onc and ...... Is anyone's guess.
Huge hugs,Helen xxxxxxx
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Hi Stresshead, I have a Hickman Line (also called a central line). I too chatted to the surgeon whilst it was being fitted! It does have to be cleaned/flushed once a week but it's fairly straight forward so I am hoping to take some equipment with me when I finally go on holiday and do it myself. Lines can be prone to infection but so can lots of other things and I have to say preventing hunt the vein has been a huge bonus for me (like you on Eribulin so 2 blood tests and 2 infusions every two weeks).
They don't use my line for CT scan dye but all my blood tests and blood transfusions go through it. I had it fitted just two weeks before I started chemo.
I am so glad I had it.
Smartie x

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I also have a portacath, which has been problem free for the almost two years it has been in.  Doesn't show even when wearing V or scoop necked tops. I also had it inserted while awake and chatting to the surgeon!

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Hi StressH, lines can be prone to infections and need regular flushing, they are cumbersome too but how about a port? I have a port, I had a couple of clots at diagnosis but this hasn't been an issue. Was awake when port fitted, we all had a nice chat. 🙂 It's amazing how quickly you forget it's there. I'm having a chemo break and my port needs flushing every 4 weeks. I would really recommend one. Take Care. X
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Good morning ladies..i know most of you check this thred and so am asking if anyone can offer ny advice.

Does anyone have a 'line' in for chemo rather than having canula's every time. My veins are rubbish and now on 3rd chemo regime. As thise on erubilin will know it means 2 blood tests and two chemos in 2 weks and i am finding this very stressfull. On my 2nd chemo i asked my onc about a line and he advised against it because of infection. My chemo nurses are recommending that i should now have a line and have got to discuss with my onc next week. just wondered if a 'line' affects you having scans (any metal etc??) and whether scan dyes etc can be administered through them. The nurses did say i would have to go to hospital every week for it to be checked and i wondered how i would go on if we ever got to go on holiday. Also i have pulmonay embolisms sowondered if that would have any effect on the decision. Many thanks for any help you can give.x

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sorry..that was a comment meant for Nicky on her good results. Thought if I did a quick reply to the actual comment it would link it.
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Marie, just wanted to echo what everyone else has said. much love.x
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ditto!!
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Oh Helen, that's awful, mention the numbness at the hospital, you want this scan as absolutely as soon as possible and that will, should make it a priority with them. You hear of nerve blocks, drivers for pain, they MUST help you with this. Can't imagine how draining this is for you. XXX
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Hello Helen - so sorry to hear you are in such awful pain - please take care and glad (lazy) Onc has finally got off his @rse and is doing something! Lets hope he actually acts on the results of the scan!      Hello Chocolates - sorry to hear you are worried and fretting -miserabke, I know. I'm hoping you find it's all in your head (meant in the nicest possible way!).     Hugs and best wishes to everyone else. Those going on holiday - have a good and restful time. Those having tests or results- good luck and try not to worry too much (stupid me - I know you will - we all do!). I have my next CT scan this coming Wednesday to check how things are going now I am coming to the end of the specified Cap rest period. The actual scans don't worry me at all - it's the results that cause the panic.   Love, Barton.x

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Hi Helen, good to hear from you Smiley Happy sorry to hear that you are suffering though, pain can be so draining....don't like to think of our lovely catlady being in pain 😞 you take care and you are officially excluded from the naughty step until you are feeling better.

Hi LD, hope your having a fab time in the Lakes you lucky thing,  I love it up there its one of my favourite places.

Hugs Janette xxxxxxx 

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Good afternoon lovely ladies.

Chocolate so sorry you your not too good.
.sending you huge hugs.yes,minds go into overdrive ,I could say don't worry but as we know ,we do! ❤️❤️❤️❤️

Janette,yippeeee,fantastic news ✈️👙❤️❤️

Hello,to our new friend,spartymum.🙋❤️

Chris,love coming your way❤️❤️❤️❤️❤️

Shiela,please let us know how you are❤️❤️❤️❤️

Tracy, missing you👋❤️❤️

Huge hugs to everyone else❤️❤️❤️❤️❤️❤️

Sorry I've not made roll call 📝 but this cycle has knocked me for six. 🎳
Can't believe I have to start again tomorrow.
Onc is arranging a CT scan as pain is getting unbearable now. I'm going to sleep in pain and as soon as I open my eyes in morning it starts again. I'm totally exhausted with it. Sorry ,just having a moan 😪

I'll not leave posting this long again or I know it will be naughty step and angry eyes will be used 👀.
Huge hugs,Helen xxxxxxxxx

Ps. I've just noticed that right side of tummy is quite numb to the touch.Im not sure if it's from SCC .
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Good morning everyone
Just popping on to say hello before I get shouted at! Been up in the Lakes since the Friday of the bank holiday weekend but coming home on Wednesday for scan, so trying not to let it spoil the last few days of our break.
Janette, I'm so pleased you know what the pain is and you're starting to feel better. New York won't know what''s hit it when you get there!
Chocolates, keeping everything crossed that your tests bring good news, but as for jumping the gun I'm sure we all do this with the uncertainty of this disease.
As always, I'm thinking of those who aren't too well.
Love to you all
LD x
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Fantastic news Janette , whoopee, New York here you come . M xxxx
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You go ahead and have a Wonderful Holiday Janette. 🙂 x
Hope the tests go well chocs. Thinking of you. X
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Janette, that's fantastic news, so pleased for you although obviously very painful so I'm sorry for that. Has raised my spirits. Hopefully all will be sorted for your trip to New York.
Yes the thread has been quiet recently. Has anyone heard from Sheila? If not I'll ask bcc to send her a message.
Have a good day everyone,
Hxxx
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Morning ladies, 

Chocolate, sorry to hear you've not been too good, hope the tests put your mind at rest, hopefully it will be something and nothing and unrelated to the disease like it was with me, but as you have said when we live with this illness every new ache or pain sets our minds racing!!

I have had the results of my MRI it turned out to be a rotator cuff injury...Thank god, they gave me a cortisone injection and it is starting to feel a lot better now, glad I went to the hospital though because at least my mind as been put at rest now and I can go to New York and not be worrying.

Helen, hope you are okay??? you have been very quiet lately, I miss reading your regular posts.

Hope everyone is else is doing okay, hello to the newbies sorry you have had to join us but we are a friendly bunch and are always on hand to give advice, support and to just listen.

Hugs Janette xxxx 

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Hi ladies, how are we all? I'm doing ok but got to have a few extra tests this week - fingers crossed everything is ok. I'm so busy at work thankfully that I haven't got time to dwell on things but the last couple of days have been a bit down. I realise I'm lucky to have had a year and a half of stable but if it turns out I have some progression it brings into play such things as do I give up work, how will a new treatment affect me etc. I know I'm jumping the gun and everything could be fine and it's not cancer related but it's the worry isn't it. Sometimes having some knowledge is dangerous - if I was blissfully ignorant then my mind wouldn't be playing these games. Oh well we'll see what happens.
Janette, glad you've had your MRI but sorry the pain didn't settle in the end. I hope you don't have to wait long for the results. I also agree with the other ladies, as long as your Dr says you are fit to travel then you should be fine.
Welcome to the new ladies - it's lovely to see you hear but of course in very difficult circumstances. This forum is a wonderful place to shout, scream, laugh, cry anything you want to. We are slightly mad I think at times and also have a real laugh. You'll be pleased to know that you want be recruited for quad duty as they are all grown up thank goodness. They kept us all busy for a while and on our toes. I think I've only just recovered!!!
Hi Sheila, chris - sending yu both huge hugs and thinking of you with much love.

Hello everyone else - I'm sorry I've been quiet. I will try and get on a bit more next week.
Just settling down for the VE celebration concert - really looking forward to it.
Hope everyone is having a decent weekend.

Huge hugs,
Hxxx
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Hi Spartymum

Welcome to the BCC forums, along with the support you have here please feel free to call our helpliners to talk your concerns through on 0808 800 6000, our team are here to support you and your Mum weekdays 9-5 and Sat 10-2

Take care
Lucy BCC