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Bone mets - please join in

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Re: Bone mets - please join in

Hellooo helen! Nice to have you back although i bet you'd prefer to be across the pond lol! Hope you had a fab time....sounds as if it did your health a world of good ...and yes thought your dress was something else truly!
Love bev xxx
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Good afternoon lovely ladies, how is everyone ? I haven't read all the posts yet but will get around to it,hope everyone is okay. I've missed our chats in the mornings and "role call" making sure everyone is okay.

Had a wonderful time with not as much pain as usual. Holidays should be on the NHS for us as I hardly took a painkiller. I'm shattered but made every minute count .
Just back and starting washing mountain.
Now ladies what did you think of my wedding dress as I became mrs C lol .
Huge hugs to all my wonderful cyber friends xxxxx Helen xxxxxx
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Hi ladies I am the same as Pam I go Monday for bloods and TM and get results next day in clinic also scan on Thursday for result in Tuesday clinic.

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Ive just been to get bloods done this am.....for clinic tomorrow afternoon. I always get the tumour marker results back at that appt(I go especially the day before to be sure tumour markers are back for clinic).

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Ditto Janette I ahd no idea either! Just had second FEC not to bad this time but early days I know. Hope it's a way off for you though Janette xxx
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Hi Faraway hope there is no spread for you. Cotswold, dog, fire Heaven oh and OH lol. Hope you have a fab time xxx
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I am an NHS patient. Tumour markers are the same just two days. Mine are tested at the same hospital I attend they are not sent anywhere. It is dreadful the different standards of service between NHS hospitals! Love to all xxx
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Hi all hope you're doing ok.Im the same as Bev I have results of scan a week later and when I attend clinic I get TM results at the previous clinic.As I was told the blood results are done the same day as clinic to see if they're ok for onc to give me the Cape and the blood for my TM are sent to different hospital and they take about 2 weeks.
Kaye xx
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Hi janette youre welcome. I wait a week for my ct scan results and tm results. The TM test takes longer to come back and when i attend clinic i get the TM results taken at the previous clinic.
Love bev xxx
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Morning ladies, a bit nippy here today.
Bev, thank you for the link it was very helpful.
Faraway, i always have to wait 3wks for any scan results!! And its the same with TMs, its just the worst thing, wish i got mine after 2 days, is that NHS or private you get yours back so quick? Is it the same for TM? My onc said they have to be sent away and take at least 2wks.
Hi to everyone love and hugs Janette x x
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Hi Janette, two weeks is such a long time I am pleased your OH rang up, its ok them saying onc is not too worried but she is not living with this day in day out! I normally have CT on a mon and results on weds so I am lucky in this respect. Fingers crossed for you for Thurs xxx
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Hi janette. Heres a link to a factsheet that explains tumour markers and how they are used. Hope it helps. Love bev xxx

http://m.cancer.gov/topics/factsheets/tumor-markers
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Hi Faraway, don't know about the CT yet, seeing onc on Thursday.
My bcn said my onc wasnt too worried and she would see me in 2wks at my appt but my oh rang her to say we are not waiting 2wks we want to see her this wk.
Can i ask any of you ladies what exactly does the TM tell them? Does it measure the amount of cancer in your body??? Sorry to sound a thick but nobody has ever explained it to me.
Hugs Janette x
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Hi Janette, sorry to hear about your markers being up was the CT ok though? Xxx
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Hi Faraway, good to hear from you, i get how your feeling, had my CT last wk and my bcn rang to say my markers are up. I just burst into tears when she told me, i have been getting more pain lately so maybe should not have been surprised. It is so unpredictable and scary this rotten disease!! Like you i'm so scared of chemo, so far i have been lucky enough to never have to it!!
You enjoy your time away it sounds lovely.
Good luck to all the ladies going to Westminster.
Chocolates, please will you ask why us women are not better educated on secondaries when dx with primary, i had no idea it could come back in your bones and never heard of mets!!
Hugs Janette x x
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Hi Chocolates & Tournesel I look forward to meeting you with the MPs on Weds.

Moneck

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Hi Chocolates, good luck with the MP's I am sure you will do us all proud, looking forward to hearing all about it. Good luck with your scan xxx
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Hi Tournesol, fantastic you're going. Another cyber person I'll get to meet. Looking forward to seeing you too.

Faraway - I agree with you - our minds are worse aren't they - everything can quickly get out of control. It's my scan on Tuesday - I already have lots of pains I didn't have before. Saying don't worry doesn't help either. Go and enjoy your week away and that lovely fire. You deserve the break. Fingers crossed for your scan.

Hxxx
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Morning all, not posted for a while but feeling a little low so thought I would. Had bone mets from 1st diagnosis over two years ago and have been constantly stable which is great. Been having bone pains for last few weeks but the pain seems to move around so think it must be a spread, got CT week tomorrow already booked in as TM doubled three months ago so they are keeping a close eye on me. I am so scared of Chemo again. The waiting game is more painful than the pain itself! Got Oramorph so that is helping but it makes me so dopey I don't like taking it. Ok moan over. Got a week off work and am staying in a gorgeous thatched cottage in the Cotswolds, arrived last Friday with OH and dog, I do love rainy days being indoors with the fire roaring. Xxxxx
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Hi, I'm also going to the Westminster event. Looking forward to meeting you Chocolates. And will try and cover all the issues I'm aware of from the forums as well as my own experiences.

 

Tournesol.

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hi Chocolates let those mps realise that drugs new and old can extend survival by years not just months ,don't think people really understand xx

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Morning ladies, lovely day here, got the washer on : - )
Oh what a rotton nights sleep i had, had a curry around 8.30 and a glass of wine and boy did i pay for it, i sweated buckets!!!! The joy of early menopause!!
Hope everyone is "ok" hello chocolates, Bev, Shelia and all you other ladies.
Waiting for a phone call from my GP tomorrow to confirm if he is happy to fill in a DS1500 form for me as my bcn or onc won't ggrr!! He is lovely and as already said he will write any letter etc i may need so fingers crossed he will do it.
have a lovely day hugs Janette x x
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Morning ladies, bright start to the day here. Desi I hope you're managing on FEC - and it is working for you. Flo - fingers crossed the chemo works - it's the worst feeling when you are hurting so much. It's difficult to be optimistic isn't it as the pain drags you down. I've got everything crossed for you that you start to feel stronger soon.
Yes when is our lovely Helen back - so looking forward to hearing about her wonderful time.
I'm going to be at the MP thing this week re secondaries. So if any of you have something you'd like me to pass on please pm me and I'll include it if I can. A bit anxious but want to do all of us proud and say it like it is. They have to listen to us.

Right I'm off to get the day started - lots to do. Sheila thinking of you as ever

Huge hugs everyone,
Hxxx
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Keeping my fingers crossed that FEC zaps it for you Desi-2.

X

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Hope it works for you Flori! I've extensive spread whilst trying letrozole just to find I'm actually TN now pinning my hopes on FEC 2 treatments done 4 to go hope we're both lucky xxx
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Thanks JulieD - I think if I'd got some treatment as soon as possible after surgeries I'd be feeling a bit more optimistic but I know how much it's visibly been progressing so I fear what's been going on that isn't visible. I'm clinging to the hope that I respond well to Gem Carbo, as I know some TNs have.

X

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Hi everyone. Yes final salary pension schemes are based on your your final salary multiplied by the number of years worked (so half time work counts half a year for each year worked.) Most public sector public schemes have enhanced pensions for those retiring on ill health grounds. Infact you can sometimes take it all as a lump sum...in the NHS worth about 6 or 7 years pension cos its tax free. One situation where it is important not to reduce your hours prior to claiming is if you have an income protection policy cos this is based on your income at retirement.

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Certainly is a minefield. You are right Lynnq it's not all pensions it depends what sort you are on, but thought it worth bringing to people's attention so the right questions can be asked when seeking advice about going part-time etc.

 

Flori, it really does pee you off sometimes doesn't it. Don't pay too much attention to the timeline given as no-one really knows how you will react to treatments and how long you've got, I know women who were expected to last only months and are years and years down the line.

 

Chocolates good luck with scan, maybe a full house can distract you a bit?!

 

When is Helen back? Hope she's had a great time - I bet she has!

 

Have a good weekend girls xx

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JulieD May not be so in all cases. I worked full time for 20 years and then did part time (half full time hours) for 6 years. I then retired and my pension was worked out as if I had worked full time for 23 years. My 6 half time years became 3 fulltime years. Check with your pension provider how they work out your time served

I retired because I was ready to, got my diagnosis one week later. A friend who retired two years early because of her diagnosis was given full benefits because they said that they didn't expect her to be drawing it for very long??????!!!!!!

It is a minefield isn't it?
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I've been feeling really peeved that I've paid into a pension all these years but haven't a chance of getting to use it. Not yet 50 and been told probably have 2 to 3 years. The only comfort I can draw from it is that my niece will get a death grant of 3 times my wage, which should see her through university. Like you, Chocolates, I don't want to spend all my life working. I have nice things I'd like to do before I pop off. I can't afford not to work because my mortgage is too high, although I have been wondering if it's worth changing it to interest only. I'll have to look into whether my niece would still get the money if I stopped work beforehand. I'm also miffed that my retirement plan was to get a dog but now I'll struggle to outlive a hamster!

 

Half an hour of gardening and the tumours are hurting so much I've had to give up. Miffed, peeved, p*ssed and so on. Roll on chemo next week.....never thought I'd say that again.

 

Flo

X

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Afternoon ladies - hope everyone is doing ok. Just booked my scan for Tuesday afternoon - scanxiety has already set in. Can't wait for that to be over.
Absolute chaos here - friends of kids over and just no where to hide. It's great, I love a full house but a moment of peace would also be nice - I know make up my mind.
Interesting to read about retirement. I'm doing ok at the mo - the fatigue is hard though but for me working is better so far. Of course if scan results say otherwise I'll have to think again. I want to have a balance but I def know I don't want to work up until my time is up. I'd like to enjoy some quality time, free from work stress and just with family and friends. Fingers crossed the results next week don't bring that all forward.

Right - cooking and washing to do as well as shout about loudness of music and not playing football upstairs. Oh the joys.

Stay well everyone. Dani - hope you're ok

Huge hugs
Hxxx

Just realised I've posted this originally in the wrong thread. Sorry ladies xxx
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To any of you considering giving up working .. I was 60 when my mets in the bone were diagnosed, 5 years ago. Had planned on retiring around 63 so plodded on. I have to say that at the start things were good, I was in a way glad to get to work and have somewhat of a normal life. I worked four full days a weeks as a secretary.. However after a couple of years things started changing in the office and I was finding it hard to cope with change. How much of this was my age and how much my illness I really dont know. By this time I was approaching 63. I also found that although they were ok about me having time off for hospital visits etc everyone was a bit dismissive of it and i started to feel guilty. I had made my mind up to go in May of this year, when I would have been 65. But I was so lucky that in January this year I was made redundant. My mind was made up for me and I was so happy. But I realise it is more difficult if you are younger. That is a tough one.. Good luck to everyone. Love ruth
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Just a quick one for those considering retirement. If you are on final salary pension terms (not sure that's the right definition) it might be better not to go part time first as your pension will be based on that income.
Have a good weekend girls, nice and bright here on the South Cost at the moment xx
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Thanks janette and vercors. I am civil servant so have a stressful but not physical job. My manager has already said i cud do a phased return and i appreciate i have a relatively gd employer with gd rights. I have lots of stress at home so have always found work an escape too but that was pre this diagnosis. Obviously it all depends on scan results so i will just haveto see how it goes. Too much to think about! Thanks for advice and how it worka for you.
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Hi ladies

 

Bev - i had the effusion back in April of this year at a pre op assessment to finish reconstruction.  I had a dry irritating cough for nearly 3 weeks so told the surgeon and he promptly sent me for an x-ray.  Following drainage of fluid I had a procedure called pleuredeses which is a chemical talc inserted into the pleural lining of lung to stick them together.  It was supposed to be 90% success rate but 2 weeks ago it came back in left lung again.  Whilst in hospital an x-ray showed progression to right lung with small effusion so had that drained too.  I didn't bother with pleuredeses as there wasn't much fluid and I knew I'd be starting a new chemo. 

 

Nicky - thank you for your words of encouragement in fact to all the ladies on here that are going through the same kind of highs and lows, I hope you are all doing well and keeping strong.

 

Gorgeous weather here in Solihull, the sunshine always makes things look better...

 

Love and light

Dani XX

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Hi Carolsav, i am at that dilema at the minute, i have mets to my hips, ribs and spine and yesterday got tumour marker results which are now rising.
Part of me wants to stop work part of me does not, i have cut my hrs to 20 a wk but am finding that i am still struggling with that, i get so tired these days and get a lot of back pain.
Don't want to sit at home dwelling on this horrible disease, plus there is the financial side of it too. I work in a busy pharmacy and it can be quite stressful some days, is your job stressful or physical?? These are things you need to take into account, maybe reduced hours would be an idea??
Good luck with your results.
Hello to everyone hope we are all ok .
Love and hugs Janette x x
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Hi Carolslav,
I hope your onc has some good news for you.
I don't post often but read this thread religiously.
The reason why I haven't got time because of work. I have to say work is my saviour. It allows me to think of something else. We are all different, your stamina will be different to mine. I have bone mets and am onherceptin, leletrozole and ibandronic acid. I work full time but also have about 10 days a year of unpaid leave on top of my 25 days.
Your employer has to make any reasonable adjustments to help. You're officially covered by the disability act. Why don't you ask for a phased return? How demanding is your job? You want to factor in your commute.

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Hi everyone. I will get my first scan results nextwednesday since starting my treatment and those results will affect my decision on whether i return to work after a 5 month absence. I wanted to ask how u all manage...is it possible to carry on working? I have mets to spine ribs pelvis hipa and lung and take letrozole along with bone strength injections. I am only 52 so even if i opted for ill health retirement i wud still struggle financially so in reality may not have any choice anyway! I reallt wanted to hear how u all get on if u do work. Like many ladies here i am too scared to ask more details from my onc rite now and can barely cope with wot i alrwady know so far. I am worried i wont be able to sit comfortably wirhout leg pain at my desk or be able to reach my targets . Then i think to myself...why should i even worry bout things like that anymore. I am so confused!
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Hi janette...good luck with your Onc appt. Hope youre seen sooner rather than later.
Dani...I'm sure youve made the right choice with your treatment. I know what you mean about feeling so ill and tired. Like you i was very fit and now cant walk for more than 5 mins without being breathless and tired. I tend to come to bed around 8-9pm most nights like tonight....and feel fit for nothing.
My friend text me tonight to say she'd had a lovely spa day with her daughter today with 2 or 3 lovely treatments. I just started crying as i cant even have that anymore!
No manicures because of cuticle infection, no massages, not happy about using pool in case of infection. ..and i used to go swimming twice a week.
Its so unfair.
And i too feel just generally unwell most days but cant pinpoint anything in.particular..mainly fatigue.
Hope youre taking it easy though recovering from your hospital stay. Was it painful at all with pleural effusion? How did you know there was fluid? Was it showing on the scan?
Sending you lots of love....bev xxx
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Hi Lynne, no she didnt say by how much, my oh has phoned her to say we are not waiting 2wks we want to see onc next wk. Its still all fairly new to me all this and i feel i need an explanation??? Is this normal etc
love an hugs Janette x x
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Hi Dani
I know how you feel and it can really get you down especially when this bloomin' disease robs you of the things you enjoy. Last year I felt my absolute worst and couldn't walk anywhere as a side effect of the chemo I had 6 years ago had affected my heart along with a change in heart meds. I'd also had progression in my bone mets that gave me leg pain for the first time which had also stopped me walking much, even before my heart caused problems. However since going through lots of medical procedures, heart and biopsies and hospital stays I am now feeling so much better. I can go for long walks, am out of pain and not breathless or suffering from 'palpitations'. I just wanted to reply to you to say things can get so much better. In fact last summer I felt so bad from all my symptoms I really thought I would die within weeks let alone months. I am hoping that, by starting a new chemo regime you will get good results and you too will gain all of the benefits and get your life back to a level that you start enjoying yourself again. Sending hugs you way.
Nicky x

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Hi ladies

 

Just a qick update and hope all are feeling well this evening?

 

I saw my ONC and she gave me the option of 2 chemos and I have opted for Ebirulin which is IV chemo.  I did ask for some time to think about it and she responded by saying that I shouldn't take too long as there is proression.  At least she's frank and up front...

 

 I see her again on Monday to sign the consent form but have been told that the chemo regime might not start until the end of next week possibily following week.  How is it that now I've made my mind up it's ok for them to keep me waiting?  I don't get it.

 

I see another onc next tuesday to see whether she has any other options for me or maybe not....

 

My partner took me for a little gentle walk this evening as the weather improved dramatically.  When I got back I couldn't get over how fatigued and ill I felt!  It's just not fair as I have always been very active all my life into all kinds of sports including running!  I've been robbed of the very things I love doing and it's just not effin fair!  My partner tells me to be a little kinder to myself but that's easy for him to say and I know he's being very caring also doing a very good job of looking after me!   God only knows what I'd do without him..

 

Sorry for the rant but after spending nearly 2 weeks in hospital getting left lung drained only to find out there was a small effusion in right lung, i feel pretty miffed.  So as well as the bone mets to sternum and pelvic joints I have to put up with fatigue and feeling generally ill. 

 

This weekend is the start of my non conventional treatment and will keep everyone updated with it.

 

Love and light

Dani xx

 

 

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I decided years ago to stop reading my Onc's screen after reading some info and wondering how I could possibly be so ill yet, at that time and some times since then, feel so well? A bone scan I'd had resembled something from a medieval dig on the TV so I decided some things I wanted to know, my markers for instance, but as for specific areas of bone mets for example I wouldn't bother as it would probably put me off lifting something, carrying something maybe. Whatever works best for you. X
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Hi Janette. Sorry to hear about your TM results.....and also the BCN nurse....how can they tell any of us not to worry. I always feel like saying. - "oh okay, never thought of that, i'll just stop worrying"

Did she say by how many your TMs had risen. Mine went up a bit in June, but have now gone down again to their lowest ever...so it does happen. I wish you well and hugs !
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Re TMs -

 

Lynnq - Yay!Smiley Happy Great news!

 

Janette - drat. Man Sad sorry to hear yours have gone up.

 

Hugs to all.((()))

Flo

X

 

 

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Hi ladies, well my bcn has just rang me to say my markes have risen, she said my onc said she is not worried and i don't need to be...haha!!! And that she will see me at my appt in 2wks. I feel so gutted and upset, last time they were done in July they had gone down by half from the previous time.
Hugs Janette x x
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Hi all. I asked for copies of my scans about a year ago, they sent me a CD (had to pay for it) but I never got it to work.
No one has ever gone through a scan with me. My first appt after scan they didn't have my records in clinic?! Second time the results weren't in yet. Both times they rsng me a week or so later and told me 'no progression'. And then sent out the reports to me. I read them and with the help of google managed to glean more information. Don't understand things like TP - 201.5 but I am told this is just a site of a met.??

Anyway 2 years today since my primary diagnosis followed by secondary dx about 6 weeks later. Had my TMs done this week and they are the lowest that they have ever been😀. Having a scan in November....I seem to ache a lot these days, And often feel nauseous...think this could be down to differing brands of LETROZOLE......may make an appt to see GP, but will see if I can hold out until scan results next month.
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Hi everyone, I'm the same about too much information, it's pathetic I know as I like think I'm reasonably intelligent!! I don't look at scans and as to GP letters, you have to be kidding. All the lovely doctors at the Marsden know that I'm frightened and are really sweet, I have to start the conversation to get any non- essential facts!
It's taken nearly 20 years to look at this forum ( was NED for 14 years) and I find it really informative and helpful but maybe it does make you dwell more on stuff. I feel at my best if I can mentally squash the beastie into a tiny box and shut the drawer. Physical activity works for me but everyone has their own coping strategies. Have a good day everyone xx
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Morning ladies, hope we are all ok, well the weather has well and truely changed hasn't it!!
Ethel i'm the same as you, i don't want to see CT scans or letter copies of letters from my onc, i'm on a need to know basis!! Hats off to you all who see them i'm still not ready for all that, i don't even see it on screen at appts.
Hope you all have a lovely day hugs Janette x x
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Hi girls, you have my absolute admiration as I would certainly be unable to look at any scans or reports without focussing on the worst aspects of these. Even now I struggle to hear the 'next' bit of news. I also know that when I do know where the mets are the pain increases. This has to be a psychological response which means to minimise my symptoms less is better for me. But I admire your strength. Ethel x