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Bone mets - please join in

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Re: Bone mets - please join in

Stable Mabel reporting in!
I can relax again now for another 3 months.
Hugs Janette xxx
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Jeanette
We are all holding your hand ..for good news ..keep calm if you can ..rise above the stress! !
Renee
Glad u told the bcn what you thought ..don't think they are interested in secondary ladies ..we upset their stats for survival !!
Hugs xxx
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Well I've been sat here for over an hour only to be informed that my CT results have not yet been reported! So now have got to wait at least another half an hour for them to come across!......not a happy bunny!
Janette xxx
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hi ladies

,you are not alone carolyn,i was introduced to a bcn when diagnosed ,she gave out three cards with her number on and passed one to me and one each to my two sons ,also stated she or someone was available 24/7 ,what a laugh ,she has never ever got back to me,but last week at my onco appointment ,i met up with her ,she had the nerve to say ,,,so nice to see you again ,so she got it all barrels blazing plus in front of my onco and must say i felt much better for telling her .

good luck to all you ladies who are either suffering after treatment or waiting for results.

love reneex 

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Pippin, Stable Mabel is always good to hear! You get to walk around with a huge smile!

 

Maria, Waiting for the mail to deliver your results must really create anxiety! At least when you have a doctor's appointment for results, you know when you're getting them. 

 

Jelly, I'm sorry you are having such a rough time. Vomiting and not sleeping are the worse! Big hugs!!

 

FF

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Hello Maria
How nice to hear from you and it's a really stressful time waiting for results .
I haven't got a bcn at all ..hence why I use these forums for info. Back at my primary dx ..I almost fell over them everytime I went hospital but now at secondary ..they don't want to know .

I'm sure if tamoxifen stops working they might consider another hormone like letrozole which I take but if you are pre menopausal you might need to have zoladex ( I think) to switch woman's things off !!
You don't need to say it aloud ..shout and rant as we all understand how you feel.
Anyway. .thinking of that white envelope with scan results popping through your door any day. .we are holding your hand and sending you hugs
Xxxxx
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Jellytot
Phew you certainly have the full set of side effects ..how miserable for you and of course it's a new drug so we can't really help with any advice.
Maybe it will settle down after the first dose and you will feel back to a new kind of normal again.
Hugs xxx
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Morning ... I hope the rain has now left us all alone, it's been awful.  

 

Carolyn I hope you got on OK with your bone juice yesterday and no you are not alone running in and out quickly.  I always go into my onc appt meaning to have a grown up conversation but always end up running full speed to the door at the point he says any questions ...... X

 

janette I hope your headache has gone and this time tomorrow you will be relaxing again until the next scan x.

 

Jelly tot how awful that you have been hit by all those side effects.  I find I can deal with most things but nausea and vomiting gets me down big time.  Hopefully you will start feeling better soon.

 

I had a scan 2 weeks ago, my onc always writes to me with the results and I am currently feeling sick with worry.  It's an awful time isn't it and I don't think you can explain the feeling to anyone.  I have been diagnosed with primary/secondary for 19 months now and I haven't seen or heard from my Bcn for at least 17 months !  Is this normal?  I struggle to believe quite how bad the support network has been.  Thankfully I have a wonderful husband.    I am currently on tamoxifen and so fearful that if that is now not working I will be back on the chemo.  I feel well and not ready to go down that road again.

 

sorry for unloading but just needed to "say it out loud" xx

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Hello girls,

Sorry for my absence, I've been pretty poorly. The new meds have hit my system hard and I have had nausea, constipation, diarrhoea, headaches, insomnia, fatigue, gosh it's been a rollercoaster. I'm slowly getting used to them I think and have the nausea at least under control with metacloporamide.

I see my onc again on Friday next week, I just don't know if I can cope with the insomnia until then as it's pretty awful, am managing 3 hours sleep per night maximum. I must try not to nap in the day as that must make it worse. I know it's all for the greater good, but it's so very hard!

Love to all,

Jelly xx

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Hello pippin
It's a scary time but stable is ok ..not sure I understand more mets but bone juice doing its job bit though? Hospital lingo is very confusing xxxx
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Hi

Stable Mabel (I think) reporting in.

Onc started "I'm sorry but" and my heart sank more rapidly than a stone, in a split second I had plummeted a million feet. Then "your scan hasn't been reported yet" - relief but psychologically I didn't rise up to where I was before. More mets visible now 'cos of bone juice's good effects but thought to be stable. I'm not in denial; I'm sure of that but it really brought it home to me that one day without any warning I will hear those words again and for real. Felt a it "down" even though I'm stable. Weird.

Pippin

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Jeanette
You will be fine ..you tm was low but what with oncologists appointments and mammogram results ..that dreaded white envelope dropping through letterbox. ..no wander we eat so much chocolate and have so much stress ..
Oh to have our normal lives back
Xxx☺☺
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Thank you Helen and Carolyn, sat here with a banging headache wishing it was this time tomorrow! I always say to hubby that I wish he could just go in my place and let me know what she she says!!!
Glad to hear you both had good results today....long may it last!
Hugs Janette xxx
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Hello Helen
That's good news about stable ..as long as the treatment keeps the little blighters under control it's worth the side effects !
Jeanette ..all the best tomorrow my letrozole buddy. .hope all goes well and I will be thinking of you ...
Hugs everyone xxxx
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Hi lovely ladies
Carolyn - pleased your appointment went well today.
Janette- good luck for your results tomorrow.
FF- Hope you're enjoying the new job & your treatment is going well.

I had my onc appointment today and I am a stable Mabel!! No visible reduction in the liver mets but no progression either so I am staying on eribulin for another 2 cycles at least (9&10) . Bone Mets behaving as well. Very relieved.
I know what you mean about the BCN sitting in on appointment- I always think it's going to be bad news if she turns up.
Big ((((cyber) ))))hugs to you all
Helen x
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Glad you didn't have anything scary today Carolyn. I had bone juice today - it took an hour to arrive from the pharmacy so
didn't go out for lunch. Malfunctioning IT wastes such a lot of nurses time rebooting their terminals when they could be doing nursing
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Hi FF,
Sorry, didn't answer you before now. I'm going to Majorca for my holidays. Really looking forward to it. Best Wishes
Waffles xxx
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Thanks ladies ..so Im not alone ..
Well home now as we stopped for lunch ..my oncologist was busy with a very poorly lady so I saw his registrar ..she looked so young and if she should still be skipping in the school playground! !

She asked me if I was feeling well, any new pain and then would see me in 4 months. Apparently I only have scans 8 monthly so not due to October.

Then had my bone juice and then out of the hospital ..think I almost skipped to the car ..if hubby didn't go with me ..I think I would run before I went into clinic !!!!
Hugs and best of luck to all of you that have to do the same soon.....it's a very good diet though ..stress as it means loads of toilet visits !!
Hugs ☺☺☺
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Carolyn, With our time difference I'm hoping you are home and had good results!  I hate going through the big doors to enter. I aware those doors get bigger and bigger and more intimidating each time! I prefer to be an ostrich before appts. This living from scan to scan is he$$! I always tell myself after every scan visit to put my smile back on and go have fun. You have been given another 3 months! I love the oral drugs, so I'm not there every week. I try not to whine about the weekly infusions when I'm going. My brother was on kidney dialysis and went 3x a week. I took him and picked him up every Saturday. It was a commitment! FF

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Afternoon ladies.
Good luck today Carolyn, it never gets any easier going to see your onc unfortunately, I'm a nightmare, I sit in the waiting room and if I see my bcn hanging about i convince myself it's going to be bad news because she's there to support me!
I've got my 3 monthly appt tomorrow along with CT results and I'm dreading it.
Hugs Janette xxx
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hi carolyn ,

NO you are not a bad example to us at all,as i am sure if everyone was honest around 60%would feel the way you do ,i was a quivering wreck on friday when waiting to see my onc ,made worse as he was double booked so running late ,only my son being with me kept me from using my wheelchair  and racing out of there ,.

hope all has gone as planned 

Reneex

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Hi Carolyn,

 

I am the same. When I had my treatment for breast cancer in 2013 that took 8months,

I went onto autopilot and they could do anything to me to get rid of the cancer.

Since I was diagnosed with secondry bone in March this year I have become a shivering wreck on my 4 weekly visits.  

My stomach churns, but it does help with the constipation so I suppose thats a bit of a bonus.

 

These visits are vital so we just have to get on with it, perhaps we need some sort of therapy to deal with it. I just want my pilot back. (preferably tall, dark and handsome) I wish.

 

Regards

crissy

 

 

 

 

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Hello ladies
Well off to see oncologist and for my bone juice in an hour ...am I the only one that becomes a quivering wreck once I get to the hospital doors?
I get into clinic ..forget all the questions as just want to escape as quickly as possible!
I'm such a bad example to you all xxxx
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That is nice that you hear from your family every day! It does not help with the long evenings though. Lol it is still nice to have someone there! Thank goodness you do have your dog.Do you like to do crafts or play any games. Maybe you could invite a friend over for snacks and a game. I try to think of crazy ideas (excuses for a party) mostly small groups! Full moon party, chili cook off, fried chicken cook off, break the winter blues, fabulous fall, etc. Hugs! 

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hi funnyface

yes like you i use every available light both inside and out,i really hate it ,no one to talk to is the worst part for me ,dont get me wrong my family call every day when coming from work ,which is great but still very very long nights to fill,so its me and the dog plus t v for a few months ,,also like you i do like the snow when it falls ,but just the once will do me .

today is dreadful ,torrential rain and weather warnings out all over the place ,but my friend is coming for a few hours so shall be kept busy with little jobs i can not do from my wheelchair

take care 

reneex

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Renee and Carolyn, Winter darkness is pure torture to me! I feel like I barely make it through! Renee, I don't know how you get through it by yourself! I think I turn like every light in the house on! Plus the outside front spot lights on. Anything to make it look light! I do like a good snow though! But only one! Hate the cold!

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Hi Carolyn ,

like you i hate the long winter evenings ,especially since losing hubby ,i hated the dark nights even then but more so now just wish my life away with them and pray for spring again ,why can we not just have spring and summer ,PERFECT

take care 

Renee

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Hiya ff
Our weather seems to be mirroring yours ..it's feeling very autumny today ..I have cropped jeans on (capri I think u call them) and my ankles are chilly!!
Oh no ..hate winter and all that darkness and slippery pavements ...
Hugs xx
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Hello bon
Yes ask about the butterfly next time ..my nurse who has been doing bloods for over 20 years says she always uses them to protect them for future as regular usage hardens them and they can't repair ..but it's taken two years before I knew this ..
Hugs xx
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Not raining in Dartmouth. Had a blood test this morning. My veins are still producing but there is less choice of vein than there used to be . I will ask about a butterfly needle because I want them to last as long as possible
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Raining here too! Curled up with a cup of coffee and blanket. Have to go out to work in a couple hours. I made lasagna yesterday, so dinner just needs reheated. I'm almost ready for Autumn, but a nice sunny one! Just hate that Winter follows it. 

 

The butterfly thing sounds helpful Carolyn. I don't know what my nurse did on Thursday, but it really hurt when she accessed my port and lovely shades of black and blue! FF

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Good morning Renee
It was probably like teaching the experienced ladies here how to suck eggs but if just one lady reading gets spared the aching bruised arm after the blood test is done. .my job will be done. Veins are very precious if u out don't have a port fitted ..and from now on ...no one comes near mine unless they use the butterfly needle ..
It's cold and wet here in devon today ..feel so sorry for the holidaymakers ...at least I have my home comforts! !
Hugs xxx
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hI CAROLYN 

never heard of this but will ask when phlebotomist calls next ,as i bleed under the skin so easily with blood thinning meds and my hands and arms are so bad with bruising i look like someone has abused me [i should be so lucky],

rotten day here again i think summer has been and gone .

love reneex

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Hello ladies ..just a tip
I had my blood test done this morning for my bone juice ..very experienced nurse used a "butterfly" type needle to protect my old hard veins ...it was completely painless and no trouble ....all nurses carry them but you have to ask ..what a difference to some nurses that almost throw it like a dart!!
Hugs xxx
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Carolyn, It was a  friend's  front porch. It is what they call a colonial style  house here. The porch h as a roof over it. She has a two seater porch couch, 4 rockers and two other chairs and a coffee table. That is only 1/2 of it. It's long but not very deep. 

 

The loudest thing at my house is the bugs outside! They are very loud in August! We can't sed another house but that is going to be changing!! There is 9 acres next to us that just sold and they want to put 3 houses on it. We have always enjoyed it being empty!! I'm not sure the township will let them subdivide into 3 lots. I will be bummed to lose the privacy! Oh well life keeps changing! FF

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Hi Pippin!! Good luck tomorrow. ❤️ (Watching how brave you were in Lord of the Rings 😉)

 

I had an appointmnet through for the radiotherapy tomorrow so will have to figure out whether it'll be a long drive or whther they are going to keep me in 😞

 

There is a good article on facebook by a lady whi had cancer at 35 (cancer with a smile I think it's her blog) about friends and what to do which I thought was very good.

 

Anyways... hope everyone had a lovely pj day today 🌧🌧🌧

 

JEllytot how are you feeling? 

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Hi

Just getting big girl's pants ready for tomorrow...

Pippin

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Hello ff
Thinking about your porch party ..it must be a big one ..I've only got room in mine for a plant and a few pairs of shoes !! Think it must be what we call conservatory here .
Well ladies ..I need sleep ..Friday night someone's car alarm went off and lasted over an hour. ..then last night a couple of girls were outside shouting loud ( too much vino?) And I had a annoying fly buzzing around but as soon as I got the fly spray out ..he hid !!
Hugs everyone xxxx
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thanks for advice funny face ,but i sleep now nearly all day for about five days of my treatment of herceptin and perjeta,so hoping the radiation doesnt make it worse or i will never be awake ,yet ok during the night i can get about 5 hrs straight through.

sounds like fun ,your porch party, and why not have fun as good weather does not last forever ,hope you find the pants you need .

love reneex

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Waffles, That's fantastic news! Any ideas where you would like to travel too? There is so many beautiful things to see in this world! Are you a city mouse or a country mouse?

 

Renee, My goodness that is one heck of a work up that you need! I hope they can schedule some of those things on the same day, so you don't have to make so many arrangements to get there. I agree with Carolyn, sleep when you need it! I need more sleep, but lately I'm going through a spell of not being able too. I can't sleep more than 3 or 4 hours and I'm awake. 

 

Carolyn, No medication is easy for everyone. Letrozole kicked my rear more than anything I've taken (except abraxane). Vinorelbine and capecitabine were my easiest.

 

It's been an absolutely gorgeous weekend here. It has been in the mid 70's, no rain, no humidity! Friday night we met up with some friends for a porch party. There were 8 of us! Yesterday I went shopping for some pants, but the stores I was in were between seasons. No, luck! I'm down 70 lbs. now. I don't have any pants that fit! I have 4 pair of capris. I can't wear jeans to my new job. I figure if I buy some pants now they will fit til just about Christmas. I only get a few bc I don't like to waste t he money.  Then if I get some for Christmas they will last til Spring. I hope I will be finished losing. Then hubby and I went to play miniature golf! Winner has to buy  an ice cream treat for all. I won by 1 point! Today, I think we are just going to hang at home. Hope you are all having a good weekend!

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Hello Renee
I'm only letrozole and denosumab bone juice so it's like dolly mixtures compared to what a lot of the ladies here are taking.
Hence the reason I'm normally quite chippy ..if I was on chemo I would probably be a miserable old sod !!
Hugs xxxx
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hi carolyn ,

good grief i dont need to be any more tired as about 5 days out of my three week treatment plan i am so tired from getting up to going to bed ,in fact sometimes in bed by 8 pm on a bad day ,

i also lost 2 kilo in 6 weeks ,but i can not eat a savoury meal at all so guess thats down to that as only eating sweet things and ice creams ,etc i did tell him and he said he could give me fortisips but he wouldnt wish them on anyone as they are vile ,,his words not mine and to try complan from chemist,so will do that tomorrow.

i agree he does seem on tha ball ,i believe he is indian but not sure ,his name is MR KITTYPER .and as said very nice .

what treatments are you on Carolyn and what exactly for ,dont answer that if you would rather not ,its just me being nosey as per usual.

love reneexxxx

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Hiya Renee
Wow I think you must be teachers pet with the oncologist ..he's certainly on the ball with all the offered treatments ..but take it all as you are in very good hands by the sound of it.
But ..it's going to be tiring so don't be afraid to have a little afternoon nap etc ..let your body tell you if it needs to rest or sleep. .. I sometimes have a little nap but try not to as I really have no excuse as I'm not on very strong treatment like a lot of ladies here and should be able to stay awake !!
Loads of hugs xxxx
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Hi Carolyn ,

apologies for not been on here for a couple of days ,went to see onco on friday ,he wants me to see a gastro specialist about my stomach problem ,but first he wants me to have five sessions of radio on my breast,and still carry on with herceptin and perjeta,i dont know what to think as my first onco said hormon treatment would not help me and radio would not either ,yet this new one is doing both ,but the nurse i saw told me to look at this in a positive way as proved to her this new one will try anything ,no expence spared ,so now have to have ct scan ,heart scan ,bloods plus scan before radio therapy then start that and he wants all this in the next month and he will review me then,he is very nice and goes into everything ,but has me worried  slittle aat all these treatments ,also i told him i had been taking 8 immodium per day for 8 months and he answered by saying he knows people who have been on eight per day for 10 years and not a problem.

nice day here nut bad weather to follow i understand .

take care .

Renee

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Hello waffles
Pleased your little visitors are shrinking and that you are coping ..the body will tell you when to sleep so don't feel guilty about not being superwoman around the house !!
Wow ..enjoy your holiday ..lots of nice deals around and relax ...
Hugs xxx
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Hi Carolyn,
I'm doing well I think. I'm on 2 weekly paclitaxel. I got my last scan result 2 weeks ago and my liver mets have continued to shrink. However, the chemo does make me a bit knackered, but I suppose that's just to be expected. Good news is that my onc has said I'm fine to go on holiday abroad, so I'm going to book one tomorrow. Just a totally lazy holiday. Not my usual sightseeing long weekend where I nearly wear my feet out!
How are you doing?
Best wishes
Waffles xxx
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Hello waffles

And how are you as we haven't heard from you in a while ?
Xxx
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Thank you again ladies!!  FF