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Bone mets - please join in

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Re: Bone mets - please join in

Hi Marie,

 

bon is obviously the ideal one to help you with getting used to  this. The aromatase inhibitors work in a very different way to tamoxifen. They are brilliant drugs and they usually work...tho the length of time might vary from one person to another. You havent said wether you are post menopausal or not or if you had a recent scan  but it coul d just be that the doctor just decided you would be a better candidate for exermestane.

 

at any rate - you could call the brrast care nurse on monday and have a chat....ideally you wold see the doctor...i have never had a change of drug like that without a chat first.......its a new one on me...but maybe if you either live a long way away or arent very mobile, he thought this was the ideal thing to get you started.

 

dont assume it wont work...assume it will !love and best wishes, Moijanx

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Me again .......  Well a letter has just arrived from hospital and it says the scan shows a slight increase in liver met and a small deposit in my adrenal gland.   So my question is does anyone have any experience of the adrenal gland ?  Xx

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Just picked up prescription and it is Exemestane.  I will have to look it up.

 

xx

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Morning Mojan and Bon

 

Thankyou so much for your replies and positivity.  I am going to pick up my prescription from the chemist in a lilittle while so will see what it is !  Maybe a letter will arrive today with an explanation?... It's just the unknown isn't it that takes you into the "dark place".  

 

I suppose if if tamoxifen has stopped working it doesn't mean that this new one won't work.

 

big hugs M xx

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Hi Maria Louise

They don't think do they? All you can do is try and find good things to keep you occupied this weekend. If the drug begins with 'e' it might be exemestane. I've been stable on it for nearly 2 years.

Hugs Bon xx

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Jellytot....I also understand about why you are feeling anxious xx

 

Eribulin( my drug), too can cause a prolonged qt interval....means some of the heart action is slightly delayed.

im not exactly sure about this, but some drugs cause this whilst you are taking them ....so whilst you are off it, you can try not to worry.....lif you do get anxious, if say your heart starts thumping or beating feels irregular, go to A+E asap....and they will definitley do an ecg for you.

 

best wishes, love and hugsxx Moijanxx💚💚💚

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Hi Maria Louise,  I totally understand why you are worriedxx

 

. However, it might possibly be due to your individual circumstances....we dont know, of course, but one thing I thought might be that theyve changed you to an aromatase inhibitor? i was not a candidate for tamoxifen as i was menopausal...could the new drug be arimadex? Or something? Or letrozole? 

 

Either way, they are obligied to inform you if there has been progression, and discuss the treatment options, so try very hard to look on the bright side...I know its not easy, but unless your gp has a Saturday am surgery

( in which case you could go in and ask to see a gp and get some answers)  you have no other option....you might as well try and enjoy these two days.....as you cant do anything about it.....xx

 

sending you lots of hugs xx  this wretched disease is soo very good at leaving us anxious.....

 

Moijanxx

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Hayeswen, I must have you fooled! I'm a panicky person too, the fact they've taken me off the drug is terrifying for me, I'm already worrying about what if I can't go back on it at all, what if the QT thing gives me a heart attack, what if it's damaged my heart permanently, what if, what if, what if. I guess I think all of those things in my dark moments and then just try to get on with it so maybe that's where the positivity may seem to be!

 

I'm so glad you had good news xx

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Evening ladies x I am in a major panic ! Just had a phone call from my surgery to say that on request from my hospital (I had a scan 3 weeks ago) my doctor has changed my prescription from tamoxifen to another tablet which I think began with an e !! (I went into panic mode and couldn't take it all in. Does this mean I have had progression ?? Being a weekend I can't speak to anyone until Monday and I feel sick with worry. Xx
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Jellytot

I just want to hold your hand and must say admire you as you are so positive not like me as I am a complete stress head. i want your treatment to work quickly so that you can enjoy some respite like the rest of us . Fingers crossed for a good nights sleep Wendy
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Hi all

Have been thinking of you all whilst I was away and keeping an eye on what has been happening.PMOL glad you are ok. I have just had the most wonderful week in Greece. This week came back to washing and ironing and a visit to ENT dr as persistent sore throat and swallowing causing pain in ears. GP referred me for chest c ray which was clear but wanted me checked out so me Me andhubby were petrified I had some other sort of cancer but got the all clear today 😄. Am off out now withfriends from work so will have glass or 2 to relax before my next Onc appt where I need to mention my hip. But torrential rain aside today is a good day. Have a great weekend all. Wendy
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Hi Girls,

 

PMOL, glad you're home!

 

I've just had my two week check for my first cycle on my trial drug. Common issues other than the normal side effects at this point are low bloods, rarer are issues like heart problems. I was supposed to be there for 3 hours and was there for7.

 

I had bloods done, weight (have lost even more, it's now nearly 2 stone since diagnosis) and an ECG. My bloods are ok but my heart rhythm isn't. The QT something or other is too high (they did two ECGs) so they've taken me off the trial drug for a week 😪 I have to continue the letrozole though.

 

My oncologist said not to worry and that at the start they will always play around until they get the dose right. Easier said than done though. I guess it makes sense, as why would a dose for an 8.5 stone me be the same dose as say a 15 stone woman... I have to go back in a week for a repeat ECG and then they will look at what to do. So probably reduce my ribociclib dose down.

 

They gave me something to help me sleep (zopiclone), as I've not slept properly in about a fortnight so will be starting that tonight xx

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Hello.pmol
So glad u home so you can enjoy the weekend and you will need to just be careful what u eat ..no McDonalds or vino !! Most hospitals kick out as many as possible at weekends so they can half the staff.

Renee
Wow you have been busy with sorting out hospital appointments but it's the waiting that's worst ..we all have to deal with it at one time or other but that's our life now ..
Try not to worry too much as cancer loves stress .
Hugs xxx
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Hi girls! i'm home!!!! 😁😁😁😁

 

still didnt figure out why had been sick but the promise of chocolate cupcakes to the jr doc that was on my ward might have helped send me home 😂  Anyway, it was all clear and although they eanted to do some sort of scopy down my throat, I'm glad they didnt as I'm fed up of being proded. 

 

So now to enjoy my sister's visit for 2 weeks (although I do have lots of appts) 🤔

 

Big hugs and thank you for understanding xxxxxxx

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hi ff 

got some sorted ,have treatment at cityhospital on monday  followed by scan for radiotherapy, and then ct scan at newark hospital on wednesday,my daughter in law has just said she will take me monday as its a 52 mile round trip and of course with ambulances much much longer as they pick up in every village ,then the wait when finished treatments ,so appreciate she is doing that .

will get all others sorted hopefully next week ,but cancelling my onco appointment gives me a full eighteen days of worry for scan results ,not good at all.

love reneex

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Renee, You will be mad after all this! FF

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hi carolyn ,just had my oncology appointment cancelled ,and have tried ringing the nurse and receptionis but no reply ,just the answering machine ,typical ,the thing that worries me he said he wished to see me in one month rather than wait two and now its been put back two weeks ,plus have had no word at all about radiotherapy which he also said i would be scanned before actual procedure,so not having much luck at all ,but it doesnt say because we have so many hospitals that they are all good ,some are brilliant ,others just so so.

yes i agree they think we have gone back to our childhood or senile ,

i remember my mum being ill in 2006 and the doctore doing this test to see if she had dementia,he asked her all these questions and she answerd them ,he then asked her who the prime minister was and she said winston churchill,he lookedat her ten at me and shook his head ,mum piped up and said ,now you tell me who is going senile,,she also always told nurses etc she was 92 but all there and not to treat her like a child ,

best go as son has arrived to paint one of my cupboards out ,

love reneexxxxxxxxx

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Hiya Renee
I think for some of us having cancer eating away at us makes our brains sharper and I hate it when people patronise me too ...yep I might walk with a stick but I'm not deaf or senile yet !!
Living here in devon ..everything is more compact ..one hospital really but a good one ..oncology and chemo adjacent so hardly any walking between.
Hugs xxx
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hi ladies ,

thanks for kind replies ,yes we have plenty of hospitals to choose from ,we have 6 different ones ,but does make it awkward as i attend three of them, one to see oncologist ,one for treatment and one for scans,the reason being i am under one for oncologist ,but the herceptin and perjeta that is my therapy are not allowed to be given at this hospital,hence i attend three of them ,but they get in such a mess over appointments and then try and blame me ,i am 76 but not mad or even slightly mental ,as yet ,but soon will be if this carries on,so i guess nottinghamshire are lucky in the respect of hospitals and amount of them ,and i most certainly would not be here if not for one of them ,but that makes me having attended five out of the six in the past 18 months from having my leg amputated ,and they did save my life ,no doubt there at all and so here to tell the tale .

thanks again 

reneexxx

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Hi Renee

Three different hospitals all in one day! That would challenge a twentysomething given that appointments are not always as prompt as they could be. Perhaps we are lucky here down in Devon in that there are not many hospitals to choose from.  My grandchildren are only 6 and 8 but I started late producing children. Boys seem to need hugs more.

 

Good luck sorting your appointments

Hugs Bon xx

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Wow Carolyn! Two sets!!

 

Renee, That is a lot of arranging! I don't know how you do it! I  hate picking up the phone to make appointments or handle problems! Lol after 12 years of mets appointments and problems exhaust me! You are amazing! I'm rooting my horn bc you have impressed me. FF

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Oh Renee
You poor love ..all those hospital trips to sort out when you have to rely on transport too...thinking of you. Xx
Crissy
The 12 year olds are twins and so this is the 2nd set. ...I shall have to make sure son gets " doctored" after they are born.I call twins buy one ..get one free ! Oops.
Hugs everyone xxxx
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Evening Carolyn,

 

My youngest grandchildren aged 8 & 12 still tolerate my hugs and kisses, although they have no option as I grab hold of them. Yes money does work better.

We have a great grandchild, a boy, due on 2nd December. Can't wait for munches and feeling those lovely chunky legs as they get older.

 

Been a lovely sunny day here in Brum.

 

Sending love to you all and loads of nanny hugs,

Crissy xx

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hi carolyn,

how lovely to have twin grandchildren due ,twice the trouble and worry ,but worth every minute of your precious time with them 

mine are two girls 21 and 26 ,plus two boys 21 and 26,the boys always have hugs but not the girls ,[strange ].

 

i have not been on here much as trying to sort all my appointments out as have two scans plus my treatment all on the same day but at three different hospitals,and can i get any sense out of them ,not likely,they think its me thats an idiot at the moment ,but will try again tomorrow ,

take care reneex

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Hello ladies
Quiet here so guess everyone is busy and enjoying the last of the summer ..can feel winter creeping in already.
Crissy ..glad u get loads of nanny hugs ..mine at 12 and 13 arnt keen unless I dangle their pocket money and then I can maybe steal a hug !! But I have twin grandchildren due November and they won't mind! !
Hugs xxx
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PMOL, so, so pleased that the scan was clear.

Thats the best news.

When one of us has bad news it affects all who keep up with whats going on on this forum, but it is so, so good when bad news turns into good. 

Hope you are home tomorrow and get to recover in your own surrounding, 

 

Sending big hugs and my grandchildren say I give the best biggest hugs, ( its mybig arm that has Lymphodema that envelops them and my big boobs)

 

XXX

 

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Babsy, Sounds lovely and peaceful! Enjoy!

 

Carolyn, That would be something I would say! 

 

FF

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Hiya babsy
That sounds lovely ..nothing like the beach sounds to relax ....obviously it's a permanent lodge you can live in all year round and not seasonal .
Pmol
Good news about the clear scans and hope the sickness is stopped now ..ugh we all hate being sick. .I remember with my primary chemo ..I was sick for 24 hours non stop . I remember saying to my hubby can't go hospital. .too ill !!
Hugs xx
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Haven't checked in for a while.  Good to catch up with what's going on. Well seaside lodge purchased outright and we' re moving in next week. Can't wait , so excited. We are literally just across the road from the beach. Cant see from lodge as the beach has a bank above it and our place has a bank at the top. But you can hear the sea from our decking. Like most people I absolutely love the sea and it is a dream come true   

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Hi PMOL Fantastic! So glad your scans were clear, Not so good that you're in hospital but hope they sort out your sickness and you can get home soon. Bon xx

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PMOL, Hoping they get you squared away! You must be over the moon that the scan of your head was clear. What wonderful news! FF

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pmol

so sorry you have found yourself in hospital and hope they let you out tomorrow  but you are in the best place to get to the bottom of your problem and sure everyone on hear is rooting for you.

great news that your scan was clear,maybe stress brought the sickness on.

all the best

renee 

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Hi girls! So ct of head was clear! 😃😃😃
However I am now lying in the bed of our local hospital as was still being sick! They admitted me yesterday, had another CT for thorax and it was same which means the stomach is vlear and this could be some irritation of stomach.
So now on my 3 drip of fluids 😫 And praying they'll let me go in the morning (ine can just hope, right??) xxxxx
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The doc also gave me amytripilin for bone and nerve pain ..took them for a few nights ..wow I felt spaced out to lunchtime everyday and they didn't really seem to do much so they went in the bin but they are supposed to be good and well used by lots of ladies here.
Everything has side effects ..even a rennie tablet so I suppose it's better not to read all the paperwork!
Damn ..I've got a mozzy flying around my lounge and they love me ..fly swat and spray in hand now and I'm not afraid to use them Mr mozzy! !
Hugs xxxx
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hi jellytot,

you have taught me something new tonight i take gabapentin and also amytripytline but was given them for nerve pain when i had my leg amputated,and can honestly say i have no side effects from them at all,but i did not realise they were given for other complaints

take care .

renee 

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Still here - Yes I've been told tthe same. No grapefruit, pomelo, pomegranate, star fruit, Seville oranges, marmalade, I think that's it. Also I have to check every single med I want to take with my trial team.

 

PMOL - Good luck with scan xxx

 

I have a chillow that arrived yesterday, used overnight, it was a bit weird to be honest and warmed up pretty quickly! Not too keen but will give it more of a chance.

 

I've switched letrozole brands as I was on one that gave me no hot flushes (Dr Reddy's), then I had to switch to another for my trial (Manx healthcare), I asked if I could change back and they said yes. So Saturday I took the first Dr Reddy's again, hoping it helps!

 

I've been offered venlafaxine/gabapentin or amitriptiline for the hot flushes but I don't want to take yet another pill, plus the side effects of all of those don't look very fun. Am hoping I'm allowed to take evening primrose oil and sage tablets as have heard good things about those. I meet with my trial team again on Friday so should find out then. They will also take my bloods then and see how they are faring, I've heard most people on palbociclib drop down a dose, so I wonder if it will be the same with me in my ribociclib.

 

hugs to all who need them,

Jelly xxx

 

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Carolyn, Yes, everyone should always know to read the literature and check with their doctors before taking anything. When we post suggestions we are never saying It's for all!! All things should be checked out before you try it. There are lots of natural supplements that can't be taken. Look how even with a lot if m eds you can't have grapefruit! I never did like grape fruit, so not whining on that one! FF

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medium.jpgall the best for your scan pmol. Xxxx

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Pmol,  

 

Wishing you all the luck in the world for the results of the scan to be negative. 

 

Love and hugs,

Crissy

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hi pmol,

good luck with the scan ,and do hope it is negative for you ,such a worry is it not for all of us having scans.

love renee

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Carolyn 😂😂😂😂😂

 

i haven't tried it so don't know but  thought it might help some one 😉

 

Off to head CT as haven't stopped being sick for over a week now... hope the blighters haven't taken up residence in my lone two cells!! 😰😰

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Ff.
Glad u had good results with it but we need to read the side effects from claritin first. That posting was on "going through treatment" ..hormone therapy if anyone wants to read the full post.
Oh ff ..I haven't slept well either for 4 nights ..I feel really grumpy afternoons if I don't get my 8 hours shut eye at night! Trying to resist a power nap now as well !!
Hugs xx
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Carolyn, When I had to get neulast a injections I was told by the onc to take claritin the day before and several days after. It worked amazingly well. I didn't know this on my first time with neulast a and I was miserable for days. I don't exactly remember everything but what a difference the claritin made. I tried taking it when I was on letrozole and it did nothing! If I was in pain from a drug, I would give it a try again. It is worth it to see if it helps! I had forgot about it. I did see her posting. Thanks for the reminder. I'm probably going to try it for the little bit of knee pain I'm having. It might also help with my post nasal drip and itchy skin. Worth a try. DR

 

PS If only it would make me sleep!

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Hello pmol
Yes Chillow pillows are available online e bay and Amazon have them.
Personally I hated mine ..felt like sleeping on a lilo at night !! The dog did me a favour and ate it!!
Xxx
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Thank you guys!!! ❤️❤️❤️ My husband came with me - the worse part was coming out of radiotherapy and seeing him soooo upset.  He told me then and said that my onc was coming to talk to us more.  I think the worse part was seeing him soooo upset... 😢

 

CHILLOW! Thats the name of the ice pack and apparently it was in Wilko (UK).  I'll have a look on amazon and see if I find anything whilst my family is running around the house playing nerf wars!!! 😁

 

Big hugs xxxx

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Hello ladies
On another thread a lady has posted that she finds claritin hayfever tablets have helped with her bone pain ...maybe worth a try rather than constant pain killers and the side effects ...
I might try as I always have hayfever tablets here as all my menfolk sneeze and wheeze during summer and expect me to produce the tablets from my handbag !! It's like my Mary poppins bag ....I can usually provide most things from it in an emergency.
Hugs xx
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hi funnyface,

amazon do lots of different ice packs but dont know about refillable ,but worth atry as what they dont do is not worth doing,

thinking about it you have more than likely surfed the net,so this may be a bit of useless information to you.

take good care 

renee

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PMOL, What a train wreck of a ride your appts have been! That added stress alone is enough to make you explode with feathers flying everywhere. Geez, I hope you had some one supportive with you when the Dr called you in. You have a lot to deal with. I would get that emergency CT straight away. I would want those answers. Just remember those liver mets can make you vomit too! Hang in there the best you can. Holding your hand from across the pond. Hugs! FF

 

PS I like your ice pack idea! I suffer with night sweats too. I'm often trying to find a cool spot on the sheets to help. I heat the bed up so much. I flip my pillow over too frying to cool off. I think I'm going to look for one of the refillable ice packs like my mom had. I wonder if they even make them?!?!

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Hello pmol
Phew ..no wander you have been too busy to post here ..it's bad enough going hospital but the waiting is worst ..even for my simple bone juice jab ..I can be there an hour but I people watch to help it go quicker !!
Holding our hands that everything goes to plan and things get started ...
Hugs xxxx
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Dear PMOL
What a week. What can i say? I'm so sorry that your liver is now affected. You've got more than enough to cope with without all the chaos, confusion and waiting that you have to put up with, For people who have to spend a lot of time in hospital anyway, dwindling NHS resources and consequent delays only lead to much more misery. Sounds like thankfully you have a supportive family. Hope CT scan is OK
Big hugs Bon xx