75.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Hello Maria
Reading other websites exmestance was very expensive and therefore cheaper options like letrozole and anastroze were prescribed but now it's out of licence ..it's a standard price like the others ..hence the reason not so.many ladies on it.
It's also used as a combo with everomus which is an affinator and Funnyface is taking at the moment.
So you will be fine. ...xxxx
Rose47
Member

Re: Bone mets - please join in

Hi Bon

 

I have Zometa every 4 weeks as I also have a bone met in my pelvis.   Is there a reason for having Exemestane on its own if it is usually given in combo ?  

 

Funny face, Carolyn and Bon I cannot thank you enough for your support today and Mojan I am going to repeat your words every morning, I won't believe it won't work I will believe it will !!

 

Since being diagnosed and having treatment this is the first time I have heard the words progression so it's knocked me down.   I feel so well too that I wasn't expecting it.  

 

Anyway you all know what I mean and you are all amazing xx

 

 

bonariensis
Member

Re: Bone mets - please join in

Hi Maria Louise

I have bone mets and I take exemestane and denosumab which is a bone strengthener administered by injection every 4 weeks. I've only come across one other person who is on exemestane on its own for sbc. You may experience different side effects from the ones I have, everyone is different though the se/s seem to line up with what the leaflet in the box says. In addition, it's hard to tell which drug is responsible for what you feel though I have tried to keep a record. I have numbness, tingling and shootong pains in my lower legs and feet. My feet hurt if i walk too far and when i get up from sitting or lying but this does vary during the course of a month. I get other odd aches and pains in my pelvis and hips. To begin with I had numbness and tinglng in my hands but this seems to have gone. I have had periods of feeling dizzy and I don't sleep very well which I think is the main cause of feeling tired. It's definitely a step up from tamoxifen. Having said all this it's not that bad. I have off days but lead a fairly active life.

 

I hope it works for you and doesn't cause too many problems.

Bon xx

 

 

 

jazmia
Member

Re: Bone mets - please join in

gosh ff 

just read your post ,my goodness hope i dont have two black streaks or will look like a zebra,which will be more hilarious to family ,

olove renee

funnyface
Member

Re: Bone mets - please join in

Renee, My hair came back in after my primary cancer slightly curly, my normal mousy dirty blonde with two white streaks about an inch wide. One down each side of the head! Out came the box of bleach! Then I lost my hair with secondary and it was a drab mixture of different shades of blonde, brown, white,  and grey. My husband has never complained about anything I've done to my hair. Always said it was my hair. One day he looked at me and said I don't want to hurt your feelings, but your hair color is a mess!! He said have you thought about coloring it again or are you waiting for it to change?!? Out came the hair products again. FF

jazmia
Member

Re: Bone mets - please join in

thanks ff

i am going to ring oncologist secretary when i get back on monday as he stated at last appointment he was bringing my next appointment forward by one month for his and my own peace of mind ,plus bringing the ct scan forward to correspond ,so why now cancel??

 

i noticed in one of your posts you were on about hair,well i am 76 and never ever died my hair ,always been a mousy colour until ,darren was born in 1969 and i went silver grey and always have kept it silver ,but i did lose some hair before i came of the chemo and still lost quite a bit on targeted therapy,however it is growing back in JET BLACK ,plus all curly in nape of neck,i dont like it but have to put up with it ,my family think it is hilarious and keep telling me silver grey with black streaks wwill be so with it ???they are on another planet

love reneexxxxxxxxxxx

funnyface
Member

Re: Bone mets - please join in

Renee, I'm relieved to see your DIL is able to give you a lift to these appts. You amaze me with your strength to carry on! I agree 18 days will be a long wait! You will need some chocolates to get through! FF

funnyface
Member

Re: Bone mets - please join in

Jellytot, I'm sorry you had a problem again. I'm sitting here praying and wishing for you to get squared away with a treatment plan that is effective with minimal SE's! You need a break emotionally and physically from this rollercoaster. Hugs, FF

funnyface
Member

Re: Bone mets - please join in

PMOL, I'm happy you found the escape door! Enjoy your sister! I hope you can have some fun! FF

funnyface
Member

Re: Bone mets - please join in

Maria Louise, Ignore my previous post.I was catching up on posts from yesterday and responded. Then I read today's post. Now, that you have picked up your med I will tell you I'm not having any problems with it. Of course each of us is different. I was on metronome for 21 months and it killed my knees! At one point I was on crutches get some relief from it. This med is not harsh on my knees and has been such a relief. My hair has always broke a lot on all the drugs. I was just looking at my hair today and it seems like the broken areas are growing. I'm a bad one. I have never stopped bleaching my hair. I'm not advising anyone to bleach their's, I just hate how mine looks without it! Good luck!

funnyface
Member

Re: Bone mets - please join in

Maria Louise, I don't blame you for being upset. They should not have changed yiur drug without an explanation!! Maybe others might disagree with me but I think that was unprofessional! I'm furious for you! Have you received the drug yet. I'm thinking it might be exemetsane which is also called aromosin. I am currently on exemetsane but in combo with evermolimus. Did you make any complaints about SE's of tamoxifen that he might have thought a new drug might be better? I hope you can get answers on Monday! I'm sorry you have to wait the weekend! FF

Rose47
Member

Re: Bone mets - please join in

Hi Mojan

 

I think I must be post menopausal as the fec chemo stopped my periods over a year ago and I have not had one since.  My scan was 2 1/2 weeks ago.  My tumour markers were OK as I have them done every 4 weeks before I have zometa.  Maybe they are not an accurate indicator on some people.  

 

I am am just hoping that these new pills do their stuff and stop any further spread.  I had to look up where my adrenal glands were !!  Now I need to re group and be positive again,  I.believe in the pills.  Out of interest do you follow any particular healthy eating plan that helps with these little blighters.

 

Carolyn thank you for your explanation and I hope you those tablets keep you chemo free for many years to come.  You and Jeanette seem to be doing so well on them.  Xx

Carolyn52
Member

Re: Bone mets - please join in

Hello Maria
There are 3 common used hormone pills ...letrozole , anastroze and exmestance. ..they all work very much the same but from reading the threads I think exmestance can be easier for side effects...I'm on letrozole which is doing a good job after nearly two years.
Most of these do cause more bone aches ..so don't panic if you feel a bit stiff when you get up etc. My knees almost play a tune if I bend !! You might find you shed a bit of hair more than usual so try to avoid hair straighteners and harsh colour .
All the very best with it and in general we all want to stay on these pills as long as possible to stop out mets partying in the body !!
Hugs xx
Moijan
Member

Re: Bone mets - please join in

Oh, our posts have crossed.....now we know....i Havent personal experience of it, but dont google....you can ask the nurses or call the helpline for a chat. Just stay on this site.  and dont worry, it wont make any difference...just take the drug, try not to imagine awful things...and chat to the bcn on Monday.

Moijan
Member

Re: Bone mets - please join in

 
Moijan
Member

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

Rose47
Member

Re: Bone mets - please join in

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

Rose47
Member

Re: Bone mets - please join in

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

 

xx

Rose47
Member

Re: Bone mets - please join in

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

bonariensis
Member

Re: Bone mets - please join in

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

Moijan
Member

Re: Bone mets - please join in

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💚💚💚

Moijan
Member

Re: Bone mets - please join in

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

jellytot83
Member

Re: Bone mets - please join in

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

Rose47
Member

Re: Bone mets - please join in

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
Hayeswen
Member

Re: Bone mets - please join in

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
Hayeswen
Member

Re: Bone mets - please join in

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
jellytot83
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
PMOL
Member

Re: Bone mets - please join in

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

jazmia
Member

Re: Bone mets - please join in

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

funnyface
Member

Re: Bone mets - please join in

Renee, You will be mad after all this! FF

jazmia
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
jazmia
Member

Re: Bone mets - please join in

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

bonariensis
Member

Re: Bone mets - please join in

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

funnyface
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
crissy
Member

Re: Bone mets - please join in

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

jazmia
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
crissy
Member

Re: Bone mets - please join in

 

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

 

funnyface
Member

Re: Bone mets - please join in

Babsy, Sounds lovely and peaceful! Enjoy!

 

Carolyn, That would be something I would say! 

 

FF

Carolyn52
Member

Re: Bone mets - please join in

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
Babsy
Member

Re: Bone mets - please join in

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   

bonariensis
Member

Re: Bone mets - please join in

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

funnyface
Member

Re: Bone mets - please join in

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

jazmia
Member

Re: Bone mets - please join in

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 

PMOL
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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
jazmia
Member

Re: Bone mets - please join in

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