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Bone mets - please join in

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Re: Bone mets - please join in

Hi ladies. Thanks for your support. I know I'm stupid to Google things I should know better. I came across it by mistake then one thing lead to another giving me a terrible weekend of worry. I spoke to my onc nurse today and the metz they are talking about is in my jaw which I know about and has been there from the beginning although not so much. The treatment is for neuralgia pain in the face caused by pressure on the nerve.
From what I can make out I'm put to sleep then they wake me to see if the pain is still there then they put me to sleep again. Clever stuff. It only takes 5 - 15 minutes to do the procedure and there is no cutting involved. I think with that and the new chemo I was just overwhelmed. My hubbie is away too which doesn't help as he's my rock. I was planning on going to America on 20th September but there's no way I can go on this new chemo. It's knocked me off My feet. The fact I look like a sumo wrestler due to steroids is not helping with my legs. Size12 to 18 in two months. Hey fatty bum bum. Lol.
Anyway enough rambling. Thanks once again you lovely ladies. Xx
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Hi Carolyn

 

I have been on herceptin and tamoxifen for nearly 9 year now.  I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place.  😀

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hi carolyn,

I should be so lucky ,doing all the things you mention,must be heaven ,even thinking about it makes me smile so thanks for that as have not felt like smiling of late ,so shall now go and just visulise what it would all be like.

thanks reneex

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Hiya Renee
Thought you were on holibobs ..hence your absence. ..sunning yourself on a beach with a pina colada and having sun tan lotion rubbed on you by a very fit adonis !!! Ha ha ...
Phew ..that was a hectic week for you but hopefully it's all good ..
Hugs xxxx
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Hi Carolyn  and all other ladies ,

I have not been on for over a week as last week had herceptin and perjeta treatment ,which knocks me for six anyway then heart scan ,followed by c t scan ,plus radio therapy treatment scan and start radio tomorrow for 5 sessions so have not known whether i was coming or going ,plus not looking forward to r/t at all ,but hey if it helps all will be good ,its because breast is weeping and bleeding outwards so have district nurse calling again,to make sure everything is as it should be ,if honest i am quite scared of this outcome as not opearable and no cure just treatable so keeping everything crossed at once even legs when on loo,i should be so lucky as to have two legs as may manage it then .

take care and love to all 

reneex

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Feeling very cross and annoyed with myself ..thought I would do all my ironing. .last item ..a brand new shirt I wore once ..yes u guessed a great big iron hole in the front !! Can't remember the last time I did that ..can't even put a patch over it saying idiot or numpty !! So in the bin it's gone.
😭😭😭😭
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Hello Alex
How could you stay away so.long from us !! Glad you have checked in again and welcome back.
Wow ..you are doing well ...assume you have the benefit of herceptin as your treatment plan?
Hugs xx
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Hi everyone,

 

i have not not been on this site for years.  I just thought I would check in and say hello again.

 

I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip.    It's HER2 and E/R receptive.  The disease has remained stable.  I worked full time up until last year, I retired in November 2016.  It's sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.  

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Hiya Maldives

Everybody has a unique pattern for cancer and yours is very unusual ...the procedure planned must be a good one as they wouldn't be risking it if they thought it was a waste of time.
You don't say whether it's going to be done under general or local anaesthetic. ....general sounds best
As u go sleep and wake up ...all done !!
Special hugs xxx
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Hi Maldives, please try not to look into "survival rates" too much, this cancer lark is VERY individual and not one is the same!
Good luck today, I hope things go ok and they can explain things to you so it makes more sense.
Hugs Janette xxx
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Hi Maldives, hope you get some sense out of your onc nurse today. You shouldn't have to find out about such things by reading a letter. I hope all goes well on Saturday we'll all be thinking about you.

Hugs Bon xx

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Maldives...try and ignore the 'survival rate' stuff...we dont know how valid the research was and anyway...it wont help to think about that!

 

hope tomorrow goes well...poor thing you have had a lot of things coming up!

 

yes I was on Taxol, made me tired...give yourself some slack and rest upxxx

drink loads of water thoxx

Mx

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Hi. I'm feeling really rubbish at the moment. I have been lucky with side effects and I'm ashamed to say quite blase about the cancer. Some say it's my way of coping but I just think I've been lucky not to have had bad side effects. My cancer is very widespread throughout my body in the bones. Now in my liver too. My worry is the metz in the mandible and dental nerve.
Reading up on it I didn't realise it's got a low survival rate. I just thought it was a nerve thing they were blocking. I'm going to speak to my oncologist nurse tomorrow to find out what's going on as there has been no mention of this till I got a copy of my referal letter this weekend. I hope I've misunderstood the letter. Oh well what will be will be. Femur nails are ok but legs are not working side effect of the chemo.
Sorry to blather on but I can't talk to my family about this one yet. Xx
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Jellytot Hope tomorrow goes well and you feel good being back amongst you colleagues
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Maldives
It's been ages since we heard from you and it's good to hear from you ..I think last time u had just started cape and you were feeling very energetic walking your dog!!
Wow ..that's pioneering surgery isn't it but if it takes the pain away ...you will feel so much better.
I personally haven't any experience of taxol as a chemo but others here will have .
How are the femur pins ? Are you mobile still when you are awake ?
Take care ..and don't stay away too long this time.
Hugs xxx
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Ops didn't finish that.my new chemo is pacl itaxel (taxol)
It's knocked me off My feet. I'm so tired even getting out of bed is exhausting
I'm finding it difficult to everything.
Have any of you ladies had this drug? What was your experience with it?
I'm also having problems with my jaw. I don't know if you remember me saying earlier in the year Carolyn but it now turns out I have mets in the jaw blnd which is being operated on in Southampton on Saturday. It's a balloon procedure to block the nerve to stop neuropathy pain in the face.
I. Really scared about it as it involves Neuro surgeons going across my main arteries with a needle. It will leave me with a numb face but hopefully pain free. If any of you ladies have experienced either of these things I could reply do with some support. Thanks maldives CD
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Hi everyone maldives here. I'm still alive and kicking been busy trying to stay alive with all different treatments. I'm on a new chemo for me anyway called paci
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Hello jellytot
Phew glad u can restart the drug again this week ..unfortunately being such a new treatment there isn't going to be much support with side effects ..I think you maybe might have to Google the drug and side effects/ results of trial etc ....
But we can help with a bit of useless banter here ...that's the wasp problem sorted ...please no reports to cruelty to wasps club but ssh I have an electric fly swat which I zap them with if they even dare to come into my house ...I have a little wasp cemetery on window sill now ....
Xxx
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Another wasp hater here!

 

Hope you are all doing as okay as possible. 

 

I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.

 

ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x

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Isn't it strange that something an inch long wearing a yellow and black jumper can petrify us ...when we are all living day to day with treatments and side effects !!
☺☺☺
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Yes...I am terrified of wasps tooxxx

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Hiya Moijan

Yep ..this thread has gone very quiet ...but with this weather ..wow why post here when we can all be out surfing ( or kayaking like ff)
The thing that spoils the great outdoors for me is wasps ..they are evil little devils ..I'm petrified of them so I've perfected my wasp dance now !!
Anyway. ..forgetting them ..have a good bank holiday ladies ...
Hugs xxx
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Hi Guys!

 

my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.

 

however, I think we all worry when one of us disappears.....makes us wonder if they are ok!

i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.

I do hope everyone is chugging along nicely?

 

 

MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.

 

 I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group' 

arent we ladies?. And my guess is, this forum also extends lives.

Moijan💚💚💚

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Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum! 

Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.

Nicky x

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Hello bon
Lovely photo and yes ..as you don't sleep at least u saw the lovely sky ...
I had a good sleep one day this week too ...makes such a difference the next day ..never thought sleep would be a luxury !!
Xx
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There are few upsides to not sleeping well but sometimes you see beautiful things. The other day I looked out at 5 am to see Venus close by a slender crescent moon. Dawn was breaking, bats were still flying and crows were having their first morning squabble. This morning I looked out at 4 am and saw Orion low in the eastern sky - a sign that autmn is almost here. It didn't look quite like like this picture.

 

orion_Large-e-mail-view.jpg

Slept really well the night before last, can't remember when I last did. Felt so different yesterday.

 

This has nothng to do with bone mets. We used to post things that had inspired and moved us in the secondary private group but hardly anyone goes there now so please excuse me for postng here.

Hugs to all Bon xx

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Good morning all, 

 

I am amazed at all the breast cancer knowledge I have gained from this forum.

Thank you all who take the time to get this information and post it for us to read. 

 

I can't believe there are so many treatments oncologist use to help us live longer. 

 

I was diagnosed with secondry bone in March this year and was devastated but over the months this forum has helped me cope and I am more relaxed about the situation. Thanks ladies.

 

Take care out there and I hope the sun shines for you this bank hoilday. 

 

Crissy xx

 

 

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Thanks Nicky, that does explain why they had to wait quite a while to get these results through.  I am afraid I am a head in the sand kind of girl when it comes to my oncologist appointments and I just get the urge to bolt !!  I must be more pro active and knowledge is power but I am a complete disaster as soon as I get in the hospital.  So a big thank you to you lovely ladies .

 

The sun is out here this morning so I hope everyone has a lovely long weekend, out and about, in the garden or just winding down.

 

much love xx

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Well, I think between us all we managed to explain things 😊

The other thing I've learnt about the HER2 tests is that they do an initial test using dye which locks into the HER receptors on the surface of the BC cells. Depending how much dye is taken up will give an initial result between 0-3. If you get a 3 you're definitely HER2+ and if you get a 0 you're definitely HER2-, however a 1 or a 2 do mean it's inconclusive so they go on to do another test at DNA level which is the one that takes the time as I don't think all laboratories do this test. That result will give you a score (I don't actually know what the range is). Anything over 2.0 is deemed HER2 + I am only slightly over this figure (and it used to be that 2.2 was the cut off point) which is why the oncologists have determined I won't gain anything further from Herceptin treatments as I didn't respond well to the last one. I've only learnt this recently, about the score results but you can search online for these explanations. I remain hormone positive which is why these type of treatments have benefitted me the most over the years - well, and chemo of course!

Nicky x

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Thank you so much ladies I have a much better understanding of it now.  I think my her status was the test that took quite a while to come back as it was inconclusive,  eventually I was told + but I suppose only just if it took a while to decide.  I will chat to onc at my Oct appt.

 

Red riding hood I do hope if you have a treatment change you can still get out in the garden, you can disappear into a different world sorting out flowers etc.

 

take care everyone, much love xx

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Maria-Louise.........Like you I have been hoping that everyone is out there having a good summer! It has been a bit quiet lately. The weather hasn't been too good, but if things are booked then people go ahead, especially if it means going abroad. So things should pick up here at the end of Sept.

 

You asked about herceptin so I am putting my oar in. I am probably having a treatment change myself soon, but will have an MRI to make sure in a few weeks. I have been on letrozole + denosumab since 2ry dx 2 and a half years ago. All stable until now when a small change in the liver was spotted. I may now move to herceptin from letrozole......which has been easy for me.

 

Criteria for herceptin? You won't benefit unless you are HER2+ve and most 2dary people have a HER2 test at the start. Sometimes at crucial moments they will test for HER2 again, just in case. I had one HER2+ve result out of 2 biopsies at the start so herceptin was a possibility then, but I was stable on letrozole.....ER+ve 8/8 too......and lung spots vanished, so I stayed on that. Because of my possible progression HER2 becomes relevant again. So that is the first thing. Then the manufacturers......Genentech in US......trialled the new anti HER2 drug perjeta alongside herceptin and found a small but significant improvement when those 2 are given alongside chemo......docetaxel......for 6-8 rounds. Then the herceptin/perjeta continues for as long as it works. The trial was called CLEOPATRA.....acronym.

 

So....criteria involved are 1. being HER2+ve    2. herceptin is now taken with perjeta (pertuzamab)     3. docetaxel must be taken to start the herceptin/perjeta......unless the person has already had docetaxel in the past. In that case you can start without chemo.

 

It gets more vague in that the consultant has discretion with the chemo........if it is too hard then it can be reduced in concentration or in number of rounds. It just has to be tried. My onc has told me that. I am a bit worried at my age (70) and size (very small!) so he said it could be a lower dose, and/or fewer rounds. NICE has had to agree to the CLEOPATRA results of course.

 

I hope that is helpful. I am not an expert of course, and it is always worth looking further, or asking your onc. Everyone has different situations and needs. But most of what I have said is fairly accurate! It gives you an idea. Hope it helps and it is what you were asking about.

 

Out into the garden. If I start on docetaxel in Oct I won't feel like gardening so am trying to cut back a bit now! Take care everyone visiting the thread today!! Love to all,

 

mo       xxxxxxxxxxxxxx

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Oops ..sorry nicky and I posted at the same time ..nicky has done a better job of explaining things than me .
Xxc
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Hello Maria
Yes ..it's quiet here this week but maybe a good sign everyone is tickity boo.
Now for once ..I can answer your question ..herceptin is a treatment but only for HER2 positive
Tumours ..this would have been checked at your primary stage and you would have been offered this option if you met this criteria.
At primary stage ..chemo is given and then a usual 12 month treatment of herceptin.
At secondary stage ..chemo would be given first and then herceptin ( with perjeta) and this can be ongoing as long as it works ..some ladies have been on it for many years.
Hope this info helps Maria and best of luck with exmestance. .I have read it's the easiest hormone to tolerate ..
Hugs xxx
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Hi Marie Louise

Glad to hear you are feeling more positive, having progression (however slight) and a change of treatment always throws us I find. Once you get settled on the new hormonal you can hopefully have a breather. I agree that the hormonals can make you very achey though and feel like you are 97! I will be back on some form of hormonal in the next few months once I finish my course of Eribulin.

In answer to your question you only benefit from having Herceptin if you are HER2 +. I have had my HER2 status checked twice since developing liver mets and was told that my status had changed from negative to positive. However I have recently been told that I am only weakly HER2+ therefore won't benefit from having any more treament that is based on Herceptin.  What I do know is that all BC cells have HER2 receptors but it's only when tested you find out whether you have an over expression of them. If you do have more than is usual you are likely to be given Herceptin. All BC tumours are tested for this, you don't need to ask to have it done but you can get a biopsy done (if appropriate) if you ever want it checked again - as I did after 5 years of mets. The majority of women's receptor status, including hormone status,  won't change but it can do in about 15-30% of cases from what I've read. Hope this helps.

Nicky x

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Morning,

 

It has been rather quiet on here this week and I really hope its because everyone is feeling ok and out there enjoying the last weeks of the summer holidays.

 

Funnyface what a lovely way to spend a few hours just you on the lake with a Kayak, hopefully you will do it again.

 

I had a bit of a meltdown last weekend after being told of change of treatment but I am now back on the treadmill !  There is no reason why this little pill won't do its job for a while is there !

 

Just one thing I have noticed as I have been through the threads is Herceptin keeps popping up.  What is the criteria to be able to have this as part of the treatment plan ? 

 

Nicky I hope you enjoy your day out and the bone ache give you a break for the day.  Since starting new hormonal pill It feels like I can feel every single bone and joint in my body.  Not sure if I went to bed 47 and woke up 97 !!  Oh the joys ....

 

M xx

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Loving your description of your kayaking adventure FF. Drifting off away from the shore as soon as you can so hubby can't be your watersports coach ha ha. I hope you get to do it again soon as it sounds like it suits you to have that much peace and solitude, bliss. Plus a sense of achievement that you got on and did something like this, I'm not good on water so I don't think it would be the right thing for me.

It's all very quiet on here in general, which is a good and bad thing! I expect ladies are off doing a few things as tends to happen in the summer months, not that we've had much of a summer in the UK. A hot blast in June then very iffy weather otherwise. OH and I are off to Carfest on Friday - no, not camping, just a day ticket as its quite close to us. We went last year and it was a good mix of cars (obz), food, music and a funfair. Beautiful weather last year but not so good this year, at least the sun seems to be out for most of the day though which will make it easier as it was pretty hot last year until the sun went down, then very chilly. I just have to hope I can cope with the walking around and no real seats to sit down on as I'm always a bit achey after having my Eribulin. If I can't we can always head home early as I'm designated driver.

Enjoy the Bank Holiday weekend ladies, whatever you are doing I hope you get to do something nice.

Nicky x

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Carolyn, I loved pottery when I was in high school! If you can find two men like Patrick Swaze to mold us, I'm in! 

 

Yes Rosie it was bliss! I desperately needed alone time where nobody could tell me how to do it. Love my hubby but driving me crazy! I couldn't find my water shoes so found an old pair of hot pink Mary Jane crocs. They have two straps on them. One goes over the top of the foot one goes behind the heel. I put them on and hubby looks over and says don't you think that strap you have over your foot should go behind your heel. This is me, Nope and I think I know how to put my shoes on all by myself!! It was supposed to be just me and my son going. Next thing I know hubby pulls into the lake and sits on his lawn chair. I'm now livid bc I don't want him screaming directions from the side line. Him and my son both said you are going to stay near the edges in case we have to rescue you. I'm like sure! Lol in 5 minutes I was out in the middle of the lake where I couldn't hear them!! There was kids like 6 and 7 kayaking and on those stand up boards. I figured if they could be out there so could this old woman. FF

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Just a useless tip from me as usual ...I got bitten by a insect a few days ago ..so been taking a hayfever/allergy tablet to stop the itching etc ...it has helped my bone ache but also I haven't had such a itchy scalp as normal either. ...I know a few of us do scratch a bit .
Hugs xxx
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Wow ff ..you are like the little duracell bunny ..well done for getting out on the lake ...putting me to shame ..
Thinking of taking up a evening class with the dark boring evenings but can't decide what ......Pottery ( only if I can have a Patrick swatze look a like to help ) Language maybe ( about time I learn to speak foreign) Art ( could draw a bowl of fruit) ..decisions decisions! !!!
Hugs xxx
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Hey good for you FF!! Escapism is is bliss!
Hugs Janette xx
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Some fun info. Last week I decided I wanted to try kayaking on a big lake by our house. Sunday was the maiden voyage. Myy son took me! I impressed every one and myself! I was all over the lake and didn't flip over. I enjoyed being part of all the activity happening on the lake. I also enjoyed being out there relaxed by myself!! I felt normal, not a cancer patient! I will be going again! Not bad for a soon to be 63 year-old decrepit woman!! FF

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Rosie, Hope your itching stops! It's so annoying!  I have welts and bumps on my cheek today. My meds can cause acne. Yesterday it was one bump on cheek and chin. Today it's about 5 bumps. It is red in a circle about 2 inch in diameter. Doesn't itch! Just looks lovely to go to work with!!  

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Hi Carolyn/FF, I get the whole tired can't sleep thing. It's like omg how can you be soooo tired but yet you still can't fall asleep! Sometimes though I think we can over think the situation, I go to bed thinking will I sleep tonight!
Well I've started on the accord letrozole today instead of femara, spent about an hour deliberating whether or not to, I can only give them a go though and see if helps with the itching.
Hugs Janette xxx
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Oh funny face ..what a couple of stay awakers we are ...I don't drink caffeine after 4 pm, don't take any phone, tablet or device to bed and I even bought new duvet and pillows last week.
I always slept well till this cancer lark. Hubs always said I could sleep for England and through an earthquake !!
Well ..tonight try again with these pills ...
Xxx
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Carolyn, I truly can't figure sleep out! I've been trying to go to bed and rise and shine at around the same times. I don't get an afternoon nap anymore since I work 1 to 4! Yesterday when I got home from work I could barely hold my head up. Hubby made dinner and I sat. I was like that all evening but wouldn't allow myself to sleep. About 45mins before bed I said OK you can lay down, relax and watch some TV, but if you start to fall asleep you have to get up. I did good and felt relaxed. Thought OK maybe this is whst I need! I need to unwind better b4 I get in bed. It was a no go! Went yo bed, Hi ceiling! You and I are staring at each other again. Wow, fantastic lightening display. Guess I will turn the radio back on! Look at that concern, I hope the spider hangings that made it. Maybe, I should get up and knock that down, b4 he gets me etc., etc., etc.!!!!! What happened to being tired!! Now, I'm up but ready for bed! I'm like a baby with my nights and days confused. I'm trying hard to readjust this old clock!! FF

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Yawn ..zzzzzz. .so tired.
Took kalms as instructed. .did feel relaxed when got into bed ..thought I would supplement things with "Carolyns meditation plan" . This really consists of 20 deep breaths. .in and out....a drink of tonic water and a rub of my Buddha's fat little belly.


Still awake 2.30 am this morning .. but will try again tonight ..
Xxxxx
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Carolyn, Oh my!!! I will be nice. She was a little over concerned.

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Hello ladies .
Today I went into my local chemist to buy some Kalms ( herbal sleeping pills) and as I was handing over the cash ...here is my conversation.
Sales assistant:
Oh ....are you stressed. .
Me :
No just can't sleep very well.
Sales assistant:
Are you in pain then?
Me:
No ..not really. .I just can't sleep.
Sales assistant:
Are you depressed or anxious ?
Me:
No ..I'm a happy bunny.

Goodness knows what I would of been asked if I was buying condoms or pile cream!! In front of a queue of people ..if I wasent stressed before I went in chemist ..I certainly felt stressed by the time I left.
Anyway ...zzzzzz hopefully for tonight.
Xxxx
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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
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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