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Bone mets - please join in

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Re: Bone mets - please join in

Hi everyone,

 

Just come back from seeing oncologist to get scan results. Not good news. Faslodex not working, liver mets have increased and new ones appeared and new one on right lung. Was sure it was working as felt so well. I start Eribulin next week. Really want something to start working, need some good news. 

 

Liz x

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Hi weeme,

I have just finished 20 doses of rads to my sternum and ribs. I was told that because of the zapping position it would clip my oesophagus and that I could expect a cough, sore throat and issues swallowing. I definitely have all those symptoms and it sounds like what you're experiencing too? xx

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Girls i had radio for back pain and it went through my sternal met. Have had a wee bit of a cough and tickley throat. Anyone else the same xx
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Hi Carolyn 

It has been throwing it down here since tuesday evening ,never let up yesterday and is same up to now today ,

Please have some choc cake for me as well and have a good day,but dont get too wet .

Renee 

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Hiya ladies
It's rainning here in Devon too but somehow after the heatwave ..it doesn't seem so bad and hubbys garden certainly needed the rain.
Sons dog is sat here with his legs crossed as he doesn't like getting wet .
Well just off to see Barton ..and cake will be involved again.
Hope everyone is tickity boo xxxxx
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Hi joelle

Sounds like a good plan and from what you have said your Mum will be getting Ibrance along with faslodex. Ibrance is the newest drug being added to hormone treatment and getting great results but so far not available on the NHS, it's currently being funded by the manufacturers (Roche?) themselves until NICE make a decision in September. It is what is called a first line treatment ie your Mum is getting it as she has not had any treatment so far for secondary BC, only primary BC. It enhances the benefits and extends the effective time of the hormone drug that you have alongside it. By you saying your Mum is having a hormone injection the only one given that way is faslodex so I'm guessing it's that!

Good luck with the CAT scan today, we all hope no new nasties are shown up and your Mum can crack on with her treatment that should hopefully alleviate some, if not all of her pain.

Nicky x

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Morning ladies, another miser wet day here in Manchester today!
Just want to add my thoughts to the diet/therapy discussion. At the beginning of my dx I beat myself up about everything I ate/drank but after a chat with my onc I no longer do. She told me to just eat a varied diet, and that I didn't need to exclude anything, I think as long as you are not living on take aways and chocolate bars every day it's fine.
I haven't excluded anything from my diet i just try to be sensible about it, at weekends I still enjoy a few glasses of wine on the Saturday and Sunday evening along with a block of my favorite Dairy Milk with my hubby......cancer isn't spoiling our relaxing precious weekends together!!!
I tried therapy /support group but it was for me, I found it made me focus more on the disease and was upset for days afterwards. I'm not saying that it doesn't help just that it wasn't for me. I of some people that it was brilliant for them and that's fantastic so it's down to the individual really.
Hugs Janette xxx
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Joellek, this sounds like a really good and carefully thought out plan and you have a really goodconsultant as he/she has clearly taken the time to talk it all through with you.

go with it, and I wish you all the best. Xx

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Hi there thanks so much and thanks for the link going to check it out just now xx
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Joellek
Hello sounds like there is a plan in place and although you don't know the drugs names it sounds like bone strengthener and hormone therapy which is standard first line treatment.
These are all good tried and tested regimes and so try not to worry too much .
Hugs xx
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hi there again,

so first step is a cat scan after the cat scan if nthg on the organs the onc said mom will start 3 drugs

1 is a bone modifying drug by IV to help repair and stabilize the bones

2 she will stop her current hormone therapy (arimidex) and start a new one that is by injection once a month

3 she will take another drug everyday by pill that aids the hormone injection

if everything checks out as expected they may consider radiation for the spot on her tibia to reduce the size and pain

she would also be getting a cat scan every 4 months to see if cancer is responding

dr said he back pain is probably from the spots too.

oh dear not sure how to feel. cat scan is tomorrow just afraid and praying its not worse.

i know we dont hve drug names yet but is this similar to any of your treatment plans?

joelle praying for a cure xoxo

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Weemee, the counsellor has said he will help me adjust to my new normal. I'm so glad I went. Re food, my onc and BCN said there was nothing I should avoid but to eat healthily where I can. I've reduced my sugar intake, although I do have the occasional sweet thing it's not every day, I have a smoothie every day (homemade) to boost my fruit and veg intake, I've cut out processed ready meals, cut out bacon and meats like chorizo and salami and I drink as much water as I can every day. This is a useful website: https://www.nourishbyjaneclarke.com/

 

 

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Hija Carolyn,

thanks for that ,and i am fine at the moment ,and hope you are to,i am going through my usual two days of nausea but used to it now although not pleasant,

we have to put up with all manner of strange feelings etc but all for the good of ourselves ,well we hope so anyway .

been a dreadful day here and have had my friend ,her hubby has to go for biopsie tomorrow,bone scan friday and m r i,scan saturday so worrying ,plus she has to see a chest specialist as shadow on her lung ,not in a good place at present ,so hope my company helped

you may notice i am not on here every day but the site and you people do help me i can not say how much so keep up the good work

take care

Renee.

 

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Hello Renee
My oncologist said that with my extensive bone Mets ..I need dairy ..butter, cheese etc although we all know its not good but she said that it was better to eat these than just rely on calcium tablets etc.
A lot of ladies go sugar free too ..but I'm afraid I love choc and cakes too much!! I don't eat big meals either ..it just makes me feel all bloated and lethargic ....its just a case of personal choice really ...lucky enough I don't like crisps or salty food ....
Hope u r ok
Hugs xxx
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hi all you nice ladies ,

i  am a little confused here as last friday my oncologist told me to just eat what i fancy and when ,as i had just told my onco that  i have gone off any main meals i just can not face a lunch at all,no meat ,bacon,not even fish and can only get down sweet foods ,cereals rice,jelly ,ice cream fresh cream,well just anything really sweet ,i can tolerate cheese and bicuits plus crisps .

i know these foods may not be helping with my diarrhoea,but what am i supposed to do,and who is right in this debateor does everyone have different ideas on diet when suffering with cancer .

take care all of you

Renee 

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As regards diet I asked my Onc and she said just eat a balanced diet but try to avoid dairy so have stopped my daily latte and now use almond milk and only have minimal dairy I just can't give up butter . I also eat more fruit but I think all things are ok in moderation. She also said cut down on red meat. As for counselling everyone is different I tried it and got nothing from it I don't want to talk about horrible things I want to be normal and as nice as The counsellor was she was not in my shoes . My husband however found it useful as he came with me Wendy
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Jellytot
Phew no wander you were shattered after 20 nukkings and so much travelling too...
That's stage one out the way ...relax now if you can ....it's all gets easier to deal with.
Hugs xx
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Hello weemee
I had counselling with my primary in 2004 and went to support sessions too ...to be honest for me ..it was a waste of time ..felt very patronized and at the end of the day ..it's something that we have to get to grips with for ourselves ...but everyone deals with it in their own way.
As far as diet is concerned a lot of ladies here are very knowledgeable and hopefully will help ..I'm a nightmare with choc and cakes etc ....but i do eat two bananas a day and my haemaglobin results today were good as they slipped a bit last month !!!
Hugs xx
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Hi jellytot. Counselling has me feeling stressd. It like admitting i have sec breast cancer. Got to door of maggies centre and turned back. Dont know when ill be ready to talk. I havent told my kids i have mets. Only that i have breast cancer i j ust felt couldnt do that and know if the bone mets spread i will have too. Just lost x
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Girls can anyone help with diet advuce. In an ER PR positive cancer but want to improrive my diet. I want to learn how reduce intake of oestrogen in diet or are planr oesreogens safe. Dont knnow where tobs tart looking at foods to avoid or increase x
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Hooray jellytot. I think it's just as exhausting travelling to and from rads sessions as the side effects are - or I certainly did many moons ago when I had 6 weeks of daily rads for my primary! What on earth will you do with yourself tomorrow? Ha ha. Good to hear you also found some relief from your counselling session I'm sure it will help you cope with this hammer blow that us secondary ladies have to deal with. 

Nicky x

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Final rads today, 20/20! Hooray! I am certainly looking forward to not travelling 2 hours round trip every weekday, it's been exhausting.

I had my first counselling session yesterday evening, I was a blubbering mess but boy did it help! Left feeling a bit lighter. Love and hugs to you all xx

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Thanks Moijan, I'll talk to the nurses about swapping when I have my next injection.

best wishes and hugs

ramade xxxx

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Hello PMOL, to answer your question I phoned the helpline here once and I had the most wonderful and kind nurse who phoned me back. I would say, apart from you lot of course, it's the most kindness I've ever received.

ramadexxxx

 

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biopsy result this afternoon US time... we just keep praying for something to be not soooo bad and treatable. But of course i just try to tell my mom whatever it is u need to know there is always treatments to try....


joelle praying for a cure xoxo
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Regarding biphosphonates, just to say, I have been on Zometa now for 3.1/2 years and have no side effects whatsoever, I tried just one cycle of denusomab Last June, ...meaning to change but got a lot of aches etc, so swapped back again. i now have Zometa 3 monthly and my bone mets are stable.

 

Moijanx

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Hi Pmol, the helpline is usually really good. Though I once rang with a health query and wasnt able to discuss it as there wasnt a nurse on.  However, that was some time ago...I think id maybe email the nurses on here if I had a query....though of course, others can see. But the nurses are very good.

 

hope you feel better soon...I find it hard, like everyone else, but I try and tell myself that things are no different than they were 'yesterday' before I knew the result...if that makes any sense at all? Its a real shame that we spend days feeling down, during the waiting period, because they are days where 'no news is good news' and should be savoured. Perhaps I am a bit nuts really, but I do try now not to waste those days worrying......harder said than done tho.

Moijanxx

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Hi girls,

 

welcome to the new ones - sorry you are here though.

 

I'm on denosumab evry 4wks after having had zometa.  Only side effect that I have is a pain on my arm straight after but only for about 30'

 

Other than that, I'm close to my first results after dx and think I'm loosing the plot a bit 😔 How do you explain to others what having the scans and waiting for the results mean? That anything sets you crying? That you are more sensitive than usual? That you are absolutely and utterly petrified even if you thought you were coping? Not sure how to move forward... I know that there are examples of how great the treatments work but just want this one to work for me...

 

sorry to be so down girls... I know you understand 

 

also, has anyone rang the helpline and if so how was it? Xxxx

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Thank you so much for your repky and a positive one at that. I just approved today and start next week on denosamab and ibrance. I am off work at the momemt. Would love to go back but worried about side effects. Just have to wait and see how iwill tolerate it. Thank you again and glad you you living life to the full. Xxxx
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Hi Weemee.  I have mets to most of my spine, sacrum and ribs.  I also have extensive eostoarthritis.   I have been on Letrozole, Palbociclib (Ibrance) & Denosumab for 10 cycles.   All 3 drugs have side effects which can include bone & joint pain & hair thining.  I have found Denosumab very tolerable although I did have flu like symptoms after the first dose.  I have ct scans every 3 months & bone scans every 6 months and am currently stable which is wonderful of course.  The pain has been pretty bad however it may have been some healing pain because now I am taking very little in the way of pain relief.  I live a very normal life and only get a little fatigue at the end of each cycle.  There is nothing I want to do that I don't do and although my Neuatrophils do get very low (another common side effect of Palbo) I have not picked up any colds or infections either on long haul flights or at parties etc.  I have dogs, ducks, cattle, tortoises etc and can handle them with out fear of catching anything which is so important to me.   Many bone metsers are living good long lives & we are so lucky to have access to these wonderful drugs.  They don't work for everyone but I hope that you will be able to enjoy a long, healthy and happy life - but live it don't waste it.  Please reply or pm me if you have any questions.   Bandit xxx

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Thanks Renee
Hope you are ok ...and you and mia enjoying the cooler weather too ...much nicer !!
Xx
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Good luck for tomorrow carolyn ,will be thinking of you.

reneex

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Hello ramade
Well at least you have had a recent scan so it will put your mind at rest ..
I'm due for denosumab tomorrow and hoping it will help with my aches ..it's a roller coaster of worry and discomfort which comes and goes in this mad journey we are all going through.

Hugs xx
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Hello Rosie, Nicky, Carolyn, thankyou for your replies. I did ring a nurse this morning and she wasn't sure what was causing it. I had my scan last night so she said they will see if anything on there shows the cause. Otherwise, I hadn't thought as you say it might be the everolimus which I can bring down in dose. Seeing the onc on 5th July so I'll see what she thinks.

thankyou all for being so kind, I've been really struggling recently, pain and emotionally to be honest, it's all so frightening.

hugs to you all

Ramade

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Hello ramade
As I've been mentioned ..yes I've been on denosumab now for 18 months and I have sometimes jotted down side effects ..after I had 6 ..I had terrible bone pain for 5 days ..after I had 12 ..terrible aching teeth and ears !! So I was rested from it for 12 weeks ..I have it six weekly ( my choice) now and seem to tolerate it better ..aches and pains could be the other hormone treatment you are having ...like the other ladies here ..good and bad days really.
Denosumab does have a lot of possible side effects listed ..but its only odd balls like me that seem to get any !! ( I'm the only one that can be sick on a basic cough medicine )
Hugs everyone xxx
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Hi Ramade, Rosie/Janette is right, there's normally no pain associated with the denosumab injections - just aches. I'd try to speak to a breast cancer nurse or even your onc to say how this is affecting you. Any increase in pain could be caused by different things, so it's worth letting them know how bad it has become.  Hopefully something can be done asap to get you mobile again.  BTW as far as I know Denosumab comes in a pre measured dose for all and therefore not able to be reduced.

Nicky x

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Morning ladies.
Hi to all the newbies, you are in good hands on here and will get lots of support advice and understanding.
Hi Ramade, sorry to hear that you are in a lot of pain, have you contacted your team? I really don't think it is due to denosumab, most people don't get any pain from it, I have been on it for over 3 year now and have always been fine, although Carolyn does get a few aches and pains afterwards.
Hugs Janette xxx
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Hello all you bone mets people. I am in serious pain in my pelvis now and seriously can hardly walk. I think it is the denosumab injections, I have had 4 so far and had some passing pain with the others but this is hellish. Does anyone know if you can have a smaller dose of the injection of this, if not I'm going to have to refuse it next time. Help please.

thanks

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Hi ladies

Just got back from a weekend trip to the south coast and very relaxing it was. Weather was much sunnier than forecast and I'm glad we didn't go in the middle of the mini heatwave we had the weekend before - we'd probably have had to be lying like sardines on the beach!

Welcome to all newbies and it's not surprising that you have a lot of anxiety - and questions - as its a real leap into the unknown.

Weemee - the Denosumab injection doesn't tend to cause any hair loss and generally there seems to be few side effects. Some ladies, like Carolyn, do feel achey just after they have had the injection and a,so bone mets can feel achey from time to time even if they are not actually painful. The hormone tablet you are in, with Ibrance, can give more side effects as they all tend to. It will vary how much they affect you and one side effect can be hair thinning which is true of all hormonal treatments although I can't say I had any problems when I have had them in the past. There is a thread about Denosumab which was busy when a lot of us first went onto it but has slipped down the list at the moment, I'll try to find it for you and 'bump' it up for you to read.

Joelle - depending on the outcome of the biopsy your Mum may or may not have treatment that could cause her to lose her hair again. Some hormone treatment, as I've just written above, can cause hair thinning and also a lot of the chemo's cause hair loss or thinning. Some chemo's such as Capecitabine which is in tablet form don't really seem to affect the hair although I had a short period of thinning when I was on it a few years back.  She can always use the cold cap if the treatment she will be on is one of the chemo's that means hair loss. I have lost my hair two times (in 7 years, so not concurrent) and didn't want to lose it this time around when I started eribulin in March/April. I have used the cold cap, which is very cold brrrrrr, but it has thinned anyway. Annoying, but I'm living with it and managing to disguise the more thinning area on the top of my head with wide, stretchy hairbands so it doesn't look too bad. I can't give any more advice than that but once she knows what she will be on she will know how the side effects will be and what to expect, until then she may read one thing or another which won't necessarily be the case - depending on what it is she goes onto.

Nicky x

 

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Hi there. Been awake same time as you. I am being offered bisphosphate drugs that dont make hair fall out. These drugs can stabilize bone mets for many many years. I feel your anxiery and stress an like you praying for a cure one day. I have read so many positive sories on this that outweigh the negative. Im glad to have joined the site. Thinking of you x
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hi ladies,

i was doing so well and being so encouraging to my mom and then i read a couple sad stories about bone mets and now im just petrified again. the biopsy result may come back tomorrow if not tomorrow it will then be pushed to monday. the closer we get to it the scarier im feeling. maybe its the unknown...
i know this question may sound stupid, but my mom is just dreading losing her hair again. does this happen with chemo for bone mets? i know theres all diff kinds, but to just kind of prepare her. i keep telling her its ok like it grew bk last time it will this time, but i kmow how emotionally painful that was.


joelle praying for a cure xoxo
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Thanks so much. Just things i dont like talking about with my partner as dont want to upset him x
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Thanks so much. Just things i dont like talking about with my partner as dont want to upset him x
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Weemee

 

I have found the side effects minimal. I get a bit achy and have joint pain (not sure if that is the tamoxifen) but nothing debilitating and I am still working full time.  I have had 4 injections now and am managing ok.

 

Wendy 

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Hi Liz
Thank you for your reply.I go for my next jab tomorrow. Hot flushes have been my side effect but I can handle these. It's good to hear that faslodex is helping you. My oncologist doesn't use markers!! Just scans. My next one is due in2 weeks This is just such an uncertain time and a bit scary so it's good to voice all this. Don't want to worry the family.
Thanks again
Denise
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Thank you for your positive reply the dark days i hope will pass soon. Im glad i joined the forum was scared but so glad inhave done it. Just gobsmacked at the amout of us on this with bone mets x
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Hi weeme

I'm on faslodex and denosumab, and have been since sept 16. All well and 3 stable scans. Side effects with me are hot flushes!! Manageable,  and I get very tired 10-14 days after jabs! Apart from that I work around 30 hours a week and try to carry on as "normal." So I find it ok. I do get a bit depressed but I think that's the condition not the treatment! 

Hope you find treatment ok too, 

Bel x

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Wendy thank you so much for replying. Heard so much about side effects of the des have you been ok. My goal is to get back to work x
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Hi Weemee

 

I was only diagnosed 3 months ago following a pain in my hip and straight in at secondaries; never had primary. I am 51 with 2 adult children a wonderful husband and parents and was/am still  devastated. However, so glad I found this forum as it has been a real support and you will find it to be too as time progresses. I have a denosamab injection in the stomach every month (is painless) and every other month they take my blood to check calcium levels.

 

Hope you start to feel a bit better about things soon

 

Wendy 

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Thank you so much when asked my original onc she just lil get you to do paperwork etc. Have no clue and so scared. Hope some of the girls on this will be able to when they have time. Also is there anyone on denosamab. Dont know what to expect x