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Bone mets - please join in

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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
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Lots of newbies on this thread. Welcome everyone. I joined about two months ago and like everyone else was in complete shock at diagnosis of secondary Mets on spine. Now I know I have lots of support and advice when I need it and am learning all the time about the vast army of treatments available for breast cancer. Still waiting for biopsy but taking the tablets and getting on. Reduced my days at work from next September, only to be rewarded with more responsibility (no extra money) but it seems my headteacher thinks I'll be around for a while. 

Good luck to everyone waiting for results and treatment plans and big hugs. 

FF belated thank you for your lovely reply last week. Just been busy and tired. Xx

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Hi Denruss,

 

I have been on Faslodex for 4 months after Capecitabine failed to work. I have secondaries in my lung, liver, spine, shoulder and pelvis. My tumour marker soared when on cape and tumour on liver doubled in size. Oncologist suggested faslodex. I have felt fine on it apart from hot flushes. My tumour marker has fallen by two thirds and I get results of CT scan on Thursday. Keeping my fingers crossed that it is working as it's much bettter than chemo!

 

Hope it goes ok for you,

Liz.

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I was diagnosed with Brreast cancer in 2002. I had radical mastectomy and following 5 years on tamoxifen was told all clear. My cancer came back in my lung in 2012 . I was commenced on arimidex and remained stable for approx 3years and 6 months. By then Mets were noted on my spine . I then noticed a small lesion on my scalp which was not thought to be related to my cancer. It was later removed and it was indeed my breast cancer. I had radiotherapy to my spine and changed to Aroamasin on which I was stable until March this year. I have more lesions on my scalp. One is quite big. I am now on Faslodex injections and have had 5 over 4 months. I wonder can anyone tell me of their experience with Faslodex . Does it take a while to kick in? If anything my head bumps are bigger.

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Hello weemee
Welcome to the forum and this thread where there is lots of knowledge and kindness.
Wow ..what a shock for you but you are getting the new ibrance treatment plan which hopefully will do exactly what it says on the tin. There are several ladies here on this so hopefully they will pop in and support you with it.
It's a very lonely place to be at the moment but as time goes on ..it becomes easier to deal with. Hopefully your friends and family will rally around but sometimes they don't really know what to say or do ..we are real here and understand your bad days and anger at it all.
Hugs xxx
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Hi folks. Joining because im truly at a low ebb. 6 weeks into diagnosis of grade er positive HeR neg Ductal. Cancer With spinal rib sternal hip and pelvic mets. Need some inspiration as fell im im in such a dark place just now. Trying to be so positive. Havent told older adult kids about mets as im btold i can live for a bit with bone mets. Starting bone strength stuff this week and a new drug called inbrace. Any words advice anything at all. Thank you for taking time to read x
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Hi Joelleck, welcome to the forum, sorry to hear about your mum's dx.
You probably feel like you are drowning in it all at the moment but I promise it does get easier.
Once your mum has a treatment plan in place and the shock of the dx wears off you will all start to feel more confident about the future.
We are a friendly bunch on here and there is always someone on hand to help/offer advice or if you want to just off load and let off steam we all understand.
Hugs Janette xxx
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Joellek...........I'm glad you tried the bone link I left you. As you can see this is a very friendly and supportive as well as knowledgeable thread. I am 70 now with a little grandaughter so I understand how your mum feels. But it is early days. My original dx was in 2001. My secondary dx was in 2014 and I am still here! At first you think this is the end, but Carolyn is right..........this is regarded as a chronic disease these days despite being secondary and round the body. Your mum's onc will find the right treatment for her now and everything will feel much better. He will find her a 'treatment plan'.  'Stable' is the target, but sometimes things even get better. Wait and see.

 

Take care and give your mum our love,

 

mo               x

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Hello
Welcome to this thread where there is so much help support and kindness .
Firstly, your mum is very lucky to have such a kind and caring daughter and at the moment you will all be in shock at the dx of secondaries ..we all have felt like that and thought that it was the end but ladies here are living with cancer ...some oncologists say now with better treatments that its not a terminal illness but a chronic one.
Once the tests are all in ...the treatment plan will be in place ..your mum will have a focus each day.
Keep in touch ..day or night ..usually someone here to reply as we have loads of readers on this thread ..some don't post but are there for you .
Hugs xxx
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Hi there.

Reading your post about  your mum sounds very familiar to me, I am in a very similar situation but a nearly a year on. My primary was in 2005 with a recurrence in 2011, feeling very positive that I'd beat it but was diagnosed with bone mets in 2016. My thoughts were like your mums, I'm not going to see my grand child, who was due a few months after my secondary diagnosis, however I'm here now and my mets are stable.

it is all very daunting at first but once your mum gets a treatment plan and you get your head round it, things will improve. I'm not saying it's easy, my family and I have our up and down days but we are all more positive. Like me it sounds as though your mum has a very supportive family, which is important, I am determined to see my grand daughter, and hopefully more grandchildren ( I have 4 grown up children) grow up. It's important to be positive, ask lots of questions to medical team, and live for today.

all the best, hope this helps. Xx

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hi there,

some of you may have seen the original thread i opened about my moms recent diagnosis.
well i must say its so heartwarming and relieving to know you ladies are so strong and living with a very similar diagnosis as my mom.
down below im gonna share my moms story and hope you ladies have some empowering stories to share with us. the big change this time around is i am married and have a baby and my mom is so afraid and heartbroken she wont get to live to see her granddaughter.
in april of 2012 my mom was diagnosed with stage 3c estrogen receptive breast cancer with many lymphnodes involved. she had a mastectomy and 8 rounds of chemo and 33 sessions of radiation and has been taking arimedex.
yesterday we found out after 5 years the cancer has spread to her bones. she is 55yo now. she is petrified as well as all of us. there was a lesion on her tibia causing great pain, they did a bone scan and found mets on her forehead, neck, ribs, and near her kidney. yesterday they did a biopsy on the lesion thats on the tibia. we r still waiting for the result and then the dr will determine the treatment plan. in all honesty the first time around we were so strong. but this time shes so afraid im petrified but not letting her see. i would love for her to read replied of people in similar cases who are living life bc shes so afraid this is the end...

looking forward to reading your replies. god bless you all and may the strength be with u to always keep fighting xoxo
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Renee it might not be dairy but it might be worth cutting it out just for a week just to see if it makes a difference maybe just eat salads and fish just give it a go its worth a try julie x x
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Hi Again Julzd

You have really made me think now asi have gone off all savoury meals completely ,can not face them at all and told onco this friday,as i am living on ice cream ,fruit ,jelly and any cream cake i can get my hands on,he said it was fine as not diabetic but you make me wonder now ,gosh what else can i eat ,haha joking i will find something but one good point i dont eat butter or spreads ,nor milk i do have loads of cheese and cream cheese also on crackers etc,crisps ,generally junk food which i would be going mad if grandchildren were eating like this,but thanks as worth tinking on what can be cut out .

Renee

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Renee you have same as me im he2 I have Mets to lungs and liver too mine have been shrinking for past two year and when I went on Friday my oncologist said scans were really good and meds were working really well x x your stomach problems will get better mine did im sure I was worse when I ate dairy products x x
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thanks again julzd.
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HI there

thanks for replying ,i was on chemo ,but only had two sessions as ended up in hospital both times with severe diarrhoea for 7 days out of my 21 day cycle so onco took me off it and now have herceptin ,perjeta ,plus one hormone tablet and 8 immodium every day,i know this sonds ridiculous but doc onco and nurses say its fine to take that many for ever if it helps,

i have BC HER2 plus spread to liver and lungs,but all are stable on this regime and heart perfect ,i just wondered if you had same symptoms regarding the runs plus hair loss so thanks for taking time to reply ,i do appreciate you doing so.

Renee

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Renee also if your hair is thin its best to use a baby shampoo so it's not to harsh x x
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Hi Renee
Have you been on docetaxol too ? I was on that first then herceptain perjeta Letrazole and zoladex for the last year. I had stomach problems at first but its settled down now. Im not sure if the weight gain is from herceptain and perjeta or the Letrazole and zoladex. My hairs ok just curly and short from the chemo. I find the meds im on ok i still go to work and try to carry on as normal. My feet ache a bit on a morning x x
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Hi Julie

i have never mailed you before but wondering if you can answer my question,i am also on herceptin and perjeta have had 7 sessions and doing ok with it ,but have the runs quite a lot ,plus lost my hair ,slowly but still lost it ,and i notice you say you have gained weight while on treatment ,i have not put an ounce on ,i could do with doing so as very slim since my other problems ,onc has put me on 1 hormone tablet a day since friday when i saw him,and wondered if this will help

thanks for reading 

Renee

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Renee........that all sounds like good news. 'Wait and see' about the spots which could be something ordinary........skin so odd........sounds like good advice. The new hormone tablets should be a good supplement to the herceptin & perjeta. Your onc obviously wasn't too worried about your skin etc which is a good sign. All in all a good day! Well done!

 

mo           x

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I know I have to face Jeannette too ive told myself off lol. My husband's watching Glastonbury downstairs in catching up on big brother. I started a new job I left coral bookies and went to Ladbrokes I have two six hour shifts I love it just enough to keep me going.i am going to get myself back to the gym next week now I know things are ok again i can stop my mind working overtime. I think the accord ones are the ones I like il check tomorrow and let you know I know it's a thin box x x