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
Thanks Moijan, I'll talk to the nurses about swapping when I have my next injection.
best wishes and hugs
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.
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.
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.
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
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
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
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.
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.
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.
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.
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,
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
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
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,
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,
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
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 .
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.
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........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!