Lovely good evening,
I wish you all clean scans, good fight, stay strong and positive in the upcoming 2019.
Hugs???
Hi Riversidedawn
I have been on Denosumab for 5 years, it was licensed in late 2012 & I was put on it when diagnosed Dec 2012 so GP saying it’s a new drug isn’t quite true. GPs don’t tend to administer it because it costs too much, I was told £150+ per injection back in 2012!! Having said that, my local hospice will give it & I know someone on this forum who self administers at home. My chemo unit & onc are very flexible as to when I get Denosumab-they tend to tie it in with whichever chemo I happen to be on so I have had 4 weekly, 6 weekly , 8 & 12 weekly. All the best with your treatment.
Helen x
Correction! Been on Denosumab for 6 years not 5!
Yes I wish everyone here a happy new year with good results from whatever scans/ tests and good responses to whatever treatment. May this be a year of success for all.
Next Christmas it WILL be better!!
Next Christmas it WILL be better!! Jayrand56!
Hi All - I’m new to this and would like to pick the brains of all of you amazing ladies.
I was dx with BC in April 2018 and two weeks later an MRI scan and PET CT scan showed I had a solitary secondary bone met lesion in my sternum. I had chemo (FEC-T) followed by lumpectomy (x2) to remove primary. I am currently on anastrazole and zoladex (goserelin).
I have been told by the relevant surgeons that I am a good candidate for sternum removal (and rebuilding) but my oncologist is not keen. I still have to have RT and my oncologist said palbociclib is the next stage of treatment. I am at a cross-roads because the option to have the surgery is purely down to me and as I am a rare case there is no literature to support whether removal slows down progression of the disease. I am 47 and want to give myself the best shot but it’s a massive surgery and will take months to recover from.
I’m going to ask for a second opinion on this from other oncologists.
Has anyone else been in this situation? I would love to hear from you. Yikes! What do I do?
xxx
Morning all
I am new to this… was told yesterday that I have some spots on my liver and on my spine and pelvis. I hurt my leg back in Oct which they said was a muscle strain, I then fell 3 times in the next few months and the pain increased. They suspected a fracture of pelvis which turns out was true but only because a spot of cancer was on the bone and had weakened it. I was on tamoxifen although was having a few weeks off.
I only finished Herceptin last Feb (I am triple positive) after single mastectomy , chemo FECT and radio and petumazab. They think perhaps it was there all time but so small no one could see it on scans but since treatment ended its started to grow. I started to feel a little bloated on and off the week before xmas but have had IBS in past so just presumed it was an attack.
Not sure what to expect - v scared . any positive experiences out there please .
thanks
x
Nice evening all,
May i ask someone please, Faslodex, 1 dose, 2 dose two weeks later and now monthly. Each time it was injected 250ml in bottom, and pain came always 5.6.7th day afterwods. And ONLY on right side, left is good. Any experience?
As us like you go fitness and you pull your muscles. I will check it up with onc , but it is only one week after injections and it last cca 3 days and only on right side. Keft side is goid after injection. The pain always sort out 1 tablet of common painkillers, so hope thats not something bad, anyway i am curious
Thank you Nicki and Marmeid, we try it, sides effects is also muscle pain, but funny is that is only on one side(injection both sides) and roughly week after injection for 3 days. I def check it up with onc and let you know.
Thank you all for replais, mean much and help much???
Thank you soooo much bonareinsis!!! I tried look internet, but i didnt manage to find so great picture.
Please, i have one more question. Do you know, why meta was not seen on normal lung RTG, but PET/CT show something on lungs?
Ooh I’m glad thread of this is here.
As. I’ve. Recently. Had tough time. Xxx
Hello all,
I have not been around as 2 treatments have failed I was in hospital and now I am back home faced with a dilema what to do with my next line of treatment. I have read some of the posts and I am glad that I can still see some names I have met here initially, may God bless you and keep you all safe. I apologize in advance for my sad and negative post.
I am having some tough moments this year, namely having to deal with progression from bone metastasis to increased bone metastasis and liver ones. In June I had to start Fulvestrant and Abemaciclib, which did not work at all, started Capecitabine in October the beginning and ended up in A and E with Coronary spasm. Now, as the oncologist says I have run out of chormonal treatments and milder treatments she is offering me 2 types of chemo to choose from Docetaxel or Paclitaxel. The first one she says will be given every 3 weeks and second every week. She has explained that the second one has less severe SE, and that is why it is prescribed to patients who are not so fit as I am. I am very very sacred I do not want to end up in hospital again I feel so well when I am not on any medication I do not have any pain and I do not want to pull the devils tail and start suffering because of treatment not because of the illness. I know that my tumor markers are rising and my liver function is worsening according to the latest blood tests but I simply want to have a good balance between SE and treating the illness. I am so scared. Please anyone who have been through either of these chemos share what sides effect you had, did it work for you when did they notice any results…I know that we are all different but I need to hear some stories in order to make up my mind. I just want some quality life, even if it is shorter than the SE one.
I know it is my decision I have read all the leaflets I have received about the side effects of both drugs but I need to hear real time stories probably, do not know. I am also concerned about losing my hair again and especially when I have read that with one of the drugs I can loose some if it for ever. Are there many such cases?I know this is not the most important thing but for me it matters a lot. I want to scream it is so so hard. I have not given up may be because I am so asymptomatic. I just want to delay the symptoms as much as I can! I want quality life. I do not want to stay in bed and wait for pains and aches and …death…Sorry for the negative post. I feel so alone…
Please if anyone has been recently on one of these treatments could you share your experiences? I am also a bit confused as the oncologist said that I might have both them in the future anyway so it seems that it is just a matter of choosing which one to start with. I thought that they are from the same family and they are excluding each other. Please tell me your opinions about that too. Thank you
Thank you allXXXX
Morning i’ve tried searching for info on fractures but unfortunately not only is bone mets new to me but so is forums 
Recent meeting with oncologist asked about doing yoga she said hmmm its in your ribs maybe a chance of cracking them when twisting. My brain almost went what the…and i didn’t have the heart to tell her the week before i’d been helping the other half lift flags off the driveway. I came away feeling like a glass doll as she’s putting me on denosumab and mentioned my jaw might fracture. My concern is how fragile am i and maybe silly question but how would i know if i’ve fractured something.
Brief history - I had mastectomy 12yrs ago started chest pains 5yrs ago but only found out i had secondary breast cancer end last yr (although now i know its been here at least 5yrs). Two ribs and sternum, maybe paranoia but feel same aches in other bones. Stared Letrozole, zoladex & calcium/vitD will be starting ribociclib in next week and denosumab in Feb.
Hi finty, I’m new to this forum so have only just seen your post. I was dx with bone mets last January, so a year in now. I haven’t asked for a prognosis as I’m too scared. I’d like to chat to others about this and gain knowledge and find out which meds they’re on etc., and how they cope. I realise yours is an old post, I’m still trying work out how all this works and also how to communicate with other people. I’ll be very grateful if you can help me. Many thanks.
Hello,
Thank you so much for sharing your message is a great source of confort. I was diagnose with spine mets July 2022. How can I join tis group?
Best Wishes
Hi I had radiotherapy on my shoulder after suffering a year nearly of intense shoulder and arm pain. After my few sessions my pain had completely gone. It’s only now after about 8 months that I have a bit of pain if I’ve been driving. X
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