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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
Hello weemee
Welcome to the forum and this thread where there is lots of knowledge and kindness.
Wow ā¦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.
Itās a very lonely place to be at the moment but as time goes on ā¦it becomes easier to deal with. Hopefully your friends and family will rally around but sometimes they donāt really know what to say or do ā¦we are real here and understand your bad days and anger at it all.
Hugs xxx
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.
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 Iāll be around for a while.Ā
Good luck to everyone waiting for results and treatment plans and big hugs.Ā
FF belated thank you for your lovely reply last week. Just been busy and tired. Xx
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
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
Hi weeme
Iām on faslodex and denosumab, and have been since sept 16. All well and 3 stable scans. Side effects with me are hot flushes!! Manageable, Ā 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 ānormal.ā So I find it ok. I do get a bit depressed but I think thatās the condition not the treatment!Ā
Hope you find treatment ok too,Ā
Bel x
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
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. Itās good to hear that faslodex is helping you. My oncologist doesnāt use markers!! Just scans. My next one is due in2 weeks This is just such an uncertain time and a bit scary so itās good to voice all this. Donāt want to worry the family.
Thanks again
Denise
Thanks so much. Just things i dont like talking about with my partner as dont want to upset him x
Thanks so much. Just things i dont like talking about with my partner as dont want to upset him x
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 unknownā¦
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
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
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 Iām going to have to refuse it next time. Help please.
thanks
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 donāt think it is due to denosumab, most people donāt 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
Hello ramade
As Iāve been mentioned ā¦yes Iāve been on denosumab now for 18 months and I have sometimes jotted down side effects ā¦after I had 6 ā¦I had terrible bone pain for 5 days ā¦after I had 12 ā¦terrible aching teeth and ears !! So I was rested from it for 12 weeks ā¦I have it six weekly ( my choice) now and seem to tolerate it better ā¦aches and pains could be the other hormone treatment you are having ā¦like the other ladies here ā¦good and bad days really.
Denosumab does have a lot of possible side effects listed ā¦but its only odd balls like me that seem to get any !! ( Iām the only one that can be sick on a basic cough medicine )
Hugs everyone xxx
Hello ramade
Well at least you have had a recent scan so it will put your mind at rest ā¦
Iām due for denosumab tomorrow and hoping it will help with my aches ā¦itās a roller coaster of worry and discomfort which comes and goes in this mad journey we are all going through.
Hugs xx
Thanks Renee
Hope you are ok ā¦and you and mia enjoying the cooler weather too ā¦much nicer !!
Xx
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