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 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.
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.
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…
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
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
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
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
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
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
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
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: nourishbyjaneclarke.com/
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
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
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
Hello bousy
Sorry to hear about you scan results but you now have another treatment plan and the good news is that there is a very good thread with all the spongebobs .it’s on treatments and called “chemo buddy …” there is loads of support there but being a spongebob doesn’t mean you can leave us here on the bone Mets either !!
Hugs xxx
so the first injection to strengthen the bones is called zometa (i guess its under clinical trial??) she goes to dana farber in boston for her care.
her ct scan has been pushed to tomorrow bc she is allergic to the dye and needs to be premedicated in advance.
i dont know why this time it just feels so scary seems like we were stronger last time…
im so worried the treatments will take such a harsh toll on her although shes a strong momma, but this time i have a 2 yrold daughter who shes been waiting to live near anxiously bc ive been overseas for 3 yrs and im just worried she wont be able to hold her, play with her, or run after her like shes been anxiously waiting for…