Morning Silver
Just a short reply to question about the injection we have for bone mets.
I have been on it since 2014. Monthly till last October then my treatment was changed to cape so it went to 6 weekly. I have been told it will be stopped.
Hope that helps.
Linda
Evening Silver
I have been on this forum so long you automatically think people know about all the different treatments.
I see someone has sent you the link.
Thanks bonn.
Linda
Hi silver
My understanding of hormone status is that a score is given between 0-8 which indicates how strongly receptive to hormone the tumour is. My er score is 4 but my oncologist said that even lower levels can be responsive to hormone treatment. You should never have queries brushed off ask your doctor for explanation if you want to know or your breast nurse if your more comfortable with them.
I also do my own denosumab injections through choice as it gives me more freedom - I usually telephone the chemo unit to get my bloods results
Gardens getting a thorough soaking today which means the grass will need cutting again - enjoyed the draught and lack of growth!!! X
It can be daunting at first especially if you donāt like needles but you will soon think nothing of it and be part of your routine! Do it with the nurse until your comfortable doing it yourself
Sarah x
I was eventually diagnosed with secondaries may 2017 after a lot of back and forth since the jaunary. Secondaries in the liver bones and pleural lining (lung). I have a permanent chest drain that I drain fluid from my lung weekly. Currently on letrozole but awaiting change in treatment as some progression . Had carboplatin last may till August 2017 so done really well having year off chemo I thought. What treatments are you currently on silver?
Sarah x
Yes I agree with you absolutely hate being called brave - fIremen are brave as they choose to put themselves in danger to help others . I didnāt as along with thousands of others didnāt choose this but I am bloody determined to make the most of the time I have left whilst I feel well!. Donāt get me wrong get my down days as Iām sure you do too just indulge myself those then move on.
It must have been such an awful blow being diagnosed with secondaries straight off - I had 6.5 years after primary then started to feel unwell so knew in my gut it was back. Fantastic letrozole is working well for you and hope long may it continue?. X
Aw instead of brave - mmm resilient???!! X
Yes, thatās my pet hate commentā¦āoh I could get run over by a bus tomorrow!ā Seriously? Is that supposed to make me feel better? Iād take my chances with a bus over cancer any dayā¦ Only bettered by the classic " you must beeee positive, your attitude will help you win the fight!" Yawn, I canāt even be bothered to explain secondary breast cancerā¦
ā¦donāt know why Iām feeling fed up, side effects have really kicked in with a vengeance, sorry! Hope everyone is enjoying the cooler weather xx
Thank you, Silver, Iām just feeling down because my SEs are hammering me, Iāve been very lucky to be on a successful drug trial for 2.5 years but in the last 2 cycles my body has had enough and seems not to want to continue.
One drug is Ibrance but the other is an experimental one, Taselisib which I read has not shown much of a result on another trial, but too many SEs and I think Roche may be discontinuing it?
Anyway, mustnāt grumbleā¦would just love to feel well again, like all of us xx
Hi all
Not posted in ages ( hi M xx)
Iāve bern having pain in my hip when resting now for over 6 weeks ā¦
I had bc her + diagnosis in dec 16
Also in lypmhs
Had some Fec which nearly killed me
Then 12 pac
Then 3 wks rads
And 18 herceptin through that all .
When on tamox ( vile for me )
Then had ovaries out as a precaution!
Then on anastrozole but I sweated soooooo much it was unbearableā¦ so Iāve been put exemestane which is less sweaty ā¦ but just read nicky08 stuff about it and nhs not letting other drugs be used if youāve had it before ā¦ what shall I do ? Go back to anastrozole as I may need Exemestane in future?
Iām freaking out about bone scan ā¦ sorry I prob should not be on this thread ā¦ but then Iāve never been one to follow rules on here , for me itās aboyt respecting each other and being about to say what we need too when we need to ā¦ we get enough judgements from those non- cancer muggles xxx
Ps I had 8 lymphās removed and 2Xwle to get Marcinās . Showed it was in 3 lymphās but chemo killed it all ā¦
Also I canāt spell ā¦
Also fuming that if weāve had chemo they wonāt give us stuff !!! Tell that to my 6 year old who wants her mummy ā¦ x
Iām so scared of another cancer diagnosis and that il totally melt down ! ā¦
M
I was only on pac no carbo unless thatās what pac is ?
Still rubbish at the whole cancer languageā¦
I was ok on pac it was Fec that nearly killed me .
I actually felt ok on PAC it was weekly though and if I remember correctly you are 3 weekly hun .
Sorry you having SEs they suck.
I popped on and saw your name and had to write , Not great at writing on my phone though so il pm you when on laptop xx
To add; I was achy, and very weak, chemo just destroys doesnāt it and itās just the hope that is does what itās meant to do whilst the rest of our mind and bodies tries to withhold the tortures !
Massive hug to you M darling lady xx
And massive big up to all you ladies on here fighting this most cruel lottery draw xx
Hi I hope you lovely ladies donāt mind me asking a question. Iāve had this pain in the back of my leg for a couple of months. It starts under my bum cheek and goes down to about knee level. It hurts when resting and tingles a bit. I will make an appointment with my GP but was wodering if anyone else had this. I was diagnosed in 2007 . Thankās Xx
I had reflexology on Monday, she said the areas I found painful were connected to my lungs, right breast and lymph nodes (had left mx 4 years ago)ā¦ should I be worried???
Hi the last i was on i was waiting on a pet scan, ive now had the scan and the results, the good news is the cancer hasnt spread to anywhere else in my body, but im confused as i have 1 bone met in my spine that showed on the bone and mri scan, which led to my doctor telling me i have 2 to 3 years to live, but the bone met didnt show on the pet scan, so now im waiting to get a biopsy on my spine, would like to know if this has happened to anyone else? I thought the pet scan would show any cancer but seems not? Would love to know if anyone has had this experience, thank you x
Hi Zana I am no expert and this has not happened to me but my understanding is that PET scans show more than bone scans and MRIs. They are more sensitive. My bone scan showed one small area on the spine but the PET scan showed two more tiny ones which did not show on the bone scan. Iām also very surprised that the doctor said two to three years with one bone met. Seems quite specific and rather pessimistic? There are a lot of treatment options. Do you have a breast cancer nurse? You could phone him/her. When is your next appointment- you need clarification. Sound like good news to me. Best wishes Anne
Hi thankās for the replies and advice 
. Had my appointment this evening, GP was quite thorough and had me doing all kinds of leg movements lol. She said she think itās to do with the hip . I mentioned the breast cancer and she agreed to send me for xray and take it from there. She has put my breast cancer history on the form. Hopefully it wonāt be anything sinister, but if it is, it is, and Iāll deal with it. Xx
Hello Zana Itās such a hard time. We all understand that. At least they are taking care to look closely. Itās horrible waiting for results but better that you know. Fingers crossed itās all clear Anne x
I have been on exemestane for nearly 3 years. Had primary in 2009. Bone scan on Thursday. Last one was 16 months ago. Have been feeling a bit unwell this month. Fingers crossed. x