New to this group.

So sorry to here you are on this journey. I cant really offer any practical advise although I know what its like to live with secondary breast cancer and look after a child. It sounds like from what you said that you may only be on these drugs for a year so I know its hard not to think ahead but try and take it a step at a time. I know this is easier said than done. 

I know that having secondaries means treatment for as long as its working so if you flip it on its head it means its still treatable and that can only be a positive. This said its still not easy. I know having a young child and wanting to be there and fully functioning for them is probably your priority as I know its mine. Try take everyday as it comes and dont beat yourself up for feeling anxious guilty etc. 

Sorry I cant answer you question directly as im on different treatment to you but hope you realise that you are not alone in your situation

Dianne

Hi,

Im 38 and have a 2 year old. I was diagnosed march 2017 and did a similar course but i did 18 rounds as mine had extensive spread. I managed 18 mths on herceptin and to be honest i coped well on it.

I would say that i personally would happliy carry on with whatever works for me as every day is a blessing to spend with my family.

Good luck 

I’m 39 and have a 6 and 3 year old, my secondary is brain mets which are currently being controlled through surgery and srs. I have been on herceptin since July 2016 and will be on it as long as it is working I just wish it crossed the blood brain barrier! I can hand on heart say I have not noticed any side effects. 

Good luck

katherine

hi i too diognosed sept last year im on letrozol an denosumb 

Hi everyone

I was diagnosed in May 2014 went straight to my spine in 6 places although my T10 was collapsing so had to have 8 rods stabilising my spine & I've only had radiotherapy only.  I'm on Letrozole & Denosumab monthly but I've had to stop Denosumab as awaiting a knee replacement.  I'm 49 (44 at diagnosis)

All I can say is, live each day as it's your last, don't worry about the silly stuff but concentrate on your families and spend as much time as you can with them.

Don't get me wrong, I have my sad days, but I only talk about my Cancer with my Hospiscare nurse & my partner of 10 years.  He asked me to marry him in Venice before Xmas and we are getting married in September this year.  Always have things to look forward to whether that be a walk in the park, coffee with friends or spending the day doing what you want to do.

My children are now 21 & 18 but it's been really tough of them both especially during their studies at college but they know I can't do things like I used to & accept that I've slowed down a bit.

I've got my 50th & wedding to look forward to with coffee catchups in between

Remember, you're not alone if any of us can help we will.  Be kind to yourself.

Jacqui xx

Thank you for replying.

Are you still continuing with herceptin? 

I have been told I will have to continue on herceptin as long as it is working for me.

Hi Hopesarehigh,

I just joined the group today after seeing your message. I've not met or talked to anyone of a similar age to me who has a similar thing to me!

I'm 44 and was diagnosed in January 2018 with secondary breast cancer at my initial diagnosis. It had spread to several parts of my spine and pelvis. I did 6 rounds of Docetaxel alongside pertuzamab and Herceptin. I still have pertuzamab and Herceptin every 3 weeks and I have a denousamab injection every 6 weeks. I have a zolodex injection every 12 weeks and take letrazole daily. It seems a lot when I write it all down, but I can't say I get any side effects other than going to the toilet more and it being looser! Yuck sorry, but that is all I get really...

It is a bind having ongoing treatment, but I am grateful that I am here and that I am what my consultant called under excellent control. I am on it for as long as it keeps it under control, and so far so good! Good luck.

Jo x

Hi just wondering about any side effects? I'm on same combo but a lot of back pain. I have mets in spine and pelvis but this feels muscular.how are u doing? 

Love and peace x

Hi, i'm doing well thank you. The pain reduced dramatically after my first dose of chemo. I had been in a lot of pain before this, taking paracetamol and Naproxen. I do get back pain sometimes, particularly in my pelvis, but this is usually worse when I've overdone it. 

Is the back pain new? Could you have been overdoing it? How long have you been on the meds?

Jo x

Hi Jo

thanks for replying so quickly! Really pleased to hear you are doing well.

ive been on letrazole since last July shortly after diagnosis but the denosumab is recent ( only had two injections so far) 

the pain feels muscular. I started with joint pain soon after starting the letrazole and it varied from pelvic to wrists to shoulders etc all a bit weird but I was assured it was side effects which would settle down ( they haven't)

i think you might be right and I have just been overdoing things. Will watch and see. All a bit wearying.

i have secondaries throughout spine,pelvis,femurs but am told its "small volume" so not had chemo but did have rads following mastectomy.

just wish I could stop feeling so down but I guess it comes with the territory.

have you been given any prognosis? Please don't answer that if you don't want to.

sending you a big hug

xx