New to this group.

Hi Boogirl,

I've been on Denousamab for about a year and Letrazole for about 8 months I think. As I had Denousamab alongside the Docetaxel, Herceptin and Pertuzamab it's hard to say which side effect were from which drugs!

I get aches and pains mainly in my pelvis. I have lesions on my spine in several places and my left pelvis. I haven't had any surgery. This will only happen if the cancer is held under control everywhere other than in my breast. 

Feeling down is not surprising!. Most of the time I try to stay positive, I have a 7 year old, but sometimes it really gets me down. I worry about not seeing her growing up, but I think that keeping positive whenever you can helps. I see a counsellor via a local cancer charity. I find it really helps to talk to someone about this who is not emotionally tied to me. Do you have something like this available to you?

When I was first diagnosed, I asked how long? My consultant said around 5 years. I was heartbroken. I was initially diagnosed with breast cancer, and then after scans was told it had spread to my spine and pelvis. I hadn't got my head around breast cancer!  I'd not looked up anything about secondary cancer in the bones and had thought I'd have an awful year with treatment and surgery etc and then I'd be ok.I spoke about it with my consultant again, around 6 months after the chemo finished, and he said on average 5 years, but this included people that didn't make it after first chemo and those still going... He said that as I'd responded really well to the treatment this was a very good sign.

Have you been given a prognosis? I remember a while ago reading a post on here and there were a few people that had secondary bone cancer and was still going strong many years later. This gave me hope!

I try to remain positive and hope that the drug combo I'm on will keep it at bay for as long as possible, also that drugs etc are changing all the time and improve all the time...

Keep strong and take care

Sending hugs to you too 

Jo xx

Hi Jo thank you so much for getting back to me. It sounds like you have got a real handle on all of this and I am taking encouragement from it. 

I do attend a support group but it is very small and I am the only one with breast cancer which makes me feel rather isolated although I do love my fellow travelers! A more random group of people it would be hard to imagine!

I have asked about prognosis but it is the impossible question. I get told that a "good few years" is possible and I am not yet on anything other than the combo.i try to be positive but is hard to get through the day without tears. I think I need to look into further support. I haven't yet tried the local cancer support centre or the hospice. I'm a little reluctant to try the hospice as I think it might feel a little depressing and I can do depression without help!

i would love to know how you are progressing and hope you are enjoying the Easter break with your gorgeous girl!

please stay in touch 

big hug and much love to you and yours

xx

Hi Boogirl,

I've not been on here for a while,  I wanted to see how you are doing? Sorry I meant to respond earlier! I didn't get notification about your reply or I would have responded toy you sooner.

I had a lovely Easter, we even went away for 10 days which was lovely! 

How are you getting on with the Denosumab? Did you mange to find any support groups? I know what you mean about hospices - but are there any local cancer charities near you?

I had an mri today so have scanxiety! Not seeing my consultant for two weeks, it always feels like a long time to wait...

I'm not feeling too good at the mo. Some days its so hard to stay positive! I feel like I'm putting on a front that all is ok, but its not really is it?

Although i'm doing well physically, I have terrible mood swings for no reason and fly off the handle at my husband and I'm short tempered with my lovely daughter.  My husband said tonight that I'd changed in the last few months, although he couldn't say what exactly. I know I have changed, but can't help how I am , I'm thinking its the menopause - I've been on the zolodex and letrazole for almost a year, but not sure.. I really don't know what to do about it! It's not like I can go on HRT! The hot flushes are aslo getting more frequent! 

Sorry for the rant! I hope you are well.

Please let me know how you are.

Take care

Jo x

Hi  

I was wondering if you knew about about Breast Cancer Care and their monthly social meet ups for women living with Secondary Breast Cancer? I have attended my local group, and it’s really helpful, and not depressing at all. 

Here’s a link where you can find out details for your locality. 

https://www.breastcancercare.org.uk/information-support/support-you/secondary-metastatic-breast-cancer/living-secondary-breast-cancer-meet-groups

Judith xxx 

Hi Judith 

thank you for this. Will definitely pursue further. I attend occasional group sessions organised by the hospital but I am the only one with breast cancer so it would be good to have contact with others 

best wishes xx

Hi Jo! Good to hear from you! Apologies from me as I haven’t been on in a while. Just back from a bucket list holiday which was great as I left cancer behind and nobody knew anything about me. Sadly back to reality and bloods and denosumab week. Early start tomorrow... I do understand how you are feeling and scanxiety  is something we all identify with . Just breathe. What will be will be and and I feel sure all will be well. Good days bad days. I can distract myself during the day but nights are hard. The letrazole keeps me awake and I lie there planning for how my family will cope after I’ve gone. 

The current reality is I’m feeling fine. No really. Fatigue is an issue and I have to build naps in. But otherwise I keep chugging along until I run out of chug. 

Please let me know how you get on. 

Keep your face to the sun

big hugs xxxx

Hi Judith,

Thank  you for this I have just requested to join my local group which meets in a couple of weeks!

Jo x