Secondary BC

Hi LoulouI

I'm sorry to hear about your recent diagnoses. I was diagnosed in March this year, mets in spine, ribs, liver and lungs.

I am not on palbocolib but I am on ribociclib which I believe is a similar drug. I am also on letrozole, zoladex and Denosaumaub.

My first scan in May showed the tumours were shrinking in my liver.  Mine is ER+. I tolerate the drugs really well, as for side effects I have mild flushes but I can live with that.

I've spoken to quite a few people on forums who are on these drugs and most have been on them for 2-3 years and have seen shrinkage and also remained stable.  I have also read numerous positive articles about the effectiveness of these drugs, it's coming up 5 years since the trials started for these drugs so there is now more data available. It gives me great hope.

Good luck with your treatment.  I have also joined a forum on breast cancer.org - there are quite a lot of ladies on palbocolib on there so it might be worth a look. 

X

Thank you Daisy1257 for your reply. I am sorry to hear about your March diagnoses. May I ask how old you are it is just I noticed you mentioned zoladex and I think this is pre-menopause? 

Very happy to hear you tolerate the drugs well, 2-3 years is also hopeful and within that time other trials are on-going I'd hope.

Thanks for the cancer.org forum details I will look to join.

Hope to stay in touch.

Lou x

Hi Loulou

I am 37 and was diagnosed completely out of the blue. It started with lower back pain, muscle pull I thought. I was patiently waiting for it to heal but after 6 weeks I could barely get up or walk. At that point I went to A&E and it all spiralled from there. It turns out I had 4 fractures on the spine which is why the back pain got so bad.

I left hospital end of March on a zimmer frame but I am walking with no aides now. My back is still a little tight but due to have physio to see if that helps.

Overall I feel so much better now I have started treatment, if I didn't have the back tightness I probably would not know I was ill.

I'm sure you will start to feel better once treatment starts. I do have sad days, especially as I have two young girls 5 and 7 but on the whole I mostly have good days.

I'm determined to live with cancer and not be dictated to by it.

We are so lucky treatments have advanced so much. 

Stay in touch and let me know how you get on.

X

If you look in the chat section there is a thread called positive breast cancer stories. This thread gave me a massive boost.

X

Hi. Sorry to hear about your diagnosis. I was diagnosed with Secondary Breast Cancer in my spine and pelvis 1/12/2019. I had been clear of cancer 10 years (2005,2009 original BC) I started palbociclib in Feb 2020 and letrozole and denosumab injections about June 2020 what with covid restrictions etc. All is going well at the min I have had several scans and there is no further spread and they are managing to contain it . Lesions are healing slightly my oncologist is happy with how the treatment is going . 

Always happy to talk if you need it . Good luck with your journey x

Linda 

Hi

sorry to hear your diagnosis. 
I was diagnosed in April with mets in my bones, liver and possibly my lungs ( they didn’t seem too worried about my lungs) It came 6 years after my original diagnosis 

I am on palbociclib, letrozole and denosumab and have been managing pretty well with them although I have other issues with high calcium and low potassium going on. 
im hoping that once my bloods are sorted I’ll feel a bit better. 

I would second daisy 1257 about the thread of positive breast cancer stories 

take care

Thank you for your reply. I am sorry to hear about yours too. May I ask if they have offered you Fulvestrant injection, I was told this is a hormone injection and a main player?Glad to hear all going well and scans show no further spread :-)

Many thanks for taking the time to reply. SOrry to hear about your secondaries. Most patients with mets all seem to be on Palbociclib Letrozle and Denosumab however I have not been offered letrozole or tamoxfin. Could I aslo ask if you have had hair loss on Palbociclib although I have been told by Oncologist this is not a chemo tablet but a targeted treatment? x

Hi

yes I have had hair thinking with the palbociclib. My hair was quite long and tuggy as it needed a trip to the hair dressers (lockdown hair) I found it was getting quite patchy at the back so have had it cut shorter like shoulder length and it has hidden the thinned patches really well. I would also point out that hair thinning is common in my family and when I had chemo the first time round half my hair fell out in the first week. 
I definitely feel that it’s worth the hair thinning if it means not having chemo. 

Hi Loulou, approx 7 weeks ago I was diagnosed with metastatic spread to my femur from my breast. I went to the doctors with a hobbly leg and both she and I thought it was bursitis. On my insistence she sent me for an xray and a week later while I was playing table tennis rang to tell me I needed an MRI to confirm the spread. Anyway, long story cut short I started my treatment yesterday afternoon starting with the fulvestrant injections. I was terrified of these and had spent every day since Thursday last week when icwas given tge date to start treatment crying for long periods as I have I think a bit of a phobia about jabs-not great in my situation lol. Anyway the lovely nurse got the injections out of the fridge for me to hold and warm up. I clenched them like I had given birth to them. They were probably near boiling point when she retrieved them back ha. I stood and assumed the position and both injections were given at once, one in each cheek. It was a breeze! They did not hurt one bit! I am mad with myself for getting in such a tizz about them when there was no need!!! I would say just go with the flow. When I found out about my spread the consultant was lovely. "How long have I got" I asked wailing. He told me they treat women like me for decades!! That will do for me! I also have decided to consider it a medicine like any other that people have to take to stay alive ie insulin. The treatments they have now are amazing! Just stay positive which I know is sometimes really hard. When my head was spiralling out of control the cons said the main thing that was doing me harm was my emotional state! I think he was right!