Lung Biopsy unsure what to do.

Hi Lucifer, sounds like you are having a rubbish time! I am on pablociclib and Letrozole, having just finished cycle five. Seems stable so far with some shrinkage. I have had denosumab now since last May and my bone lesions seem to be healing a bit. No noticeable side effects other than loose bowels first time! Paclitaxel didn’t work for me but as you know we all react differently. Hope you find something that helps and is manageable. Mary 

Hi Lucifer

Sorry no advise but just wanted to say it is so hard to keep going and to find the strength but we all do somehow despite what the cancer throws at us. 

Why are you not keen on having the lung biopsies done?

Hi Lucifer,

It is hard, but hang in there. It's hard to find the right treatment as cancer cells adjust or find ways to counter it. I would think they would re-stage/analyze  your cancer if it's a secondary. My Er and HER2 status have changed since the primary.  I was on Palbociclib + Letrozole for 7 months, but it didn't work, so switched to Capecitabine now, but find it rough. I've been on Denosumab for years and don't have side effects.  Take good care and good luck.

• Hi Meiard, that’s great to hear. Thank you for getting in touch. Can I ask did they put you on a different chemo? Also we’re you genetically tested ?

Hi Veronique M, 

Thank you for getting in touch. Yes you’d think they’d have restaged & genetically tested my cancer since my primary in 2009, but no they didn’t! It’s taken me to bring it to their attention & ask for it to be done as it only came about when I was diagnosed with secondary cancer. Again since I was so young both at primary & secondary diagnosis you’d think they’d pull out all the stops. ( 29 primary 36 secondary ) 

I hated Capecitabine, lost loads of weight on it & felt like crap, horrible taste in my mouth & certain smells good would make me nauseous.

Thank you so much for letting me know about Denosumab & your experience. 

Good luck to you too & all the best. 

Hi fhgirl,

Thank you for your support. It is bloody hard. I was diagnosed with primary aged 29 in 2009 & it’s been a long hard slog since then, watching relatives & friends die from this horrendous disease. 

I do try keep positive but it’s getting harder. 

Don’t  fancy lung Biopsy as I don’t think it’s needed or cancer in my lungs & more chance of infection. 
I have had nodules in my lungs for years, it’s just that they’ve now found new ones. What’s to say they’re not just harmless nodules & disrupting them could cause more havoc??

Anyway you’re right it is hard to keep going, but somehow we scrape ourselves up & crack on don’t we, don’t really have a choice..

You take care of yourself & stay safe. Thank you for contacting me. 

I went from paclitaxel into pablociclib. Originally I was due to have palbo/letrozole but the onc was concerned about my liver enzymes. The paclitaxel stabilised the liver but didn’t reduce the tumours. I was disappointed as it seems to help lots of ladies!

I haven’t been genetically tested, but I might do it privately when I start to run out of options. There are some new drugs coming along which focus on mutations eg piqray. Not approved by NICE get though.