Thanks Glo and Lynnq, That's good news from both of you. Guess I just need to be a more patient patient! I'm finding Letrozole quite easy too - I think that's part of the reason that I question whether it's working. I've got a scan in July, so will more then. I am so pleased that I found this board, as it's the most friendly and hopeful one I've seen... (on another site there was loads of talk about being 'terminal' and that's not what us with Stage 4 really need to read). Ta again x
Hello Glo, I was dx several months ago with a big tumour and nodular involvement and was offered neoadjuvant chemo until a few weeks later, when liver lesions were discovered. Chemo and surgery went out the window and I'm just on Letrozole now with Adcal and weekly Alendronic Acid tablets. Still have a huge tumour (10cm approx with slightly inverted nipple), which is a bit disconcerting... I noticed that you were on Letrozole for 4 yrs and just wondered if you or anyone else with experience of Letrozole could offer some idea of how long on average, it takes to see a response? I am ER positive (6/8). Any comments and Letrozole tales gratefully received! x
Oh Glo, so sorry to read your post! Sorry, too, that Cap is not working for you. I can't offer any help or advice here, but you have all these other lovely ladies helping you. Just make sure you get the "angry eyes" out if you need them! And you have a lovely wedding to look forward to. Hugs, Barton.x
Sorry to hear your current 'story' and can empathise completely.
I was hormone positive HER2 negative for about 10 years then a liver biopsy showed I was now HER2 positive - as well as still hormone positive. This was back in 2013 when my liver mets showed up after 5 years of 'only' bone mets. Anastrozole had kept the bone mets stable for that time after an initial course of FEC chemo. Since then my BC does still seem to be a low grade which may be why I've responded to the different treatments I've had so far.
It was reading on here, from postings by our dearly missed Lemongrove (not to be confused with LemonDrizzle who is very much still with us) that I learnt that HER2 status can change in up to 30% of cases and that is why I insisted on a liver biopsy.
I think your team are definitely pro active and doing the right things. I was a bit worried when you mentioned starting Taxol (before your HER2 status could be checked) as you can't have the Taxotere (docetaxel), Herceptin and Perjeta regime if you've already had chemo for secondaries. However if you are now found to be HER2 + you can still get funding for it through the CDF based on precedents (sp?) already in place even if you've already started a chemo regime for the new mets because previous drugs/chemo weren't specifically for HER2.
I hope that Taxol does get things back under control however and if they are able to get a result for HER2 status from the pleural fluid or tissue let's hope that, if your status has changed, that you can move onto the best treatment for your type of BC. Do PM me at any time if you want more info, or if what I have written doesn't make sense!
Thank you (and Belinda) for saying I'm knowledgeable. To be honest if it wasnt for this forum and all the lovely ladies sharing their information I would be none the wiser - shame my current oncologist doesn't read it - it may help him as well! However it would be so nice not to have 'Treatments and their associated side effects including cardio myopathy together with receptor staus changes for secondary BC patients' as my specialist subject should I ever appear on Mastermind
I have secondary bc and its all too complicated to type up if you know what I mean! What im seeing here is a medical team that arent giving up! twenty years ago we would be history. It can get very worrying when we see our options fading but we darent loose hope as we just dont know whats around the corner. This posh wedding sounds very nice and one that will be like medicine to you im sure. This might sound like a silly question Glo but do you follow your tumour markers at every blood test? Mine are rising and its sent me in a spin but not too sure how much envisis i should put on it?
Do you have a family Glo?
I will keep you in my prayers