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Bad news from onc!!

14 REPLIES 14
Cress
Member

Re: Bad news from onc!!

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

Lynnq
Member

Re: Bad news from onc!!

Hi Cress
I was disgnosed Oct 2012 and sbout 6 weeks later it was discovered that I had secondaries in bones....isnd d ull also in the skin under my breast -Only one lesion though - also 'shadows' in my peritoneal area which the onc said were cancer.

I was put on letrozole and adcal daily and a zometa infusion every 4 weeks.

I have been stable since. My bone mets have either reduced or stayed stable......the shadows in the peritoneal area are no longer showing, and I have one spot on my Mx scar which has not changed in 30 months......onc photographed it but it has not changed.

So Letrozole has worked for me. My main problem is anxiety and sleeplessness. Achey joints which are controlled by paracetamol and naproxen.
Hope this helps to reassure you sbout letrozole.
Glo
Member

Re: Bad news from onc!!

Hi Cress, response from Letrozole was quite slow, but every scan showed reduction. It took approx 2.5 years to get NED which lasted a while before progression. Must say i found Letrozole a doddle! A few aches and pains but nothing else!

Cress
Member

Re: Bad news from onc!!

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   

Glo
Member

Re: Bad news from onc!!

Thanks Sam, start weekly taxol this week!
Testing for HER2 is proving difficult, on last scan in March the liver mets were not in a suitable position, can't do the lung mets and they are not going to do the pleura procedure at the mo as the thoracic surgeon wants to see if the chemo will solve that! Having a scan this week so depending on that there may be something they can biopsy! Also a recent X-ray picked up something on one of m y vertebrae, so having a bone scan! Keeping fingers crossed about that as I have had a lower back problem for many many years so could be ok! Don't need bone mets as well as lung n liver!!! Have read good things about h/p combo and it gives something else in between various chemos that will no doubt be in the future! It's all a big shock after 4 easy years on letrozole!
Glo xx

Sarn123
Member

Re: Bad news from onc!!

Hi glo sorry to hear your news, I too got told of progression in liver yesterday I'm on e/e and was doing do well on it 50% decrease in January after about 11 weeks so was really pleased! Then got ill in February with infection and shingles so had to stop all treatment until 4 weeks ago had a scan after only 19 days of e/e and the 50% reduction had increased back to the original size, I've asked to give it a bit longer and re scan in 4 weeks as I'm sure if it worked once it will work again! We ll see!!!! About what your saying with the hep neg changing it can happen as it happened to my friend and it was only coz she pestered them to test again it was found, so make sure you get that test, I too am neg and I'm going to ask for test too coz I hear such wonderful things about herceptin. Try and stay positive there is a lot of new treatments coming through all the time, look forward to your trip you will be there get yourself a new👒👒👒 and hopefully you will be feeling better by then xxx
LemonDrizzle
Member

Re: Bad news from onc!!

Yes, I'm definitely alive and kicking as you will be Glo when all the information is gathered and a treatment plan put into action from your team. Hoping you sleep better tonight
LD x
Glo
Member

Re: Bad news from onc!!

Thanks Barton, everyone is so good on here, I read the frivolity on the bones mets thread, hilarious! I'm never sure where to post as I have liver and lung mets but not bone!!
Things moved today, scan booked, pre ass for weekly taxol next Wednesday, first treatment Thursday! They are going to leave the pleura treatment to see if the chemo solves it, so no biopsy for status change (HER2) yet but scan nay show something else that can be biopsied. Also got a few days sleeping tablets which will help! Just hope the taxol knacks the blighters!!
Thanks for all your thoughts and support.
Glo xx

Barton
Member

Re: Bad news from onc!!

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

Glo
Member

Re: Bad news from onc!!

Thanks Nicky, have sent you a PM
Cheers Glo xxx

nicky08
Community Champion

Re: Bad news from onc!!

Hi Glo

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 Smiley Frustrated

Nicky x

Glo
Member

Re: Bad news from onc!!

Thanks for your replies. My onc and nurses so far have been fab.
Emma, my tumours markers are tested and when diagnosed were 12!! With progression they rose to 35,and are now at 50! Very low I know but for me they have risen and can to some extent be used. I do have a fab husband who is so good, both retired, I am 61, and a son of 25 who knows most if not quite all of the situation. Also other supportive family plus very good friends.
I just want to get on with life, whatever is left, still take all the holidays, and especially love skiing and managed 3 ski holidays this past winter! Hopefully can still fit all that around treatment!
My onc tells me there are still plenty of options especially as I have never had chemo before. With the possibility of still adding in some hormonals in between as maintenance! Providing I'm still ER+!
Belinda, I have seen several of Nickys post and yes she is very knowledgeable!
Thanks for your replies and thoughts! Not sleeping well tonight!!!
Glo xxx

belinda
Member

Re: Bad news from onc!!

Hi Glo, our cancer does change over time, becomes resistant to treatments without changing her2 status but it can change. I'm sure Nicky08 won't mind my mentioning her status changed to her2+ She is very knowledgable and hoping she will see your posting. Sounds as though your team are on the ball, keep your wedding date in your mind. X
EB0
Member

Re: Bad news from onc!!

Hello Glo

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

 

Emma x

Glo
Member

Bad news from onc!!

Just need some support!
Brief history, diagnosed stage 4 from start Sept 2010, multiple lung mets. 4 years of letrozole, with approx 1 year NED! Brilliant, a breeze! Them wham! Sept 2014 progression, back in lungs and also in liver. E/E until March 2015, did nothing, further spread! Cape March 2015 for 2 cycles. Pleural effusion, drained last Friday, saw onc tonight. With the increase in pleural fluid during the cape he thinks it's not working!
Booked in for CT scan, need pleura fully drained then sealed. Re- test for ER status, going to try and test pleural fluid for HER2, or tissue from pleural lining when do that procedure, as apparently the liver lesion are not in a position for biopsy. Lots of unknowns, but don't want to spend too long with no treatment, so get lungs sorted then hoping to start paxitaxel weekly next week and then if it turns out to be HER2+ change to doxitaxel with H & P! He said being HER2+ is now better as there are more treatment options, but not to hope too much as it doesn't happen that often. My personal feeling is that from being a very responsive, slow cancer when on Letrozole that it's become more aggressive since last Sept. so possibly changed status!
Got a posh wedding to go to in Sicily on 30th Aug 2015 so that is a target!
Any advice/support fully welcome as loads of experience on this forum
Glo xxx