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
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
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
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
Thanks Nicky, have sent you a PM
Cheers Glo xxx
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
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
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
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