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Lung x bone mets

9 REPLIES 9

Re: Lung x bone mets

Karent, How long have you been on this combo? Like I said in my comment this combo can take longer to kick in. I have never been on a combo before and have wondered what happens when it fails? I did see on another site that when letrozole and ibrance failed they then combined ibrance with another hormonal. I meant to talk to my oncologist at my last appointment about this and forgot. I tell my family the truth about scans, but not the best at the emotional truth. I feel they don't want to hear it! I tried a couple times, but all I ever got was you will be fine and they kind of walk away and start doing something. They aren't being mean, I just think it's the good old mom will be fine attitude. Moms aren't allowed to be sick! No matter how old the kids are. FF

Re: Lung x bone mets

Hi Maldives I got scan on 7th Feb I think because I never had positive news I just assuming it bad, I do tell hubby x kids results but just like you I don't tell them how I feel try to put brave face on as I think I they think I down they will get down and I don't want that.
Thankyou for message lots love ❤️

Re: Lung x bone mets

hi Karen sorry to hear you feel like that, we all go through it.my last scan in dec showed all was stable but my TMs were increasing. they went from 70 and im in the 400,s at mo in 4 weeks. my onc says increased markers just indicate he needs to look closer with a scan. If the scan is ok, hes not worried, so dont worry too much. I was in a right panic untill I started talking to these lovely ladies. keep strong, there are loads of next steps out there. keep talking to people who know how your feeling. I bet you hide it from you hubby and kids. Im honest with mine as far as results and treatments go but I never tell them how I,m feeling. this site has helped me, I hope it helps you too. sending hugs and happy thoughts over to you xx sue xx

Re: Lung x bone mets

Hi funny face / ladies

I to on palbociclib but on think it faslodex (injections in bottom)
My oncologist is lovely she has rang me to say continue with treatment one more cycle then scan but said stay strong still couple options to try

Thankyou ladies your support means a lot just feel alone sometimes think hubby x kids thought this was wonder drug
Lots of love x hugs

Karen xxx

Re: Lung x bone mets

 Karent, My onc doesn't do tumor markers, says they are not reliable for most people. I'm sure you might have a better understanding of  how yours have worked in the past, if they rise with progression. I'm sorry I can't remember what treatment you are on and have been on. I need to make a notebook, so I don't appear to be a ninny! When your oncologist said your markers were rising, was he concerned. Did he suggest a scan or change in treatment? I think if they took a big rise I would want a scan to see where I stood! Depending how long and what treatment you are on, maybe the treatment hasn't kicked in yet. I do believe hormonals can take a bit longer to show results. I do know for myself, I'm on letrozole and palbociclib my first scan at 3 months showed stable. Stable is good but with all the hoopla in the news about this new drug I was hoping for better results.  My scan 6 months after that showed amazing results! I I'm not sure about this, but I also thought I read somewhere if you have bone mets that when it's first working on them your TM's can rise. The most important thing for you I believe is to talk to someone about this and get answers! You should be told if it's time to be concerned or not! You should not have to sit and worry needlessly! Hugs! FF

Re: Lung x bone mets

hi Karen, just wanted to say hi and re-iterate what the others have said. My onc has told me not to read too much into TMs but i have mine done regularly because i have skin mets (as well as bone and pleura) which arent picked up on scans so its an extra way of trying to monitor them. It is alays scary when they go p but he has told me that it doesnt necessarily mean bad things. Hope we have been able to reassre you a little bit. X

Re: Lung x bone mets

Hi Karen hope you are feeling brighter xx I have had lung mets since 2013, Two scans in 2013 showed progression and I really thought that was it however I did respond to the next treatment and have been largely stable since then. I hope that gives you a bit of hope. I haven't seen my BCN for four years - she vanished on my secondary diagnosis!! Hopefully you have access to one xx

Re: Lung x bone mets

Yes, Marion is quite right Karen. 

 

We all have days like this...honestly...my tumour markers shot up to over 1000 last summer...now they are under100, sometimes it takes a bit of adjustment to find the ideal drug...please try not to despair...I suspect you will be around for quite a while....'.there are a bundle of drugs In the basket' what is the onc planning

did he say?

 

keep chatting tho, best tonic is to share with all of us, we are all here for each otherxx

 

Moijanxxx💚💚💚

Re: Lung x bone mets

Hi Karen,

 

So sorry you're feeling this way.

 

There's another thread on here about tumour markers that might help - they are not always the be all and end all.

 

Is your onc sympathetic and approachable? If not, it might be worth changing to someone else. And maybe speak to the BCN - some hospitals have one specially for SBC - who will have more time to listen to your concerns.

 

Take care of yourself,

 

Marion

Lung x bone mets

Hi everyone feeling quite low at minute oncologist says tumour markers gone up and I was aware I had an aggressive cancer now just can't seem to shake the feeling I not be here soon 😭😭😭