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Topic: anybody else diagnosed with lung, liver & brain secondaries?

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

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Posted on: Jan 12, 2010 10:38AM

Posted on: Jan 12, 2010 10:38AM

111lisam wrote:

Hi everyone,

I was originally diagnosed with breast cancer Oct 2005 at 29yrs old. Since then I have had 2 recurrances & last Nov I was diagnosed with lung, liver & brain secondaries. I have had 10 sessions of whole brain radiotherapy & am currently on weekly sessions of oral Navelbine & 3 weekly sessions of Herceptin.

I am from England & am registered with a few british breast cancer forums but can't seem to find anyone in a similar situation to me which can be very lonely & frustrating as I have noone to compare treatments with. My prognosis is not good but I am determined & not ready to give up yet.

I would love to hear from anybody in a similar situation & wonder what treatments you have been offered. Have they been successful? I think I am right in thinking that America is ahead of Britain with cancer treatment?

Thanks for listening,

Lisa x

Lisa Dx 11/5/2009, Stage IV, 2/16 nodes, ER-/PR-, HER2+
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Jan 12, 2010 12:03PM PJB wrote:

Lisa, welcome, though of course we all wish you weren't having to look for a bc support board. I have bone and liver mets after being originally diagnosed in 2004. Sounds like you're fighting like crazy. Wishing you much luck in the fight. 

 I've been on several chemos and one failed AI since March 2009 when my mets were found. Started Doxil last week and hoping it's the one that stops the buggers. 

 Sending hugs across the pond,

Paula 

May 2004, Stage 2 IDC. Recurrence in 2005. On Femara til mets diagnosis in Feb 2009. On Faslodex 8/11. Brain mets in April 2012. Progression in liver 6/12. On to Etoposide. Dx mets, ER+/PR+, HER2-
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Jan 12, 2010 12:10PM joaniji wrote:

Hi Lisa,

While I am not in your situation and therefore can't offer much advice, I did want to extend a warm welcome to you to this forum.  I am so sorry that this is happening to you, it sounds like you are in a very difficult situation and my compassion goes out to you.  I am glad that you have posted on this forum.  I know that more woman who can offer personal advice to you will come aboard soon.  This forum is truly a wonderful place to come to gain support, give and receive input, share a laugh and connect with others who really can relate.  Please feel the cyber support being sent your way.  I wish you all the best as you continue your treatment - may it be successful and allow you to do the things you love.  Best. 

joani Dx 1/1/2009, 2cm, Stage IV, Grade 2, 0/3 nodes, mets, ER-/PR-, HER2-
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Jan 12, 2010 01:38PM konakat wrote:

Hi Lisa,

I'm only a liver and bone mets person but can empathize with all the seemingly endless treatments.  There's a woman who frequently posts in this forum -- ElaineD -- who's from the UK.  No doubt she will find you here and say hello.  And many other women too, some with the same mets and treatments as you.  Please come her often, post often, we're all here to support you as best we can.  Hugs,

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake. When you haven't a clue, add ice cream. Elizabeth's Mets: Liver, bones, brain (yuck), and lungs (more yuck). Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
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Jan 12, 2010 02:07PM chainsawz wrote:

I have lung and brain mets, but no liver.  I have been reading that WBR might possibly open up the BBB (blood brain barrier) or weaken it so it's thought herceptin might be able to then pass into the brain.  I also take tykerb along with my herceptin.  Tykerb is a smaller molecule and believed to pass the BBB. 

I haven't had WBR yet, but instead was able to get SRS (cyberknife) since my mets were small.  I have heard great things about navelbine and you can probably find some good info on this site.  Best to you! 

Lisa -mets to lungs & brain - clear lymph nodes.....the weakest step toward the top of the hill, toward sunrise, toward hope, is stronger than the fiercest storm. Dx 7/21/2008, IDC, 3cm, Stage IV, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2+
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Jan 12, 2010 02:23PM dreamwriter wrote:

I have lung mets and a liver met but no brain mets to date. 

I had 6 FEC, 18 Taxotere.  Was considered stable for about a year and a half.  Now my mets are basically showing up very very slowly.  This is encouraging.

Basically remember to go with the flow, energy wise.

Laugh until it really IS funny. Dx 12/20/2005, 6cm+, Stage IV, Grade 3, 18/18 nodes, mets, ER+/PR+, HER2-
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Jan 12, 2010 06:00PM - edited Jan 12, 2010 06:06PM by Judiiiii

This Post was deleted by Judiiiii.
Judi Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 12, 2010 06:03PM Judiiiii wrote:

Lisa, While my situation does not really parallel yours, I was dx'd with mets to lung, liver, and bones over 8 years ago.  No brain mets.  I've been on constant chemotherapy since my diagnosis and responded to nearly everything, except Femara - it didn't work at all.

While your prognosis may not be good, in reality, the docs have no idea how you will respond to any particular chemo.  That's pretty much the bottom line as I perceive it - i.e., how well you respond.  And keep in mind that new chemos to kill those nasty buggers are developed as time goes on. 

Best wishes.   Judi

I wish you many years of responding welll!   Judi

Judi Dx 9/23/2001, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 13, 2010 04:11AM ElaineD wrote:

Hi Lisa-and welcome. As Elizabeth said, I'm the other Brit on board-good to see you here, but sorry you had to join us. I have a feeling that I may have seen you on the pals board, which is the other forum I use?

I'm not in your situation, although have mets to pleura, liver and bones, so have some vaguely similair treatment options for some of the mets, I imagine.But can't help with the brain mets issue,I'm afraid....

As to the difference in treatments between the U.S and G.B? Well I've been posting here for over 2 years, and from what I can understand they do seem to be slightly advanced in some things-ie, trial drugs may be at phase 3 rather than phase 1, for example. But overall, we are doing not too badly here-the gap is certainly closing. So far I haven't felt the need to consider going to America for treatment-and certainly several years ago, this seemed to be an option for quite a few people who were presenting with unusual cancers.

Where we are different-thank goodness, as it breaks my heart, when I read the posts, is in the care we receive. No worries about who will pay-we get all we need, with the only potential exception being drugs which aren't as yet approved by NICE. We are so lucky in this respect. The American girls often have to fight all the way for drugs and tests-not what we need at this stage. The other difference I've noticed is that they do get test results quicker-but they can phone and ask for them to be conveyed over the phone, or pick up paper copies! Eeeeeeeek!!!!! Again, I'm more comfortable waiting slightly longer, and then having a face to face consultation with my onc who explains the findings in detail.

So, overall, I think we are doing fine on this side of the Pond. Have confidence in your team-they will find the best options for you. Failing that, as I'm sure you already know-or if you have any doubts-it may be worth consulting with the Marsden. No doubt I will do this at some stage-when I feel we're coming to the end of conventional options.

Please feel free to pm me if you want to chat in general-about anything. I can relate to the feeling of loneliness-it is a lonely road to travel for us all, in one way or another. But would love to get to know you and chat some more-we may even be close enough to meet in person, if you feel able? I'm a Scot living in Devon (Exeter)-and my primary cancer was treated in Scotland, so have a variety of experiences re locations which may help. Good luck to you-and hope you feel a little less lonely now you have found us. I'm sure we must have someone who has similair mets to you? But there goes chemo brain again.....I can't think who fits the criteria!

Dx 11/4/2007, 5cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 13, 2010 07:47AM 111lisam wrote:

I'd just like to thank everyone for taking the time to reply to my post & thankyou for the lovely welcome. Your posts are very encouraging.

Hello again Elaine. Yes I am registered with the pals board & the BCC (I feel that the more info I can get the better my chances)

Lisa x

Lisa Dx 11/5/2009, Stage IV, 2/16 nodes, ER-/PR-, HER2+
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Jan 14, 2010 04:27AM Dee2810 wrote:


Hi Lisa!   Another brit here. I have mets to... wait for it!... my brain, liver, lungs, bones and also other breast although that seems to have gone! Portacath in its place!!   I was diagnosed with all of that in feb last year. Had WBR x5 back then but now have some new brain mets though they don't seem to be growing, oh neglected to say that had tumors in spinal cord in oct to which they gave some pretty extensive rads, so, I had a sneaky suspicion that I probably had it back in the brain as they told me it had gone to my central nervous system!   Anyway started on Xeloda after that which worked till oct, hence mets to spinal cord, after rads,5 weeks worth while on Aromasin, now on Taxol and hoping it's working! Tolerating it well though must admit like an ole' lady!!! Bit slow and wobbly but after 11mths of treatment what would you expect.   Like you though loving and living life, working, happy and long may it be so!!!! I only get on here every now and again because this puter belongs to teen girlie and I'm usually in bed before her! Am having a bit of a PJ day today and she's gone to school! The folks here are FAB here though and always respond even when you've been away for a while!   If you do wanna PM do and I promise I'll try and get online more often to help out in any way with info etc....    Big Hugz Dee xx (0: 
Dx 2/14/2009, Stage IV, Grade 3, 2/40 nodes, mets, ER+/PR+, HER2-

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