Stage IIIA, Her2 & now stage IV :(

Chelee - I just am stopping in to let you know I am thinking of you.  Let me preface this by saying - I don't know what I am talking about BUT the fact that your tumor markers crept up VS. jumped and doubled may be a good sign, no?

Thinking of you!

Frig Chelee....it has happened...

I can feel your anger from here...and understand it...I am sending you some positive energy to help channel that in to the next few weeks of action. You will need this energy to get your body and mind to new places.

I am so sorry about your new reality. Pick up the pieces and forge ahead. You can do this.

Chelee - I am so sorry this is happening to you. I have read many of your posts here and on HER2support, so even though we have never conversed, I feel connected to you. I feel really bad that your requests for scans and follow up were denied, that would have driven me crazy. My tumors markers are also rising, but quickly, so my doctors immediately ordered a bone scan and PET. I get the results tomorrow.

I was dx'ed last year and only 4 months out of chemo, and still on Herceptin, supposed to be NED...

Diagnosis: 8/21/2008, IDC, 9mm, Stage 1, 0/3 nodes, ER+/PR-/HER2+

Chelee - This totally sucks - I am so sorry this is happening to you.  Since you are a member of our little Her2 family, I feel especially connected to you. 

Thank you so much for reminding us that we have to strongly advocate for ourselves.  Even while you are suffering with this diagnosis, you are performing a great public service.

Might not be a bad idea to have a biopsy of one of the  suspected spots. Two reasons...for confirmation and also to make sure the tumor markers are the same.

LOL,my pink gloves have been passed along...thye are in the hands of their third owner. in my original chemo group of 15 or so women...the Rocktober group of 2005...we have had 1 lady metastasize, and 2 develop new breast cancers requiring new courses of treatment. I do hope to never see those gloves again...but am on guard for whatever comes next and I wear them mentally every day. So , here, I am passing you a pair of Everlast pink boxing gloves, virtual ones.

Fists up, Chelee!!

Chelee

I am very sorry you are having to face this all! I find it hard to come up with the words, except to say we are behind you and support you. There are so many women that are able to keep Her2 cancer in remission with the new drugs. I find so much comfort from them, Jenninmichigan is one and she may come along shortly or you could PM her. You are so awesome to come back here and remind us to speak up, fight for our feelings (they are our bodies anyway), and to be vigilant. That takes a wonderful soul to remind us all and post, during a time that you must be feeling very low.

One more thing I saw a post yesterday I believe from "fitztwins" called the Cleopatra trial you should check out right away because it is for those that are recently dxed HER2 stage 4 before they try other chemos. Be your advocate here now as well.

We will be praying for you, and come here to vent and ask for support at any time.

Oh gosh Chellee, I'm so sorry.  I agree with other posters about getting a bone scan. Take Care!

Hi Ladies:

I have to agree 100% w/Chelee here. I've found myself in a similiar position. A while ago, I e-mailed a few Stage 3ers that were just getting done w/their tx, to warn them of this very situ. Basically 4 years ago, I was dx w/Stage 3C (listed as 3A officially, but I was definitely 3C b4 surgery/neo-adjavunct chemo). After a very long run w/tx - over 1.5 years, including mega triple dose chemo/ surgery, more chemo/rads and 1 year of herceptin - my emphasis was putting this behind me. It was just too much, all at once, and for a long time.

ALL along, my onc was ALWAYS coming into my appts NEVER  reading my current history b4 hand, and reading the reports in front of me. Catching up w/herself, basically. I liked my nurse so much, and had been told that my onc was so great, that I thought this is how it was. But, I never felt totally comfortable w/her. I was directing WAY too much of my care. I was right all along. My onc never gave me any scans, and when I asked "Why is there an "H" by this CEA", she just blew it off. I had no idea, sadly, what a CEA was.  Well, my CEA rose another point  or so, 3 months later, and she immediately sent me into a scan (my first over 2 years since finishing tx).  I was dx w/a 5cm wide and almost as thick recurrence in lymph node in front of my heart. It's been heartbreaking that's for sure.

After 21 MORE rounds of chemo, it only shrunk in 1/2. I've been stable 1 year now, on Herceptin and a new A/I, and of course switched oncs immediately. My new onc is ALWAYS prepared, and is the exact opposite. He works with me, and does not come from the top down mindset that he knows best. It's a HUGE, huge difference. I believe the reality is most oncs, or people for that matter, aren't that far along w/themselves yet to work with patients as partners - it's a consciousness issue, I feel.

Bottom line: Stage 3ers need to be VERY vigilant about their care, I would say for the first 5 years for sure. My new onc would have scanned much more often, and I believe 100% that catching  this early,would have put me into NED. I'm considered a regional recurrence, but I am inoperable,  non-radiable, w/limited options at this point. I personally can't handle anymore chemo at this point - for me 33 rounds of chemo has been more than enough. So, neither Chelee or I, want anyone else to walk in these shoes.  

That's what we are trying to say.

- Kim

Hello sister...

As I understood you never took Herceptin till now. I am stage IV, her2+ but a lot of stage II also take it. Herceptin is powerfull drug for all of us and in fact it is the rescue for a lot of stage IVs. I wish you are one of them, fight and make the nightmare go away!!

Good luck with your tests:)