Metastatic Cancer

Jill:  I am so sorry to hear of your mets dx.  My onc also gave me the 2 year life span average (actually she said 20 months).  I told her I plan to be around a lot longer than that.  There are many women on the mets board who have been around much longer.  I understand your shock... my mammograms have remained clear although I have mets to my spine, the lymph nodes in my neck and chest, my mediastinum and my lung.  I am 1 year out from my mets dx now.... I had Taxol/Avastin for 10 months; it worked really well in the beginning with all of my mets shrinking after only a few months, but they started to grow again.  I just recently started Gemzar and after a few tx of that I can feel the mets in my neck are shrinking again.  How do you choose?  The weekly chemo is a lower dose than the every 3 week chemo, and much easier to tolerate but Gemzar and Taxol together are likely to be some powerful medicine.  You want to choose the medicine that will kick cancer's butt, but give you the best quality of life.  Maybe you could ask you Onc what he would choose it it was him.  I know this is a scary time for you, and I wish you the best of luck.  Please keep us up to date on how things are going for you.  Linda

janinvan:  The mediastinal area is the middle of your chest under the breast bone... I had a mass of lymph nodes in that area that was very large (8.5cm).  I also have a total of 8 tumors that extend from my trachea to my supraclavicular and infraclavicular area.  They do not cause me pain, but I can feel some of them and I know before the PET scan whether or not the chemo is working.  They have also caused LE in my left arm.  Good luck with your CT and your upcoming chemo.  Linda

Linda....thanks for your reply....I think I'm fairly intelligent -- BUT it seems like the cancer cells easily attach to these lymph nodes!..?

I would like FLALADY to also read this......

What generally was your history of it?

Re: any pain-- I mean mostly a discomfort/smarting/etc. in the infraclavicular area. ALSO there's nobody to "compare notes" with.....(patient)

ALSO on t.v.--- that oncologist -Lisa Newman?...who is investigating DNA etc.of  TNBC in African American women and African(30%)...and NOT assessing the 15% of Caucasian women... is that SO PRODUCTIVE/SMART

JANICE

The CHEMO companies do very well...WHY is the research.cure for tnbc SO difficult?

Janinvan,

I've never heard of anyone getting this chemo combo...Cisplatin is a old chemo and a tough one to take.  I would not take this drug unless I had no choice.  I would be asking why want to use it.  I've not seen anything showing it has value for TN ladies.  Gemzar usually put with carbo or taxol...

I had many nodes positive a long the way.  The area you are talking about happen to me about three years ago.  I could only feel ones in my neck Janice.  You are possibly showing signs of soft tissue disease like I have.  This means instead of distance mets you disease moves slowly to near by nodes and tissue.  This is not IBC...I got that at a different time. Are you Brac+?  I would look into Parp trials if you our positive and can travel for Texas.  You can't do this trial if you have already taken Gemzar & carbo.

Flalady

I have found knowledgeable TN oncologist in different places. I've seen seven different oncologist at four different clinics and have close buddies all over the country that we compare treatment options.  I found the most knowledgeable doctor right in my back yard.  The key is also if they work at a good clinic that let's them use drugs that are "off label" meaning they have not been totally approved by FDA for breast cancer but show early promise.  After standard treatment for any cancer the next protocol is really up to the doctor to do their research.  There are no proven set protocol for TN, so the next chemo combo is always controversial.  Most of my buddies have done the same chemo but in different order.  Dr Lisa Carry at Duke University in North Carolina has written a lot about TN.  MD Anderson Houston TX is the top cancer clinic in the world and they did not know how to treatment me two years ago.  I also know some going there now that they call and ask me what to try next"?? Not a good sign.  John Hopkins is the other top clinic in the US and my friend there pretty much done the same cmobo's.  I guess what I'm saying is... see what other TN ladies are being treated with.  You may have to move to stage IV section because stage IV are not welcome here because it upsets the "whole be positive" that wants to control what is said about advancing disease so you can't talk to many stage iv in this section.

I just know that none of use was treated with cisplatin. One other drug offered as a last resort is Navelabine, bone/lung mets they use Abraxane, Doxil a form of Adriamycin also used in late stage.

IBC is inflammatory breast cancer.  That means it spread to my skin.  I got this the first time three years ago ad than it returned last year very aggressively. 

Did they test you for a Basal tumor?  This is a sign of asggressive disease and of course I have this.

Flalady

Jill, how are you doing?......Please let us know......Hope you are doing okay.....