Met. Breast Cancer unresponsive to many chemos!

Wondering if any of you have had my experience of being on 9 treatments in 3.5 years with more progression after trying each one.

ER positive but even the anti-hormonals didn't do a thing.

Joanne

i was diagnosed stage 4 her2 w/ mets to the liver   this was 11/2 years ago chemo surgery radiation    i just figure i am now on a maintenance program  i am so very grateful the drs keep coming up w/ new stuff 2 try i've been on taxotere herceptin then zeloda and tykerb now gemzar  there are still about 4 more out there so far 4 me 2 try  it seems they work 4 a spell then not so good  my liver tumors were 7 cm  well one was i have them in all quadrants  so i just figure as the chemos have not been that rough on me i'll just keep switching w/ the furvent hope that they come out w/something that just keeps working to shrink or make them go the heck away  wow  what a concept. i am 50 and way to young to let this hinder my life overmuch i been through so much crud in my life that the hits just keep on coming i just keep telling myself this 2 shall pass  go live   be happy the sky is blue and the grass is green i figure that is relativally safe  prayers are w/ us all and that there is a strong dose in it self  lilchris

 

On 8/7/2009 lilchris wrote:

i was diagnosed stage 4 her2 w/ mets to the liver   this was 11/2 years ago chemo surgery radiation    i just figure i am now on a maintenance program  i am so very grateful the drs keep coming up w/ new stuff 2 try i've been on taxotere herceptin then zeloda and tykerb now gemzar  there are still about 4 more out there so far 4 me 2 try  it seems they work 4 a spell then not so good  my liver tumors were 7 cm  well one was i have them in all quadrants  so i just figure as the chemos have not been that rough on me i'll just keep switching w/ the furvent hope that they come out w/something that just keeps working to shrink or make them go the heck away  wow  what a concept. i am 50 and way to young to let this hinder my life overmuch i been through so much crud in my life that the hits just keep on coming i just keep telling myself this 2 shall pass  go live   be happy the sky is blue and the grass is green i figure that is relativally safe  prayers are w/ us all and that there is a strong dose in it self  lilchris

 

Has your onc ever mentioned chemoembolization?  I'm on a metastatic br ca message board, where women with extensive liver mets have this procedure.  Look it up on google.  It seems it's a procedure to block off the blood vessels that are feeding the tumors you have in your liver so they can't grow anymore, then the loss of blood supply to them eventually kills them.

I'm going to ask my doc about it when I see him next. 

Where do you live? 

 

On 8/7/2009 thimbles26 wrote:

Wondering if any of you have had my experience of being on 9 treatments in 3.5 years with more progression after trying each one.

ER positive but even the anti-hormonals didn't do a thing.

Joanne

my wife has been on 8+ therapies in 6 years of stage 4 breast cancer....have you read the book Beating Cancer with Nutrition by Quillan ?  might look there for some ideas to complement traditional therapy ..it has helped us ....

    and also there is a new test out called Target Now by a company called Carisdx that does a molecular profile of the DNA of your cancer to guide them in choosing a better chemo ... FDA approved in May 2009 .....we are getting the biopsy done this week then get results in about 10 days .....anybody else here do this test yet?

 

On 8/7/2009 lilchris wrote:

i was diagnosed stage 4 her2 w/ mets to the liver   this was 11/2 years ago chemo surgery radiation    i just figure i am now on a maintenance program  i am so very grateful the drs keep coming up w/ new stuff 2 try i've been on taxotere herceptin then zeloda and tykerb now gemzar  there are still about 4 more out there so far 4 me 2 try  it seems they work 4 a spell then not so good  my liver tumors were 7 cm  well one was i have them in all quadrants  so i just figure as the chemos have not been that rough on me i'll just keep switching w/ the furvent hope that they come out w/something that just keeps working to shrink or make them go the heck away  wow  what a concept. i am 50 and way to young to let this hinder my life overmuch i been through so much crud in my life that the hits just keep on coming i just keep telling myself this 2 shall pass  go live   be happy the sky is blue and the grass is green i figure that is relativally safe  prayers are w/ us all and that there is a strong dose in it self  lilchris

Hi Lil:  I read your post to this forum and wanted to ask you some questions about the herceptin.  I am stage 1V as well..so far just mets to lung that have been kept under control by the herceptin.  Did this drug stop working for you?  Do you have tumors in your lungs or are they wide spread in several organs?  I have been on this herceptin for over a year now, and I know if I go off of it, the tumors are aggressive and they will return and continue to grow in my lungs.  They have already demonstrated the ability to do that when I had a 4 month break from the herceptin last fall.  Sounds like you have been on many differant maintenance drugs and I just wanted to know how long into your treatment  with herceptin did it stop working?  My mets was discovered in the sping of 07 and I was treated then with avastin and taxotere..then in March of last year I started the herceptin.  So far so good with it though, and as I said the cancer has responded to this drug.. I just as I said wanted to know about when it stopped working for you?  Thank you for any input..

Best wishes your way..and yes enjoying each and every day is very important when a person has the disease we have to fight..I too am her 2 pos.  I have been fighting this stuff since it was first discovered as a tiny cente. tumor in my left breast in 01.  I went 6 years in remission after chemo and radiation in 01.  Then in 07 I had elbow surgery and a prescreen xray found a nodule in my right lung..and after a biopsy of my mediastinal nodes the cancer was confirmed to be back..and this time instead of coming back in the original breast ( I didnt have a mastectomy) it had already spread to my lungs.  So far I am fortunate that it has not shown up in my liver yet..  do you have alot of symptoms with the liver mets?  We are all differant in how we manage this disease and how it effects us, but I was just wondering and of course want to know what to look for if I have symptoms.  I have pet scans every few months and they are usually pretty good about showing up areas of cancer activity...and so far none anywhere but the lungs. 

 Well, I will get off here, hope to hear back from you..

thankyou.  blessings your way!

Jodie

 

On 8/7/2009 thimbles26 wrote:

Wondering if any of you have had my experience of being on 9 treatments in 3.5 years with more progression after trying each one.

ER positive but even the anti-hormonals didn't do a thing.

Joanne

I was diagnosed in Dec 08 that my bc had meta to my lymphnodes in my abdomen after 3.5 years of remission. I have been on 5 diff chemos since Jan & the tumors have still been growing. I am now on taxol & avastin which is a prohibitor to starve the cancer cells. I think it's working, but I've been dissappointed so many times, I can't get my hopes up. I am triple neg so can't do any hormone therapies. I am 42 & very scared that this has come back & had alot more complications & trauma since the first bout in 04. I guess all we can do is keep trying & hope something will work-I know you're supposed to stay positive & I try, but when its setback after setback, it's tough! So stay as positive as you can and surround yourself with positive people.

I am replying to the message in regards to the new DNA testing of cancer cells called Target Now, was wondering how the that went, was it helpful for the Physician to choose a better chemotherapy agent?

Unfortunately the results came back too late to do us any good ... my lovely Lynda passed away on Sept 2nd,..see obit below

http://www.hcnonline.com/articles/2009/09/09/woodlands_villa

 

I did get the results and they did suggest some new drugs so it might have been helpful ..... certainly could not hurt ...approved by medicare ..must have a lot of science behind it ..... good luck and God Bless

 

On 9/9/2009 FranklySpeaking wrote:

Unfortunately the results came back too late to do us any good ... my lovely Lynda passed away on Sept 2nd,..see obit below

http://www.hcnonline.com/articles/2009/09/09/woodlands_villa

 

I did get the results and they did suggest some new drugs so it might have been helpful ..... certainly could not hurt ...approved by medicare ..must have a lot of science behind it ..... good luck and God Bless

 

I'm saddened to hear of the passing of Lynda. My deepest sympathy goes out to you and your family. My Mother and I have decided to stop her chemothearpy and go alternative, trying something called Protocel and was wondering if anyone has tried this and if so what was their outcome.  

My Thanks to everyone here for their condolences.  When diagnosed (at Stage 4 breast cancer) we knew the prognosis was only one to two years.  We are blessed to have had my lovely Lynda for 6 years.  

Looking back ,the one thing I wish we had found sooner was a place called The Bright Spot for Health in Kansas.  www.brightspot.org  They have a  medicare certified lab and an oncologist on staff but they treat a whole host of diseases besides cancer.  I have seen them mentioned as a Sherlock Holmes of chronic illness and their doctors and lab work on nutritional medicine.  There are ongoing studies on IV vitamin C at the University of Kansas with Dr. Jeanne Drisko  .. see here for a FAQ and also many full published articles (links at bottom of page) re IV C (at IV concentrations it acts differently than oral)  http://integrativemed.kumc.edu/ivvitaminc.htm

     We went there early in the summer of 2008 and started the IV vitamin C there and then back in north Houston after receiving the results.  Lynda never had more energy and felt better than while on this. We even went to Disney World in July.  Unfortunately she got a port infection and it had to be removed, one arm had lymphedema (no IV in that arm) and the other was a very difficult stick due to the many sticks over the years. 

 IV vitamin C is not the only thing they do but is a great thing for cancer patients.

I wish we had started there and with Patrick Quillans' book, Beating Cancer thru Nutrition 1st (complementary not alternative see Amazon) or had gone after the very 1st round of chemo if not before.  With the exception of a few targeted theapies (Herceptin etc.)  why not give your body a chance to heal by finding out any deficiences and/or toxic problems ? before you go far down the chemo trail ...once too far there is no going back as your body is too depleted or just plain worn out.  

Lynda also had the least side effects of anybody in her 100 person support group while on supplements.

 We should have stayed with the IV C no matter what ... oh well... hindsight is 20-20 ...but if even 1 person decides to check this research and these places out it will be worth it!    If anyone wants more info or a personal point of view than send me a private message and i will be happy to talk on the phone or converse via e mail.

 

Good luck and God Bless