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Stage IV metastatic; age 40
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zenrookie View Drop Down
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    Posted: Apr 13 2008 at 8:42am
Sleepy Since I turned 40, I went in for standard mammogram. 3 weeks later I am about to start chemo for stage 4 metastatic triple negative breast cancer. The doctors are letting ME choose the regimens from some choices. THe one they seem excited about is :carboplatin, paclitaxel, & RAD001.  A phase 1B trial.  Can anyone help me?  My questions are so many from my realistic longevity with chemo, also quality of life. I am mother to a 10 year old daughter who has autism and nonverbal. In a way I am her pathway to this world. What were other experiences?  Has anyone else heard of or participated in this chemo regimen?  The other regimen offered was :carboplatin/paclitaxel and avastin.   If anyone can help, I would appreciate very much the input.  I am losing weight quickly and I feel like I can't breath as well although the nurse said that possibly was an upper respiratory infection.  Help. (Susie)
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CarynRose View Drop Down
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Points: 960 		Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 9:49am
Zen,
 
All I can tell you is that there is quantifible information that Carboplatin/Taxol/Avastin works very well to reduce, stabilize, or eliminate mets (especially to lungs/liver).  Before I started on clinical trials, I'd rather try something that I know seems to work.
 
Cheers,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Alma View Drop Down
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Originally posted by zenrookie zenrookie wrote:

Sleepy Since I turned 40, I went in for standard mammogram. 3 weeks later I am about to start chemo for stage 4 metastatic triple negative breast cancer. The doctors are letting ME choose the regimens from some choices. THe one they seem excited about is :carboplatin, paclitaxel, & RAD001.  A phase 1B trial.  Can anyone help me?  My questions are so many from my realistic longevity with chemo, also quality of life. I am mother to a 10 year old daughter who has autism and nonverbal. In a way I am her pathway to this world. What were other experiences?  Has anyone else heard of or participated in this chemo regimen?  The other regimen offered was :carboplatin/paclitaxel and avastin.   If anyone can help, I would appreciate very much the input.  I am losing weight quickly and I feel like I can't breath as well although the nurse said that possibly was an upper respiratory infection.  Help. (Susie)
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Alma View Drop Down
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Points: 40 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 13 2008 at 5:34pm
Susie,
 
I am so sorry that you have to face this challenge at so young an age.  You probably are not familiar with clinical trials, their goals, and so on, and I think it's unfair to throw the decision into you lap this way.
 
READ the protocol for that clinical trial. Aloud.  It is an early trial, so it has no track record.  For myself, I would rather try a more tested regimen before going into a trial.  I assume the doc has staged your case with testing for distant metastases.  A careful doc will retest you after you have been in chemo to see whether there is a "response."  If the drugs are not working, then maybe, but only maybe, you could enter that trial. Read it. So many trials want "virgin" patients and won't take a previously treated patient.
 
As for longevity, sigh, who knows?  It's probably best to plan for the worst and hope for the best. Getting some planning done, in writing, may help you to get on with your treatment in the best frame of mind. For example, make serious plans for your daughter, and then put it aside and pay attention to yourself.
 
As for QoL, we are talking about toxic drugs. There is no free lunch, although some "recipes" are better than others.  The only one of your drugs that I have taken, and not quite that one, is paclitaxel. I had docetaxol (Taxotere) and did well with that. The platins are tough drugs, I think. But, hey, the docs have wonderful drugs for side effects now.
 
Are you losing weight because you are  not eating, or what?  Is your doc treating you for that possible upper respiratory infection? Ask the medical people the tough questions. Make them track what is happening. Chest x-ray?
 
Good luck,
Alma
 
 
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trip2 View Drop Down
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A warm welcome to you Susie.Hug
 
You might look at the recurrence/metastasis forum for more information and best wishes to you,
Stage 2 2003
Stage 1 2007
BRCA 1+
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lisalaw View Drop Down
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Alma,
I have finished my 5th neoadjuvant chemo and have had 5x abraxane, 2x carboplatin and 1x avastin.  My 7 centimeter IDC tumor has shrunk to nearly nothing and my 3 centimeter lymph node is ruduced to 1/2 the size.  I am stage 3 grade 3 tn, with an unknown amount of positive axilla lymph nodes.   I had promising results after just 2 treatments  with theeabove chemo. I had to stop for a few weeks since I was hospitalized with an unrelated staph infection in my blood due to an infected chemoport.  I will be getting more chemo,   carobo, abraxane and avastin this week  and am hopeful it will continue to reduce the remaining lymph nodes.  I a 43 and also have a 10 year old daughter and a 7 year old as well.  I think these drugs will give me the best chance of survival.  I hope to have helped you. 
Lisa  
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Alma View Drop Down
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Points: 40 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2008 at 4:44pm
Originally posted by lisalaw lisalaw wrote:

Alma,
I have finished my 5th neoadjuvant chemo and have had 5x abraxane, 2x carboplatin and 1x avastin.  My 7 centimeter IDC tumor has shrunk to nearly nothing and my 3 centimeter lymph node is ruduced to 1/2 the size.  I am stage 3 grade 3 tn, with an unknown amount of positive axilla lymph nodes.   I had promising results after just 2 treatments  with theeabove chemo. I had to stop for a few weeks since I was hospitalized with an unrelated staph infection in my blood due to an infected chemoport.  I will be getting more chemo,   carobo, abraxane and avastin this week  and am hopeful it will continue to reduce the remaining lymph nodes.  I a 43 and also have a 10 year old daughter and a 7 year old as well.  I think these drugs will give me the best chance of survival.  I hope to have helped you. 
Lisa  
 
Thanks, Lisa.  Your having a tumor that has shrunk to nearly nothing and the lymph node that is half its former size is very good news.  That kind of response bodes well, and I love happy stories.
 
Cheers,
Alma
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