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Chemotherapy doesn't always work

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Topic: Chemotherapy doesn't always work
Posted By: chicklitzz
Subject: Chemotherapy doesn't always work
Date Posted: Apr 08 2008 at 7:53am

Let me start by saying I don't want to scare anyone with this topic. I just feel like I should share since it happened to me. When I started 6 months of  neoadjuvant chemotherapy I wasn't aware that sometimes certain chemos just don't work on some people. I was on Abraxane (just like Taxol but more natural) which was not working and I found out after I realized myself after 6 weeks that the tumor was actually getting larger and harder, not smaller and softer.  After researching it appears that any certain chemo only works about 60 to 70 percent of the time. Why no one told me this, I'm not sure, I can only guess that they didn't want to crush my hopes. But for Pete's sake please just give it to me straight and we'll work with it. I just thought that chemo always worked, I just thought some worked better than others.

After finding this out I decided to have chemosensitivity testing on the tumor when it was removed.  No one ever told me this was even possible I just stumbled across it during one of my internet surfing frenzies trying to find out more info that might help. The lab had it sent to Dr. Weisenthal in California. He has a website which better explains this process. They test the actual tumor with different chemos and give you what percentage rate it has of working on your tumor.  Most insurance companies do not cover it, it's controversial. It costs me $1800.00. As it turned out, after the surgery to have the tumor removed the chemo the doctor wanted me to go on had an 85% chance of working on my tumor, which was the best odds of all the different chemos. Had I known this earlier I could have avoided Abraxane altogether and the tumor wouldn't have had free reign in my body for 6 weeks.
 
I really just felt the need to share this because I didn't know and I wish someone would have told me that chemo doesn't always work.  For me
the chemosensitivity testing was worth the money. Otherwise, how do you really know after the tumor is taken out if the chemo is working? You can't go by the size of the tumor anymore so you really just hope that the chemo is killing whatever is left circulating around in your bloodstream after the tumor is taken out. You really wouldn't know until it metastasized somewhere else.  
 
God Bless and KEEP STRONG. 
         



Replies:
Posted By: cg---
Date Posted: Apr 08 2008 at 8:44am

I tried to have my tumor chemo tested.....the lab sent normal (fibroglandular breast tissue) instead of enough tumor to be tested. If I have a recurrence...I will do the chemoresistance testing again - if I have to stay away for the procedure and watch the tumor being handed off to the guy waiting! It cost me $2500.

The peace of mind has no price tag and I am so glad you found a chemo that will kill off the beast!
 
Otherwise, we take the chemo and cross our fingers. Trust me...I would have taken anything to kill the cancer, and stay on chemo as a suppressive therapy rather than the eanie, meanie, miney, moe approach they use to pick a chemo for us. My old oncologist told me that the differences were pill opposed to IV, finishing in 4 months instead of 6. Gosh, how scientific is that!
 
 
 
Connie


Posted By: EWKSeattle
Date Posted: Apr 08 2008 at 10:01am
I totally agree.  Taxanes and Xeloda haven't worked well for me, but other drugs have (Adriamycin, Cisplatin, Navelbine, Avastin).  I'm waiting for chemosensitivity results to come back any day now.  I'm running out of standard options, and it's worth whatever I might have to pay to avoid unnecessary toxicity from a drug that isn't going to work!

-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: peach
Date Posted: Apr 09 2008 at 9:58am
I wish I had known about this before my lumpectomy, or even the fact I could've had chemo before the lumpectomy.  It seems like we're hit with so much in the beginning and being triple negative it just seems like it would make sense to have this offered to us.  I would've been willing to pay for the expense just for some peace of mind.  I did AC&T and am hoping it keeps the beast away.
 
Pat


Posted By: Netterz
Date Posted: Apr 09 2008 at 7:09pm
Adriamycin, Cisplatin, did NOTHING, over 6 months of it, and then reacted horribly to taxol, so quit that, so for me, none of the chemo had any effect at all, other than making me horribly sick and bald for almost a year. During that time, it allowed mine to spread, like wild fire. At this point, I am finally nearing the end of 47 rad treatments, and my new ocologist is concerned, that nothing worked before, and wanting to put me on something else, or a clinical trial, after an entire new set of scans. I have to be honest..I am considering not doing any more chemo, until they can come up with something they know has some effect on my cancer. I am wearing down, and out, and just getting too tired to keep taking poisens, to kill off everything, good and bad, just to find out too late its worthless.  After watching my dad give up the last 2 years of his life to chemo, so sick he could barely move, instead of enjoying what time he had left, on chemo that  had no effect on his cancer at all either. I took care of him 24/7, and I know all too well what he went thru, and what he lost over it. I dont plan on ever checking out the same way he did.  have always reacted differently to medicatons, usually does the exact opposite of wat its supposed to. They dont have a grasp on T-negs yet, and after as much searching and researching as I have done, the conclusion is...they really dont have much of a clue on what will battle this type. Each woman responds diferently, like 5000 types, within the sub-types, and genetics, pre-disposition, ovr-all health,  etc.  We all know our own boies better than anyone else. When I was on chemo..the formor onc kept saying... its smaller, and smaller, heh.... was bigger and had spread alot farther, so she was lying to me the entire time, leading me to beleive things were ok, when in reality, they were not at all. She never even bothered to tell me that there was anther node, outside the sack of 25, to make 26 in all, that was positive as well, and did not have clear margins. We are our own best advocates and warriors when it comes to this, we all have to do the best we can for ourselves, and what we feel is the right thing to do. Hang in there ladies, and do what you feel is right.

-------------
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI


Posted By: cg---
Date Posted: Apr 10 2008 at 3:52am
Elizabeth,
 
Have you heard back on your chemoresistance testing yet?
 
I have been praying you have a chemo identified that will eradicate every rogue cancer cell!
 
Connie


Posted By: EWKSeattle
Date Posted: Apr 10 2008 at 6:53am
No, still waiting.  The tests are so new that I'm finding it's a very disorganized process.  Trying to get the docs to communicate with the test company, and vice versa, has been the hardest part.  Anything out of the routine seems to really confuse them.
 
I feel lucky we were able to do the testing though.  I sure hope they come up with something, since I feel like I've burned through the arsenal.  I've done Adriamycin, Cytoxin, Abraxane, Cisplatin, Navelbine, Avastin, Xeloda, Taxotere, Sutent, and Tarceva, and still the buggers keep coming back.  I have to wonder if there's anything left!  Cry
 
The trouble is, I know that what's left is likely to be "off label" uses of drugs approved for other cancers.  And my #%&@* insurance is consistently denying them.  But that's a whole other story. . .
 
 


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: chicklitzz
Date Posted: Apr 10 2008 at 7:08am
Hi Elizabeth, are you working with Dr. Weisenthal? If you are, I just had them fax me the results when they were in so I didn't have to play the waiting for the doctor to get them game. The results were so that I could understand them, in percentages and such. Maybe that's an option for you. I know that the platinum chemos are suppossed to work really well for the triple negatives, are there any platinums left you can try I wonder?
Don't give up, one of them will most definitely be the magic bullet. If your insurance company wont cover the chemo sensitivity testing I know also that Dr. Weisenthal's office will let you make smaller payments monthly until you can pay it off if you like, that's what I had to do and they were very nice about it. Let us know how it works out, stay strong.
Best,
Michelle   Thumbs%20Up       


Posted By: chicklitzz
Date Posted: Apr 10 2008 at 7:17am

Elizabeth, I heard about a new chemo that came out a few months ago that was just approved for bc, have you heard of this one yet?

 
  http://health.usnews.com/usnews/health/healthday/071017/ixempra-approved-for-breast-cancer.htm - http://health.usnews.com/usnews/health/healthday/071017/ixempra-approved-for-breast-cancer.htm


Posted By: EWKSeattle
Date Posted: Apr 10 2008 at 8:56am
Yep, Ixempra is one of the drugs they will be testing.  Let's hope!
 
My test is being done by a company in Pittsburgh called Precision Therapeutics.  I'm about to call them for a status report.  I'll keep you posted!


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: Vasil
Date Posted: Apr 10 2008 at 9:10am

Nearly the exact same thing happened to my wife.  I will guess that platinum based chemo will eventually become standard of care for TNBC, as opposed to ACT.  Unfortunately, the chemosensitivity tests aren't widely accepted.  However the small scale randomized trials do show some predictive power both for resistance and sensitivity.  We shepherded the tissue to the lab post surgery and followed up with the lab to get the results...its just not commonly done so need to be proactive.

VS



Posted By: cg---
Date Posted: Apr 10 2008 at 9:56am

Dear Elizabeth,

They have an arsenal of chemo agents...and not only do they test the "current protocol chemo" - they also try old ones that have been around for a long time and are still found to be effective and much cheaper than drugs like Avastin/Abraxane, etc.

Hoping you will have your answer soon.

Connie

 

 



Posted By: trip2
Date Posted: Apr 10 2008 at 10:07am
Hi Vasil and welcome to our forum.Smile
 
We appreciate you sharing this information.
 
How is your wife doing?


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Apr 10 2008 at 10:11am
Elizabeth, I'm so sorry you are having to wait so long.
 
If the test shows that you need something that is "off label" wouldn't the
Onc be able to make a case on the situation so that insurance would approve?  How are people getting this done I wonder?
 
Good luck Hug


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: EWKSeattle
Date Posted: Apr 10 2008 at 10:31am

Thanks, Pam.  While I'd like to see the results, I can't claim it's urgent at the moment. 

I had the mets nodes and right breast removed on March 10, and then last week I started 8 weeks of radiation + Cisplatin.  It's the same regimen that I had on the left (original) side a year ago.  And we think that worked really well in terms of local control.  I've had no sign of disease on the left since then, even though there had been extensive disease in those nodes.  So the HOPE is that this regimen will work just as well on the opposite side. 
 
And the ultimate hope (though it's a huge stretch) is that the disease has only ever spread through the lymphatics (not blood), has never left the loco-regional area, and maybe never will.
 
The chemosensitivity test will tell us what drugs might be effective post rads.  (I'll do 3 months of something after this regimen.)  And what will work when and if the cancer pops up somewhere again after that.
 
As for the "off label", it's a mystery.  I tend to get easier approvals for infused drugs, but not for oral chemos.  Which makes zero sense, since the infusions cost them 5x as much on average.  But I guess it's two different departments within the insurance company.  The pill people are the scrooges.  In the end, I have won the appeals, but not without expending a lot of time and energy (as if I have any to spare!).  I tell myself I'm performing a public service, so that maybe the next gal will get approved without the hassle.  Smile


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: cg---
Date Posted: Apr 10 2008 at 10:48am

Dear Elizabeth,

I have been following a new drug called Yondelis.....apparently Johnson&Johnson has paired with Pharmamar and there are phase II trials out there now. It causes apoptosis and it is made from marine life! It is apparently showing results on tumors that have failed to be eliminated by taxane treatment and tumors resistant to other chemos.
 
Connie
 
 
 
 


Posted By: trip2
Date Posted: Apr 10 2008 at 10:48am
Well how odd the insurance companies are more agreeable for the more expensive method of treatment.  What they are supposed to be doing is giving you the medicine that will make you well regardless of if it goes in your port or in your mouth.  Grr, gets me going.Smile
 
Keep us updated,


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: EWKSeattle
Date Posted: Apr 10 2008 at 10:53am
Thanks, ladies.  I'll keep you posted.  And thanks for the tip on Yondelis, Connie.  I'll see if it can be added to the list of drugs they will test!

-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: Vasil
Date Posted: Apr 10 2008 at 11:56am
Thanks for asking.  She feels but has had a local recurrence and possible small lung mets.  Will start more treatment soon. 


Posted By: rosamundejane
Date Posted: Apr 11 2008 at 1:41am
I'm surprised that anyone thinks that chemotherapy always works. It more often than not doesn't. In primary breast cancer having chmeotherapy may increase chances of the cancer never coming back by some percentage points...5%, 10%, maybe 20%...depending on the pathology of the tumour


With recurrent/metastatic cancer chemotherapy may bring about some progression free time, which may affect overall survival time..or not...but eventually the cancer cells mutate and cancer spreads/grows again. Different chemotherapies work in different ways, and may give extra time but chemtherapy is by no means a cure for cancer.

Jane


Posted By: cg---
Date Posted: Apr 11 2008 at 3:38am

Jane,

We hope it always works....we know it always doesn't. But, maybe there are those who have many reasons to chemically attempt to stave off the inevitable end all mortals face .... "Pick your poison" has a real significance to triple negatives...since we do not have very many other options in our arsenal.
 
Connie
 
 
 
 
 
 


Posted By: EWKSeattle
Date Posted: Apr 11 2008 at 6:54am
I'm 39 years old, and my sweet kids (8 and 10) need their mom.  I would walk through fire for them and for this life I love. 
 
So there is no other answer for me than to believe it will work.  And I do believe.
 
Maybe that sounds melodramatic and naive, but my faith is as deep and as real as my terror.  


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: chicklitzz
Date Posted: Apr 11 2008 at 7:29am
Jane, I didn't really think that chemo always worked. I just thought there were varying levels of success. What I wasn't aware of was that there were some that wouldn't work at all, that was never explained to me. I thought it was a great disservice. I just really wanted to let other people know that there are ways of testing the chemos on the actual tumor, something else that I wasn't told, I just stumbled across it on the web. All this and I have what is considered to be the best Oncologist on the West Coast. 
Elizabeth, I'm 39 also and have 3 children, 4, 6 and 13. You're going to be alright, you are not naive, you are not alone, you are a tower of strength. Have you ever heard of Randy Pausch? I just found him, I thought his lecture was amazing and apparantly his book just came out. Take a look on youtube if you get a chance. I'll put a link below for you. He was diagnosed with pancreatic and told he had maybe 6 months in 2006. Look at him now, amazing stuff, really inspiring, I cried, I laughed. Are you taking any naturopathic routes? If you are in Seattle have you seen Dr. Reilly yet? Let me know and take care.
Best
Michelle
 
http://www.youtube.com/watch?v=ji5_MqicxSo - http://www.youtube.com/watch?v=ji5_MqicxSo
 


Posted By: billie
Date Posted: Apr 11 2008 at 12:00pm

Hi Michelle,Does this Larry Weisenthal do chemosensitivity testing on TNBC?Thanks Billie



Posted By: cg---
Date Posted: Apr 11 2008 at 12:42pm
Everyone interested in seeing a really great explanation of the chemoresistance testing should visit this website....it is a place that does testing for Sloan-Kettering, UCLA, and other major institutions in the States.  The pictures are very great explaining everything. It is located in California.
 
http://www.oncotech.com - www.oncotech.com
 
Connie


Posted By: chicklitzz
Date Posted: Apr 11 2008 at 1:02pm
Hi Billie, I'm triple negative and I had my testing done there. They use the actual tumor and send off a sample after surgery to test the different chemos against it to see which ones have the best chance of killing your particular tumor, because they're all different, you just need to tell your surgeon/oncologist that you want this done and they should take care of the rest. You might want to talk to your surgeon/oncologist directly after surgery to make sure it was done.  I hope this been helpful.


Posted By: billie
Date Posted: Apr 11 2008 at 8:14pm
Thanks Michelle,I have to try to figure out a way to get this information out to women just in case they are ever diagnosed with this terrible beast(as some of the women call it)The more knowledge we have,helps get us through terrible times.It is too late for my sister to get this test done,but it is not to late for all the other women out there who may be diagnosed with it(me included)I sell resale clothes on ebay, and I am going to try to figure out a way to put this information in the description.One thing for sure the surgeons are not going to tell women in advance about this.I read this also that this test also in some instances will let a women know if she is likely to have a recurrance.And in my sisters case,there is a strong possibility that she might not have even had to have that terrible poisen Chemo.She had Trip Neg,a very small tumor with no surrounding tissue or node involvement.Yet because she isTrip Neg she has to have Chemo,simply because this is standard procedure for this subtype of BC.
 
Any way Thanks again Michelle(you also might try to get this word out to all the women that you know that have not been diagnosed with BC)This information is certainly info. that they need at the time of surgery.My sisters oncologist said the other day that he is totally amazed at how many BC patitents he is getting..I said it once,but I will say it again.I have never in all my 66 years read the voices of so many couragous women.God Bless all of you.And my prayers go out to each and every one of you.Thanks Again  Billie
 


Posted By: Alma
Date Posted: Apr 12 2008 at 3:36pm
I'm surprised that anyone thinks that chemotherapy always works. It more often than not doesn't. In primary breast cancer having chmeotherapy may increase chances of the cancer never coming back by some percentage points...5%, 10%, maybe 20%...depending on the pathology of the tumour


With recurrent/metastatic cancer chemotherapy may bring about some progression free time, which may affect overall survival time..or not...but eventually the cancer cells mutate and cancer spreads/grows again. Different chemotherapies work in different ways, and may give extra time but chemtherapy is by no means a cure for cancer.

Jane
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
 
Jane, you are a wise woman, clearly having done your homework. I'd like to add a few thoughts to your assessment of cancer.
 
A surgeon explained on his breast cancer/breast disease  website that breast cancer has to be able to do three things in order to kill us.
 
 First, it has to be able to move from its original site. Not all cancers have that ability.  Metastasis happens to even the 30% of breast cancer patients with negative nodes.  So, we are working with flawed information from the get-go. Whatever allows cancer cells to move is not well understood.
 
Second, that moving cancer cell has to be able to stick someplace vital. Again, science does not understand why some cells just keep on truckin' and others settle down in vital places. The concept of "sticky blood" arises in conversations about lipids and cancer, and some think that controlling lipids has value in keeping the cells moving until they can die a natural death.  Has anyone heard of a breast cancer metastacizing to the heart?
 
Third, the cancer cells have to be able to grow where they stick.  Gathering in whatever the cells need is again a process not completely understood.  Basic science is what we need. How can tumors create their own blood network by signaling for paths to be made to them, for instance?
 
The body is the hero in all of this.
 
I read a book on breast cancer last year by a Dr. Chen. (Can't recall the title now and have passed the book on to a newbie, or I'd tell you.)  Anyway, this doctor said that the body could kill cancer cells IF it could recognize them. He maintains that the immune system of cancer patients is just fine. We fight off colds and flu, after all, so our immune systems are doing their job. The problem is that cancer cells are like enemy soldiers wearing suits that make them invisible to the immune system.  The cancer cells "walk" within us with impunity.  If our immune system could see the cells, it would kill them dead.
 
I would like to see approaches to make cancer cells visible to our immune systems.
 
Thanks for your post.
 
Alma
 
 


Posted By: cg---
Date Posted: Apr 12 2008 at 4:04pm

Dear Alma,

 
Sadly, I know of a couple cases where cancer metastasized to the heart. One was a young woman who was at my cancer clinic....diagnosed age 32. She was diagnosed with breast cancer December 20/2006 died December 6/2007. It spread from breast, liver, lung, heart. They even brought in an experimental drug that only 3 in North America had tried.
 
When someone with cancer has a pericardial effusion - essentially fluid around the heart - cancer cells have spread there. Then to relieve the fluid, a pericardial window is made to drain the effusion away from the heart.
 
Connie
 
 


Posted By: CarynRose
Date Posted: Apr 12 2008 at 4:31pm
I was having a conversation the other day with Dr. Ralph Moss, or the Moss Report.  He mentioned that some researchers  are working around the idea about  cancer  possibly turning off certain immune system functions in a similar way to how pregnancy does it.  When a woman is pregnant, in order for the fetus to survive and grow, her body must stop perceiving it as a foreign object.  
 
I found this very interesting.
 
Who knows?
 
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


Posted By: cg---
Date Posted: Apr 12 2008 at 4:48pm
Dear Caryn,
 
Did you buy his report? If you have...do you think it was helpful?
 
Connie


Posted By: EWKSeattle
Date Posted: Apr 12 2008 at 6:42pm

Hi Michelle,

Thanks for the vote of confidence!  I love the Randy Pausch video.  I saw it a few weeks ago, and I think it's the kind of thing worth watching over and over!
 
I am doing some naturopathic remedies.  Though I have to admit that with the Cisplatin regimen I'm on now, I feel lucky if I can stomach anything, even if it's a bag of Doritos.  I started seeing Dr Reilly in November.  He's great.  I see him again on Tuesday.  Are you a Seattle native?
 
Mostly I've been experimenting with the juicer.  I actually sort of like my juice concoctions, even the strong green ones.  LOL


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: Wendy2
Date Posted: Apr 13 2008 at 2:55am
OK I'm new to all this and SOOO thankful to finally find this website, unfortunately not til my TN has mets. to my lung after 2 yrs., but...you're here and I'm glad to have this network.
 
I had a lumpectomy in 06 - I have never heard of this chemo testing. I recently had a biopsy of my lung tumor - is that enough to test or do they need the entire tumor?
 
Frantically researching to decide my best treatment - will go anywhere and pay anything. Had my port put in, but haven't decided exactly what to do yet. My onc. says Taxol & Avastin. Abraxane seems to be what I'm reading on here. Anyone first line mets.? 
 
Thanks again I'm glad you're here.
Wendy


Posted By: Netterz
Date Posted: Apr 13 2008 at 8:21am
Hello Wendy, and welcome, we are glad ou have found us and joined :).
 
I think you might find more of the info you might be searching on in the rec/mets section. The women there have the battle scars of multiple treatments, and clinical trials, alot of helpful info.


-------------
T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI


Posted By: EWKSeattle
Date Posted: Apr 13 2008 at 8:42am
Hi Wendy, and welcome.
 
I think that for the chemosensitivity testing they need fresh, live tumor.  They take the sample and grow it at their lab before they test it, so they have to put it into a special preparation right away upon removal.  So I suspect that the biopsy sample you have can't be used for this purpose.
 
If you ever have another biopsy or surgical removal, you need to call ahead to get the kit.  My test was called the ChemoFX test and was done by Precision Therapeutics.  I had my surgery on short notice, and they were able to fedex the kit to my surgeon and gave instructions to the pathologists.  They didn't need much.  My nodes were only a little over 1 cm, and they took a portion of that.  There are a handful of other companies out there doing this, and I don't know what their requirements are.  Insurance coverage for the test is spotty.  I'm still not sure if mine will pay, but I made up my mind that I wanted the test even if I have to pay for it.
 
Good luck choosing chemos.  The truth is that they don't really know what will work until they try it.  Lots of gals here have had good luck with Taxanes.  If it's a choice between Taxol and Abraxane, I'd take the Abraxane over Taxol.  It's the same drug but in a different preparation, so it requires less pre-meds, steroids, etc.  I asked for Abraxane instead of Taxol 2 years ago and had to fight to get it at the time.  I think it's much more routine now.  Avastin worked very well for me.
 
Wishing you strength,


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: billie
Date Posted: Apr 13 2008 at 10:28am
Hi Connie,Can you are anyone out there answer this question for me?When my sister and I went to her oncologist I asked him. since my sisters BC was caught early(TNBC ,small tumor,chose lumpectomy,was not in surrounding tissue nor the lympth nodes,she starts Chemo May 1,08),What if she chose to have Chemo only in the event that there was a reccurence(her body would certainly be stronger since she did not have to deal with the poisen Chemo)He point blank said, that they do not have any way to treat her.I do not know why I did not ask him at that time to expain himself,I just didn't.Does any body know what he meant by that remark??????Yes I think that we all know that cancer can not be cured completely.Only put into some type of remission.
 
I am very much interested in oncotech.com.for knowledge for my sister and I.Alot of these different testing places do not mention testing for TNBC.But I asked Michelle(chicklitzz) and she said they did the testing for her and she is TNBC.   Thanks Billie


Posted By: Cookie
Date Posted: Apr 13 2008 at 10:49am
I had my lumpectomy in Jan. 07. Yes, like many others I was never told that my tumor could be tested for a number of things. I am so mad about that, I'd think it is malpractice. Had I known, I certainly would have had it tested.
 
That being said, are there any tests now that can be done either on me or on whatever tumor the hopsital may have although it isn't stored in saline solution?
 
I had my first 4 chemos, dose dense. Due for my radiation then 12 more chemos, Abraxene and a carboplatin. Any thoughts? See, had we had the tumor tested we would have known in Jan what would work, now I have to worry until I die.
 
Cookie


Posted By: cg---
Date Posted: Apr 13 2008 at 11:26am
Dear Billie,
 
Think of it this way....you found one termite in one piece of wood. Even though you got rid of the one piece of termite damage....you still treat the whole house. It is wonderful that your sister's cancer was caught so early....but the doctor is offering damage control. They are finding out now it is better to treat TN aggressively right from the start rather than a wait and see approach. The "other breast cancer" hormone receptor positive - has the opportunity to be controlled by antiestrogen medications.  TN does not have that treatment option. 
 
With all the loving support your sister has in you...along with the information you gather to make her treatment easier - she will hopefully stomp out any cancer cells that may be hiding waiting to do some damage later on down the road. The hormone positive breast cancers do not respond as well to chemo...so chemo is our big treatment gun to use.
 
I hope I have in some way helped in answering your question.


Posted By: Alma
Date Posted: Apr 13 2008 at 3:47pm
Originally posted by billie billie wrote:

Hi Connie,Can you are anyone out there answer this question for me?When my sister and I went to her oncologist I asked him. since my sisters BC was caught early(TNBC ,small tumor,chose lumpectomy,was not in surrounding tissue nor the lympth nodes,she starts Chemo May 1,08),What if she chose to have Chemo only in the event that there was a reccurence(her body would certainly be stronger since she did not have to deal with the poisen Chemo)He point blank said, that they do not have any way to treat her.I do not know why I did not ask him at that time to expain himself,I just didn't.Does any body know what he meant by that remark??????Yes I think that we all know that cancer can not be cured completely.Only put into some type of remission.
 
I am very much interested in oncotech.com.for knowledge for my sister and I.Alot of these different testing places do not mention testing for TNBC.But I asked Michelle(chicklitzz) and she said they did the testing for her and she is TNBC.   Thanks Billie
 
Billie, I do not know what the doctor meant. Perhaps you/your sister would benefit from asking him to explain.  Don't be shy.  It's too much to ask of patients to be able to absorb/understand all the angles of treatment decisions. The smart docs encourage follow-up questions.
 
I would like to know about any studies that show that earlier treatment is preferable to treatment later  when metastases appear. Does anyone have a reference?
 
When the doc said they "do not have any way to treat her," I cannot imagine what he meant. There are many drugs available, as you see from the signature lines in this forum.  And if a particular drug is expected to work neoadjuvantly, when why would it not work for mets in the 'virgin' patient?  Your logic is reasonable and requires a further discussion with that doc.
 
If you have more doubts after a followup consult, consider going for a second opinion at a place that sees a lot of TN cases.
 
Good luck,
Alma
 
 
 


Posted By: CarynRose
Date Posted: Apr 13 2008 at 3:59pm
CG -- Sorry it took so long to respond.  No, I have not bought Dr. Moss's report.  CTCA asked me to sit on a panel of doctors and patients that he interviewed for a report that he's going to do on CTCA.  Afterwards, he sat with us and we discussed many cancer topics.
 
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


Posted By: CarynRose
Date Posted: Apr 13 2008 at 4:03pm
Billie,
 
I think your sister's onc meant that for TNBC there are no known targeted treatments other than chemo, like there are with hormone positive cancers.  There are a number of chemos to try, but only chemo.
 
Hopefully, there will be breakthroughs in finding targeted treatments for us TN'ers.
 
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


Posted By: jsouthy
Date Posted: Apr 13 2008 at 5:18pm
I ordered Dr. Ralph Moss's report in October of '06, I think. He sends out updates when available and I have an updated version since then. I have it on file. I don't remember anything being said about NOT sharing it with others. I could probably email it to you if you like, it is 200-300 pages, at least.
It is very thorough regarding conventional and alternative treatments.
You can also get his weekly newsletter for free if you go to his website and sign up. http://www.cancerdecisions.com - www.cancerdecisions.com
His newsletter today spoke of an upcoming documentary on PBS:
 
On April 16th, PBS will air a 2-hour long documentary titled "The Truth About Cancer."

The film explores the current state of knowledge concerning cancer and seeks to understand why the disease continues to be so often fatal in spite of the elapse of more than three decades since the congressionally mandated War on Cancer began.

You can read about this documentary and check local PBS listings here:
http://www.pbs.org/wgbh/takeonestep/cancer/about.html - http://www.pbs.org/wgbh/takeonestep/cancer/about.html

Contributing to the documentary was Guy B. Faguet, MD, whose excellent book, http://www.amazon.com/gp/redirect.html?ie=UTF8&location=http://www.amazon.com/War-Cancer-anatomy-failure-blueprint/dp/1402036183?ie%3DUTF8%26s%3Dbooks%26qid%3D1207941239%26sr%3D8-2&tag=cancerdecisio-20&linkCode=ur2&camp=1789&creative=9325 - The War on Cancer , I reviewed two years ago in this newsletter:

To read my review of Dr. Faguet's book please click or go to:
http://www.cancerdecisions.com/040206.html%20 - http://www.cancerdecisions.com/040206.html

Joanne



-------------
dx 8-06 Triple negative
stage 2B 1+ out 19 nodes grade 3
lumpectomy
re-dx 1-07 stage 3
epirubicin/cytoxin 3 rounds
mastectomy
re-dx 1-08
liver, skin, bones mets
stage 4
AGE 47


Posted By: cg---
Date Posted: Apr 13 2008 at 5:20pm
Dear Caryn,
 
I ask because I was tempted to purchase his report - apparently it is 200 to 300 pages. 
 
I understand he has mellowed his position somewhat regarding chemotherapy and I wondered if you had any direct knowledge.
 
I imagine it was an education to be able "pick his brain" so to speak.
 
I cannot tell you how much I admire you for your contributions and ongoing involvement to enlighten and support other women with triple negative breast cancer. You are a role model.
 
Connie
 
 


Posted By: jsouthy
Date Posted: Apr 14 2008 at 3:34am
I just opened up my file with his breast cancer report and it is 500 pages!
Joanne


-------------
dx 8-06 Triple negative
stage 2B 1+ out 19 nodes grade 3
lumpectomy
re-dx 1-07 stage 3
epirubicin/cytoxin 3 rounds
mastectomy
re-dx 1-08
liver, skin, bones mets
stage 4
AGE 47


Posted By: chicklitzz
Date Posted: Apr 17 2008 at 4:22pm

Hi Elizabeth, here I am...I live on the Key Peninsula, past Gig Harbor, and yeah, the sun is shining. I'm sorry to hear about the Cisplatin, I had that as well, I noticed, with me anyway, that that the worse the symptoms the better the chemo seems to work, so hopefully it's kicking butt for you. Rads stink but so much better than chemo, will you be doing rads? If you do make sure you get a prescription for Biafine, that really really helped my skin. That's great you're seeing Dr. Reilly, everyone says he's the best. I still need to make my first appointment, I'm all set up and he has my reports, I just need to make the actual appointment. Do you think it's worth it? What does he do for you exactly? I am two weeks out of radiation and I am taking a break from doctors, no doctors, no doctors!!! I'm juicing also, it sure seems to make me feel better. I'll share my juicing recipe with you if you share yours with me...

Juicing:
 
Spinach (lots to get just a little juice)
Broccoli
Cauliflower
Carrots
Oranges
Apples
Beets (yuck! they're suppossed to be really good for us though)
tomatoes
I tried juicing tumeric root, that didn't work very well
I'm thinking about adding cabbage, I'm hearing really good things about cabbage, unsure if you can juice it though, I'll try.
 
 
Here are my supplements:
 
Vit C 1000 mg
Fish oil 2000 mg
600 mg omega 3 fatty acid
Calcium 1200 mg
CoQ10 200mg
Vit E 800 iu
Spirulina 3g
Max3 IP-6 800mg
Multivitamin
magnesium 250
tumeric root extract 300mg
Goji berry 400 mg
Vitamin D 15000 a day (I'm not sure if I'm absorbing it, my levels are not rising after months of taking excessive doses)
Selenium 200mg
Flax seed oil Large Tbls
 
LOL
 
Wow, can you believe it? I'm the posterchild for SuperSupplements!
Talk to you soon.
 
Best,
Michelle
 
 
 


Posted By: CarynRose
Date Posted: Apr 17 2008 at 5:06pm
Cg --
 
I'm sorry I haven't responded sooner.  I never saw your posting -- don't know why -- until tonight.
 
Compared to what I'd heard about Dr. Moss, I guess he has mellowed.  He clearly said that when chemo/rads have been proven to work, by all means, use them.  He just wants 'conventional' medicine and 'alternative' medicine to work together and not 'poo poo' each other.
 
Thank you very much for your compliment.  I hope my posts can help others and that we all can help each other beat this.  We HAVE to.  I'm touched that you think I'm a role model, very touched.
 
Best regards,
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


Posted By: jsouthy
Date Posted: Apr 17 2008 at 5:22pm
Hi Michelle,
I went to a holistic health spa in Florida last summer for 3 weeks where juicing has been going on for over 30 years. They recommend a base of cucumber and celery. They give a lot of juice and are extremely nutritious. I usually add some leafy greens, like kale, chard, romaine or spinach and either parsley or cilantro. It really helps with many things! I also grow and juice my own wheatgrass, seperatly, everyday! It is very healing. There was even a study that showed it helped with chemo side effects.
 
Is the vitamin D you are taking Vitamin D3 and is it a pharmaceutical grade product?
 
I think that doing anything and everything to build and support the body and mind during treatment, after treatment, from this day on, could add years to our lives! Don't you?
 
I do the following:
 
reflexology
massage
accupuncture
chiropractics
colonics
chinese herbs
visualization
goal setting
prayer/bible reading/church
several supplements
far infrared sauna
daily aerobic exercise
whole food, mainly plant based diet
limit processed foods (can't quite alleviate them!)
 
Joanne
 


-------------
dx 8-06 Triple negative
stage 2B 1+ out 19 nodes grade 3
lumpectomy
re-dx 1-07 stage 3
epirubicin/cytoxin 3 rounds
mastectomy
re-dx 1-08
liver, skin, bones mets
stage 4
AGE 47


Posted By: cg---
Date Posted: Apr 17 2008 at 5:36pm
Dear Caryn,
 
Very heartfelt in what I said to you.....
 
I wanted to share something that was just released March 27, 2008
 
by Indiana University Hospital - regarding Phellinus linteus  - I found it as a press release on Medwire but I cannot figure out how to bring it to the site so it will open.
 
But, other research done is very interesting.....regarding its anti-tumor activity - look down through the pages and find the mushroom has a 96% inhibition of cell proliferation.
 
I have asked my son to look for it in Vancouver because I cannot find it here.
 
 
http://www.phellinus-research.com/Pdf/Phellinus.pdf - http://www.phellinus-research.com/Pdf/Phellinus.pdf    


Posted By: Elaine
Date Posted: Apr 17 2008 at 6:14pm

Billie - I'm just wondering if he meant that aside from Chemo that he has no way to treat her.  Because that is true.  Chemo is really all we have  - and radiation.

 
 
Mary's Mom
Elaine


Posted By: EWKSeattle
Date Posted: Apr 20 2008 at 2:41pm
Hi Michelle,
 
I'm actually doing radiation now, in combination with Cisplatin.  It's a nasty combo, but it's been effective for me in the past.  And like you, it seems like only the really nasty chemos are really effective.  Cisplatin and AC have given me great results.  Less impressive results with most of the others.
 
I've been on some of those supplements you listed.  But the mix changes a lot depending on what chemo or other treatment I'm doing at the time.  Whenever the regimen changes, Dr. Reilly advises different combinations.  I'm surprised sometimes at how chemo-specific it is. 
 
If you decide to come back from your break, I do think it's been worth my time and effort to see Dr Reilly.
 
Happy juicing!


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: PineHouse
Date Posted: Apr 20 2008 at 7:57pm
Hi all,
 
I just had the Weisenthal tumor sensitivity done Jan 08.  At that time my oncologist needed some "guidance" to decide which chemo I should do next, given the fact that I am stage IV and my tumors have been continuously growing through various treatments since June 07.
 
The Weisenthal report suggested that my tumor was sensitive to Navelbine.  So my oncologist prescribed Navelbine+Xeloda.  Unfortunately my chemo-sensitivity was false for me, the Navelbine+Xeloda treatment failed.
 
So, I don't want to spoil the fun, but chemo-sensitivity is believed to be not always accurate (and I knew this before I got tested), that is why it is not offered to everyone and it has not been adopted as "standard".
 
If I had the chance again, I would probably still do the testing, just out of curiosity, but I'd have to remember that it is not highly accurate.
 
I wonder if Weisenthal Group has any statistics of how many patients their testing were accurate and how many were inaccurate.


-------------
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/


Posted By: PineHouse
Date Posted: Apr 20 2008 at 8:11pm
Elizabeth,
 
I have also gone multiple chemos (AC->T, CMF, Taxotere in adjuvant settings, and for metastatic: Avastin+Taxol, Carboplatin, PARP Inhibitor, Navelbine+Xeloda).
 
I am currently on Avastin+Ixempra, but the insurance already denied the Avastin.  I am in the process of appealing, at the same time the doctor's office also contacted Genentech for patient assistance.
 
But I foresee a HUGE problem (with insurance co.) beyond the current treatment.
 
I do have a stage IV disease, but I do not yet have any symptoms from the cancer itself.  I'm still fully functioning, but yet I have gone through almost all of the approved breast cancer drugs.  After Doxil, Abraxane, and Gemzar next, there will be NO MORE drug I can take.  I will have to go to "off label" and novel drugs like Erbitux, Tarceva, Sprycel and for sure it's going to be an uphill battle with the insurance company.
 
I can't really go the clinical trial route (for free novel drugs) either, because I don't qualify for most of the trials because I have had so many treatments.  They generally only allow up to 3 prior chemo regimens.
 
Anyone else have this problem?


-------------
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/


Posted By: EWKSeattle
Date Posted: Apr 21 2008 at 6:11am

Pinehouse, your situation sounds much like mine.  2 years of multiple drug regimens.  But no real effects from the cancer itself, for which I count myself very lucky. 

Can I ask why they denied the Avastin?  I thought it was approved for BC?  It makes me nervous because I did have good luck with Avastin last year, and hope that I may be able to go back on it again when I need to.  Confused  I was NED for 9 months last year doing 4 months of Navelbine and Avastin, and then Xeloda and Avastin.  I sure hope you'll get the Avastin.
 
I think the insurance coverage is going to be the defining issue for me (if it isn't already).  It's a bitter pill because the way I cope with this disease is by trying to seek out the positive aspects of every experience, but the insurance company battles are thoroughly negative.  No upsides to be found.  I've looked at all the trials to see how many I would qualify for if I had no other options today, and I'm excluded from all of them because I've done so many rounds.
 
Still waiting for my chemosensitivity results.  The cultures have been ready for over a week, but we got hung up in lost paperwork, and my onc hasn't even told them which drugs to test yet.  Grrrrrrrrr.
 
I just keep hoping I can hang in long enough with the approved drugs till they can approve more.  But the process is just so slow.


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: chicklitzz
Date Posted: Apr 21 2008 at 8:55am
Hi Elizabeth, just curious, have you tried any of the new epothilones that have just come out, I know there is ixabepilone or the one listed in the trial below. I'm hearing very good things as far as efficacy towards the trip negs. Bayer has a study out that is available in our area, here's a link below. If your not eligible for the study maybe an epithilone based regimine is worth looking into and discussing with your oncologist?
Also, I was curious, are you taking turcumin? Talk to you soon. Look the sun is shining! Atleast for another 5 minutes until it snows again. Strange weather lately.
 
Best,
Michelle
 
http://clinicaltrials.gov/ct2/show/NCT00313248?intr=Epothilones&rank=18 - http://clinicaltrials.gov/ct2/show/NCT00313248?intr=%22Epothilones%22&rank=18
 
 


Posted By: EWKSeattle
Date Posted: Apr 22 2008 at 9:00am
Hi Michelle,
 
I havent tried Ixempra yet.  We're holding it in reserve to see how things go and what kind of luck we have getting some other drugs that are being tested on my tumor (hopefully as we "speak")
 
I did take curcumin when I was on Xeloda, but Dr Reilly stopped it for the Taxotere and Cisplatin regimens for some reason.
 
Back to bed now.  Chemo hit me very hard yesterday.


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: EWKSeattle
Date Posted: Apr 28 2008 at 3:29pm
Chemosensitivity results are in.  The tumor in vitro was responsive to Cytoxan and Irinotecan.  I got "intermediate" response to Carboplatin and Topotecan.  Non-responsive to Doxorubicin (Adriamycin), Taxotere, Taxol/Abraxane, Gemzar, Navelbine and Etoposide.
 
I already knew the taxanes didnt work for me, but I'm bummed that Gemcitabine didn't help.  It's one of the few BC-approved drugs I haven't tried yet.   And I was surprised that Doxorubicin didn't work, given how dramatic my initial response was to AC.  But maybe it was the C in the AC that was doing it?
 
I'll see my onc on Wednesday and see what she has to say. . .


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: cg---
Date Posted: Apr 28 2008 at 4:11pm
http://www.breastcancerupdate.com/bcu2007/6/panel.asp -
 
 
 
http://www.breastcancerupdate.com/bcu2007/6/panel.asp
 
Dear Elizabeth,
 
This is why I am such a believer in the tumor testing. The triple negative standard treatment (taxanes - Carboplatin) did not seem to work on your tumor.
 
Cyclophosphamide(Cytoxan) and Irinotecan - are considerations. I wonder if your oncologist will try the Cytoxan again on a weekly regimen?
 
I was looking for studies for you and I came upon the website above. I am not sure how it works - but for the more technically-gifted it could prove interesting to navigate the discussions.
 
Please keep us updated on what your oncologist decides to do.
 
Connie
 


Posted By: trip2
Date Posted: Apr 29 2008 at 5:09am
Elizabeth thank you for letting us know.  Fascinating to have something like this in your hand and records so that treatment can be directed towards your situation.
 
Please let us know what your Oncologist has to say,Hug


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: EWKSeattle
Date Posted: May 01 2008 at 6:06am
Looks like I'll start doing Irinotecan and Etoposide in June after I'm done with Cisplatin and rads.  My onc had favored this as the next step anyway, and the chemosensitivity test would seem to support that.  She trained with chemo guru Robert Livingston, and says he likes that combination for chemo-resistant BC.  There are some promising trials on Irinotecan (also called CPT-11) in breast cancer just finishing and ongoing right now.  
 
Pray insurance doesn't object. . .
 
Also, I saw a fascinating panel on BC last night here in Seattle.  Most interesting was Nora Disis at Univ Washington who is doing great work in breast cancer vaccines.  They are pretty focused on vaccines that work with Her2 overexpression, but her slides indicated that EGFR (which is basically Her1) is a potential area for vaccine work.  I'm EGFR positive, and I read somewhere recently that most basal subtype BCs overexpress EGFR.  EGFR gets a lot more focus in lung and colon cancers, so vaccine trials may be geared there unless we start to get some focus on EGFR for triple negative BC.  (Dr Carey talked about EGFR inhibitors in her recent teleconference.) I'm going to try to research more of this in a few weeks when the cisplatin/rads fog clears.


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: trip2
Date Posted: May 01 2008 at 6:18am
Thank you Elizabeth for the update, sounds like these may be the meds that will work for you.
 
I appreciate the information you have shared too.  Very interesting.
 
Hold tight and let us know how you are doing,Hug


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: CarynRose
Date Posted: May 01 2008 at 7:36am

Elizabeth,

My oncologist has the same thinking about EFGR.  Since 65% of basal cell cancers overexpress EFGR, he's got me on suppressant therapy that includes Erbitux (EFGR 'inhibitor').  They say you know it's working because of the acne that shows up.  If so, then it's working like mad on me.  I'm NED and have zits all over my face and body.  Whoopie???!!!  Yes, Whoopie!!!
 
Here's to more progress!!
 
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


Posted By: EWKSeattle
Date Posted: May 01 2008 at 7:45am

Yep, I'm on Tarceva (erlotinib) and I've got zits all over my nose!  For the first month the acne rash was everywhere on my face and neck and scalp, but it's mostly cleared up.  Except for the nose.  It's also made my nose all swollen and red, so I suddenly bear a stronger resemblance to my various alcoholic uncles.   

I've clearly evolved as a woman when I'm happy to see each new zit. . .



-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: elenasabo
Date Posted: May 01 2008 at 12:43pm
Hi all,
 
Does anybody have the name of the test for the chemo sensitivity or a lab that does that. I can't seem to explain that to my dr. Is this something very new?
 
Thanks


Posted By: chicklitzz
Date Posted: May 01 2008 at 2:34pm
Elizabeth and Caryn, get this. About a year before I was diagnosed I stopped taking Accutane for acne, I was on accutane for over a year. Come to find out that Accutane is an efgr suppressor. My personal belief is that accutane was suppressing my efgr and when I stopped it, my cells just went haywire and out of control and hello bc diagnosis. I wonder if suppressors shouldn't be easily backed away from concerning intake so the body doesn't do the roller coaster thing and go out of control. What do you think? 
 
Vitamin D deprived in Washington,
Michelle Star


Posted By: EWKSeattle
Date Posted: May 01 2008 at 3:24pm
Wow, Michelle, that is fascinating!  Makes ya wonder. . .
 
Along similar lines, it turns out aspirin has anti-angiogenic qualities, so it's perhaps a poor man's Avastin.  Same with Cytoxan, apparently. 
 
elenasabo, my test was done by a company called Precision Therapeutics in Pittsburgh PA.  Theirs is called the ChemoFX Assay.  They are easily found on the internet.  Others have used one called Weisenthal, I think.  Yes, they are relatively new and many oncs won't be familiar.  Knowledge is power!!!


-------------
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.


Posted By: steve1
Date Posted: May 13 2008 at 7:36am
You need to be very careful with Precision Therapeutics Elizabeth.  There is no data behind their technology and the company is NOT new.  They have been around for over 10 years and have never successfully published any validation for their technology in an American medical journal.  Thier test is extremely expensive and there is, unfortunately, no evidence that it even works.  Readers - do your homework before throwing your support behind unproven technology.


Posted By: chicklitzz
Date Posted: May 13 2008 at 6:25pm
Hi Steve, from what I understand the chemosensitivity testing is fairly accurate, about 80% accuracy on the low end. I don't know about Precision therapeutics but the Weisenthal assay worked really well for me. My onc thought it would be a good option for my case as well. I only wish I had known about it sooner. I had already tried Abraxane during neoadjuvant therapy and the tumor grew larger while I was on chemo. After surgery I had the Weisenthal assay done and it did show that Abraxane would not be a good option for me. I wish I would have had the Weisenthal in the beginning, it would have saved me alot of heartache and possibly prevented mets.  As far as I'm concerned 80% accuracy is pretty darn good when you've been playing the number game after diagnosis. Just my personal opinion.
 Michelle Wink
  



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