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To Chemo or Not to Chemo

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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2009 at 8:42pm
Sometimes my brain gets ahead of my fingers...I meant what IS CEA.. but I found it with the link you gave me for KI67.
 
Thank you...can always count on you for help.
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2009 at 12:58am
Dear Carol,

KI67 is the "proliferation index" or the likelihood that the particular cancer cells would spread. My wife's was 70%. We were told that TNBC, higher grade, younger age and KI67 all sort of go hand in hand. It should be on the first biopsy report that shows your tumor's ER/PR status.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Marla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marla Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2009 at 1:00am
Hi -
My CEA which is a type of tumor marker report was 0.8 - anything <2.5 is good for a non-smoker or <5.0 is good for a smoker. There is also a a tumor marker report called CA 15-3, mine was 15, you want that to be <32. With those numbers I was hoping for fewer chemo treatments. But my Onc said that those numbers do not indicate micro metatisis. So it's merely a base line. Those two tests are done by blood tests. But I need more information as to want it does mean, not what it doesn't mean.
 
 I'm still wating the report for cell search, another blood test. I should have it Wednesday, but again only a base line. No matter what I'm stuck with this chemo!
 
Marla
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2009 at 1:07am
Dear Marla,

Tumor markers in the blood are notoriously unreliable. My wife has not had hers done so far!
Do the chemo, rads or whatever your oncologist recommends now.



Edited by unklez - Nov 22 2009 at 1:08am
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2009 at 6:12am
Unklez,
I looked on the path report from the core biopsy and the surgical path report. Couldn't find anything, unless of course I can't see the forest for the trees. Would you like me scan them and email them?
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2009 at 6:22pm
If you like I can take a look.... send it via PM.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clicrowley Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2009 at 8:14pm
Hi,
I am 32yrs. I decided to say no to chemo but yes to radiation. I had my lumpectomy back in 3months ago. My tumor was o.8cm with clear margin and neg lymph nodes.  On Dec 7th I begin
my radiation treatment for 6wks. I understand many people to include some family do not agree, but I feel confident with my decision.
FYI: I have been married for 11yrs and have a 6yrs old girl.
Maybe some day I will feel differently, but for now I am truly happy with  my decision
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2009 at 9:35pm
Originally posted by clicrowley clicrowley wrote:

I decided to say no to chemo but yes to radiation. . . .
Maybe some day I will feel differently, but for now I am truly happy with  my decision


Welcome to this forum.  The decision for any treatment plan is truly a personal decision after weighing all your options.  You are part of this TNBC community and we will support you along your journey. 

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2009 at 11:58am
Hi Clicrowley and welcome,
 
Thanks for sharing your story and absolutely the decision is up to you on what if any treatment you decide upon.
We hope you will keep us updated on how you are doing, we are always here for questions or just to listen.
 
One thing I would like to ask is if you have any familial cancer history?  If so it would be wise for you to speak with a Certified Genetic Counselor to see if you qualify for the brca 1/2 test.  Many TNBC women are brca 1 and  some brca 2.
 
Also these mutations can be passed not only thru your mother but also your father could pass the gene.  Sometimes these mutations can even appear to skip a generation as you will see below.
 
 
 
 
 
 


Edited by trip2 - Nov 28 2009 at 12:30pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suzannek Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 5:25pm

Hi Marla

It's been  14 months since I was diagnosed with TNBC and I went through the usual treatment (!6 weeks chemo-4XAC, 4XTaxol)radiation plus 2 surgeries. No it wasn't fun but I'm alive and almost fully recovered. I got to meet a new grandchild this August. It sounds like you have a very loving family that really would miss you if you didn't do what was necessary to be with them.
My oncologist didn't care for the cold cap idea. Very rarely TNBC migrates to the scalp and the cap would prevent those potential cancer cells from being killed. Also though it does preserve some of your hair, you have to be very careful with it as it is fragile. You probably wouldn't have as nice of head of hair as you do now.
I know you are over whelmed right now. Take some time to weigh your options. Lots of us have gone through chemo here and are alive because of it. You very well could get away without doing chemo but you would be worrying even more 'what if it came back'.
I too lost a mother to Alzheimer's. I remember thinking when I got this thing that at least I wouldn't have to worry about Alzheimer's anymore. Death by BC isn't very pleasant (not that this will happen but you do want to avoid it ). Your kids and grandkids want you around. Please consider them.
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3
Lumps removed 10-07-08, 10-27-08
nodes clean:
Began chemo 12-2-08
4xAC, 4xT dose dense
3 weeks radiation
http://suzannekesten2.blogspot.com/
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LRM216 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 9:05pm
I agree completely with Sue's above post.  I had the exact same treatment and am just finishing up my last two boosts of radiation (33 treatments, last 5 were boosts).  My oncologist absolutely refused the cold cap idea - so bald I went!  Have about 3/4 of an inch of pure white hair in front and sides, and darker in back - last chemo was 9/10/09.  While it wasn't fun, it was all doable.  I worked full time throughout it all, raise a 14 year old grand-daughter (now, THAT is hard!) am a widow, age 62 and got through it all fine.  Shoot it with every gun you can.  Good luck and God bless.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 10:58pm
Dear all,

My wife did not use the cold cap but I have a hard time believing that cold caps would somehow reduce the efficacy of chemo. Consider that brain, not scalp, is a possible mets site. Most chemos for early BC, such as AC==>T, do NOT cross the blood brain barrier.

Doctors in US just do not want even the remote possibility that something would interfere with the treatment they are able to offer. I feel that this has more to do with the fear of being sued than anything based on solid belief.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2009 at 11:21pm
They say chemo is not supposed to cross the blood barrier however I did a term paper on chemo brain and after reading many studies, some have concluded there is definite brain activity [ or lack of] even if they cannot figure how it is happening. I do not remember detail but can look up my paper for verification on studies. They have found thru imaging, changes in the brain. Now for those concerned over chemo brain, what it generally showed was those with chemo brain, eventually came to the same conclusions, it just took the brain much longer to work. awareness of chemo brain has been around since the 70's but real studies were not started until this century. So basically the last 10 years or less. New imaging technique has been able to substantiate findings.
 
I did the paper 2 years ago, so the information is off the top of my head. I can look it up somewhere on my computer if needed. [ for those that don't know, i am not that adept, otherwise I would do it now for you.]
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 12:05am
Dear Kirby,

Thanks for the info on your term paper. This sounds very interesting and I'm definitely curious to know more. Please send me a copy by PM if you can.

Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 1:00am
First, let's address mets to skull. I had a craniotomy because one of the top neuro-oncologists at Vanderbuilt Medical Center was 95% sure I had mets to my skull. Thankfully, he was wrong. So breast cancer can met to the skull. Now I'm not commenting on cold caps just about skull mets.
 
Second, I can attest to chemo brain. I always considered myself as being fairly intelligent and articulate but since chemo it seems I can't get two sentences together at the same time. I can be in the middle of a thought and it just leaves me. I feel like an idiot and for those who aren't familiar with chemo brain think I'm nuts when I mention it.
Some would say that I'm just getting old. I would never, never admit to that....LOL..
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2009 at 5:07pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suzannek Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 8:54am

I am addressing Unklez's statement that doctors don't want to recommend anything that might interfere with treatments to avoid lawsuits. Well also they might just want to try to save your life. But I agree that scalp mets are very rare compared to brain mets.  ACT does not cross the blood brain barrier but it can interfere with the brain's functioning indirectly by stopping the synthesis of key neurotransmitters for example (speculation). I am involved in a chemobrain study that measured how I performed tasks while under a fMRI before chemo, during chemo, and a year after I started chemo. I agreed to do this only if they shared with me my individual results-still not finished.

But I agree that there are some statements that doctors make that are more based on avoiding culpability than scientific fact such as : You had that tumor for years so it doesn't matter if we take a month or so to deal with it. Well in that month, I went from Stage 1 to Stage 2 doubling my chances of distal mets. Many on this board have had the same experience but I think the physcians are trained to say by their lawyers-'Oh that's impossible' despite evidence by their own labs. 'The ultrasound measurements must have been wrong.'
 
As for medications interfering with treatment, recently it came out that many antidepressants make Tamoxifen useless. Not pertinent here to us with TNBC but is very important to our ER+ sisters. Less clear is taking heavy doses of antioxidants while in treatment possibly blocking the oxidative damage to cancer cells.
Sue Age 56
Stage 2A, no nodes 3 cm, TNBC,Grade 3
Lumps removed 10-07-08, 10-27-08
nodes clean:
Began chemo 12-2-08
4xAC, 4xT dose dense
3 weeks radiation
http://suzannekesten2.blogspot.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 9:33am

My philosophy has been that if my oncologist, who is highly regarded by her fellow doctors, has an extensive and broad knowledge of how she is treating me, is as up to date on triple neg as she is ER/PR+, and feels that I should not be doing something, such as a cold cap, then I just don't question her - her reasoning is good enough for me.  I personally do not see why those that want to use the cold cap are so dedicated in their pursuit of it, as I figure, if I am going to lose "some" of my hair, or suffer patchy loss, then I may as well just lose it all and wait until it grows back.  I just don't see where there is any real advantage to using it.  It's not like it guarantees no hair loss whatsoever.  I have yet to meet anyone that still had a full head of hair after trying it (must admit, however, I only know of 3 gals). 

I do wish those that are using it, or plan to, full success and satisfaction in the results.
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 01 2009 at 10:54am
Suzanne,
Good point. I had not considered the possible indirect effect of chemo in preventing brain mets and how cold caps might inhibit that action.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Marla View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marla Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2009 at 10:05pm
Hi I have been away for a while waiting to begin chemo in FL. I'm scheduled to begin Jan 6th. Now my quess is about the port. I'm only supposed to get 4 chemo treatments. I' really against having a port put in. Does anyone have any advice or comments?
Marla
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