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KeepBreathing View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KeepBreathing Quote  Post ReplyReply Direct Link To This Post Topic: New and need community
    Posted: Sep 09 2009 at 7:27pm
triple negative diagnosed June 24th 2009 (I found a painful lump) 1.5 cm
mastectomy July 16, 09, 2mm margin surgery Aug 16th-clear.
neg lymph nodes.
BRCA 1 and 2 neg

My oncologist wants me to do 4 rounds at 3 weeks of Taxotere + Cytoxan. After that she wants me to take Bisphosphonate either through a clinical trial (pill form) and if its too late for that and I cant get in, the same drug by IV every 6 mnths for 3 years!!! Im getting a 2nd opinion next week.

Anyone have experience with these drugs?

will someone please tell me what is CT and what is ACT?

anything else??
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2009 at 7:52am
Dear KeepBreathing,
 
Welcome to the site and as we all say, we are sorry that you had to search for us.
 
Here are links for the chemo regimens you asked about. The CT is Cytoxan and Taxotere, and the ACT is what my daughter Lori had and it is Adriamyicin, Cytoxan and Taxotere. Lori had all 3 every 3 weeks for 6 treatments, but each oncologist recommends what they feel is best for you.
 
 
this is a list of some of the chemo regimens.
 
 
Taxotere
 
 
I will send you a private message with my email so that I may send you directions for retrieving all the resources from here on the site, and much more info also.
 
I see where you have already had the BRCA testing, and that is a good thing, as many are not having the test until after all their treatments are finished. Th results do affect your treatments and decisions. You are also very wise to get a second and even third opinion.Clap
 
Since I am not a fan of the bisphosphonates, and there are many lawsuits pending on them, I will let someone else reply to that.
 
Many hugs....and again...welcome.Wink
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2009 at 8:09am
I've had the same chemo TC - just finished the 3rd round of 4 treatments.  You've found a good forum for information and discussions about TNBC.

I posted a topic last week under TNBC Talk.  There was some discussion and information from others that have taken bisphosphonates.  I hope this might help you with your questions about the trial.

Topic: Bisphosphonates Clinical Trial - any info


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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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2009 at 1:25pm
Dear Donna,
 
I am taking clodronate 1600 mg a day recommended by my oncologist.  Denise (dmwolf) is also taking it and there are other women actually in the clinical trials.  I have absolutely no side effects from the clodronate - the injectables are different and there is more discomfort and there is a much larger concern regarding osteonecrosis of the jaw following dental work with the injectables.
 
Please ask your oncologist for ALL the relevant data so that you may make an informed decision.
 
I have 3 positive lymph nodes, vascular invasion, high Ki-67, and other worrisome features to my tumor...SO - I took out the bisphosphonate insurance policy by taking the oral clodronate just on the off chance it gets me through the threat of recurrence.
 
Love,
Connie
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2009 at 5:27pm
Dear Donna,

welcome to TNBCF....I am sure you will get some more responses to your questions...

I know it is a long drive but I wanted to mention that there will be a lunch in Campbell (near San Jose, I think) Sunday Sept 20th at noon at aqui restaurant..

If you PM KIrby I think she can tell you who's coming...I live in Los Angeles but planned my monthly weekend to visit my son and his family (they live in Los Altos Hills) so that I could go to my first lunch.

I am very impressed by how generous the women here are with their knowledgeable and how genuinely supportive they are. If possible it might be a nice opportunity for you to meet some of our community..

again, welcome..

all the best,

Steve

p.s. my daughter's painful lump turned out to be TNBC..1.6 cm..
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2009 at 10:18am
My lump was painful!  My Internist told me when I saw her for her to see it and order the mammogram that pain usually meant it was cystic and not cancer - WRONG!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2009 at 1:37pm
When will they quit telling women cancer lumps do not hurt?Disapprove
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2009 at 6:07pm
 Pam You are so right....my recurrence did hurt...kinda like a burning sensation....hard to describe...the original tumor didn't hurt but second one made up for it....
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 Terri Quote  Post ReplyReply Direct Link To This Post Posted: Sep 14 2009 at 6:51pm

2 O`clock on my left breast hurt. It was on and off at first then started hurting steadily after a few months. When I brought it up at my yearly mammo, it was poo pooed as probable hormonal changes. I knew it wasn`t that and it turned out my tumor was at that exact spot!

IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Sep 14 2009 at 7:00pm

I asked my primary doc about how I would recognize mets when they occured. I mentioned pain, she too said that most tumors don't hurt unless they are growing against a nerve or whatever....exact science....NOT...

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: Sep 15 2009 at 5:53am

Well this seems to happen alot and if we speak up and let them know, enough women speak up and say, wrong, then maybe they will get it!

It is insulting to us as a patient.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2009 at 6:36am
Dear Carol,

In 1960....yes, you read that right...my mother had a painful lump in her breast that she was told was benign because "cancer doesn't hurt." She walked around that way as her lump grew and remained tender for ONE YEAR...when she had what was supposed to be a lumpectomy she instead had a Halsted Radical mastectomy because she had Stage III diseases...She passed away in 1964...what would have happened if they had done the surgery a year earlier?...maybe she would have seen her six grandchildren..

In 2004 some 44 years later my daughter was told that her tender lump in her left breast was benign because "cancer doesn't hurt." She walked around for 3 months and then had mammogram, needle biopsy and yes, again, cancer..

My mother's mets went to her spine, among other places...Very bad pain...

and yes, perhaps at times, cancer doesn't hurt and mets don't hurt but sometimes they do and again I pray you get yourself into competent medical "hands"...just because a doctor has M.D. after her/his name does not mean s/he is a good physician...Again, you need an expert on TNBC who is totally familiar with the disease, clinical trials etc. and who also recognizes that, sometimes, cancer can "hurt."

Sorry, I don't think I will say more on this topic..I get too aggravated...sorry, Carol...I don't mean to put you under undue pressure..just want you to get the best possible care, you can. This is a war and this is your life..

all the best,

Steve

Edited by steve - Sep 15 2009 at 6:37am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2009 at 7:07am

Dear Steve,

You know I absolutely adore you as I am sure everyone else does too.
 
What happened to your mother is a horrible but excellent example of what can happen, d*mn them for their idiosy.  I know the loss of your mother is very painful for you.
 
I don't know what we would do without your excellent advice, support and great information that you share with us.
 
But, I have to be honest here and say that many of us do not live in large cities.  We have women, myself included who live in what feels like the middle of nowhere.  Specialists do not hang out in pastureland believe me.
I would be surprised to learn there would even be a TNBC Specialist in my State.
Atleast I finally found an Onc who was familiar with TNBC so felt that was a big step up compared to the two previous Oncologists who, nevermind.
 
My point being not everyone lives near a Specialist nor might they have the assets to jump on a plane or train,or run around the Country to see these people.
 
Of course you are correct in all that you say, we just can't all be so lucky.Heart
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joybells Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2009 at 2:45pm
 I agree! My cancer hurt too....sharp, shooting pains...that is how I found it. Happily, that was over 6 years ago!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Joybells Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2009 at 2:46pm
I agree! I found my cancer because of the sharp, shooting pains. Happily, that was over six years ago. xoxo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2009 at 6:25pm
Steve..
I know your intentions are good. But I do believe I am getting the best of care. My medical oncologist (I'm not sure I am saying this right) did his fellowship at Sloan-Kettering. I checked him out top to bottom, inside and out as best I could. I researched his treatment as opposed to others and it's nearly identical. I have also read patients histories that had the same outcome as mine and were in some cases treated like me.
Radiation oncologist is a well respected specialist in his field. He was instrumental in bring IMRT to West TN. On my last visit I asked again if this treatment was called for, just to see what he would say. I am not getting IMRT or conventional rads I am getting Electrom Beam treatments that can be directed on the small area where recurrence was.
Please be assured that I am confident with my decisions. And I want to thank you for your concern.
Pam is certainly right about her comments...I live a couple hundred miles from Nashville, but anything changes in my treatment or my outlook I am not afraid to seek another opinion. My Neuro-oncologist spoke very favorably about my onc. He is at Vanderbilt where I had my brain surgery.
 
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2009 at 7:23pm
Dear Pam and Carol...

Pam....I understand completely what you are saying and it may come across that I am insensitive to the economics involved or even the strength required to make a trip (no pun on your stage name, my dear friend ).
Nothing could be further from the truth. I am sorry it may come across that way and I understand why folks may be upset.

When I was in Manhattan several years ago visiting my daughter who had TNBC I went to see a urologist who I knew was knowledgeable about the BRCA mutation I have. I talked to him about my urologist in San Diego (which was my home at the time) who had never heard of BRCA...

and he said "once you get away from the big cancer centers the vast majority of urologists have never heard of BRCA." and I would venture to guess that many, many physicians have never heard of TNBC either...

so what to do? I can try to use different words such as..."if you can manage to make the trip I would suggest going to a NCCN center?" would that help?...seriously, please tell me what to do Pam (and others)..maybe in a PM.

Especially in the miserable economic times we are going through all of us are suffering...so, again, my apologies to all for appearing to be insensitive. My core belief is that women with TNBC and/or who is BRCA+ should see physicians who are knowledgeable and the most likely chance you have to find a doc like that, in my experience, is at a NCCN facility.

Carol, I am delighted you are happy with your oncologist and certainly he sounds like you made a good choice. If you had seen someone at Vanderbilt for your first opinion and you found your oncologist who was closer to home I would still encourage you to get a second opinion from your local oncologist...so it is not so much a question of your doc's opinion it is more a question that
sometimes, a second opinion can be helpful...I fully recognize that that may be impossible for some or most people here so perhaps I should write "if it is feasible...I would seek a second opjnion." and again I am not saying your doc is not excellent; I am just prejudiced by everything I have experienced (much lousy advice that our family followed, without seeking a second opinion, to our detriment) and want to suggest getting another pair of eyes on your situation.

The other major problem is that many clinical trials are held at inconvenient locations...so again, what to do?...I recommended to a woman in San Diego a few years ago who had Inflammatory Breast Cancer (which is a very nasty disease) to go to M.D. Anderson's Inflammatory Breast Cancer center...The doctor there recommended that she go on an intensive six month trial..They were the only site in the country at that time to offer it...She moved temporarily to Houston...causing great economic hardship to her family...but she is alive now and doing better..I believe the trial saved her..so how do you measure that in $ terms especially when all too often the trials don't work...so you are out the money from the move, loss of income (she had to quit her job as well) and perhaps the end result is still tragically difficult..

and what happens if you have diametrically opposing views such as my daughter faced?...one doc saying HRT was fine after her surgery and one saying "no way?" well, what you have then is a problem and you have to try and sort it out as best you can...and it is no fun doing so..

in any event, Pam, Carol you have my apologies and I would welcome suggestions as to how I can improve..

I will not change my core beliefs and that is to see the best professional you can...and that may mean seeing a doc who is local, by necessity, because of economics..even if s/he is not knowledgeable...

I invite any and all of you to give me some guidance on this topic..

I guess the bottom line is that we all make choices as to how we fight the beast. I am writing that because my dear friend's mother is seriously ill with liver cancer and she has made a decision to not treat her disease. "I don't want to give all my money to the doctors and for the chemo..what I have I want for you and my grandchildren." She refuses to accept help from him and she is letting nature takes its course..It is making him crazy but he is following her wishes..

All I can tell you is that I am very sensitive to what you said Pam and I am looking for some guidance..Thank you for bringing the subject up..it is an important one.

thank you in advance,

Steve

Edited by steve - Sep 15 2009 at 7:37pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2009 at 5:03am
Steve,
 
No apologies needed here!  Please, we know you are very sensitive to what we are going thru as you point out, you have been thru it yourself with your friends and family.
 
Myself I hope you remain constant with what you believe, your advice has been a tremendous help to our community. 
What would we do without you?  You've helped so many, know many people who can help us around the Country, I am sure we are all extremely grateful for what you have done for us.Heart
 

There really is no problem and you do a beautiful job. 

We love you to pieces,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2009 at 5:20am
Steve:

I agree wholeheartedly with Pam's reply.  We appreciate all your valuable input and passion for helping us.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2009 at 7:36am
My business is carried on almost exclusively online. So it occurs to me after reading the above that 2nd opinions should be able to be conducted online with UPS/FedX used in the mix.
 
Likewise, because I also live in the middle of nowhere, I have run into the scenario where I asked if I could participate in a trial that was some distance from me and was told the trial HAD to be conducted at the original research university. I would have to travel for my treatments 1x a month for 3 years.
 
I replied with the question, are you saying to me that you do not TRUST Fred Hutchinson in Seattle (rated #6 in US) who successfully carry on many of their own trials, to perform the procedures your trials require?
 
I am convinced that the compartmentalizing that has given so much success to our research is also damning that success of bringing it to the fruition of curing cancer because cancer patients are DENIED ACCESS in our current system.
 
So my point would be that in an information era, geographic accessability should and could be minimized. There will always be scans & infusion to travel for but surely they can be more localized. 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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