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Attention Newbies: Important New Chemo Study

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tAugusta View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tAugusta Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 3:08pm
thank you bless you
my doc will not change protocols, nor will she let me change to another doc in her
group.
only group going in Winchester, VA.
Should I go to Richmond? Great center there.
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 4:40pm
That's bizarre.  Did you show her the abstract?  Why woudn't she allow you to switch protocols if there is brand new research showing that a slight variation would give you a large survival advantage?  I'd say maybe try one more time, and if she doesn't get with the program then dump her and find someone who will do right by you.   The purpose of this research is to SAVE LIVES.
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 6:53pm
tAugusta,
 
Sometimes the local doc is not the best doc.  I don't know how far from Richmond you are, but it might be worth it.  Its always wise to get second opinions anyway, if you can.
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 9:41pm
Gee, and I was told that I'd gotten the "big guns" when I had all my DD A/C, but only allowed to finish 7 of my Taxol infusions.  That was the basis for telling me that since I'd had major surgery after 7 Taxols and had to be off chemo for a long time, there was no point in finishing the last 5 Taxol treatments.  I was told I'd lost the snowball effect of the chemo.  Now, it looks like the Taxol was the treatment I should have finished.  Since that trial lasted from 1994-2009, a very long time in my book, couldn't the docs see where the data was leading them?
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Belle_Laide Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 10:13pm
What an interesting read! I am also a DD/AC then Taxol kinda girl...and if this is of any comfort to anyone out there who feels as though they lost precious ground because they did AC first:

My mass had NO shrinkage with Taxol, which I had administered after the AC. The only reduction in my mass/tumor came with the AC, which I had first. I shudder to think that all those weeks of Taxol were for nothing;since I had treatment first, then surgery, it was several months after my AC was finished before I had surgery to remove the beast.    

Did everyone here who had AC/Taxol, in that order, have tumor/mass shrinkage?

I didn't.

If the Taxol didn't help me afterward, how do we know it would have helped me beforehand? Are there guarantees that we will all react the same?

All I am saying is, ladies, please don't beat yourselves up if you did not have the treatment in this order. I am sure as hell not going to (beat up myself.) I'm happy if this works for somebody. But apparently it wouldn't have worked for me. And BTW, if anybody is not happy with their onc, DUMP them immediately if you can.
Did everything right; got screwed anyway. BRCA Negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 10:21pm
I had surgery before chemo.  I didn't know at the time there was any other way to do things.  Having had surgery first, there wouldn't be anyway to know what chemo would have worked or worked better.   I'm waiting for the day that the docs can figure out which chemo will kill off your particular tumor.  Won't that be a grand day for all of us! Until then, I'm just going to assume I am cancer free.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tAugusta Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2011 at 11:11pm
thanks for the post. guest that is why the really unpleasant chemo doc is invested in her protocol.
perhaps she has valid points ...
however, talking to me would be nice
"Trust Your Doctor", yes I repeat, she did say that ...
now, time and place for that, should be earned. not hard earned, but earned. Last week, didn't know this gal from whom-ever?
Yes, I did, gosh darn, forget to pick up my Med School degree, she has me on that. However, San Antonio trip neg presentation looked like a properly done, large control group, overtime (not all triple-negs?s, double-blind, do not know, heaven's since 1994) run-it-up the flag pole I think we can salute this one ladies and gents.
Sorry, I do go on. Got  honors in my stats class, anyway.
RANT. Please anyone. Anywhere.  Are you hearing, "Trust your doctor" at first meeting?
Not counting, like social situations, dating an intern, joking and he wants more smooching? END RANT

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Post Options Post Options   Thanks (0) Thanks(0)   Quote bjoangtx Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 1:13am

Volume 163, Issue 1, Pages 52-57 (September 2010)

I obviously can't cut and paste but along the same lines as the study Denise found about sequencing drugs I found this about neoadjuvant vs adjuvant therapy for triple neg.
< name=resultsListTop =http://journals.elsevierhealth.com/search/results method=post>< = value=plat name=search_area> < = value=no name=search_preview> < = value=20 name=search_reqcount> < = name=search_article> < = value=no name=search_medline> < = value=no name=search_federated> < = value=16955954 name=search_id> < = value=21 name=search_reqfirst> < = value="All Periodicals & MEDLINE" name=search_source> < = name=search_query> < = value=all name=search_within1> < = value=all name=search_within2> < = value=all name=search_within3> < = value=and name=search_operator1> < = value=and name=search_operator2> < = value=all name=searchDisciplineField> < = value="triple negative breast cancer" name=search_text1> < = name=search_text2> < = name=search_text3> < = name=search_text4> < = name=search_doi> < = value=188 name=search_hits> < = value=yes name=search_wordsexactly> < = name=search_volume> < = name=search_issue> < = name=search_startpage> < = value=SEARCH name=search> < = value=0:ALL name=search_datecombo> < = value=combo name=search_date> < = value=1 name=search_monthstartcombo> < = value=1 name=search_monthendcombo> < = name=search_yearstart> < = name=search_yearend> < = value=false name=related> < = name=articleId> < = name=articleTitle> < = value=relevance name=search_sort> < = value=false name=citedBy> < = name=overridingDateRestriction> < = name=medlinePmidWithoutMDLNPrefix> < = name=restrictterm_author> < = name=restrictdesc_author> < = name=search_current>

ABSTRACT

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Neoadjuvant Versus Adjuvant Chemotherapy for Triple Negative Breast Cancer

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Received 5 January 2010 published online 10 May 2010.

Background

The study aim was to investigate factors that predict the use of neoadjuvant versus adjuvant chemotherapy in patients with triple negative breast cancer (TNBC) and the overall survival in each group.

Methods

We identified 493 patients with Stage I-III TNBC between 1998 and 2008. Patients were divided according to receipt of neoadjuvant, adjuvant, or none/unknown chemotherapy. Data were compared using χ2 and Fisher's exact test. For more than two group comparisons and analyzing multiple dependent variables, MANOVA was used. Kaplan-Meier curves were generated.

Results

Of 493 patients with TNBC, 154 (31%) received neoadjuvant chemotherapy, 251 (51%) received adjuvant chemotherapy, and 88 (18%) had no or unknown chemotherapy. Patients undergoing neoadjuvant chemotherapy were younger (mean 50, range 20–83) compared with those undergoing adjuvant chemotherapy (mean 53, range 25–83) or none/unknown chemotherapy (mean 62, range 29–86) (P < 0.0001). The three groups did not differ significantly by patient race, tumor histology, or tumor grade. Increased tumor size, nodal positivity, and advanced stage were more likely to be associated with use of neoadjuvant chemotherapy (all comparisons P < 0.0001). After controlling for covariates associated with survival in unadjusted tests, patients undergoing adjuvant therapy were less likely to die compared with patients undergoing neoadjuvant therapy or none/unknown therapy (overall aHR 0.476, 95% CI 0.295–0.770).

Conclusions

Women with TNBC who underwent adjuvant chemotherapy were 52% less likely to die overall compared with those who received neoadjuvant chemotherapy or none/unknown chemotherapy in this institutional series. Prospective studies are necessary to determine if this finding is durable.

 Department of Surgery, Washington University School of Medicine, St. Louis, Missouri

† Division of Biostatistics, Washington University School of Medicine, St. Louis, Missouri

Corresponding Author InformationTo whom correspondence and reprint requests should be addressed at Department of Surgery-WUSM, 660 S. Euclid Ave., Campus Box 8109, St. Louis, MO 63110.

PII: S0022-4804(10)00363-X

doi:10.1016/j.jss.2010.04.015

St 2 Gr 3 2/5 nodes dx 8/9 age 56 Neoadj ACT @ x 6 @3wks bi mst. 12/09 Infect expander 12/31 remvd, replcd 1/27. 28 rads 4/10 Brkn rib 5/10 PET   6/10 NED Recon 9/17 & 12/10 Ki67 85% basal
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PTE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PTE Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 1:18am
thank you all for allowing a husband to join this group.  I unfortunetly must become educated so I can become an informed advocate for my spouse.
 
Someone asked if you could "pin" this thread so you dont lose it.  I opened the thread and then did a bookmark.  After closing my browser, I was able to come right back and not lose anything.
 
since my wife will begin chemo very soon, the study that you show is going to help (I think).  I dont yet understand all the acronyms and verbage but I'm sure in time I will.
 
Again thank you for allowing me to join your forumn group.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 1:52am
welcome PTE.....glad you found the thread. There are quite a few hubbies on board so I know you will feel welcome.
 
 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 6:41am
Dear PTE,

welcome to our TNBC Foundation family...you are now officially a member...sorry you have need to be here but you are most welcome...

My daughter was dx with TNBC when she was 36, 6 years ago, and I have found this website to be incredibly supportive and informative..

You are fairly close to a marvelous (in my unprofessional opinion) Medical Oncologist who is very knowledgeable about TNBC. Dr. Hope Rugo at UCSF. I would encourage you to see her, if you are open to a second opinion.


good luck to you and your wife and again, welcome,

Steve

p.s. suggest you go through our Resources section..you can’t post there but lots of good info...




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 cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 7:21am
I received 12 weeks of taxol and after a 3-4 week break had 6 of a/c @ 3 weeks apart - I think I remember my oncologist mentioning this study - I didn't lose my hair until a good ways into the a/c therapy. It has grown back thick and curly and it was thinner and straight but no change in color. I was fortunate and had no ill affects to the chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 7:41am
Originally posted by Belle_Laide Belle_Laide wrote:

What an interesting read! I am also a DD/AC then Taxol kinda girl...and if this is of any comfort to anyone out there who feels as though they lost precious ground because they did AC first:

My mass had NO shrinkage with Taxol, which I had administered after the AC. The only reduction in my mass/tumor came with the AC, which I had first. I shudder to think that all those weeks of Taxol were for nothing;since I had treatment first, then surgery, it was several months after my AC was finished before I had surgery to remove the beast.    

Did everyone here who had AC/Taxol, in that order, have tumor/mass shrinkage?

I didn't.

If the Taxol didn't help me afterward, how do we know it would have helped me beforehand? Are there guarantees that we will all react the same?

All I am saying is, ladies, please don't beat yourselves up if you did not have the treatment in this order. I am sure as hell not going to (beat up myself.) I'm happy if this works for somebody. But apparently it wouldn't have worked for me. And BTW, if anybody is not happy with their onc, DUMP them immediately if you can.


I remember a thread talking about this where some of the tumors actually started growing during the Taxol part of treatment.  I think the discussion was over a year ago but it was from a member who was posting for a cousin.  I wish we could find that thread or discussion.  It would be interesting to compare it with this study.
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 8:14am
Belle Laide,

I just remembered the member's name, Terje, and found the older discussion threads on the Taxol subject.

http://forum.tnbcfoundation.org/research-on-new-therapies-to-limit-mets_topic5910.html#51303

http://www.medicalnewstoday.com/articles/182239.php

http://www.youtube.com/watch?v=RjNzAJRvGAg







Edited by 123Donna - Jan 14 2011 at 8:16am
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 Dagmar Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 10:46am
Good morning all,

I was diagnosed with TNBC (spread to 3 lymph nodes) in April 2010 and decided on treatment at Mayo rather than in my home town Chicago. I was treated with AC (8 bi-weekly sessions) followed by Taxol (12 weekly sessions). Halfway through AC the tumor already had shrunk significantly and after Taxol the tumor was no longer visible on scans. I had surgery in October (lumpectomy and an axillary dissection, 22 nodes removed) and had a complete pathological response. I just finished radiation (30 rounds, incl 5 boosts) days before Christmas. 

On the day of my diagnosis I changed to a raw/vegan diet, combined with Budwig. On top of that I continued daily exercise (hiking) and added meditation (Jon Kabat Zinn method). Not an easy switch but I feel it had a life changing impact on me. Yes, I lost all my hair, eye lashes, etc. and I'm happy it all came back:-).  

Throughout it all I had minor to no side effects and did not need special medication for nausea. My outlook at the start was very grim to say the least. I guess all situations are different. But I am a firm believer my personal choices and attitude were essential too. I'm still on the diet, continue the exercise and enjoy the mindfulness meditation!

Good luck to us all!




Edited by Dagmar - Jan 14 2011 at 11:22am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 2:53pm
Dear Dagmar,
Congratulations on your PCR!  That is wonderful. 

On the subject of diet and lifestyle, I believe these choices are crucial to helping chemo and radiation work better, and for helping the body recover from all the interventions. 

Since Budwig includes cottage cheese in large quantities, does it compromise the vegan intentions of your diet?  Also, are you juicing?  I would love to hear what a typical daily diet for you would include as I need some motivation.  I have fallen off the veggie train and have even stopped many of my supplements lately... but I am eager to see what others are doing always as it helps get me back to good habits.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 3:00pm
Newme,

The links that Donna 123 posted will help you understand the latest findings.  Watch the Youtube video on microtentacles....it is convincing evidence of the matter at hand as they have actually filmed the process as it takes place. 

Donna, as always, thank you for updating the thread with the links....

Bliss
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 3:02pm
Trip 2,
Also want to thank you for originally posting these findings.  These studies are so important for us to read and understand so we can make informed choices. 
Bliss
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 9:58pm
PTE,
The guys are always welcome here.  You will find Steve amazingly informative!  I don't know where else the husbands or dads could go to find out so much information on TNBC.  We are always here to listen and help as best we can.  Best of luck in your wife's treatment.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 4:09am
I also wonder why the study didn't include cytoxan. The regimin that we're actually getting is AC-T.

T-A vs A-T survival stats are interesting, but not as interesting as AC-T vs T-AC would have been, since that's what we're actually getting.

As far as we know, the addition of cytoxan could change the results, right? Maybe AC->T is better than T->A, or even better than T->AC.


Stage IV at dx in Dec 09, at age 38. Mets to lung, axillary, IM and mediastinal nodes.

4xAC-->dd Taxol. Dbl mast, 6/10. Radiation, 8/10. NED since June 2010.
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