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Attention Newbies: Important New Chemo Study

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123Donna View Drop Down
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    Posted: Nov 14 2016 at 11:32am
Bumping for new members
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: Jun 15 2015 at 6:24pm
Bump
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2012 at 7:48pm
Dear Denise,

I was searching for articles about treatment for a woman with TNBC and came across this thread.

Mom and Grandma below posted the abstract and Denise I am wondering, with all due respect and love, why this study is pertinent to our TNBC community when almost 80% of the women studied had HR+ or HER2neu+ tumors.

Did the remaining women studied have TNBC?

thanks, Denise if you can elaborate...canít find the info in the abstract.

hugs,

Steve




Edited by steve - Jan 29 2012 at 7:49pm
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 TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2012 at 3:26pm
Hi Pete,
 
My wife, Susan, finished chemo last February and started having intermitent pain in her shoulders in November. We had recent appointments with her PCP, surgeon, and oncologist and they all said it was nothing to worry about since it was in both shoulders and not constant. Susan took Neulasta shots when she was on AC.
 
Martin


Edited by TNinTN - Jan 03 2012 at 3:29pm
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PTE Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2012 at 12:48am
Thank you all for your input.  At least she knows she's not just "feeling" things, that the pain is real and probably related to the treatment.  We hadn't really though about it being the chemo, just assumed it to be neupogen.  But it sounds more like taxol type stuff.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 12:34am
PETE,
 
 I had joint pains for at least a year, year and a half,  after tx and never had nuelasta or nuepogen. I was always told that it was the chemo that made one achy. I took glucosomine/chondroiten for quite some time, then finally just stopped and it seems it had disapated. It was especially bad getting up and getting started in the mornings. The joint pains seemed to get better as the day wore on. Many dr's at that time would not associate it with tx. I was even told "I was too sensitive" , a trait most never associate with me ! Interestingly many in my online groups experienced joint pain.
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 Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Dec 25 2011 at 7:24pm
Hi, Pete,
I also have lingering joint pain which I believe to be a long-term side effect of the chemo I had.  I did not have Neupogen, but I did have 4 shots of Neulasta.  Like your wife, I was told by my oncologist that it was rather late to still be having symptoms, but . . . .  I had a bone scan to rule out any current bone metastasis.
Best wishes,
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 25 2011 at 6:58pm
Pete,

I'm not sure what may be causing your wife's pain, but I can tell you that after finishing chemo the first time over two years ago that I still have joint pain.  It's worse when I get up in the morning or if I've been sitting for a while.  The feet and hips just take a while to get going and feeling good.  I contribute this to the lingering effects from chemo (Taxotere especially) and it's probably just something I'll have to live with.  Is this similar to what your wife is experiencing?

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 PTE Quote  Post ReplyReply Direct Link To This Post Posted: Dec 25 2011 at 6:30pm
Here we are, a little over a year since diagnosis.  Last chemo was near end of April 2011.  Rads all done!  Wife had her first mammogram in November.  Was called back due to a "mass" that couldn't be determined (we were a tad bit scared to say the least).  Further testing confirmed that it was just a fluid build up!!  All normal, all clear!!!  Doctor termed her a survivor (albeit short term so far). 

Now more problems.

Wife is having recurring bone pain especially in the large bones (hips, legs, shoulder etc)  Doctor said that could be something unrelated to the cancer or treatment since she is so far out from last treatment.  I say B.S. (of course, I'm not a medical professional).

Question?  Has anyone else suffered longer term bone pain or joint pain associated with four rounds (28 shots) of Neupogen? The oncologist seems to think wife should have all that chemo/treatment junk out of her system by now.

Thank you for being here

Pete
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2011 at 11:47pm
Erin,

Thank you for posting.
Am very interested in what your oncologist has to say about the question of Taxol vs AC first.
It's great that he is going to look into this matter.
From the article, the study was retrospective. Some feel prospective studies are the best way to go.
I had AC then Taxol (then surgery, then radiation).   I was not aware of the above study while having
chemo. After the fact, when I asked about ACT vs T-AC, I was also told ACT (dose dense) was better
(but was not given a resource/reference for the statement).

I recently posted a forum topic: 5FU (fluorouracil).......asking if anyone knew why MD Anderson in
Texas sometimes uses 5 FU along with T- AC.   Still waiting to see if any info will get posted.
Maybe your oncologist might know why MD Anderson uses 5FU sometimes with T-AC ?????
When I asked, I was told......different centers follow different protocols.

It's great that you are more than half way thru your chemo.
With taxol, I was told that Vitamin B 6 100mg daily might help decrease or prevent any peripheral
neuropathy.   I did take the Vitamin B6.....did get some finger and feet numbness which is resolving and
very minimal now.

With caring and positive thoughts,

Grateful for today..........Judy    
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Erin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Erin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2011 at 3:30pm
I just wanted to let you know what my oncologist said when I brought this to his attention.  He is going to look into it further but his initial impression, and forgive me for my inexpertise, was that the study reviewed stats for people who are not on the "dose dense" therapy.  In other words, Taxol first is significantly more effective, according to the study, for those who recieve chemo every three weeks.  I don't know if it's standard now but I am recieving chemo every two weeks ("dose dense").  Although you might predict the results would be the same, there really is not telling if Taxol first is more effective with this dose schedule.
Also, I think having the AC at the end might be very difficult for some.  I have recently switched from the AC to Taxol and the difference in how I feel is remarkable.  I know I would have stuck it out but I predict many people might quit the AC if they were already run down from the Taxol.
Anyway, just some thoughts.  I hope more attention is brought to this study and I really appreciate it being posted.  I will let you know what my oncologist has to say after he reviews the study with his colleagues.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 8:39pm
Thank you Blair.  I wish all the best for you, too.  Congratulations on NED for over 2 years.

I'll pray for your continued wellness.   xxxxxx  Mindy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 6:51pm
Mindy555,

I think you are right that at some point we just have to make a decision and do something even if it's not the perfect thing to do. I first found my lump (it was fairly small) about the first of November of 2008.  I had to wait for several weeks to have a mammo. I got those results 11-11-08, had to wait several weeks for an ultrasound which was only a slight recommendation. That appointment and further treatment were disrupted by an unexpected hospitalization for a different problem. I wasn't seen for that ultrasound until January of 2009. The biopsy, PET, bone scans took place after that - we ended up not liking that surgeon at all and sought the opinion of two others, debated about which one - chemo before or afterwards, decided on a surgeon and went for the tests he wanted...an MRI...met with the oncologist he recommended. She reviewed everything -It was finally decided that surgery first was my best option because of where the tumor was located there was no saving the nipple or surrounding tissue and it had grown so large during the months of delay. The surgeon then had a death in his family and my surgery was delayed  - in the meantime I got sick with a bad cold - sinus infection and the surgery was delayed again. Finally, in March of 2009 a mastectomy was done - by this point the tumor was 4.5 cm (post surgical path report) although original estimates were 5-6 cm. That's why I totally understand the "quicksand" you are talking about and you are right about going forward with faith - with something. Best of luck to you in your treatment plan.

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 4:32pm
I think what's as remarkable as the sequencing of chemo is the difference percentages at 5 & 10 years between those who received adjuvant vs. neoadjuvant therapy. My oncologist's explanation for the discrepancy in numbers is that many of the neoadjuvant group's higher staging.  For me, since adjuvant therapy was my first choice but didn't happen it's a little disheartening, just as it may be for some of you that had the reverse order of chemo- especially in light of the fact this has been known for quite some time.

A little off topic..

I literally just returned from MDA after my first dose of Taxol (which will be carried out here).  My reason for going to MDA was to seek a certified oncology breast surgeon to do surgery first. During the process I learned their protocol is neoadjuvant first always unless you are stage I.  I was clinically stage I after ultrasounds, MRI, Pet and CT scans when first diagnosed.  I'm now a IIa.   I feel like I've been standing in quicksand for too long.  So, there is a bright side by finally  being treated, even though it turned out differently than what I truly wanted- based on other TN savvy oncologist's & surgeon's opinions.  With 6 subtypes, TN is a tricky one to begin with.  I'm learning we have to go forward with the initial treatment plan, no matter what it is, with faith.  They both have their pros and cons.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2011 at 2:23pm
Thanks Lillie, I will do that.


Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2011 at 2:19pm
Hi Blair,

If would be best to post using a new topic under the TNBC Talk forum. That way your question or thoughts would be seen much easier and quicker.

So sorry about the cystitis. I have had a few bladder infections since my chemo. I've always wondered if there was any connection.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2011 at 12:36pm
Dear Lillie, 

Thank you for the reply. Yes, I am doing very well. I continue to take vitamin D3 as suggested by my oncologist. I have modified my diet greatly - not just for the cancer but also for my blood sugars, cholesterol and for the chronic cystitis called interstitial cystitis which I developed during my A/C therapy. I can get no one to answer my questions regarding whether or not the Cytoxan may have caused the IC but I am very suspicious that it did since it can cause Hemmoraghic (sp)Cystitis which have the exact same symptoms but are supposed to only occur with higher doses of Cytoxan. If I have some questions to ask people about things we might have in common do i post it on this forum or start a new topic or survey? I am also glad that you are doing fine. 

Blair (cheeks)


Wife for 33 years and mother of 2 grown sons
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2011 at 12:11pm
Dear Blair (cheeks)

Congratulation on your NED status. I had my chemo in 2006, but the reverse order from yours. The "taxol first" was not the standard of care back then. It sounds as though we both are doing well.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2011 at 4:29am
I received my first chemo in 2009 and my oncologist specifically mentioned this study and used the Taxol first !
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mags20487 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2011 at 3:13pm
I too will print this off and take it with me!  Thanks for this great info!
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