BRCA1 Gene Mutation and Neoadjuvant Chemotherapy |
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cheeks 
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Joined: Jan 14 2011 Location: North Carolina Status: Offline Points: 676 |
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 Posted: Oct 22 2011 at 10:46pm |
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Wade,
You are more than welcome. Mindy, I understand about delays - i found my lump the first week of November of 2008, had to wait for my mammogram on 11/11/08, got the results and a "suggestion" to go for an ultrasound the last week of November. I didn't have my ultrasound until January of 2009 and surgery until March 2009. In addition to the location of my tumor I was in such a difficult place emotionally they felt I would not be able to handle waiting to see if it got smaller with the chemo. They were already concerned that it was in my nodes due to the size on MRI of 5-6 cm although my post surgical report puts it at 4.5 cm. So many things to consider in making a decision but it's good to go ahead and make one and get started like you finally did. I remember being told my hair would start coming out by my 3rd weekly Taxol but it didn't and they were surprised. The recorder and a second pair of ears is a good thing to have because so much information is given that it is hard to listen and comprehend it all. I guess, the best thing is knowing that your doctors are keeping a close eye on you and they will do something if the tumor is still getting bigger. It's so hard to trust other people with something as important as our lives. Do they really not want you to continue with broccoli? I guess in a research setting they don't want too many variables. Waiting is hard for all of us and I will continue thinking about you and how you are doing. I like to hug and be hugged so here is one for you.  By the way, my husband and I lived in Oklahoma in 80, 81 and 82. He was working on deep gas rigs in the Anadarko Basin for a division of Halliburton. Interesting place! Blair Edited by cheeks - Oct 22 2011 at 10:48pm |
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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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cheeks
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Joined: Jan 14 2011 Location: North Carolina Status: Offline Points: 676 |
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Posted: Oct 22 2011 at 10:47pm |
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p.s. I just looked at the date of my mammogram and guess what - our older son is getting married on 11/11/11 - maybe from now on i will have better memories of the day 11/11!
Blair
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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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Suze35
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Posted: Oct 23 2011 at 10:47am |
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Mindy - I am so - SO - glad to hear you are getting fast-tracked back to MDA to address any possible tumor growth. I was hesitant to post initially, as I know this is such a scary time, so thank you for taking it in the spirit I intended. For what it's worth, I still believe that neo-adjuvant is the right choice for TN, and would not have changed my course of treatment. I am not even angry really at the doctors for not listening to my concerns - as far as we could tell clinically, nothing was really growing, and I did not push for a scan. I think that is why I tell my story - if I can help one person advocate for themselves in a way I didn't, then I've accomplished something important. So you go and be as pushy as you need to be - I think that is GREAT!!
A positive story - there is a survivor on another board who had a poor response to her initial chemo - they immediately did surgery, she was Stage IIIc, then did a different round of chemo - I believe Gemzar/Cisplatin. She is 5+ years out, with no recurrence! cheeks - What a wonderful husband you have, to put his fears aside and help you through such a difficult time. My husband is very task-oriented. He took over a lot of that stuff too - became my personal appointment secretary, lol. It sounds like you are coming to a better place, and I wish you the best of luck on your son's wedding day - I think it is a great way to push out the old and bring on the future!! Wade - thinking of your wife and hoping she continues her recovery uneventfully! You are also among those awesome husbands - I can't say enough how my husband's support has strengthened the bond we have. I know that you and your wife will feel the same when it is over and in the past.
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9/2010 Stg IIIa, AC+T and Carbo
July 2011-Xeloda+Avastin 9/2011 Stg IV-nodes, bones, liver 10/2011-Abraxane/Tig trial - Abx arm 11/2011-progression, Tig/Abraxane 12/2011-Off trial - Eribulin |
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Barbi
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Joined: Jan 04 2011 Status: Offline Points: 471 |
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Posted: Oct 23 2011 at 11:00am |
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Mindy, I am so glad this place exists where we can come and ramble! I hope it is helpful, if not in the rambling, but in the responses you receive. I, for one, am glad you are having neo so you will know to switch chemos if this one doesn't respond pretty soon. Are you past the third treatment yet?
By the way, my hair fell out sometime around day 23 with taxol, but with abraxane, just the pigmented hair fell out (about day 23) and I am left with this sparse grey stuff. It's kind of crazy and I look kind of crazy! Prayers for this chemo regimen to hurry up and respond or that they switch you to the right one!
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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Wade
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Joined: May 15 2011 Location: SE Michigan Status: Offline Points: 108 |
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Posted: Oct 24 2011 at 2:56pm |
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Hi Deb,
Good luck with your surgery tomorrow! I hope everything goes well, and you hear good results! Best regards, Wade |
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Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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Wade
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Joined: May 15 2011 Location: SE Michigan Status: Offline Points: 108 |
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Posted: Oct 24 2011 at 3:03pm |
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Thank you, Suze35
I appreciate the kind words. I hope you have a great day, and good luck with your new chemo regimen! Wade |
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Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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debB
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Posted: Oct 25 2011 at 7:40pm |
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Hi and thanks so much for the surgery wishes! Everything went very well! The preliminary pathology on the tumor site and nodes all are NED! I was nervous aboutnthe node mapping but they drained axillary and not internal which was a big relief to me. They removed my port also, even though I feel like I am giving up my security blanket! I should have final path Thursday or Friday but feeling good about things!
Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Lillie
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Posted: Oct 25 2011 at 8:01pm |
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Hi debB,
I am so glad your surgery went well. I am praying that you have an OFFICIAL NED once all the results are in. I know what you mean about the security blanket port. I kept mine for 5 years. Hopefully, neither of us will ever need a port again. God Bless, Lillie |
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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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Wade
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Joined: May 15 2011 Location: SE Michigan Status: Offline Points: 108 |
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Posted: Oct 25 2011 at 8:06pm |
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Hi Deb,
That's fantastic! I'm amazed you're able to post already! I hope all your results come back clear. Congrats! Wade
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Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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mindy555
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Joined: Aug 13 2011 Location: Oklahoma Status: Offline Points: 980 |
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Posted: Oct 25 2011 at 8:33pm |
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Suze- I'm SO glad you came out and told your story. I do understand
being hesitant because you didn't want to scare me. What really hurts is to
hear you weren't being taken seriously. That's the ONLY upsetting
aspect of your powerful post. At this point while I'm not beyond fear, I
believe information is everything... our strongest weapon of all. Allowing fear to overshadow
knowledge is living in the dark. I'm living to BEAT THIS - not to
cower and hide. I just want to hug you hugely for sharing. THAT was
the most selfless, valuable and powerful thing I could hear- It not
only helped me more than you know, but also other lurkers who may not be
having the best of results with their treatment. I'm beyond sorry it went
that way for you.. it only feeds my urge to advocate harder on my own
behalf and for every other woman with TN. If your doctor isn't
listening, don't walk, run to someone who will listen and take action. I so admire
you and am extremely thankful you're here! I just have to say it's my
great pleasure to meet you. You're one amazing lady. I look forward to talking more.
Blair, Wade, Deb and all - Thanks for your support. It means so much to me. You guys are truly the best support in my world. Lillie- You're another amazing lady who totally inspires. I love all your posts and look forward to many more. We all can learn so much from one another. Barbie- I'm so with you.. I hear you loud and clear. I fought for surgery first. Now I'd be pizzed if they decided to go that route. It's funny, even though the neo chemo doesn't appear to be working, I surely don't want to give up now. I've grasped the concept and have an overwhelming urge to fight for the right chemo or chemo cocktail to shrink this bugger. I truly have to believe that will happen. I'm just past my 3rd treatment. The next chemo will be given at MDA. No hair loss.. not even a strand. I even find myself tugging on it in the shower. It's like I'm correlating the effectiveness of treatment with hair loss, which has absolutely no merit. Just another psychological twist I've conjured up in my beady brain. LOL. So wonderful to meet you! I'm grateful and blessed for each and every one of you - That's straight from my heart. Wishing all (continued) success as you live one beautiful day at a time. If you will, please wish me luck at my next appointment at MDA next Monday. xxxxx |
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Wade
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Joined: May 15 2011 Location: SE Michigan Status: Offline Points: 108 |
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Posted: Oct 25 2011 at 9:45pm |
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We're all pulling for you Mindy. I sure hope you find the drug(s) that work for you, soon. I only wish I had some relevant info to help you...
Wade
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Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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cheeks
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Joined: Jan 14 2011 Location: North Carolina Status: Offline Points: 676 |
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Posted: Oct 25 2011 at 10:44pm |
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Mindy,
You give me a chuckle every time and I needed one today. I was wondering how things were going and when they would get you back into MDA. I guess your hair must be somewhat like mine - tough little buggers! I did the same as you (pulling on it) when they told me i would start losing it around day 16 of Taxol and it actually didn't start until mid A/C as i told you on another post. (It started with an itchy, tingly kind of feeling on my scalp) I finished chemo in October and by December/January it was already back to 1/2 inch - i'm 2 years out now and it is down my back almost to my bra line. We all will be thinking about you - the best of luck and prayers for your appointment on Monday. Let us know how it goes. Blair
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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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mindy555
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Posted: Oct 25 2011 at 10:59pm |
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DEB!!! I forgot to tell you how happy I'm am to hear the great news of uneventful surgery. I'm also glad you feel good about everything... Happy Dance!!! Continue to keep us posted. This is the kind of news that makes my day!.... and I'm sure yours too! ;)
Hugs, Mindy |
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mindy555
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Posted: Oct 25 2011 at 11:15pm |
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Suze- I meant to ask you for clarification. Didn't your doctors monitor with ultra sounds or MRI while on both A/C then Taxol? It didn't sound like it but I wasn't sure. I've reread but still don't quite understand... if not, WHY the HECK NOT ? I don't mean to drag you back to your past or sound bitter... which is counterproductive. Actually, that's the last thing I want but have to ask. I know I'm to have a scan every 3rd week throughout. For all I know I'm chemo resistant too, and surgery will be the answer followed by chemo. But I want it all backed by more than a physical exam. It sounds like you were on top of it and maybe your doctors weren't.
Please know I'm praying your new treatment goes ALL IN YOUR FAVOR and works for all cancer sites.. Gosh.. I'm wishing you so much luck with this regimen and will be keeping you in my thoughts and prayers for the VERY VERY BEST OUTCOME!!! Edit Queen once again- they'll monitor with ultrasound every 3 weeks. Not a scan as in PET or CT.. Gosh no. Edited by mindy555 - Oct 26 2011 at 12:12am |
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mindy555
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Posted: Oct 25 2011 at 11:40pm |
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Blair- Thank goodness I can do something positive for you! That's heartwarming and good to know. You made my day. I hope your day ended up better and that goes for the rest of your week, too.
You're a riot.. With 2 years under your belt you have the hair I'm losing any day, uh maybe...maybe not. After I shower I'll give it a good yank. I have a ton of hair.. down to my bra line now.. actually very thick healthy hair despite blow drying abuse. I had a plan to get it cut and prepared via protocol for donation to Locks for Love- a group which helps children needing human hair wigs. God knows there's plenty to go around. The only hitch in their protocol is it can't be highlighted. It can be color treated, not highlighted or bleached. Even though I think my stylist uses a highlighter that doesn't contain bleach, the chemicals in lightened hair can create allergic reactions for some of these kids, so I can understand why it would be a no-go. Once I learned I wasn't a donation candidate I decided to hang on to my mop for as long as it hangs on to me. I said at the first sign of loss "that was it".. I was going straight for the short hair cut- short enough to buzz all the way off. No playing around with cute haircuts first. There's something comforting about the familiar when everything else around me is changing. Today is end of day #22. Wanna start a pool and take bets? Online gambling at it's finest.. And so appropriate for this site, don'cha think? I'm sure the monitors would eagerly approve! LOL  Edit.. The charity name is Locks OF Love not FOR Love. Just an FYI for anyone interested. Edited by mindy555 - Oct 26 2011 at 12:57am |
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mindy555
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Posted: Oct 26 2011 at 12:50am |
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Wade- Believe me... you've brightened my world by being here, sharing your story and being such a wonderful advocate for you wife - all pure inspiration. Your wife's success through treatment has brought me MUCH JOY, fills me with love and hope. We're all in this together. Having relevant information isn't important. Being here and caring is. That's all that matters, Wade. Only the professionals have another treatment approach that could be relevant. You're a blessing to our forum.
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Barbi
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Posted: Oct 26 2011 at 10:12am |
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Mindy, I don't think it's unusual that Blair didn't have MRIs or US's during treatment. I was monitored by palpation only, with the exception that I was in a totally separate PET study so did have one of those during my taxol treatment. And, my taxol was inside of a study with RAD0001 and cisplatin and still no US or MRI. I was cancer naive then, but I'm sure I would have to argue like heck to get them to do one, if they would.
I don't think you should cut all your hair off at the first sign. Some (not many, but a few) women don't lose ALL their hair. They may experience significant thinning, but you never know. It could be you. Somewhere here reported their hair started growing on abraxane (which is a sister drug to taxol but in a different mix). I cut mine quite short when it started to fall out, but held on to enough that it looked normal to others who didn't know me. Maybe 2 or weeks later, I buzzed it as it got too thin to stand looking at in the mirror.
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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Barbi
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Posted: Oct 26 2011 at 10:14am |
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Oh and this is 2nd hand news only. The ladies at the American Cancer Society told me that their free wigs are donated by Pantene who does large hair collection cuts at malls etc in order to produce their wigs. They said (and this is them, not me) that Locks of Love either charges something for their wigs or something else that my brain can't remember.
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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Wade
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Joined: May 15 2011 Location: SE Michigan Status: Offline Points: 108 |
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Posted: Oct 26 2011 at 10:30am |
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Hello, ladies
Kerri wasn't given any type of scans while she was doing chemo, either. All the checking was by palpation. She did have blood tests every time we went in for treatment. We didn't go in for another scan (MRI, in Kerri's case) until after she finished her Abraxane. Then there was a needle location mammogram immediately before surgery, so that the surgeon knew where to cut. Wade |
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Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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debB
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Posted: Oct 26 2011 at 10:34am |
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Hi All,
Thanks again for the good wishes. I am feeling very, very good today! Not feeling like the day after surgery at all. Having potentially good news probably helps that! I so appreciate the interaction here that Lillie talked about, just the open sharing. If you gotta take this journey then this is a great place to be. Mindy, I wanted to mention that I did not have any scans at all during treatment. I had an MRI when it was all done and then the surgeon wanted the mammogram and ultrasound. I did push for the MRI and had to work hard to get my surgery in that 4-6 week window. It breaks my heart that someone else had problems with that. On the hair donation thing, the ACS does a program with Pantene (and the name currently escapes me) but my seven year old niece just donated 11 inches of hair two months ago. It sounds like their requirements aren't as stringent and the gal who did my Look Good Feel Better class said Locks of Love just got all kinds of negative press for letting a few TONS of hair mold and rot. Now that is criminal! I did ACfirst and my hair was falling out at day 15. I held on to most of my lashes and eyebrows even thru Taxol but they are mostly gone now :( Good luck on your scan Mindy! Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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