BRCA1 Gene Mutation and Neoadjuvant Chemotherapy

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Topic: BRCA1 Gene Mutation and Neoadjuvant Chemotherapy

Posted By: 123Donna
Subject: BRCA1 Gene Mutation and Neoadjuvant Chemotherapy
Date Posted: Sep 08 2011 at 7:48am

BRCA1 Gene Mutation Associated With Neoadjuvant Chemotherapy

Nearly half of http://www.medicalnewstoday.com/articles/37136.php - breast cancer patients carrying the BRCA1 gene mutation experience a complete pathological response (pCR) the disappearance of all evidence of disease from the breast tissue and lymph nodes regardless of disease stage after standard neoadjuvent chemotherapy, according to new research from The University of Texas MD Anderson Cancer Center.

The study, published online in The Journal of Clinical Oncology on September 6, is the largest study to date to find that the pCR rate is significantly higher in BRCA1 carriers (46 percent) than in women carrying the BRCA2 mutation (13 percent) and non-carriers (22 percent). Among all the women, researchers did not find a statistical difference in overall survival rates, but noted that BRCA1 carriers who achieved a pCR had better five-year, relapse-free survival and overall survival rates.

BRCA1 and BRCA2 belong to a class of human genes known as tumor suppressors. The mutation is inherited and increases a woman's chance of developing breast cancer with more aggressive features by 80 percent. Researchers aimed to determine whether women with and without the mutations would respond differently to the same treatment.

"While hereditary breast cancers typically carry aggressive tumor features compared to sporadic breast cancers, we found that BRCA1-related tumors were as responsive and sensitive to anthracycline and taxane-based chemotherapy as were sporadic breast cancers," said Banu Arun, M.D., professor in the Department of Breast Medical Oncology at MD Anderson and lead author of the study. "These findings may help physicians determine the best treatment method for this subset of women with unique genetic mutations."

For the study, researchers used MD Anderson's Breast Cancer Management System Database to identify 317 women at varying disease stages who received neoadjuvent chemotherapy and clinical genetic testing for BRCA1 and BRCA2 between 1997 and 2009. Fifty- seven women were BRCA1 carriers, 23 were BRCA2 mutation carriers and 237 were non-carriers. After chemotherapy, 61 patients received breast-conserving surgery, while 256 opted for mastectomy.

Median follow up time for the patients was 3.2 years, at which point 22 percent of patients experienced disease recurrence or death. There were no significant differences noted in survival outcomes with respect to BRCA status and type of neoadjuvent chemotherapy received.

According to Arun, there is no consensus on the most effective chemotherapy regimen for treating women who carry the BRCA mutation, due to a lack of prospective studies.

"This new insight tempts us to speculate that the presence of the BRCA1 mutation determines how some women will respond to neoadjuvent chemotherapy. However, we need future prospective studies with larger cohorts and longer-term follow up to validate these findings and determine optimum treatment," Arun noted.

Source: University of Texas M. D. Anderson Cancer Center
http://www.medicalnewstoday.com/releases/233965.php - http://www.medicalnewstoday.com/releases/233965.php

-------------
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

Replies:

Posted By: mindy555
Date Posted: Oct 14 2011 at 2:50pm

Thanks Donna! I'd seen this report or a version of it recently. As a BRCA 1+ it makes me feel a bit better about my visit to MD Anderson which surprisingly and sadly interfered with my goals. (What was I thinking? They're a research hospital... though a DARN GOOD one!) Their reasoning for neo is so they can carefully monitor the growth as we progress (and hopefully we DO progress) with proof the chemo regimen is doing its job. And here I am just wanting the dang thing OUT of my body.

My mission for going was to find a qualified breast oncology surgeon to perform a bilateral mastectomy then follow-up with recommended chemo. BTW, included in their protocol MDA's doesn't seem to deviate at all from Taxol 12x & FEC or FAC 4x from the posts I've found.

Anyway, that plan was superseded by their non-negotiable protocol of neoadjuvant therapy for any tumor > 2 cm (memory lapse.. could be below 1 cm).. with OR without node involvement. I'm sure if you've read my recent posts you tired of hearing the nagging concern in 'change in course of treatment'. "Decision Remorse" ( I caved and allowed others to make that decision for me). You should see my pro and con sheet- HA! I have my daughter to worry about as she too tested positive. I'm focusing my energy on helping her, as it's the most important aspect of all. We'll receive genetic counseling plus her Dr. is taking a seriously proactive approach. Thank Goodness.

Not feeling any peace I thought would come with finally beginning treatment (6 months worth) rather it's creating more anxiety as I search the forum to find some lacking pros to add to my list for neo. It's almost as though I'm still "in treatment decision mode" since the jury is out if chemo will be productive, non-productive OR counterproductive. I hate to mess up a pretty good start since the tumor is clinically a little over 2 cm. w/no evidence of node involvement. My 2nd treatment is Monday. Clearly it's early into treatment. I'm learning patience though it's difficult.

How's that for once again veering off subject with such a delightful positive attitude? Tongue

I hope I didn't mess-up posting here. Again, thanks! Good information (and probably not the place to vent though I plead temporary situational insanity Wink

)

Edited because I had my greater > and < less backwards.

Posted By: 123Donna
Date Posted: Oct 14 2011 at 3:02pm

Mindy,

Please vent away! I completely understand your frustration when we're facing these types of decisions and delays. Will they be doing any type of scans (ultrasound, mammo, MRI) during treatment to see if the tumor is shrinking or will they just wait until surgery to know if you have pCR?

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

Posted By: mindy555
Date Posted: Oct 14 2011 at 9:18pm

Hi Donna-

I wrote you a really long response which was edited by at least 2/3rds. A relief, eh?

Conclusion: MDA isn't the place to go if you want to call the shots on your treatment (which is reasonable and acceptable by other doctors) and get the ball rolling at the same time. I felt I HAD to do something.

While I can see both sides of the coin, the advantages and disadvantages to both neoadjuvant and adjuvant, the waiting game seems like a risky proposition when you're dealing with an aggressive cancer, doesn't it? May as well throw BRCA positive into that equation.

Yes. Tumors are closely monitored for responsiveness both by physical exam and ultrasound. MDA doesn't believe in any extra exposure to radiation than absolutely necessary. I'm quite good with that.

My oncologist at MDA is a BRCA, TN savvy associate professor who strongly believes in their protocol, or at least sold it that way. She was convincing in the beginning.. but then I found my way back to my own reasoning that led me to my well thought-out decision. I simply went to the wrong place. I got an overwhelming impression they stick to protocol like crazy glue until they find it absolutely isn't working. THEN options start opening up. My impression is those options include a different chemo and/or they proceed with surgery followed by chemo. If anyone else who has been treated at MD Anderson was told differently or has/had a different impression I'd love to hear what it is.

My pessimism and just plain anger is rearing its ugly head today. I apologize. I didn't stay true to my convictions- a process that took too long to begin with coupled with no qualified surgeons to take care of my needs. Now I feel stuck in a system and somewhat of a lab rat.

Maybe part of it is I'm finally really ticked over this tough cancer. Either way, I woke up again in panic mode. I have to dig myself out of this. Somehow...

Kickboxing anyone?

As of last wk: 2.6 T2 MO NO/ BRCA1+, KI-67-99% My 36 year old beautiful inside and out daughter with a heart-of-gold is also BRCA+ - She has my 3 amazing granddaughters - truly wonderful and talented girls, 27 year old son hasn't been tested.

And my fav statement of all which is made here a lot and is so very true... We're all in this together. I have my sisters around me to keep me sane. (somewhat) I hope I can contribute and be of value here. I must shake some of this craziness I feel. God bless this forum of truly compassionate and AMAZING women. I'm inspired by you all.

Posted By: Wade
Date Posted: Oct 14 2011 at 11:02pm

Hi Mindy,

My name is Wade, and my wife was diagnosed May 6, 2011 with triple negative breast cancer. Tumor size (via mammogram and ultrasound, with MRI a week or so later) was about 3cm x 3.5cm. No palpable or machine detectable lymph node involvement. Our docs recommended chemo first, with the argument that either way she would need chemo, surgery and radiation, so why not do the chemo first and see if the drugs were working to shrink the tumor. This sounded reasonable to us, though my wife REALLY didn't want to do chemo. She started dose dense AC 4X, then Abraxane 4x (due to Taxol shortage). I don't recall the exact date, but mid June was when she started, with treatments every other week. By her third treatment, it was difficult for our chemo doc to feel the tumor, and by the fourth, she couldn't feel anything. Last chemo treatment was Sept 23rd, and she had a second MRI last week. The difference between the two MRIs is amazing. My wife is small breasted, and the tumor appeared to take up half her breast in the first MRI. In the second, the tumor is undetectable. Absolutely amazing.

We don't yet know the extent of lymph node involvement, as she hasn't yet had surgery. That will be next week. My wife hasn't yet agreed to do the BRCA testing, but I hope she does, as we have three daughters, ages 22, 25, and 27.

I don't know if this is helpful at all, but I figured I would throw it out there to see if it helps anyone. I wish you all the best in your battle with the beast.

Best regards,

Wade

Posted By: mindy555
Date Posted: Oct 15 2011 at 12:20am

Thank you so much Wade. Every little bit of input helps me tremendously... more than you know, I promise.

I wish your wife the best too. She's lucky to have you here so involved in her treatment and involved on the forum. It's so nice you're here sharing this way.

I love hearing stories of those who did well with neoadjuvant.. it just makes my day. My 2nd dose is next Monday morning.. so I'm defo a newbie.

I'm here searching for others who had neoadjuvant to lift my spirits, very selfishly today. I've just been down emotionally. Really this is a first as I've handled everything very well up until the last few days.

I need to start a new thread because about 30 miunutes ago I think I'm already starting to experience some physical side effects from the Taxol. Is that possible if I had my first chemo round last Monday? Mouth sores and nausea. I need to know about this Magic Mouthwash.

But truly, I've felt just fine up until now. Weird. I will say my lump is big and plump no softness. I didn't expect any shrinking after one treatment though.

Thanks again. YOU HELPED A BUNCH in a single post. That's the truth! Hugs for your sweet wife and have her give you a big hug too. You certainly deserve it.

Posted By: cheeks
Date Posted: Oct 15 2011 at 1:01am

Mindy,

My onc had me swish several times a day with baking soda and water (particularly after eating) to help with or help prevent mouth sores. About a teaspoon to 4-6 ounces of water. I also took my Emend (for nausea) the morning of chemo (before it started) and for about 3 days afterwards. I was fortunate that i didn't experience nausea or mouth sores. I also did not have neoadjuvant treatment. I do have some foods even this long after chemo that really turn my stomach - things that i always really liked...chicken, eggs, pork still make me gag at times - i just don't throw up very often - even when i was pregnant both times i didn't...for some reason i really craved beef during chemo.

Maybe some others will have mouthwash suggestions for you. My dentist also prescribed something to use for my teeth during chemo (onc. had me get all dental work done prior to chemo) She also said no uncooked fresh fruits or vegetables (just in case of any contamination that might make me sick)... eat some yogurt or take some probiotics too (I got C. Diff during treatment), wash hands frequently... I don't specifically know how far out you can feel nausea from the chemo but i certainly know you can have an upset stomach etc. from other things related to having chemo.

Hope this helps a little,

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.

Posted By: Wade
Date Posted: Oct 15 2011 at 1:41am

My wife's side effects started kicking in pretty quickly as well, within a week - though she didn't have any nausea. There were a couple of drugs offered for nausea - Ativan (sp?) and Compazine. They gave her a prescription for these before she even started chemo. Our chemo nurse said to start with the Ativan, under the tongue at the first sign of nausea. She said it works very quickly that way. Then every 4 hours as needed. The Compazine they prescribed was 10mg every 6 hours, as needed. She said said they could be used in combination, but stagger the start times. Obviously, you need to work with your own team, but that is what they told us. They also said to call if these drugs didn't work, as they had others to try.

As to the mouthwash, they recommended Biotene ( over the counter) and also a prescription that the pharmacist had to mix up, but I can't find my notes on that.

As to being a newbo, I would just say that I used to say that I was an ignoramus about cancer, and pleased to be one. Now I know just a tiny bit, and want to know a whole lot more. It is incredible to me how quickly your world changes when the doc tells you your wife has cancer. I was the one to tell her...that was the hardest conversation we ever had.

As to being selfish, I would say that you should be selfish now. You should also ask your friends and relatives to help you out. I would bet most of them want to help, but don't know how, so they have a tendency to stay away. Our friends and family really stepped up, and we asked them to. I know when my sister-in-law had cancer, I didn't know how to help, so I just kind of stepped back. I know now that I was wrong, but hey - you live and learn, right? Good luck to you, and if I can find the mouthwash scrip, I will post it here.

Posted By: Wade
Date Posted: Oct 15 2011 at 9:38am

Hi again Mindy,

The mouthwash they prescribed for my wife is called "Cool's solution". I don't know much about it but the pharmacist had to mix it up - it was very inexpensive. I'm sure you can google it and find out what is in it. Hope this helps!

Wade

Posted By: 123Donna
Date Posted: Oct 15 2011 at 11:44am

Mindy,

I always felt the side effects from chemo about 2 to 4 days after treatment. I also took Emend, Ativan and Decadron (steroid) for nausea and never had any. I had mouth and stomach issues with taxotere and cytoxan. I mostly ate "white" food like yogurt, bananas, turkey. Coffee, Fruit and spicey foods just tore up my stomach. It improved within a year of finishing chemo. As far as mouth sores, my onc recommended a solution of baking soda and salt. So every morning I'd put about a teaspoon of each in a large glass of warm water and mix it up. Then whenever I ate or was by the bathroom, I'd rinse my mouth with it. It helped with the mouth sores and gum problems. Biotene is also good to help with dry mouth problems.

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

Posted By: debB
Date Posted: Oct 15 2011 at 10:38pm

Hi Wade and Mindy,

Wade, I was diagnosed 4/29 and also finished my neoadjuvant chemo 9/23! Sounds like we had the same things at the same time!

Mindy, I understand all of your concerns completely. My tumor was growing very fast. When two weeks passed between when I found the lump and the first onc appt, I felt like it had grown. My onc made the comment 'not even the fastest growing cancers grow that fast' but then said nothing when the MRI confirmed that it had. It had grown 1.6 cm in the 9 days from mammo to MRI and was another 9 before I started chemo...very scary. It was 3.9 cm on the MRI. They did not biopsy my nodes prior to chemo.

My onc is a late 50's, 60ish guy, very by the book, only recommneds what published research supports. He was recommneding surgery first. The surgeon that I had seen, is 30's new to the area, and his research love is TNBC. He pushed for neoadjuvant chemo and has told me more than once that treatment for TNBC is headed towards all neoadjuvant chemo but we don't have all the research to support that yet and many docs will only do what is proven by research.

Interestingly enough, even though MDA has the research to support the Taxol first, I had the AC first, every other week for 4 cycles, then 12 weekly Taxol. Somehow, I missed the post indicating the Taxol first, so I was really freaking out when I saw the study indicating Taxol first and the improved outcomes but I was already doing the opposite. Very much like Wade's wife, two weeks into the treatment I had to show the onc the tumor and by three weeks- weeks, not treatments, I could no longer feel it myself! I assured myself that even though that wasn't what MDA would do, it was clearly working for me. Who knows, maybe it wouldn't have been as great for me the other way. Anyway, two weeks ago I had my follow up MRI, followed by mammo, magnified views, and ultrasound and the tumor is GONE! They can not find it at all, only the titanium marker!! I am having a lumpectomy on the 25th and hoping they find pCR!! (BRCA neg)

As far as side effects, the AC was much harder for me overall. They suggested that I do the anti-nausea meds for the first three days, which I did, but I never noticed a difference when I stopped them, just felt crummy all the time. I had some mouth sores, but nothing bad, almost always gone in 2 days. With Taxol, I seemed to do fine other than fatigue. I had tx on Friday and about #9, I started feeling crummy on Sundays. About #11, the terrible muscle aches set in and are just starting to lessen (yesterday the doc suggested I try magnesium). The Monday after #12, I woke up with my fingernails hurting horribly and was sure they would fall off. 3 weeks later, within the last week, they hurt less and looks like maybe they will stick around. Last week I had a lot of swelling that a few days of Lasix fixed. I have some mild neuopathy that didn't start showing up until #11 and I am hoping progresses no further, but no guarantees. So really, the bulk of my side effects from Taxol were at the very end or after it! And while I would rather not have them, it is a small price to pay. I am within target weight, reasonable fitness level, so don't know how much this helped. I also took supplements to help. Unlike many oncs, mine did not object.

I understand wanting it gone. I would also point out though, that chemo is a systemic drug, so it can be working on anything else there since our TN nemesis does not need to spread through the lymph nodes. Doing chemo first does enable them to monitor your response, but if you did adjuvant chemo, you wouldn't know if it was affecting any of the little buggers that might be floating around, so to speak. Since you are BRCA+, I assume that they are still recommneding the mastectomy. A colleague had TNBC 3 years ago but never did testing since her kids were adopted, despite a strong family hx. A few months ago, she ended up with a second type of BC and tested BRCA positive and now has had the dbl matectomy. If you are at MDA, I assume they are being very mindful of the genetic piece!

It must be very hard feeling like you are going against your initial instinct. There is a ton of research out there, and great success stories with neoadjuvant!! I hope all of this was not tmi. I truly hope that you soon start feeling the tumor shrinking,feel better about the decision, and kicking some cancer butt! Best of luck to you!

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

Posted By: Wade
Date Posted: Oct 16 2011 at 1:03pm

Hi Ladies,

Definitely not TMI Deb. One of the things I look for here is more information!

My wife, Kerri, and I also spoke to our docs about the Taxol first regimen, but they argued that the MDA study was a retrospective study, and not a prospective , double blind, randomized study that is the gold standard of medical research. I argued back that you can certainly look back and learn from those who went before. In the end, we went with the AC first, then Taxol (or Abraxane), in our case.

Well, we're off to Lowe's, so I have to go...

Posted By: Lillie
Date Posted: Oct 16 2011 at 5:30pm

Dear Mindy,
It sounds as through you are having one of those days that I referred to as:
"Holding my breath" in anticipation that the chemo is really working. That causes hyperventilation and then I really go to pot. The difference was, I had the surgery first and never had the assurance that the chemo was working.

Please BREATHE and I'm praying that your tumor will just melt away. It is unsettling in the beginning, no matter which route you take.

God Bless,
Lillie

Here's to shrinking tumor!!!!!

-------------
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

Posted By: MrsLyons
Date Posted: Oct 17 2011 at 12:49am

Hi mindy!

I had neoadjunct chemo, AC and Taxol. My tumor shrunk immediately and by the time I was through there was only 2mm left...not bad when I started at 5cm!! They were able to get clean margins in surgery. If I hadn't had the chemo first, they would have left some behind for sure! I'm thinking of you and sending hugs your way!

Tina

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DX IDC TNBC 11/10 age 32, Stage 3a, Grade 3, 3.5 cm, 1/9 nodes, Right, KI-67 91%, BRCA-1, ACx4 (12/13/10) followed by TXx12, BMX w/expanders (6/1/2011), Rads begin 7/11/11

Posted By: mindy555
Date Posted: Oct 18 2011 at 5:29am

Thanks so much Donna, Blair, Deb, Wade, Lillie and Tina for sharing with your responses. You gave some very important and interesting points to think about, good tips and kind thoughts. With your input and after my local Onc visit today, this is starting to take a positive twist.

I had my 2nd Taxol treatment at her office after we got caught up. She's a "surgery first" kinda doc, though certainly does her share of neoadjuvant treatment when a tumors are larger than 5 cm or are in a difficult position. Her preferred treatment is A/C followed by Taxol. We're obviously carrying out MDA's t sequencing (for now) since I committed and treatment is underway. She's totally supportive- we'll monitor by ultrasound here and she highly recommends their check-up/monitoring expertise at several intervals like we agreed at MDA unless a change is noticed by me and a change of course is necessary. Ego never gets in the way of her extensive breast cancer (including triple negative) expertise. She has more breast cancer patients than any other oncologist in Oklahoma.

By simple physical examination the tumor has grown since the first treatment. What I find really odd along with the growth is the way it's actually morphed into a different shape & dimension (which I only noticed the day before). What was a vertical mass is now horizontal in shape. She said the total mass volume has probably decreased. Plus, a centimeter tape isn't the ideal way to measure...though it gave us a fair indication until my ultrasound next week. Maybe I should be, though I'm not overly concerned after her explanation I wish I could articulate, but can't at the moment. I'll find out and post if anyone is interested.

Having nothing to do with the published report of sequencing, my Onc believes the Taxol first methodology sequencing has its own merit. She obviously prefers A/C first or she wouldn't use it. For those of you who received A/C first, I wouldn't worry too much for all the reasons already mentioned. I know I'd love to see my tumor shrinking. I wasn't jumping with joy over growth, albeit hopefully very temporary or I'll be a relentless squeaky wheel.

Any other neo & Taxol first people out there with growth before shrinkage? I met a lady at MDA whose tumor on Taxol shrunk down to nada after her 3rd treatment = 3rd week.

One more question. My regular GYN wrote an RX for Clonazepam for anxiety with 1 refill when I was first diagnosed. I don't take it often as it just makes me sleepy. I noticed many of you, mention use of Ativan, like your wife Wade. My Onc wants me to change nausea med coupled with Ativan instead. Realizing everyone responds differently, does Ativan make you overly sleepy? I ask because my anxiety peaks when I first wake up in the morning- and starts to diminish when I get up and get busy- but I'm sleepy in the process. I've tried it at night and it doesn't prevent the morning freak-out. You should see how quickly I hop out of bed lately. Those attacks are the pits. I thought they were a thing of the past as I hadn't an episode for about 3 decades.

Posted By: 123Donna
Date Posted: Oct 18 2011 at 7:58am

Mindy,

I think my Ativan prescription is 1 mg. If I take it during the day, it might make me more sleepy than I'd like. The pill can be split in half and I've found during those times I needed to take it during the day that a 1/2 a pill works fine without making me sleepy.

Donna

Posted By: Wade
Date Posted: Oct 18 2011 at 8:14am

Hi Mindy,

I saw your post and wanted to respond while things were fresh in my memory. My wife's tumor grew substantially between diagnosis and treatment, we think(by we, I mean the docs-this is not my bailiwick) primarily due to swelling from the needle biopsy. It then seemed to shrink pretty quickly after starting the A/C. Kerri (my wife) was getting biweekly treatments, with a Neulasta shot in between.

I can't comment on the Ativan, as my wife only took it to help her sleep, which may or may not tell you anything.

As an aside, I'm a hunt and peck typist, so if my answers seem terse, it's probably because of my typing limitations...

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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

Posted By: mindy555
Date Posted: Oct 18 2011 at 12:19pm

Deb- I agree with Wade- NEVER TMI! Great post.

Before I found out I was BRCA positive I requested a bilateral mastectomy. While it surprised everyone- I felt strongly about removing both breasts out of fear of ever having to deal with another breast cancer again- even though the percentages for BRCA negs. are so low. Hence, I was mentally prepared from the get-go. Thanks to modern medicine they'll do the Oophorectomy at the same time.

The only breast cancer I know of was my mother who had early onset breast cancer at age 38. Back then they did a radical mastectomy followed by radiation. Her other breast remained cancer-free. She lived for over 30 years until she developed AML.

I too am on the slim side with a good BMI. When I was getting opinions I visited a few plastic surgeons who said I was only a good candidate for expanders due to my lack of body fat.

Posted By: Wade
Date Posted: Oct 20 2011 at 8:06am

Good morning, ladies

Wish us luck. We're off today for lumpectomy, sentinel node biopsy and Medi Port removal. Here's hoping we popped ol' Green Teeth right between the eyes...

Wade

-------------
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

Posted By: debB
Date Posted: Oct 20 2011 at 8:20am

Dear Wade,

Wishing you and your wife the very, very best of luck. I hope things go smoothly and they find a big fat nothing!! Here's to a speedy recovery and putting this in your rearview mirror!

Deb

-------------
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

Posted By: Charlene
Date Posted: Oct 20 2011 at 9:19am

Wade,

I wish you and your wife nothing but good news and a fast and full recovery from surgery. Radiation is way easier than chemotherapy.

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

Posted By: mindy555
Date Posted: Oct 20 2011 at 2:01pm

Wade!! OH, the VERY best of luck!!!!

I pray you hear the news that's music to your ears!!!!

I'll be thinking of you guys today!!! -- Mindy

Posted By: mindy555
Date Posted: Oct 20 2011 at 3:01pm

Deb-

I've been meaning to tell you what an amazing inspiration you've been to me. If you caught some of my posts you know how I felt about my change in treatment after having my mind set on surgery first. Reading your tremendous success story gives me this hugely warm surge of hope gilded with faith.

This chemo sequencing study means nothing when you've acheived what YOU HAVE! I'm thrilled beyond words your tumor shrunk down leaving only the tumor marker. Awesome, simply awesome Deb! I feel like your personal cheerleader (sans the pom poms) though mean it with my whole heart.

So now you have a follower. Lucky Girl. Tongue

I'll be upfront about looking for your posts. I hope that doesn't sound stalker-like creepy.

Seriously, you've been so helpful as I begin this path. I have months to go, taking it a day at a time. I love your posts and I'm majorly happy FOR YOU. Never be concerned your posts are too long. I know I love reading every word and I'm sure I speak for many others here. Keep posting when you're in the mood, my dear. And, know you've made the day of a woman miles away more than a few times by being here and sharing...

Hope you're having a good day- Wishing you MUCH continued success! -- Mindy

Posted By: cheeks
Date Posted: Oct 20 2011 at 3:26pm

Mindy,

I can't say why your tumor might seem bigger or measure bigger right now but in rereading all my reports I was confused and started asking questions here on the forum. Of course, mine grew rapidly as most others or i guess it wouldn't have been a grade 3. The doctor who did the core biopsy took 2.3 cm because he went into it more than one time. (this was the amt. it says on my report) He didn't use any ultrasound because it was clearly like a golf ball right under and surrounding the nipple which I could see and feel myself. I will say "estimates" or "measurements" of size were reported as 5-6 cm after the biopsy with hand measuring and MRI of both breasts. I didn't have chemo before surgery but when they actually removed the tumor and sentinel node it's measurement was 4.5 cm. I couldn't tell you why there was a difference other than the way a few people here answered my questions:

...possibly different views of the tumor with different tests

...swelling from the biopsy procedure

...surrounding tissue was included in the measurement

When I originally found the lump it seemed like it was down lower in my breast and of course smaller but as it grew larger that's where is ended up.

My onc. (wasn't in a clinical trial where "rules" had to be followed) didn't say too much about the natural antioxidants so I did get a load of broccoli tea (maybe from Johns Hopkins) and drank that some (didn't taste too good) and continued with the fruits i could eat although i was to cook them in case of germs so I did continue to use blueberries -i just didn't go overboard with anything.

I'm glad you are doing okay with your treatment. I always enjoy reading your posts.

Blair

Posted By: cheeks
Date Posted: Oct 20 2011 at 3:30pm

Wade,

I am thinking about you and your wife today. I am reminded of my husband being with me each time there was a test or procedure to be done and i was so thankful he could be there with me.

Blair

Posted By: mindy555
Date Posted: Oct 20 2011 at 3:35pm

I have to add, everybody's input is valuable. This forum is a wealth of information, the women and gentlemen here are amazing, compassionate people. I feel fortunate to have found you early on.

While I don't always have time to read and more importantly contribute as much as I'd like.. it's comforting to know there's a place to come where everyone truly understands. I know we ALL feel this way.

Thanks to each of you for giving your valuable time. For many it's a major struggle to have enough energy to write, though you do to help someone else going through their personal battles. Plus everyone totally understands when you're silent for a while.

Like I said.. AMAZING.

Posted By: mindy555
Date Posted: Oct 20 2011 at 4:18pm

Blair, Thanks so much for your thoughtful response.

I just edited this to give the right measurements.. after looking at my reports. El-duh Smile

I had a needle biopsy with 4 tissue samples as the first true diagnostic. I'm now confused where my original measurement came from. I had 3 subsequent tests including MRI, CT & Pet Scans.

I expected the tumor to grow prior to chemo. I had a Ki-67 of 99% if that's even relevant.. it seems it did come into play as a growth proliferation rate, though some docs don't pay much attention to the Ki-67. They DO put it in every report at MDA. (Mine too seems to be growing downward though it's lower following the rim of my breast near my ribs.) What I wasn't expecting was growth after the chemo started. It took my local oncologist back, too. She whipped out her measuring tape just shaking her head. Comforting. NOT. When I told her it now hurt a lot (off and on) she said that was a good sign. There was so much to cover, I don't remember her explanation why the pain was a positive.

What started as a 1.88 or 1.9 cm tumor when I was first diagnosed, then hopped up while I was hunting surgeons in the state and waiting on second opinions. At MD Anderson it was a 2.6 x 1.8 x 2.6 cm. Not bad considering, and most of that growth was at the beginning after diagnoses.

When I began mega doses of broccoli sprout extract in gel filled pill form it only grew 1 cm in 5 weeks. I found that significant. I'm NOT suggesting anyone should take mega doses of this extract! Consult an expert.

The 2.6 cm was from my ultrasound at MDA. I think I read usually ultrasounds render a smaller than actual size measurement.

Now it seems to be taking off in the wrong direction. I think your three points have a lot of merit as to why the tumor "appears" larger. Since chemo started I've kept my hands off it for the most part, unlike earlier days when I felt around a lot.

Anyway...

I'm due for an ultrasound on the every 3 week schedule. Gosh, I hope we're not talking major growth.

I truly enjoy your posts too, Blair. Hope you are feeling well and thanks for sharing all that you do! Hug

Posted By: Suze35
Date Posted: Oct 20 2011 at 5:51pm

Mindy - I'm more of a lurker here, and have just seen your story here. I am one of the rare persons who ended up becoming chemo-resistant during my neo-adjuvant therapy. After I completed 4 rounds of AC, my MRI showed a 50% overall reduction in my tumor load. I then started Taxol/Carbo x 12 weeks, and initially had a fantastic response - the tumors and nodes seemed to melt away. At about 7 weeks in, both my BS and MO declared my breast exam was normal. I did not have any other testing, and by the time I got to surgery 8 weeks later, I knew my cancer had been growing back, but wasn't getting much good feedback from my doctors. When my tumors grew - they were spreading out, and did not feel like lumps. It is why my doctors did not feel there was much change, but I knew differently.

I will say that when the AC was working, I felt pain in my tumors. That stopped after awhile on the Taxol/Carbo. So that may be why your doctor finds it a good sign.

Please don't let my story scare you - I hope instead that you can take away good information from it. If you think your tumor is growing AT ALL - it should be evaluated ASAP and treatment plan adjusted accordingly. The whole point of neo-adjuvant chemo is to assess response to treatment - and to be able to make changes. If your doctor is just shaking her head, but giving it more time, to be honest, that concerns me. There are other chemos out there that DO offer a good response. But the time to try them is as soon as you realize what you are doing isn't working!

This is only my opinion - but if your ultrasound (which I hope is soon) shows ANY growth, I would insist on changing treatment. Some doctors would go to immediate surgery, then another chemo regimen. Others might change the chemo first.

I wish you much luck!

-------------
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

Posted By: debB
Date Posted: Oct 21 2011 at 1:10pm

Mindy,

Thanks so much for the very kind words and your good wishes! I am fairly new to posting things here but have followed along silently for months since I was diagnosed. This is such an amazing group of people and the amount of shared knowledge is incredible. I have learned such an unbelievable amount here and I really think knowledge makes us better advocates for ourselves.

I am all for sharing information that might ease somebody's mind or make the road a little easier for the women behind us! What is most comforting of all is that everyone here 'gets it' and understands the freak out nature of not only do I have cancer, but I have TNBC. Very few of my friends get that but we can come here and not have to explain.

I had to smile at your comment that you are leaving the tumor alone because that was so me too! At first I was at it all the time because it seemed to get bigger by the day! Once I started treatment, I had chemo on Friday and would see the onc first, so Friday was my day that I would allow myself to weigh myself and check the tumor. More than that probably would have driven me bonkers, and it is a short drive these days!

I'm with you- just taking this whole thing one step at a time, one day at a time,a nd living my life the best I can! Here's hoping that your nasty ol' tumor starts the disappearing act soon!

-------------
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

Posted By: Wade
Date Posted: Oct 21 2011 at 1:47pm

Hello everyone,

Thanks for the kind thoughts and wishes. I want to echo debB's thoughts on being a lurker. I have been reading along for quite some time, and never posted as I thought it might seem weird for a man to be posting. and I didn't have much to add.

Mindy, your nervousness about neoadjuvant chemo, and my wife's good response to same made me want to reach out to you.

Kerri has pretty much left the research and treatment recommendations up to me, and that's a pretty daunting responsibility when you're starting as a total cancer ignoramus and you want to do something NOW to get rid of the cancer. She sort of checked out when she got the diagnosis. So you have all been a great help to me, and I want to acknowledge that, even if belatedly.

Kerri's surgery went well - She had her MediPort removed, which had been irritating her constantly. She's pretty thin, and the tube rubbed against her breastbone. There was really no tumor on the mammo, just the original titanium marker and the newly placed needle. Her surgeon said that she can often feel tumors inside the lumps she takes out when she rolls them in her fingers, but in Kerri's case she felt nothing. She took out at least two lymph nodes for dissection, and palpated a few more, and said the ones she felt seemed good, with no hardness or other indication of cancer.

So, it's still early days, but so far, since my wife first showed me the lump in early May, things have generally gotten better. OK, that part is a lie, because the next two weeks are when we found out for sure it was cancer, then triple negative, and then reading up about TNBC and how nasty it can be. But after that, it started getting better - we found a good team that specializes in breast cancer, and the treatments seem to be working.

So now we have to find out what we can about radiation...

Thanks again for being a great source of help and information!

Wade

-------------
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

Posted By: debB
Date Posted: Oct 21 2011 at 3:12pm

Hi Wade,

I am so glad to hear that your wife did well with her surgery!

I see that you are in SE MI and said the surgeon is a she...just wondered if you were willing to share who it is? I am in Illinois but travelling to Ann Arbor next week for my surgery (Tuesday) with Dr. Newman. We liked her tremendously when we met her, very compassionate and thorough and also seems to be highly regarded from the few people that we talked to.

I guess here we are all stalkers to some extent

, but what a great group from which to learn! Maybe as your wife gets further out from the shock of this whole business, she will feel comfortable enough to join the site and feel welcomed into the family as well! Wishing her a speedy recovery...

Deb

-------------
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

Posted By: Suze35
Date Posted: Oct 21 2011 at 3:22pm

Wade,

That is wonderful to hear your wife did well with her sugery, and that her results sound so fantastic! Yayyy!! I wish her the best on her recovery, and keeping fingers crossed that the pathology comes out as wonderful as it sounds!

Best,

Susan

Posted By: Wade
Date Posted: Oct 21 2011 at 3:56pm

Hi Deb and Susan,

Thank you, and I'm happy to share whatever I can that might be helpful.

Kerri's surgeon is Dr. Cheryl Wesen, with Michigan Breast Specialists. She has been great, and was referred to us by another surgical oncologist, whose son played hockey with my brother's daughter, Dr. Bob Morris, whose specialty is ovarian cancer. Crazy how these little networks work.

I have heard of Dr. Newman, and it was all good. As I'm guessing you already know, she has a special interest in TNBC, and I've heard some interviews of her that I found on this website, I think.
Some friends of my mother-in-law have been to Dr. Newman as well, and liked her.

The U of M facility is first rate, from everything I hear. This reminds me of the line from JFK's speech at the University of Michigan when he referred to Harvard as the "Michigan of the east". Obviously, he was playing to his audience, but still, it is a point of pride...I may be a bit biased as my two oldest daughters graduated from Michigan, but hey, at least I'm up front about it!

Good luck to you both!

Wade

-------------
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

Posted By: mindy555
Date Posted: Oct 21 2011 at 11:31pm

Such awesome news Wade!! I'm thrilled! You've done a wonderful job as her advocate and I couldn't be happier for both of you.

MDA called yesterday. They want me there the 31st. I guess my oncologist was worried enough to communicate the growth, and so am I, so we'll see what re-direction they take in treatment.

Suze- I'm happy to meet you and thanks for sharing your story. I agree strongly with everything you said. I thought it may take a few treatments before this softened up and started shrinking.. but, growing is not acceptable. Yes, we gotta stay on top of it. I'll let you know where this leads and thanks!

Posted By: Wade
Date Posted: Oct 22 2011 at 12:33pm

Hi Mindy,

I'm glad to hear that you're going to see MDA again, though it's a bummer you have to. Good luck and know that we'll be thinking of you. We want that tumor to start shrinking!

Wade

-------------
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

Posted By: cheeks
Date Posted: Oct 22 2011 at 1:24pm

Wade,

I wanted to say to you and by extension to your wife that i also "checked out" in a very big way. I signed my medical power of attorney over to my husband and was just sort of there during all of my treatment. He in turn sought help from my 3 sisters and brother. As you can see by my signature my treatment ended 2 years ago this month and it has only been in the last 6-8 months that i have been able to come here (after lurking for a while) and talk about things. I feel for you and for her and I am personally proud of you for all you are doing for her at this time. I know how hard it was for my husband and how helpless he felt but he stepped in and was there for me when I couldn't do it for myself. I'm normally a strong decisive person as the oldest of 5 children but this whole thing knocked the pins out from under me and it took quite a while to recover not only physically but emotionally. I am usually the caregiver for my family and this time i had to rely on others which is not a bad thing.

My best to you and your wife,

Blair

Wife 33 years, mother of 2 sons age 26 and 28

Posted By: Lillie
Date Posted: Oct 22 2011 at 2:26pm

Hello Mindy555, Wade & Kerri, Blair, debB, Tina, Suze35,

I am so glad for this site. Just reading the interaction between all of you with similar and totally opposite situations is what it is all about.

Wade, there are, or have been many men on this site advocating for their wives, mothers or loved ones. Steve, is one of our biggest advocates, helping women who post here who really need a helping hand. All of us who have husbands who supported us in the beginning of this journey and still do today. How Wonderful.

Blair, I too "shut down" during my treatment. Not to the extent that you did, but I am glad you are back-up and headed in the right direction. I needed my props kicked askew so that I could learn to 'receive care' from others, instead of always having to be in control. It has been a humbling journey. I enjoy your posts.

Mindy, It sounds as though you are having to relinquish control also. It is hard, but we don't always know what we need; especially at a time like this. I'm praying that whatever happens next will kick 'the stuffings' out of your tumor.

debB, Tina and Suze35, Thank you for sharing. Taking it one day at a time, deciding to jump in and share your stories, all that you say can be just what someone else needs to hear. Anyway, Thank You.

As a 5 year survivor, please let me be an encourager to all of you.

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

Posted By: cheeks
Date Posted: Oct 22 2011 at 7:49pm

Lillie,

Thank you for your post and encouragement. I was going through a lot and the breast cancer was the "icing" on the cake. I also, like you found it difficult to give up the control and struggled against it even though it was necessary. My work for so many years at DHS determining eligibility for Medicaid was also another area of my life where I was assisting others during very difficult times such as very ill loved ones and children having to place their parents in nursing homes - needless to say I did not relinquish control gracefully and i definitely was not my usual self. It's always good to know others have experienced the same type of thing. I think at first I assumed most people handled it better than I was but I know now that is not the case. That's one of the many reasons I love coming here to talk.

Mindy,

You are welcome. I am glad they are sending you back for tests and your onc. noted the growth. I'm assuming the goal or part of it is for the tumor to be shrinking not growing. Since I had chemo after surgery I don't have a lot of knowledge about what is supposed to happen. It's good to have them watching you so closely. I also felt my tumor a good bit since it stayed around for some time before surgery - like a bad companion! Take good care and I will be praying for the best for you.

Blair

Posted By: mindy555
Date Posted: Oct 22 2011 at 8:46pm

Blair- Because I believe so strongly in the power of prayer, I can't think of anything more profound than being in yours. Thumbs Up

Something's gotta give. My husband said at my last oncologists visit she said not to expect shrinkage until shortly after the 3rd Taxol treatment. I don't remember that AT ALL, which means nothing. That's why I take another pair of ears and a tape recorder.. except for this last time. I could have sworn it was in context with losing hair.. not the tumor shrinking. They used to give higher doses of Taxol-- every third week I believe at the weekly dose x 3. Then research found the every week @ smaller dose regimen was better. (For many, I guess).

It's been a bummer day here. I'm just discouraged. It seems nothing has gone right since I first discovered this evil ever-growing bugger. I do have good Dr's in my favor... but they can only do so much. Just like they both said after their many optimistic comments... "no guarantees". Yes, I know there's no warranty that says chemo will work the way it should.. or that I will remain disease free. While the docs aren't living w/ this, you know they have to be frustrated when it comes to treating patients w/ TN.

After all this waiting to be treated I was hoping to see progress, but at least they promised a close monitor. I have to believe that's exactly the course they're following or my vocal chords will be exercised in a yet more aggressive fashion. I'm quite good at that. I know the doc at MDA was a little worn down after all my devil's advocate questions on my second visit... and now some of those "what ifs" are coming to fruition. This proves to me both oncologists are communicating though. I hadn't contacted her, so my onc here must have had some concerns regardless of what she said.. It had been a while since I'd seen her, and I know just by feel it's alarming. Plus, changes after 3 weeks doesn't include growth while waiting.. obviously not a good sign.. though again we're going by feel and measuring. The ultrasound should give us some more definitive answers. If the purpose of neo is to measure how well the chemo is working, they'll need more in their arsenal to move this in the right direction. Can I ramble or what? Rhetorical - we already know THAT answer. ;)

Posted By: Wade
Date Posted: Oct 22 2011 at 9:43pm

Thank you Blair and Lillie -

It feels good to know that Kerri's experience isn't a fluke. I appreciate your taking the time to make me feel welcome.

Mindy, I hope this starts getting better for you soon...

Wade

-------------
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

Posted By: cheeks
Date Posted: Oct 22 2011 at 10:46pm

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. Hug

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

Posted By: cheeks
Date Posted: Oct 22 2011 at 10:47pm

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

Posted By: Suze35
Date Posted: Oct 23 2011 at 10:47am

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.

Posted By: Barbi
Date Posted: Oct 23 2011 at 11:00am

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!

-------------
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.

Posted By: Wade
Date Posted: Oct 24 2011 at 2:56pm

Hi Deb,

Good luck with your surgery tomorrow! I hope everything goes well, and you hear good results!

Best regards,
Wade

-------------
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

Posted By: Wade
Date Posted: Oct 24 2011 at 3:03pm

Thank you, Suze35

I appreciate the kind words. I hope you have a great day, and good luck with your new chemo regimen!

Wade

-------------
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

Posted By: debB
Date Posted: Oct 25 2011 at 7:40pm

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

-------------
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

Posted By: Lillie
Date Posted: Oct 25 2011 at 8:01pm

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

-------------
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

Posted By: Wade
Date Posted: Oct 25 2011 at 8:06pm

Hi Deb,

That's fantastic! I'm amazed you're able to post already! I hope all your results come back clear. Congrats!

Wade

Posted By: mindy555
Date Posted: Oct 25 2011 at 8:33pm

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

Posted By: Wade
Date Posted: Oct 25 2011 at 9:45pm

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

Posted By: cheeks
Date Posted: Oct 25 2011 at 10:44pm

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

Posted By: mindy555
Date Posted: Oct 25 2011 at 10:59pm

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

Posted By: mindy555
Date Posted: Oct 25 2011 at 11:15pm

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.

Posted By: mindy555
Date Posted: Oct 25 2011 at 11:40pm

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 Clap

Edit.. The charity name is Locks OF Love not FOR Love. Just an FYI for anyone interested.

Posted By: mindy555
Date Posted: Oct 26 2011 at 12:50am

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.

Posted By: Barbi
Date Posted: Oct 26 2011 at 10:12am

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.

Posted By: Barbi
Date Posted: Oct 26 2011 at 10:14am

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.

-------------
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.

Posted By: Wade
Date Posted: Oct 26 2011 at 10:30am

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

-------------
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

Posted By: debB
Date Posted: Oct 26 2011 at 10:34am

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

-------------
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

Posted By: Suze35
Date Posted: Oct 26 2011 at 11:45am

Mindy - Thank you so much for your very kind and lovely thoughts, they truly mean a lot. You sound like such a fighter and it is great to hear that in your posts. I've reached a place of acceptance with where I am at, but I will continue fighting with all I have to stay here for my children. I try not to look back at how I might have done things differently - the honest truth is, I don't think anything would have changed my outcome. My tumors came up so quick (5 months between clear mammo and two 4cm tumors), and were SO aggressive with every negative indicator there is (extensive LVI, node involvement, multi-focal, etc.), that I think the beast was out by the time I was diagnosed.

Unfortunately, standard of care means no scans usually. Even MGH would not have given me scans. I actually had an MO who went above and beyond standard of care - we did an MRI after my AC because we were not feeling a clinical change. We were surprised that there had actually been a 50% response! When I started the Taxol/Carboplatin (another outside-the-box treatment), my clinical response was initially so obvious, there wasn't any need to scan. The tumor I could feel literally melted away over 3 weeks. It wasn't until week 7 that I noticed my nodes had stopped responding, and by then, both my MO and my BS were convinced it was scar tissue. I was really starting to feel the effects of my chemo by then, and I think just wanted to hear what they were saying. My MO kept repeating that the chemo wouldn't work so well on the breast, and not the nodes. Not true after all, but it was good to hear. By week 11, my doctor told me she would set up a PET if I really wanted, but it wouldn't really change much in terms of surgery date, which was already scheduled. And I still wasn't feeling anything in my breast, although I felt my nodes were getting bigger - but I was told that was because I kept feeling them and making them inflamed. It wasn't until I was done with chemo and waiting for surgery (which I had 3 weeks to the day after I finished chemo) that I started to feel parts of my breast "thicken up." But at that point, it was just too late.

After surgery, I did a PET scan and we found 3 more nodes, so my BS went back and removed them and I headed to rads. During radiation, 2 supraclavicular nodes popped up, and they were added to the field. My scans were still clear of mets beyond that, so I started Xeloda with Avastin in the hopes of buying some time (bless my MO, she really did try), but it did nothing as I ended up with extensive mets after just three rounds.

I think that I am pretty chemo-resistant, unfortunately - although I hope to get some time out of the newer chemos down the road - so I don't know how much switching chemos mid-treatment would have helped me. But, that doesn't mean it won't help someone else - as I have seen women not respond to Taxol and yet have a great response to Carboplatin or Cisplatin.

I don't harbor any bitterness or ill will about how things went. It was my responsibility to be more vocal about scans - my MO would have scheduled something I'm sure if I had pushed, like she did for after the AC. She truly did her best to get me a great outcome - adding the Carbo, doing adjuvant chemo with Avastin, etc.

Whew! That was long! I'm not sure I have ever typed that out before, it feels good to let it go.

Deb - I am so happy to hear that you had a fantastic response to the chemo! I am looking forward to seeing you post your awesome pathology results when they come in! Even though I knew my path report wouldn't be great, I still felt an enormous amount of relief after my surgery - it really buoyed me to know that part was over. I hope your recovery continues to go smoothly.

Susan

Posted By: mindy555
Date Posted: Oct 26 2011 at 2:42pm

Suze-

I thought about how my post might make you feel and almost went back to delete it.. The last thing I wanted was for you to feel bad about not having scans. This is how dumb I am.. I thought they were part of the package when you have neoadjuvant therapy.

Please accept my apology. And ignorance.

I'm sure you and your doc did everything possible. I wish you much success.. you deserve all good things and plenty of time to enjoy watching your children grow old. I'm praying that's exactly what you get.

I'd feel extremely lucky to dance at my granddaughters' weddings. At 56 I've had a good life.. though I'm not ready to throw in the towel just yet. God willing.

xxxxx Mindy

Posted By: mindy555
Date Posted: Oct 26 2011 at 3:26pm

I'm learning so much from all of you.

As Wade says, I really am a TNBC Ignoramus.

Did I even get that right Wade? My brain and memory is shot.

I used to be fairly sharp. Hard to believe, I know.

A round of hugs for everyone here.. Hug

I'm so happy you're in my life.

Posted By: Wade
Date Posted: Oct 26 2011 at 4:41pm

Hello all,

We just got great news. Kerri's pathology report came back from her surgery - Lymph nodes - no tumor seen. Lumpectomy lump - no residual tumor is seen. I cried when I read it, and I'm crying again as I type it. We meet with the surgeon on Friday to discuss it.

And yes, Mindy, you got it right. I wish I were as ignorant about cancer as I was 6 months ago - ignorance is bliss and all that...

Here's wishing everyone great results...

Wade

-------------
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

Posted By: trip2
Date Posted: Oct 26 2011 at 7:21pm

Great news Wade!

Posted By: 123Donna
Date Posted: Oct 26 2011 at 7:48pm

Wonderful news Wade. Please let Kerri know how happy we are for her and you.

Donna

Posted By: Barbi
Date Posted: Oct 26 2011 at 7:48pm

So happy for you andKerri and those wonderful results!

Posted By: mindy555
Date Posted: Oct 27 2011 at 12:58am

Oh Wade-- I'm so happy for you and Kerri!! Nothing better than happy tears of joy. Continued success..

This wonderful news made my week!!!!

Posted By: Suze35
Date Posted: Oct 27 2011 at 11:25am

Mindy - you have NO reason to apologize, you didn't do anything wrong! I am not upset at all to talk about my journey, truly, and if it helps even one person, even better!! You are a very sweet, caring woman and your words really did touch me. You might be cancer "naive" but you are in no way ignorant! Keep hanging in there

Wade - that news made my night - I am so very happy for you and your wife!! What a wonderful reason to celebrate. Tell Kerri to treat herself gently, and when she feels better, go paint the town!!

Susan

Posted By: debB
Date Posted: Oct 27 2011 at 8:18pm

Wade,

What wonderful, fantastic news for you and Kerri! She is very lucky to have had you to step in and support her when this journey has been too much. Here's to continued success with the rest of treatment!

Deb

-------------
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

Posted By: Wade
Date Posted: Oct 27 2011 at 10:27pm

Hi Susan,

I've been reading your posts - I'm sorry to hear about your mets, and I hope the new chemo cocktail works for you. We'll be thinking of you.

Wade

Posted By: debB
Date Posted: Oct 28 2011 at 5:04pm

Hi All,

My pathology was not the stellar news that Wade and Kerri had :( Despite the MRI, mammogram, and ultrasound that all found nothing, there was still 2mm residual tumor. Still good, I know, but not eactly what we were hoping for. One of the nodes was 'suspicious' in the frozen section but they didn't find anything further in the final pathology, so declaring them clean.

I am a total lay person here making a guess, but am wondering if the node was suspicious, if that means it was likely cancerous prior to chemo and the chemo knocked it out. All speculation since we will never know now. It just changes those pesky numbers that are all a head game anyway! We all know this beast doesn't read or abide by the rules!

Okay, gonna have a bit of a pity party here then back to kickin' butt!

Deb

-------------
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

Posted By: Suze35
Date Posted: Oct 28 2011 at 9:55pm

deb - I know it is disappointing to have anything less than a pCR, but it sounds like you had a really great response! And from what I've researched on RCB (residual cancer burden), there really isn't much difference in survival rates between 0 and 1 - which it sounds like you might be in the RCB 1 group. It is possible the node was suspicious for chemo effect, which would mean it WAS positive, but the chemo worked on it.

Definitely talk to your doctor about your questions, but it sounds like you are in great shape. YAYY!

Susan

Posted By: Wade
Date Posted: Oct 28 2011 at 11:01pm

Hi Deb,

I appreciate your disappointment. I also think your results are stellar. I, too, am a lay person, and know next to nothing about medicine. But I do know a thing or two about measurement.

As you say, your results were still very good. But I wasn't quite sure how good. I make things for a living, and as part of the manufacturing process we have to measure what we make. I can visualize the difference between a 2mm sphere and a 3.9cm sphere. I wanted to verify the numbers though, so I googled for a formula for the volume of a sphere.

The volume of a 39mm (3.9cm) sphere (without the units) is about 31,059. The volume of a 2mm sphere is about 4.2. That means your tumor was 7,414 times bigger than it is now. Or said another way, the tumor is about .0002 times as big as it was.

OK, I know I'm a geek. And I'm a man, and we men have a tendency to want to fix everything. I hope I don't seem to be belittling your disappointment, because that is surely not my intent. I just wanted to check to verify what I thought in my mind, and I was still surprised at the ratio of the difference.

So please, have your pity party, then have a big ol' honkin' party for the 99.98% of the cancer butt you kicked!

All the best,

Wade

Posted By: kirby
Date Posted: Oct 29 2011 at 3:11am

Thank god for the geeks that know how to run numbers to really put things into perspective !

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: 123Donna
Date Posted: Oct 29 2011 at 10:39am

Debd,

I agree with Wade that you had a remarkable response to the chemo. Congrats and try to enjoy the good news. I know we all want absolutes, but a 2mm pCR is a very good response.

Donna

Posted By: debB
Date Posted: Oct 29 2011 at 6:10pm

Hi Guys,

Thanks so much for the encouraging words. In my head, I know that I had a great response, but everyone was so sure that it was completely gone that it was a surprise punch when it was not.

Thanks for mentioning about the residual tumor burden. I had not turned over that leaf, so to speak, since I was so sure that I didn't need to go there. Now I will start studying and making my list of questions. I want to cover all my bases at this point, not wish I had on down the line.

Wade, Thanks SO much for putting this into perspective for me! Nothing like a good, physical representation to show how much improvementthere was! I didn't find it belittling at all, in fact, it made me smile! I have even been sharing it with others!

Since I am back to work on Monday, I guess I will do some research, do a little celebrating, and get my list of questions going. Thanks guys, you all are the best!

Deb

-------------
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

Posted By: mindy555
Date Posted: Oct 29 2011 at 10:05pm

YAY Deb!!! I do understand your initial disappointment when expecting one thing.... but this residual tumor burden being so low sounds like absolutely fantastic results!!!

You did GREAT, girl! And now that surgery is behind you.. I hope everything from here on out enables you to rest easier and become a thing of the past.

Cheers and a big hug, GF! Hug

Posted By: mindy555
Date Posted: Oct 30 2011 at 10:53am

Packing for my trip to Houston. Slowly packing... I am SO not in the mood to go. I can see hair flying off my head (vivid imagination) landing on another passenger on this flight.

It started last night as I brushed through my hair before my shower. Big 'ole wads of hair, especially from the left side. I'll probably wear my hair up as to not shed in any public places. What a surreal experience, even though I knew it was coming. When I get home depending on how thin it is, I think it's time to buzz this off. I know, Barbie.. didn't you say not to do that? :)

Of course my computer comes with me. I'll have quite a bit of time between appts. and some work that needs to be done. Now the challenge is to pack ultra-light for mid 80 degree weather. With as much travel under my belt (mainly due to work) you'd think I'd have this down pat. Not me. I'm a Gemini and we always over-pack.

Take care my dear ones. I want nothing but good news from everyone when I return. This is such a short trip and I make it sound like I'll be gone for weeks.

A round of hugs to ALL Hug

Posted By: Charlene
Date Posted: Oct 30 2011 at 11:29am

Mindy,

You will be in my thoughts and prayers. I hope your time in Houston passes quickly and that you get some encouraging news. I never shaved my head--just had it cut to about 1/2" or so and then let it fall out on its own. I used to go out in the backyard and shake my head and watch it fall.

Wishing you the best,

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

Posted By: mindy555
Date Posted: Oct 30 2011 at 12:13pm

Now THAT'S a really good idea Charlene.. I may do exactly what you did! I know it would be easier on my head and I amuse easily- Ya know what, I'll do just that! See... all the great tips are right here!

Thanks so much for your good wishes!!!! Heart

Posted By: 123Donna
Date Posted: Oct 30 2011 at 12:25pm

Mindy,

Like Charlene did when my hair started falling out we shaved it with a 3/8" trimmer that I used for my sons. Over the next few days, the rest fell out. I'd stand in the shower and just rub my head and it would come out everywhere (plastered all over the shower walls). I had to rinse the shower to get rid of it all. It kind of freaked me out seeing the hair on my pillow in the morning so trimming it made me feel better. I'd say within 3 days most of it fell out.

Good luck on your trip. I'm an overpacker too!

Donna

Posted By: Wade
Date Posted: Oct 30 2011 at 4:03pm

Hello ladies,

Kirby - thanks for the kind words - I was nervous after I posted that I had been offensive somehow, so it felt good to see your comment.

Deb - I'm glad my rambling made you smile:) I had been checking for your path report results because you and Kerri seemed to on such similar paths, and you said you expected results Thurs. or Friday. I was concerned when you didn't post for a while after I posted...

Mindy - We will be pulling for you. I hope they have some good ideas for you at MDA.

Wade

Posted By: Suze35
Date Posted: Oct 30 2011 at 7:49pm

Thinking of you Mindy as you head off to Houston! I hope they have a great plan in place for you!!

Susan

Posted By: Barbi
Date Posted: Oct 30 2011 at 7:54pm

Mindy - I guess what I meant was, wait until you know it's going to all fall out. Mine did with taxol, but with the abraxane I'm left with a very thin headful of grays. But enough to look better than nothing when I wear a baseball cap. Hope your visit goes great!

Just a note of what NOT to do. Although I had cut my hair quite short (maybe 1 1/2"), it was time to bake Christmas cookies and make fudge. I wore a cap, I shook my head prior to kitchen work, my daughter stood guard and tried to catch stray hairs, but a few DID end up in my cookies!! Might have been a lot but nobody said so!!

Posted By: debB
Date Posted: Oct 30 2011 at 10:36pm

Hi Mindy,

Very best of luck to you on your trip! We will all be waiting for an update.

I did much the same thing when my hair started falling out with the AC. Everyone kept saying Day 14 and by the end of day 14, I wasn't loosing more hair than usual. Made me feel pretty good about things. But, the dawn of day 15...like you said, clumps. I had it shaved off the next day. Sadly, I can't say I took it all in stride. I was very bummed...sad, angry. Somehow, it took my hair falling out to bring reality crashing in and make this whole nebulous 'cancer thing' really real. After that, I would sit there and pinch the stubble and pull it out, my hubby saying it would never come back if I kept pulling it out! I never did loose it all completely. The little bit that is left has been growing longer and looking fuzzy and just starting to feel the stubbles starting to come in here and there. I have been known as 'the bald chick' for five months and now my kids are calling me the 'fuzzy duckling' instead!

It is funny, because now, everyone comments on my hair and how it is getting longer, etc, etc, trying to make me feel better! It is funny, because now I argue with them that it isn't growing back yet, this is what never fell out and saying they don't need to try to make me feel better! Somewhere in the last five months I have become okay with the hair and I know it will all come back in due time. Well, I hope most of it comes back anyway- I had a lot of hair! I think I miss my eyelashes more than my hair!

Anyway, a lot of rambling to say this whole journey is a process. A process of learning, accepting, and healing. Not always pretty or fun, but try to keep your humor lurking in there somewhere! And you are just in time to do up a great Halloween painted mohawk!!

Deb

-------------
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

Posted By: debB
Date Posted: Nov 02 2011 at 10:22am

Hey Mindy,

Just checking to see what the word is from MD Anderson?...you are in my thoughts!

Deb

-------------
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

Posted By: Wade
Date Posted: Nov 02 2011 at 12:37pm

Hi Mindy - I'm going to piggyback on Deb's question and comment - I hope you're doing OK.

And Deb, I was reading through my wife's second opinion whilst waiting in the ophthalmologist's office, and I found a comment that Dr. Choi made referring to a "recent study" (sorry, that's all I have) that found no difference in recurrence or survival in lymph nodes that that were clear after chemo, but had been found cancerous before treatment. I figure you've probably already heard that, but in case you didn't...

I hope your return to work went well, too

Wade

-------------
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

Posted By: mindy555
Date Posted: Nov 05 2011 at 10:57pm

Thank you ALL for thinking of me. I hope everyone is doing well. I've posted in a few areas of the forum since I returned, though wanted to get back here and let you know how it went at MDA.

The ultrasound rendered a growth of 4mm each side (3-D) horizontally and 1mm vertically. I'm not sure about their math here- though the report said it showed a 41% "increase" after 3 weekly doses of Taxol. I wonder if the 41% is tumor load? I can't get it to add up but I was never good at math.

Without hesitation my oncologist switched me over to FEC - every 3 weeks x 4 or x 6 depending on how this goes.

I can't thank you enough for your warm thoughts and posts in my absence. We got back late Tuesday. I was fine traveling and schlepping over-packed luggage.. but boy was I beat for 3 days after. Today and tonight I feel somewhat human. Food tastes awful but I'm trying to eat, (even if not the healthiest diet) to keep up some strength. Water is my best friend. It still tastes good and I manage to drink a ton.

I received a beautiful call from my local oncology nurse today.. Yes on Sat- I called her when I returned to give her the scoop. She was totally disheartened the Taxol didn't work. This amazing soul is a true angel. I adore her. I told her not to worry, that we'd beat it with the new chemo. She's been so supportive and always right there when I need "anything." I feel beyond blessed to have this compassionate woman taking care of me. I told her how much I loved her. And I really do love her.

Another thing, while insignificant, I realized my local oncologist didn't communicate with my MDA oncologist at all. I went online and let them know I felt the tumor growing. That's when they requested I come to MDA with 12 days notice. I'm glad they took me seriously.

Hair.. OK.. So, I wussed-out on cutting what little I have left. Every time I brush it comes more handfuls so I've pinned it up in now into a tiny bun. My hubby pulled his hair back to show that I now have the same receding hair line he has. The kind I never had before. What a guy! Wink

It makes me feel better to have even a little hair under my baseball cap. I can't part with that small amount quite yet. I've cleaned every evidence of hair today. I don't even want to see a single strand on anything.. anywhere in this house. Strength is coming back slowly. I was able to do 30 minutes of Pilates but tired quickly.

Anyway, that's the latest here... They'll check my blood levels at my local oncologist on Wednesday.

Without the support of all of you this whole thing would be so difficult. Thank you for your steadfast support. Thank you for all your beautiful sentiments and thoughts. You ALL ARE SIMPLY THE BEST!!!

With Much Love and BEST WISHES FOR EACH OF YOU, Mindy

PS- We just experienced an earthquake after I thought I was through writing. Oh boy, Oklahoma has it all.. tornado alley now earthquakes, too. WOW! Such an odd feeling.

Posted By: Charlene
Date Posted: Nov 06 2011 at 10:48am

Mindy,

Glad to see your post today and to hear that you are starting to feel better. I agree that chemo sucks--life will be better when this part is behind you. During chemo, I ate whatever I felt like eating because, as you said, food doesn't taste quite right and it is important to keep your strength up. Some of the foods that appealed to me during chemo, though, are foods that completely turn me off now. Wonder if there is a connection. I think you are especially fortunate to have such a wonderful oncology nurse.

Love and prayers being sent your way,

Charlene

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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

Posted By: 123Donna
Date Posted: Nov 06 2011 at 12:21pm

Mindy,

Some of our tumors are resistant to taxanes and it sounds like your's might be one of them. Maybe with doing the neoadjuvant therapy you found out early Taxol didn't work, so they were able to switch you to another type. I tried to find the thread/article but it was either in 2009 or 2010 talking about how some tumors grew while on Taxol. I couldn't find it, but remember reading it and some members talking about how their tumor shrunk while on A/C, but grew back on Taxol. If anyone can remember this article/study, please post it.

I heard about the earthquake last night! Hope not any damage around you. Take care and I hope you start feeling better each day. It sounds like they are on top of things at MDA and willing to switch tx when necessary.

Donna

Posted By: mindy555
Date Posted: Nov 06 2011 at 12:39pm

Thanks Charlene Hug

.. I feel very fortunate- truly blessed to have such a compassionate oncology nurse.

Donna- I would LOVE to see that article and will try to find it. Considering TNs are supposed to be pretty receptive to chemo in general, I went searching for more information. All I could find was very few posts on another forum (breastcancer.org) where a few women didn't see any improvement (and possible growth) while on Taxanes. I'll post if I find it the report you're talking about. YES! If anyone else can find it, please post. Thanks so much for bringing this up Donna! Hug

Posted By: 123Donna
Date Posted: Nov 06 2011 at 12:46pm

Mindy,

I searched last night and couldn't find the thread/article. I remember we had quite a discussion about this and it was when I was going through treatment in 2009 or just after it. I'll keep looking too. I remember seeing an article or study discussing it. When I had my recurrence, my onc looked for a different chemo because she made the comment that the taxane didn't quite work for me. Maybe there are sub-types of us that the taxanes don't work quite as well. In general, taxanes are supposed to be very effective for TNBC.

Donna

Posted By: mindy555
Date Posted: Nov 06 2011 at 3:37pm

Thanks Donna- Not only for this, but for keeping us informed w/ all the research and articles you post for us.

Hugs Hug

Mindy

Posted By: debB
Date Posted: Nov 06 2011 at 9:28pm

Hi Mindy,

I am so glad to hear that MDA took you seriously and got you back in there. Hopefully the FEC will start working for you. I'm glad you are feeling a bit better and very impressed that you felt well enough to do some Pilates!!

When I was doing AC, I had treatment on Friday, Saturday was often fine (or pretty good) and Sunday was usually the worst, then back to work on Monday. The second week was usually pretty decent, but it seemed like life piled up in the week that I was miserable so who had time to exercise when you are just trying to catch up?

That is fabulous that you can still drink water! Smells were awful for me, water tasted off, and even the smell of it made my stomach churn- I had to hold my breath just to take a drink!

Donna, I am thinking that the thread you are talking about is buried in the(Attn Newbies thread) MDA Taxol first study thread where some folks talked about it growing with Taxol. That thread has so many pages but I think it was in there somewhere...will do some reading to see if this ol' chemo brain remembers correctly.

How long before they check your response to the FEC? Growth like that is scary as all get out. I hope and pray that it starts shrinking very soon!!!

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

Posted By: debB
Date Posted: Nov 06 2011 at 10:29pm

Donna,

Look at the Attn Newbie thread, pg 2...you link back to another Taxol discussion that might be what you are thinking of...there is also brief mention on pg 5 but nothing too big.

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

Posted By: 123Donna
Date Posted: Nov 06 2011 at 10:46pm

Mindy and Debd,

I can't believe I actually found it, sort of like finding a needle in a haystack. Is it chemo brain? I remembered the members name, Terge, and searched for the posts. OK, please don't be alarmed by the quote. I know Taxol is used more often than not, for TNBC and breast cancer in general. The benefits of this drug is outweighed by the negative. This is just one article/study and there are many more supporting it's benefits. I also provided the link to the article that started this discussion.

Here's the thread:

http://forum.tnbcfoundation.org/research-on-new-therapies-to-limit-mets_topic5910_post51379.html?KW=#51379 - http://forum.tnbcfoundation.org/research-on-new-therapies-to-limit-mets_topic5910_post51379.html?KW=#51379

Terje wrote:

Here's what I found very interesting in this article.

Dr. Martin says his team found that a popular chemotherapy drug, taxol, actually causes cancer cell microtentacles to grow longer and allows tumor cells to reattach faster, which may have important treatment implications for breast cancer patients. Their studies are continuing.

"We think more research is needed into how chemotherapies that slow down cell division affect metastasis. The timing of giving these drugs can be particularly important. If you treat people with taxol before surgery to shrink the primary tumor, levels of circulating tumor cells go up 1,000 to 10,000 fold, potentially increasing metastasis," he adds.

Once they find some drugs to prevent or destroy tau maybe Taxol will be safe, but for now it's probably a good idea for TNBC patients to avoid Taxol and use something else instead.

http://www.medicalnewstoday.com/releases/182239.php - http://www.medicalnewstoday.com/releases/182239.php

Posted By: mindy555
Date Posted: Nov 07 2011 at 12:19am

Donna and Deb... Thanks a million! As Donna said, please don't let this discourage anyone on Taxol. TNBC is so complicated with 6 different subtypes. I do remember this being posted a while back and took a copy to my doctor. You get my vote for (a) the best memory which is a biggie... and (2) tops at research Donna! Thumbs Up

Thanks so much again!! I know that took a lot of time and effort! xo

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Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012

Posted By: mindy555
Date Posted: Nov 07 2011 at 12:23am

I wanted to add, I found at least 30 plus positive reports and information on Taxol.. This is only one. Everything points to taxol being an excellent treatment for many other cancers including TNBC.

-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012

Posted By: mindy555
Date Posted: Nov 07 2011 at 1:16am

Deb,

My schedule got changed up as visits were pre-scheduled while on weekly paciltaxol. I was to go to MDA for every 3rd treatment. That seemed like a lot of travel so we decided on every 6th treatment with ultrasounds at regular intervals. Honestly now I don't remember if the ultrasounds were at every third treatment or maybe only at MDA on the 6th and 12th treatment. All of that ramble is moot since that plan was aborted.

Knowing my local oncologist, she will send me over for an ultrasound at my request.

This last short notice visit when we changed to FEC we decided I'd go for the 3rd treatment and at that time decide if I need 4 or 6 treatments aided with ultrasound. As bad as I've felt, I hope it's 6x. In the meantime I have consults with the MDA surgeon- 2nd consult, a plastic surgeon (undecided), genetic counseling and other appts which escape my battered brain.

I realize this doesn't really answer your question. Probably because of my own uncertainty at this point. I need to get it squared away before my next Houston visit.

On paciltaxel my growth was so palpable it was blatantly obvious to me, as much as I kinda played it down.. I knew. It wasn't as remarkable as it felt, but still, a growth on that stuff is indeed scary.

I promise I won't drive myself crazy feeling around (too much). Wink

Thanks for your concern. xxxx

-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012