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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 28 2019 at 10:55am
Hey Leah... thanks for the reply! I have a group of friends who started a food chain for me and theyíre getting a cleaning lady to come in every other week, so thatís going to be a huge help. My sister and some friends have offered to take take the kids to and from activities and appointments. Iím planning on taking time off from work sept - nov.  I teach 2nd grade, and Iím just worried I wonít be able to give my students the best of me while Iím actively undergoing chemo. Iím hoping Iíll be ok during radiation (maybe just needing to take a couple days off here and there)
I have a list of things to talk to the oncologist about when i go on July 3rd. I will definitely add Vitamin B6 to the list.  I also want to ask about CBD oil, probiotics, alkaline water, and an at home portable infrared sauna. I wonder if anyone on here has purchased one of them. I saw some reasonably priced ones on amazon but not sure which one is good 🤷🏻‍♀️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2019 at 12:24am
Swimming was my sanctuary during chemo. Just floating on the worst days was my jam. I had lots of bone pain from Neulasta and taxol, the water made me feel a lot better. The first time I went into the sudden menopause - chemopause - halfway thru. The hot flashes were awful. Most of my chemo was in the summer, so I was in the pool every day. I liked my bald head better when it had a lil tan on it. I used sunscreen, I didn't let it burn but it did tan. It started out so stark white, once it had a tan it looked more like a fashion choice if you just glanced at it 😁 tanned head and dangly earrings, not so bad. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2019 at 8:22am
Your post put a big smile on my face! I can just picture the nice tan you had on your bald head and the beautiful earrings dangling down!! 😊😊😊
Well, I donít know for sure yet, but Iím assuming my chemo will start up pretty soon, so Iíll be a summer chemo girl too. I belong to a beach club with an Olympic size salt water pool (water pumped in from the ocean). As long as thereís not too much bacteria in that water, and itís not a health risk, Iíll be floating around in there as much as possible too!! 
Thanks for the tip!!
Laura 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2019 at 2:09pm
Hi girls! I have an update. 
Results were put on my Sloan patient portal last night!! GOOD NEWS! the tumor was smaller than we thought. It was 9mm instead of 13mm.. so they take it as good news when it's under 1cm. It did NOT spread to my lymph nodes. They took 2 nodes out (I had originally thought they only took 1). All of the margins were cleared. They staged it at Stage 1b, grade 3, triple negative breast cancer. Not sure why itís 1b instead of 1a though. I thought the ďbĒ means that there IS node involvement. Anyway, looks like I will have the port put in by a surgeon on July 18th or 19th and then start chemo July 29.  Thank you for all of your support  and prayers! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2019 at 5:08pm
Congrats on getting the surgery behind you and the smaller size!  In 2018 the American Joint Committee on Cancer adjusted the staging for breast cancer to better align with the treatment recommendations - with Her2 + and TNBC at a higher stage because they are typically Grade 3 - and Grade 3 raising the stage in general as well.  So a 9mm ER/PR+ grade 1 would be a 1A, Her2+ or TNBC grade 3 would make it a 1B - thats what I seem to remember last year when they came out with the news?  It makes sense - if you'd had the garden variety non-agressive ER/PR+ 9mm you'd be getting radiation at this point most likely.  The need for that port and chemo bumps you to a B.  Kinda makes sense really.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2019 at 6:42pm
that makes sense!! Thank you for the explanation:))
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2019 at 10:02am
Laura, I am rarely on this site anymore. You'll see by my signature how long ago I was tx and my stats. I too was a single parent when dx. My daughters were 9 and 13. They seemed to take it all in stride. I think they take cues from you and how you are handling things. Although my daughters were "cancer familiar" as my mother had had ovarian so they were used to seeing bald. My older daughters response when I told them about my dx was "well, if you're going to have cancer, this is a better type to have." [ as opposed to ovarian....hell yes!] Both daughter wrote papers for some assignment when in high school about my tx. Oddly they told me they wrote it but never let me see it. I always wondered what their perspective would have been. 

My run partner has just finished tx for her2. She developed neuropathy in the last 6-8 weeks. She found acupuncture to be extremely helpful. I also swore by acupuncture during tx to keep my energy levels up. I worked thru tx but was able to adjust my hours. I needed/had to work. I am a self employed hairdresser. I would go from chemo directly to acupuncture. I've written details on this forum at some point. For my run partner...she had gotten to where she could barely walk and the acupuncture greatly diminished her symptoms. [she has had a full year of tx.] 

I found radiation a piece of cake after having chemo. I wasn't aware that there were side affects. The difficulty with radiation was in the scheduling for the convenience of my work. 

good luck to you. 

Kirby


ps, hello to all the familiar names. It's nice to check in once in a while and still see some of you here. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2019 at 12:51pm
Wonderful to hear from you Kirby! So glad you and your daughters are doing well.
Our lil family of four, my husband, daughter and son are much more close after my two bouts of TNBC treatment. I always told them the truth, they definitely made me feel we were all in this together because of it.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2019 at 2:25pm
Hi Kirby, great to hear from you! I just had a call from my clinical trial rep for my annual checkin to see how I was doing so I was thinking of all the people I've known through the Tneg family. So glad you're doing well!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2019 at 7:10pm
Hi Kirby!  So glad to hear from you.  You were so supportive to me when I was going through my two battles with TNBC.  We love hearing from long term survivors!

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Hi, 
Iím Mel. 42 from Australia and I have just been diagnosed with TNBC grade 3.  I had a 3.5cm lump removed and an enlarged lymph node removed. Margins have come back clear and my lymph node also. I have a 10 year old daughter. I have kept her completely in the loop. She has been coping well but perhaps a little touchy as she is adjusting to me getting fussed over a lot more than usual. Iím a registered nurse and tbh the hardest part strangely has been the medicalisation of my body and the triple negative really threw me. Iím about to start 6 months of chemo then radiation and I can see you guys are a wealth of knowledge. Thank you in advance. I found my lump on the flight to Morocco for a month long holiday and immediately knew it was not good. I had to have all my scans and biopsy in Morocco and then leg it back to Oz. It grew so quick. Lucky I did. Very daunting not speaking the language while having invasive tests done. 
Iím not looking forward to chemo but of course I will be fine. 
Mel 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2019 at 4:18pm
Hi Mel,
Wow! Thatís crazy that you had to go through all that in Morocco. But thank God you knew something was wrong and you were able to catch it early! What chemo treatment are you about to start for 6 months?
I actually just went to a Sloan oncologist for a second opinion today.  I thought I was all set to start the AC-T on July 29th, but the Sloan oncologist seems to have a different idea Iím mind. She suggested I do the CMF chemo instead (for 6montha vs 4 months of the AC-T) She said it is gentler on the body without all the side effects that people get from the AC-T. Now Iím just completely confused! Do I want a ďgentlerĒ chemo? Donít I want the strongest stuff out there?  
Is anyone else familiar with this CMF? It is the first time itís been mentioned to me. Immediately following that appointment I had a scheduled appointment with my port surgeon (which Iíll be getting this Friday)  he is also a breast surgeon and did his residency at Sloan. He said in his humble opinion he strongly agrees with going with the ACT. He said if I were his wife he would be telling me that is the only option. It is the strongest chemo for TNBC and I am young and healthy so I will be ok with it. Does anyone know if the CMF and ACT are equally effective? 
Thanks!
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hi Laurarev, 
Far out I donít want options, I want to be told ďdo thisĒ, options at this point are so overwhelming. The first moment of relief for myself and my husband was when I saw my surgeon and I could give him control to take care of me and utilise all of his experience and skill. Which he did.  I have to do my planning on the 30th of this month and I will be told exactly which chemo I will be having. The breast cancer nurse has just told me 6 months. I presume you are in the US. I have never heard of Sloan but I can see a few mentions on here about it. In Australia we have public healthcare funded by the government so the treatment is organised by oncologists employed by the government and it is a bit more standardised I think, although you still have choice. I have been told because I am young and healthy that I will be hit hard with aggressive chemo and I think it sounds and will be crap but I donít want to have any regrets if it was to come back. I really want to go through this once in my life I guess. Itís a hard decision but I have found so far that itís the people like the breast sonographers etc who see this stuff everyday who give you the unbiased advice. They have no drug company alliances etc. Maybe the Port surgeon is good to listen to. 
Mel 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2019 at 8:04pm
Originally posted by Laurarev Laurarev wrote:


Is anyone else familiar with this CMF? It is the first time itís been mentioned to me. Immediately following that appointment I had a scheduled appointment with my port surgeon (which Iíll be getting this Friday)  he is also a breast surgeon and did his residency at Sloan. He said in his humble opinion he strongly agrees with going with the ACT. He said if I were his wife he would be telling me that is the only option. It is the strongest chemo for TNBC and I am young and healthy so I will be ok with it. Does anyone know if the CMF and ACT are equally effective? 
Thanks!


Laurarev,

CMF is an older chemo regimen that was commonly used before AC-T became the norm.  Here are a few studies/links to consider:

Comparison of Adjuvant Regimens in Early-Stage Breast Cancer


Overall Survival

Overall, 24 trials were identified. Compared with sequential AC-T, TC (hazard ratio


= 0.93, 95% confidence interval [CI] = 0.62Ė1.40), platinum-containing regimens (HR = 0.93, 95% CI = 0.66Ė1.31), and concurrent ACT (HR = 1.03, 95% CI = 0.90Ė1.18) had a similar overall survival benefit, whereas overall survival was worse with CMF (HR = 1.56, 95% CI = 1.32Ė1.85), anthracycline alone (HR = 1.22, 95% CI = 1.10Ė1.37), and no adjuvant therapy (HR = 1.76, 95% CI = 1.40Ė2.21).

On meta-regression analysis adjusting for hormone receptor status, there were no significant differences in overall survival for sequential AC-T vs concurrent ACT, anthracycline alone, platinum-containing regimens, or TC, with CMF being associated with significantly poorer survival.

https://www.ascopost.com/News/33921


Adjuvant chemotherapy for HER2-negative breast cancer


REGIMEN SELECTION AND ADMINISTRATION

Choosing a regimen ó The choice of an adjuvant chemotherapy regimen depends both on baseline characteristics of the patient as well as the breast cancer. Considerations are discussed below.

General approach ó There is no single worldwide standard adjuvant chemotherapy regimen in the treatment of breast cancer, and the preferred regimens vary by prescribing clinician, institution, and/or geographic region. The following outlines our approach:

For most patients in whom chemotherapy is recommended, we prefer doxorubicin and cyclophosphamide (AC) followed by paclitaxel (T), otherwise referred to as AC-T, administered on a dose-dense schedule (table 2) [18]. (See 'Rationale for anthracycline- and taxane-containing regimen' below.)

Further details for those with triple-negative breast cancer (TNBC) are found elsewhere. (See "ER/PR negative, HER2-negative (triple-negative) breast cancer", section on 'Chemotherapy'.)

Although no regimen has proven to be superior to AC-T, non-anthracycline-based regimens may be an appropriate strategy for certain groups of patients.


Effectiveness of an Adjuvant Chemotherapy Regimen for Early-Stage Breast Cancer

A Systematic Review and Network Meta-analysis

RESULTS

We identified 24 trials. The TC and platinum-containing regimens had OS benefit similar to that of sequential AC-T (TC hazard ratio


, 0.93; 95%CI, 0.62Ė1.40; and platinum HR, 0.93; 95%CI, 0.66Ė1.31). Patients treated with CMF or AC had significantly worse OS than those treated with sequential AC-T (CMF HR, 1.56; 95%CI, 1.32Ė1.85; and AC HR, 1.22; 95%CI, 1.10Ė1.37). Platinum-containing regimens tended to be more toxic than sequential AC-T. The toxicity of TC was similar to or less than that of sequential AC-T. Meta-regression analysis showed that hormone receptor status did not impact the HRs for OS for any regimen.

CONCLUSIONS AND RELEVANCE

Sequential AC-T is likely to be the most effective adjuvant therapy regimen for early-stage breast cancer regardless of hormone receptor status.

Discussion:

We draw several important conclusions from this study. First, sequential AC-T should still be the first choice for chemotherapy in the general population of patients with early-stage breast cancer on the basis of OS and risk of unacceptable AEs. Our meta-regression analysis to consider the potential effect of hormone receptor status on OS showed that findings were similar after adjustment for hormone receptor status. Second, TC was similar to sequential AC-T in terms of treatment effect and unacceptable AEs and might be considered as a first choice treatment for patients with high risk of cardiotoxic effects. Third, although platinum-containing regimens have recently been considered for breast cancer treatment, they are not superior to sequential AC-T in terms of OS and tend to be more toxic.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575939/

Chart:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575939/figure/F2/





DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 8:56am
Thanks for the reply Mel... I feel the same way about all the ďoptionsĒ! Doctors, please just tell me what I need to do!  This is all new to me, yet the doctors do this day in and day out. ďSloanĒ is the number 2 cancer hospital in the US; Memorial Sloan Kettering. I agree with you that whatever the most aggressive treatment is thatís out there is what I want to get. I would like to reduce my chances of this cancer ever coming back. And like you, I only want to do this once. From all my research it seems TNBC is the most aggressive breast cancer out there so why not treat it with the most aggressive chemotherapy? 🤷🏻‍♀️ I just thought maybe I was missing something yesterday when the Sloan doctor mentioned a gentler form of chemo. Could it be that the CMF is just as aggressive as the AC-T, but the side effects are ďgentlerĒ?? Iím just not sure, so thatís why I will be meeting again with the oncologist at my local hospital who told me he would be treating me with the AC-T. Iím supposed to start treatment on July 29th. Good luck with your planning on the 30th. Let me know how you make out!
Laura 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 9:05am
Wow! Thanks for showing me the research. Very interesting! So it looks like AC-T is the way to go. Iím just surprised the other doctor recommended the CMF 🤔
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 9:33am
The way my doctor at MD Anderson out it, ACT is the gold standard for TNBC. I did it the first time, had a complete cure. 7 years later I had the rare unicorn recurrence. Adriamycin isn't something you should do twice (we call it a "lifetime dose", but they will use it a second time for stage 4). so Carboplatin is Second choice - with what is the question, he likes Taxol. I got a pathological complete response with Carboplatin and Taxol.  He said, "Taxanes are always a good idea with TNBC, Taxol is the best". BUT - at the end of my C+T treatment, they couldn't tell from the ultrasound If it was really gone or not- it was much  smaller, but ?? If it was gone? He said if I "wanted" to do more chemo, he'd suggest CMF - 3rd choice for TNBC chemo. I was just too dang sick to keep going - luckily, as it turned out. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 9:45am
Welcome Melanie! Reading your story of starting your care in Morocco gives me sympathetic anxiety. So glad you're home for the rest of it! You had a lumpectomy? You'll probably be doing 4 1/2- 5 months of chemo plus a month of radiation, so 6 months or so of treatment sounds right. I understand you wanting a doctor to handle the anxiety of choosing what's best, but I've seen some wacky suggestions from doctors in my 10 years of hanging around here. If he suggests anything except what's the norm for your stats, I would ask WHY for sure. You've one chance at this, failure is usually fatal, so you're doing the right thing by coming here, reading and educating yourself. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 11:41am
Originally posted by Laurarev Laurarev wrote:

Wow! Thanks for showing me the research. Very interesting! So it looks like AC-T is the way to go. Iím just surprised the other doctor recommended the CMF 🤔


Laurarev,

You may want to ask him why he suggested CMF and mention this study and see why he thinks it's better than AC-T. 

"On meta-regression analysis adjusting for hormone receptor status, there were no significant differences in overall survival for sequential AC-T vs concurrent ACT, anthracycline alone, platinum-containing regimens, or TC, with CMF being associated with significantly poorer survival."

https://www.ascopost.com/News/33921


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 12:23pm
I sent her (Sloan oncologist) an email stating I walked away from our consultation a bit confused and couldnít recollect the exact reason why she would prefer the CMF as opposed to the AC-T. I know she mentioned that I would tolerate it better but I donít recall her saying whether or not it was as effective as AC-T. She was throwing around a lot of percentages but the only one I truly remember is that she said if I only had the lumpectomy (without chemo) the chances of recurrence would be 15% and if I did the chemo the chances of the cancer recurring drop down to 5-10%. She said the studies are not specific to a 46 yr old female with a 9mm TNBC tumor.   Then she mentioned something about a 3-4% difference, and Iím not sure if she was referring to the CMF vs the AC-T. I will let you know how she replies 

Thank you!
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