Choosing Chemotherapy |
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lilyrose 
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Joined: Mar 07 2014 Location: Arizona Status: Offline Points: 63 |
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 Topic: Choosing ChemotherapyPosted: Mar 28 2014 at 11:14pm |
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I am near the beginning of my treatment for TNBC. I was diagnosed on 2/5/14. Chose lumpectomy which I had on 3/11/14 and met with my oncologist yesterday. He basically gave me three choices of treatment.
1) skip chemo - which he doesn't recommend 2) go with Taxotere/Carboplatin every three weeks for 4-6 times plus Neulasta 3) go with Adriamycin/Cytoxan every other week 4 times, then add Taxol weekly for 12 weeks. I was told that I will also receive rads after chemo. He tells me I will need a port for option 3, plus a heart function test. He already scheduled me for blood work plus a PET scan next week. I believe I am also getting tested for BRCA. I am seeing him again next Friday, so we can go over my test results and further discuss my treatment plan. He said he wants me to be comfortable with my choice, but I feel out of my league trying to decide. Just wanted to hear what some of you have done and how you managed on it. Also, would you choose the same treatment you had, if given the choice. I realize everyone's situation is different, but I feel that those of you who have been down this road can better understand what I'm facing. I would sincerely appreciate your feedback. Thanks, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Mar 29 2014 at 9:17am |
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Dear Sweet lilyrose,
Your oncologist has handed you a plate full of options. They range from nothing to agressive. Good luck with whatever you choose.
I personally had option 3 when I did chemo. My taxol was every other week for 4 treatments unlike the 12 weekly treatments he suggests.
Have you had the oncotype testing to see how aggressive your cancer is? That plays a big part in what treatment you should get. I know two ladies who were stage 1 (not TN) but their oncotype tests showed aggressive cancer so they both had a variation of option 3.
Since triple negative is legendary for traveling through the vascular system, I certainly would not want to skip the chemo. Chemo and radiation are all we have to fight this monster, so please be aggressive from the beginning. You will not get another first chance to fight this.
 Kick the stuffings out of any cancer cells that could be left after surgery.I hope you don't find my post too overbearing, but I've seen what happens when ladies settle for less than the best.
Love and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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lilyrose
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Posted: Mar 29 2014 at 10:40pm |
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Dear Lillie,
Thank you for your reply. And no, I did not find your post too overbearing! I appreciate honest answers, particularly on this subject. When I met with the onc on Thursday, he seemed pretty confident that option #2 would be sufficient. However, he called me the next morning and said he felt that option #3 would be better for me. That made me a bit more nervous. I was also a little surprised that he ordered a PET scan for me. For some reason, I thought I wouldn't get one until after chemo. Also, I thought they only did oncotype testing on hormone receptive BC. I will ask him about that. I am not looking forward to starting chemo, but I agree with you about being aggressive. I want to kick this to the curb asap! So this week will be full for me with tests and dr appointments. I suppose I'd better get used to it. Thank you again. With love, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Mar 30 2014 at 12:41pm |
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Lilyrose,
You may want to seek a second opinion from another onc. There might even be a 4th option to consider. Number 3 but add Carboplatin to the Taxol. Check out this link and if you want, talk to your oncologist. |
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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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Lillie
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Posted: Mar 30 2014 at 3:17pm |
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Dear lilyrose,
You are correct saying that hormone receptor BC gets the oncotype testing. I got carried away with my post. I've recently seen 3 ladies with stage I, ER cancer get chemotherapy because of their oncotype results. Also getting a PET before beginning chemo is not that unusual. Lots of oncologist like to be sure that you are totally cancer free, except for the breast, before they begin treatment. It is usually for a baseline reading.
Donna had a good suggestion about a second opinion.
Good luck and
God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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lilyrose
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Posted: Mar 31 2014 at 9:56am |
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Thanks for your response, Donna!
the onc dr that I saw last week was my second opinion. The first guy I saw made me feel like he was uninterested in most of my questions. I knew after the first five minutes that he would not be my dr. I am considering getting a third opinion...just hoping my insurance will cover it. The second dr did talk to me about carboplatin. He also told me he would be available 24/7 during my chemo. He told me to call him any hour day or night if I have a fever or any other physical symptoms that he will further go over with me. Still not sure what I'm going to do. I'm feeling a bit overwhelmed. Thanks for all the info you post on here. Bless you, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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lilyrose
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Posted: Mar 31 2014 at 10:02am |
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Dear Lillie,
Thank you for your support. This website has been such a blessing. I am still trying to decide what my plan will be. I really don't want to burden my dear husband with more. He has been very supportive, but I know he is really worried. I'm off to my PET scan today. Wish me luck! Bless you, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Mar 31 2014 at 7:00pm |
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lilyrose,
Prayers that it is all clear. Take the time to decide, with all the information out there it is too big of a decision to be done quickly. You have to feel comfortable and confident in your choice. Natalie
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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kmwhope
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Joined: Mar 23 2014 Location: MD Status: Offline Points: 62 |
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Posted: Apr 02 2014 at 12:05am |
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Hi There,
I was newly diagnosed with tnbc,stage 1a,grade 3,had lumpectomy and clear margins,clear nodes. I will have genetic testing later this month. So I went to my chemo dr for first time yesterday, he recommends that I do AC X4 every 2 weeks then Taxol x12 weekly. He says that is my best chance to beat this and I will also have Radiation after chemo. I feel very anxious about the treatments but I know I need to do it. I read so many different side effects from ladies on here but I guess I' ll just have to see how I react to it. Does this seem to be an aggressive aproach to my cancer or the standard they use? From what I read I will loose my hair about 10 days after treatment..is that about the norm?? Thanks for your comments ..I'm new at this..Kathy |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Apr 02 2014 at 8:11am |
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Welcome Kathy,
The chemo they are recommending is the most common standard of care. While side effects are common and all are possible, you may not experience all of them. A good resource for understanding each chemo is www.chemocare.com Hair loss usually appears around the 14th/15th day. You'll know when it begins to happen as your scalp will feel funny, almost achy a day or two before the hair starts to fall out. You'll lose most hair on your body. Sometimes the eyelashes are the last to go. Mine fell out after treatment ended, but grew back quickly. Donna
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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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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Apr 02 2014 at 8:13am |
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km,
It seems you are having the common treatment. Feeling anxious I am sure you know is very normal. Just remember to bring any and all symptoms, and concerns to the NP or doctors attention. A lot of medications are outthere for everything fron nausea to anxiety & pain. On the loss of hair that seems about right, it grows back  I did bandanas, my choice. Didn't like the wig idea. I saw a few women with the wig just just off a bit and felt like straigtening it for them. Plus my scalp remained (still is to some degree) sensitive and the isdea of a wig didn't feel good. Keep us posted, bring any and all to the forums. Natalie
Edited by Natalie - Apr 02 2014 at 8:14am |
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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nancykind
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Joined: Mar 15 2012 Location: so adks, nys Status: Offline Points: 192 |
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Posted: Apr 02 2014 at 10:38pm |
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on day 11 my scalp started to itch. i had very long hair and had a plan to braid, cut and keep and stuck to it. it was a tough day and i thank my sister for staying on the phone with me the whole time.
my eyelashes were the last to go and they, and my eyebrows, kept falling out in the weeks after chemo ended, which was disconcerting. i was down to 6 eyelashes, then 3, then 1 then none. the following week i was getting reiki done and i heard her say "i see eyelashes". my eyes flew open, i was so excited! sure enough, tiny tiny little stubby eyelashes. i can't say they're quite as long as they used to be but they used to be so long that they'd smudge my eyeglasses all day long, so it's okay. :) they don't curl right away either, they need a certain length to them before they curl upwards. i didn't mind being bald once the initial adjustment was made. i wore beautiful scarves and big chunky earrings, which for some reason work out to be a flattering combination. i had fun multi color wigs and sometimes i just wore a soft knit hat. there was no shame to what i was going through and honestly, everyone was so kind. i wouldn't do it any differently, looking back. stay positive and know that one day it will all be behind you. you will win. |
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Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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lilyrose
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Joined: Mar 07 2014 Location: Arizona Status: Offline Points: 63 |
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Posted: Apr 03 2014 at 10:47am |
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Natalie,
I had several tests done this week, including the pet scan and heart function. Tomorrow I see the onc and get results. Then need to decide which chemo I'm doing and when I start. Thanks for your prayers! lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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lilyrose
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Posted: Apr 03 2014 at 10:53am |
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kmwhope,
It sounds like our situations are quite similar. My onc also suggested the same chemo treatment. I'm meeting with him again tomorrow to make some decisions. I was also wondering about the hair too, as he told me I would most likely lose it. I can't imagine wearing a wig! Wishing you well in your treatment. Stay strong, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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lilyrose
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Posted: Apr 03 2014 at 10:58am |
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Donna,
Thanks for posting that website! I spent hours on it last night, gleaning information. I don't know where you find all this information, but it has been SO much help to me! Thank you for all you do! Bless you, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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lilyrose
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Posted: Apr 26 2014 at 10:38am |
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Hi all,
I haven't been on here in awhile. I started my chemo and it wiped me out. I felt ok until day three-then felt like I was hit by a truck. I'm feeling better this week, but will be on to round two on Wednesday. NOT looking forward to that! The side effect I was most worried about, bone pain from the Neulasta, never came. I have felt a strange heaviness in my legs, but I guess the Claritin did it's job. I am now enjoying the lovely sensation of tingling scalp. :) So am expecting hair loss any day. I have no desire to eat, but make myself eat frequent small meals. I am just wondering if this is normal and will I have no appetite until chemo is over? I hope all of you are feeling well and wishing you all good health! Hugs to all, lilyrose |
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DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins
4/14, A/C DD 4rounds 6/14 Taxol weekly x 12 9/25 Rads 26 + 8 boosts |
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sweetjam
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Posted: Apr 27 2014 at 10:34am |
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Hi There,
I noticed your are in AZ. I am in AZ too. I just finished round 4 of Carboplatin/pacataxil. I have a found a really good alternative treatment for what I call the "chemo coma" I had the best week after receiving this treatment. I still felt fatigued but not wiped out. The treatment is called tennant bilmodulator therapy. Dr. Chander at Naturopathic Specialists in Scottsdale did it. It was the only thing I changed between rounds and I found a remarkable difference in the recovery. This was worth every penny it cost.
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DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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MomMom44
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Posted: Apr 29 2014 at 3:35pm |
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Sweetjam - what is the "chemo coma?" Would love to know more!
Lilyrose - You and I have an almost identical TNBC profile. I just made my first post re losing my big toenail and asking for tips on how to deal with it. The treatment plan recommended as best by my oncologist was the most aggressive of the ones presented to you - 4 rounds of A/C every other week, 12 weekly rounds of Taxol, followed by 6 1/2 weeks of radiation. I will begin my weekly Taxol this week. My Taxol was delayed one week to give my toenail, skin and mouth a time to heal - issues that arose about a week after receiving my last A/C. My oncologist was considering adding Carboplatin to the weekly Taxol, but nixed that idea, as it has not been proven for Stage 1 TNBC at this time. Until then I thought I had sailed through the "heavy duty" stuff without any serious issues. The issues I did have are tolerable, and I'm hoping the freezing booties and gloves (ElastoGel) I will wear during Taxol will help prevent further nail loss and also neuropathy. None of it's fun, but it is more doable than you think. Best of luck with your treatment. What did you decide to do?
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sweetjam
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Posted: Apr 29 2014 at 6:04pm |
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chemo coma is what i refer to that whole week after i get chemo on Monday. feel ok till noon on wednesday then severe fatigue sets in and i don't get off the couch or stay in bed and sleep all day.
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DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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kmwhope
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Posted: Apr 29 2014 at 6:30pm |
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Sweetjam you and I are almost on the same track I was diagnosed in Feb stage 1a grade 3 1.5 and brac-..just got my second ac yesterday..I have 2 more and then 12 taxol, I understand the chemo coma, I feel pretty good on Tues and then Wed and Thurs not so good..but I did rebound by Friday pretty well ..hope I do this time too...good luck with your journey...Kathy
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