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stacey33 
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Joined: Mar 27 2012 Status: Offline Points: 6 |
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 Topic: Young Newbie :)Posted: Mar 27 2012 at 7:00pm |
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Hello Everybody!!!
I just wanted to introduce myself to your group, I just wish it was under better circumstances :) My name is Stacey, I am 33 yrs old. I was dx'd with breast cancer the first time in 20079. I had a bilateral masectomy when I was 29 with reconstruction. Went through 6 rounds of TAC (during which I got married to my wonderful husbancd). I was a stage 2B so I had elective radiation on my auxillery nodes. I am also BRCA 1 positive. As I was coming up on my 5 yr cancerverary (July 2012) in February I found a small lump in my "good" breast...had an ultrasound, biopsy the whole bit. Well it was cancer, they are considering this a "new" cancer because the first time I was weakly ER/PR +. This time I am triple negative. They staged me at 2A since I had no lymphnode involvement and it was only 1.9 cm. I get my chemoport put in tomorrow (Wed) and I start chemo GEM/Ciplastin on Friday...oh the fun. Any advice or information you can give me about the chemo or being triple negative would be great :) Thanks a bunch, Stacey
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rigatonismom
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Joined: Sep 22 2010 Location: Albuquerque, NM Status: Offline Points: 266 |
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Posted: Mar 27 2012 at 7:25pm |
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Hi Stacey,
Welcome to the group but sorry you have reason to be here. I just finished a clinical trial using Cisplatin at the end of last year. I found the Cisplatin easier on me than was A/C. I had a little of the bad taste but not as bad as Taxol. I didn't loose my hair. It thinned a little but not where anyone but me noticed. I was fatigued but I don't think I was a weak as I was with A/C. What I found, instead of sleeping all day, I would just sit on the couch and watch TV and not want to get up even to get the remote. With A/C, after taking a shower my legs would be shaking. The one thing with Cisplatin is that they gave me premeds, an experimental drug, a liter of fluid before the Cisplatin, a liter of fluid with the Cisplatin and a liter of fluid after. That's a lot of fluid and my chemo day was very long. Good luck and I'm really sorry you have to go through chemo again. Nita
Edited by rigatonismom - Mar 27 2012 at 7:26pm |
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DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Lee21
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Joined: Dec 22 2011 Location: Michigan Status: Offline Points: 752 |
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Posted: Mar 27 2012 at 8:12pm |
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Stacey,
I'm glad you found us -- this is a very supportive group of women and men who are willing to share time and experience. For more information on TNBC, I recommend you check out the links listed under NEW MEMBERS > OPEN ACCESS where many useful articles on various aspects of TNBC have been posted by a number of us. BRCA1/2 specific information is generally buried within the articles. I also want to alert you to the King study (TNBC talk --> King lab study thread) that many of us are participating in. This is a research study that aims to do complete genome sequencing of 20 or more breast cancer associated genes. The study is open and is at no cost to the patient, other than 2 tubes of blood. Best of luck, Lee |
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12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Mar 29 2012 at 1:33pm |
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Hi Stacey,
I am so sorry that you are having to deal with this a second time. I do not know anything about the GEM but am currently in the clinical trial for Cisplatin/PARP. I have had two of the four cycles so far, and cycles are every three weeks. I would say that it is easier than the A/C and I don't feel as crummy overall. I have my Cisplatin infusion on Wednesday, along with the PARP and it makes for a good 6+ hour day. On Thursday I am not too bad. By Friday afternoon, I am feeling run down and by the evening, the nausea is really getting to me. (I must point out that I have opted to not do the oral steroids because in the past the steroids really messed with my blodd sugar.) Saturday is a pretty crummy day and Sunday is so-so, with the nausea still there. I go back to work on Monday. The first round I felt better and better on Tuesday, this cycle, it was Wednesday before I felt pretty normal. Still tired in the evenings and going to bed earier than usual. By the time chemo rolls around again, I feel pretty normal, or at least the 'new normal'. For me, side effects are definitely the nausea and tired, at least early on. I have some auditory neuropathy that starts in the first week but at least during the first cycle it slowly dissapated over the three weeks. I notice some changes in feeling in my feet but wouldn't go so far as to call it outright numbness or tingling. Feet was where I was most affected by Taxol. Smells are really bothering me and the taste is a bit off. They also told me to make sure that I drink lots, and not just water, since this Cisplatin is hard on the kidneys. They suggested the same supplements people take for Taxol would also be recommneded with the Cisplatin since they both cause neuopathy. (B-6, B-12. L-Carnitine, L-Glutamine) That's all I can think of! Good luck with the chemo and keep us posted. Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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stacey33
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Joined: Mar 27 2012 Status: Offline Points: 6 |
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Posted: Mar 30 2012 at 1:03am |
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Hey Deb...did you experience any hairloss with this treatment??? My chemo nurse said that most people do not experience total hair loss but I may have some thinning that really isn't noticeable.
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June 2007-dx with bc
bilateral masectomy, reconstruction 6 rounds TAC auxillary node radiation 02/12 dx with new bc on other breast 03/12 4 rounds cisplatin/gem rads to follow brca 1+ |
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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Mar 30 2012 at 7:52am |
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Hi Stacey,
No hair loss!! It has been four weeks since my first infusion and it is still firmly attached! The onc said I would lose it and the nurses said thinning. It is only about an inch or so long at this point so it would be noticeable and I don't think it has thinned either! Bonus! Deb |
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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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rigatonismom
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Joined: Sep 22 2010 Location: Albuquerque, NM Status: Offline Points: 266 |
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Posted: Mar 30 2012 at 9:10am |
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Hi Deb,
I'm so glad your hair is still where it should be. Thinking back, I think that was one thing that helped me stay more positive. I dealt with the hair loss during my A/C but when I did the Cisplatin, it was really nice not to have to do it again. Nita
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DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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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 2012 at 10:53am |
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Stacey33, I had Gem/Carbo (a platinum, but not Cisplatin) and didn't lose my hair. After 4 cycles I noticed a little thinning but no one else could tell. Both my onc and chemo nurse said I'd lose my hair again, but was happy that it didn't happen. 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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stacey33
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Joined: Mar 27 2012 Status: Offline Points: 6 |
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Posted: Apr 04 2012 at 3:16pm |
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Donna...I actually got switched to carboplatin instead of cisplastin...I just had my 1st treatment last Friday....and i have the 2nd part of my first treatment this Friday. I have noticed that this chemo has been a tad better than the last time when I had TAC but it still sucks. It seems that in the morning it takes me a while to get going but once I do I feel better. Today I met a friend for lunch and I am pretty exhausted now. I am always super positive and ususally talk to newly dx'd young women but this time around I am not feeling that way. To be honest I am pissed and questioning if it is really all worth it. I mean I know it is but no one should have to do this once let alone 2 or 3 times. So enough of my pitty party...in a few hours I will bounce out of it and feel better ;)
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June 2007-dx with bc
bilateral masectomy, reconstruction 6 rounds TAC auxillary node radiation 02/12 dx with new bc on other breast 03/12 4 rounds cisplatin/gem rads to follow brca 1+ |
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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 04 2012 at 4:13pm |
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Stacey33,
I remember feeling the same way when I had my recurrence. I was really pissed that I had to go through treatment a 2nd time. I don't know if we ever truly get over it. 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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TNBC_in_NS
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Joined: Jul 26 2009 Location: NS Canada Status: Offline Points: 2028 |
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Posted: Apr 04 2012 at 8:51pm |
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Stacey33 & Donna:
I echo your words too! Only, pissed was mild as to how I was feeling. Especially when the docs said "Oh you will be fine, no chance of the other breast getting cancer, etc. etc.... My onc was great, he remembered what I said the first time around "never again for chemo"....I opted to not take any more chemo and just had the bmx in June 2011. So far so good. Have CT in July for followup. Here's to a great tx plan and easy chemo for you with complete response. Hugs,
Helen in NS |
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Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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stacey33
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Joined: Mar 27 2012 Status: Offline Points: 6 |
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Posted: Apr 08 2012 at 8:41pm |
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Happy Easter Ladies!!!! I hope everyone is having a WONDERFUL SUNDAY!! I had the 2nd part of my 1st round of chemo on Friday so I just had the gemzan, I did have to have a nuelasta shot the next day because my counts were down (they said that the gemzan is hard on your counts) and I feel GREAT!!! I it doesn't even feel like I had chemo...I am wondering if they forgot to give it to me...lol So, tomorrow it will be 72 hrs since the chemo and I hope I am doing just as good tomorrow. Then I don't have chemo for another 2 weeks ;) So excited...it's amazing how a few days can make you feel so much better. I want to thank you ALL for your support thru this journey. I have to admit, having TNBC is kind of scary but then again it's not. The %'s are still really GREAT...and as my oncologist tells me..you can't focus on %'s...just be aggressive in your treatment. %'s don't matter until you are of the % that is effected which is sooo true. I mean heck it was a 1-2% chance to get bc after a bilateral masectomy and it happened and i almost felt like I had a false sense that I was "safe". so whether it is 1 or 99% it doesn't matter unless your the one it effects.
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June 2007-dx with bc
bilateral masectomy, reconstruction 6 rounds TAC auxillary node radiation 02/12 dx with new bc on other breast 03/12 4 rounds cisplatin/gem rads to follow brca 1+ |
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