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MLindaG 
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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 Posted: Sep 20 2013 at 11:40pm |
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Hi Lizzylou, How big was you tumor? I'm a bit confused as to what chemo you've taken and where you are in the process of Chemo. What was your original plan? Why do you feel you need to take more chemo? I did not take dose dense a/c or taxol.......it is not customary in my area to do it that way. I had a/c every three weeks x4 and taxol 1/wk x 12 weeks. My lump was 3.5 cm and I had 3 lymph nodes involved and ended up with a Complete Pathological Response....... Wishing you the best!!
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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dawncoskren
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Joined: Jun 19 2013 Location: NH Status: Offline Points: 124 |
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Posted: Sep 21 2013 at 11:28am |
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Hi All,
I haven't been on in a long time either. Just trying to get through my treatments :) Last A/C is on 9/27 Whoot Whoot, can't wait for that. Than 4 rounds of Taxol. Hoping that will be a little easier! Not much new to share just fighting the fight. Hope everyone is doing well. xoxoxoxo  |
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DX 6/14/13 TNBC-IDC
7/15 BRCA 1 Positive 7/16 double mastectomy 7/23 Post surgery Pathology- Stage1,tumor 2cm nodes clr. 8/16/13 4 A/c and 4 Taxol 1/6/14 implants 3/13/14 ovaries and tubes removed |
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dawncoskren
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Joined: Jun 19 2013 Location: NH Status: Offline Points: 124 |
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Posted: Sep 21 2013 at 11:32am |
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mlindag
Hello, Just wondering about the dose dens. I'm getting that. It's strange to me that it can be so different based on where you live? I thought it was standard care?
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DX 6/14/13 TNBC-IDC
7/15 BRCA 1 Positive 7/16 double mastectomy 7/23 Post surgery Pathology- Stage1,tumor 2cm nodes clr. 8/16/13 4 A/c and 4 Taxol 1/6/14 implants 3/13/14 ovaries and tubes removed |
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wildabandon
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Joined: May 30 2013 Location: Greenville NC Status: Offline Points: 53 |
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Posted: Sep 21 2013 at 12:52pm |
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Hi Peeps. Haven't been on here for a bit. As a Newbie this spring I'm not sure how to post a new thread, so kind of catch random waves through the site. Finished up my (4) three week rounds of chemo - A/C- and am now on weekly rounds of Taxol. Twelve total with two down and ten to go. After that, six weeks of radiation.
Handling it with as much Grace and Dignity as I can, but some days it seems the whole freakin' body is falling apart. This week my toenails started to come off and it's a whole new world of pain. Other than keeping them super clean and wrapping them with bandages, does anyone have any other suggestions as to how to protect them from the agony of socks and shoes? So far I am hanging on to optimism that my fingernails won't fall off, too. As a quilter and a wool mitten maker (from recycled wool sweaters and the season is approaching) it would definitely hinder my work. Did anyone whose toenails fell off also have fingernail loss? Also, I'm guessing it's normal to spiral into worry when one feels a sharp pain in the breast. Guessing it's just nerves reattaching after the wounds start to heal. Well, onward and upward. Today is a down day, but it's been only one of about three since my diagnosis in late April. Grace; Greenville NC
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IDC/level3/triple negative
4 nodes-negative/ metaplastic sarcomatoid carcinoma 5/15/13 left lumpectomy 06/04/13 begin A/C 6 rnds Taxol 9wks 33 rads NED 02/28/2014 Mets in both lungs & chest June 2014 |
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wildabandon
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Joined: May 30 2013 Location: Greenville NC Status: Offline Points: 53 |
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Posted: Sep 21 2013 at 12:57pm |
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Hi, Dawn,
I'm doing Taxol right now in weekly doses and have had very little nausea. (Projectile vomited all the way through the A?C rounds even with seven nausea meds.) Most days I feel just awesome and can carry on normal activities on the Taxol. Smaller doses every week seem to be a good option for me after the rough first three months. Having some pretty serious toenail loss right now, but that is the cumulative effect of all of the chemo, not necessarily just the Taxol. That which does not kill us.....well, it does not kill us. And that's a good thing.
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IDC/level3/triple negative
4 nodes-negative/ metaplastic sarcomatoid carcinoma 5/15/13 left lumpectomy 06/04/13 begin A/C 6 rnds Taxol 9wks 33 rads NED 02/28/2014 Mets in both lungs & chest June 2014 |
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dawncoskren
Senior Member
Joined: Jun 19 2013 Location: NH Status: Offline Points: 124 |
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Posted: Sep 21 2013 at 1:03pm |
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Thank you. I'm having a hard time with the a/c. Really hoping taxol will be a little easier. Hoping I don't have the nail loss. Sounds painful.
I'm doing taxol every two weeks. Its weird that is varys so much. I will have to ask the onc about that again. Really hope you feel better soon xoxoxoxo o |
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DX 6/14/13 TNBC-IDC
7/15 BRCA 1 Positive 7/16 double mastectomy 7/23 Post surgery Pathology- Stage1,tumor 2cm nodes clr. 8/16/13 4 A/c and 4 Taxol 1/6/14 implants 3/13/14 ovaries and tubes removed |
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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: Sep 21 2013 at 2:29pm |
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Ladies, when the toe nails go if they do, there is no pain at all. When mine fell off (both toes & fingers) a baby nail was already started underneath.
I found the Taxol to be a bit easier in some ways, less sick feeling but had more Nueropothy. I lost my brows on A/C and the Taxol finished off what hair I did have and my lashes too. 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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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Sep 21 2013 at 4:31pm |
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I lost my toenails......The pain (and the awful smell) is when they are starting to lift. A niece of mine who was going through chemo 3 months before me advised me to go to a foot doctor (podiatrist?) and I did and he cut some of them back (did not lose all the nail on some) others he removed (did not hurt at all) - gave me some anti fungal cream and then I saw him about every 6 weeks for him to continue to remove bothersome parts of my nails and check them all etc. I only had one fingernail that ever looked questionable but I did not lose it.....I got dark areas on all my fingernails but they never did lift. Good luck as you go through all of this! Taxol was much better than A/C!!!
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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MLindaG
Senior Member
Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Sep 21 2013 at 4:41pm |
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dawn, I asked my onc before I started as my niece (MD) and my best friend (CT) both had dose dense and he said that the outcome is no different and most do not have to have the shots (to boost your counts) when you do it every 3 weeks. And that's how we do it here.........dd is common on the east coast. That what he said.
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Lizzylou
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Joined: Jun 28 2013 Location: Illinois Status: Offline Points: 31 |
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Posted: Sep 21 2013 at 5:04pm |
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Hi, mlindaG, my tumor was about 3.5 cm too, had mastectomy a/c x4 and taxol x4 every 3 weeks 1 + node, a big node, i was just worried about not having dd chemo, i didnt know everyyhing i know now, when i was first diagnosed, i have one more taxol tx. as my first plan goes, i thought maybe 2 more dd would help, some get 6 taxols, ive read this, have a better onco. now, i had one who just didnt care or want to answer guestions, suggestions for what i should do????? Thanks pat.
Edited by Lizzylou - Sep 21 2013 at 8:22pm |
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Pat
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MLindaG
Senior Member
Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Sep 22 2013 at 11:03am |
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Lizzylou, I did not find this site until I was almost complete with my treatment so I did not question my onc as much as I might have at the time either. So I take it that they did the mastectomy first and then you had chemo?? The good thing about the reverse IMHO is I knew as I was going through chemo that my tumor was shrinking and the chemo was working. He felt it was shrinking all the way through A/C....When I had my 8th (out of 12) taxol he told me he could not feel the tumor but felt something which might just be fiberous tissue and not the tumor.......When I got my 12th (final) treatment.......he didn't feel anything. (I only saw him every 4 treatments of taxol). So we knew then that it seemed like it was gone but we couldn't be sure until after surgery and they did the lumpectomy (removal of the marker put in at biopsy with surrounding tissue removal to test for residual cells) I had an MRI in January that showed no cancer but again we had to wait for after surgery to be completely sure. If you feel your onc is good and understands TNBC I would just talk it all over with him and see what he thinks. I know there are many on these boards that feel dd is the only way to go but obviously here in Pittsburgh PA it is not........I do feel that for me (I only have one kidney......born that way) I'm kind of glad I did not have dd........every three weeks was almost more than I could bare.......The A/C hit my very very hard and I'm not sure my kidney would have held up every 2 weeks........the extra week gave me some time to recover a bit........
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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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: Sep 22 2013 at 12:00pm |
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Lizzylou,
You have a good onc now who understands TNBC. Ask her those questions or your worries and see if she suggests anything else? What I've learned is we can't go back and beat ourselves up with questions about what we should have done. (Believe me, I've done that!) All we can do is move forward and wish for the best. I think all of us have regrets and wish we would have done something differently. PS: I had a horrible onc #2 and fired her after the 2nd meeting. Hugs, Donna
Edited by 123Donna - Sep 22 2013 at 12:01pm |
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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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debB
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Joined: Sep 14 2011 Location: Central Illinoi Status: Offline Points: 692 |
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Posted: Sep 22 2013 at 1:43pm |
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Grace,
To start a new topic, go to the forum in which you wish to post it, and at the top of the page, just under the forum name, you will see a place that says new topic. Click on that, label it, and type away! 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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