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Topic: < 5 mm HER2+ IDC...why NOT chemo???

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 27, 2012 10:57AM

dancetrancer wrote:

I've read thread after thread and all of the info, opinions are running together in my head.  I've only had since yesterday to absorb all of this (was up til 1 a.m reading).  I know this is a controversial topic, but I want to hear why you WOULDN'T recommend chemo for < 5 mm of IDC her2+ (mine is 3 mm).

I had my tests run at Emory (I was there for a 3rd opinion on radiation).  They found the IDC (3 other facilities missed it, including UAB) and tested it for Her2.  Transferred my results to UAB.  Found out I was HER2+ yesterday.

UAB told me yesterday afternoon, lets cancel your radiation, meet with onc to discuss chemo next week.  Go ahead and rip your rads stickers off.  So I did.

Today they call me and say, nope, we talked to the onc and they said chemo isn't warranted with your small cancer.  Come back in to get the marks drawn back on, b/c we want to start rads ASAP next week, you are already behind schedule.

So, I've got a call into Emory to see what their onc says.  WTF.  I'm so sick and tired of sleepless nights, changing opinions, thinking I'm going to die if I don't do chemo (OK, I know that's overreacting, but you all know how it goes) and convincing myself to do it, then I hear, nope, you don't need it.  I could do without this emotional rollercoaster, thank you very much.  Now I'm afraid to NOT have chemo and am paranoid about recurrence.

HELP talk me down off the ledge please!  (LOL, just kidding, but d*mn!) 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 11, 2012 03:05PM lago wrote:

AA you seem to be focusing on the downside. Many of us do very well with treatments. I know you've had a rough time.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Apr 11, 2012 03:19PM - edited Apr 11, 2012 03:23PM by AlaskaAngel

Lago,

I have never considered the factual information to be the down side, although others do. I have been quite fortunate despite receiving some very unprofessional and expensive medical care. Not everyone should be required to consider the facts grim in open discussion. The facts very very very strongly favor those with a diagnosis of < 5 mm with or without any treatment, so that is all to the better.

A.A.

Dx 12/3/2001, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 1/2/2002 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/11/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 9/9/2002 Breast Hormonal Therapy 11/14/2002 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 11, 2012 06:53PM vjm wrote:

Atta Girl Dancetrancer - Chemo ed class with my lovey today and wig shopping. Noone has more fun! Start my dance on Friday! Take good care  and be so gentle on yourself. vjm

Dx 10/28/2011, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 11/29/2011 Lumpectomy: Right Surgery 12/28/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/12/2012 Breast Targeted Therapy 4/13/2012 Herceptin (trastuzumab) Chemotherapy 4/13/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy
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Apr 11, 2012 08:55PM bucky317 wrote:

dancetrance  happy to read your tx went well!!Smile 
Finished chemo (Taxotere, Cytoxan, Herceptin) on 7/14/2011, Yahoo!!!! now Herceptin till 4/12 and Arimidex for 5 years Oncotype 28--- Ki 67 25% Dx 3/3/2011, IDC, Right, <1cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (IHC)
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Apr 11, 2012 11:46PM cookiegal wrote:

This is neither here nor there, but isn't there currently a mono herceptin trial for DCIS that is Her2+?

Perhaps the information will be helpful to those of you with small tumors. 

You deserve a cookie!
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Apr 12, 2012 08:12AM lago wrote:

cookiegal check this out: linky  (I do believe this trail should be done by now. The onc pictured is my onc and it's a very old picture).
DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Apr 12, 2012 01:48PM - edited Apr 12, 2012 01:49PM by dancetrancer

Thanks everyone for the kind thoughts.  I did have a rough night after the TC - I posted details on the TCH thread, if anyone is interested...I'm having trouble keeping up with posts, so thank you to everyone who has been so kind and supportive!!!!  And vjm, best wishes tomorrow - report in and let us know how you are doing!!!  The Herceptin went fine yesterday.  I got a good night's sleep finally last night with the use of a sleeping pill.  glad to be done with the dex for a while!!!  biggest issue is ringing of ears....otherwise, no pain and only mild indegestion/possible nausea, but well controlled with taking Zofran.  Oh, and of course, tired/lethargic. Thank you all so much again!  

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 12, 2012 02:36PM suzieq60 wrote:

dancetrancer - be prepared for the steroid crash - a couple of days after you stop the dex.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Apr 12, 2012 02:51PM dancetrancer wrote:

I know susieq.  Not sure what i can do to "prepare"...Is it just wicked fatigue, or worsening pain, or nausea, or what the what?  Is it just being mentally prepared?  I'm waiting for the ball to drop.  Last dex was last night. 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 12, 2012 03:27PM Moonflwr912 wrote:

Had a Herceptin tx today, went pretty good, needed xtra fluid, and magnesium and potassium . But I don't have to come back til next Herceptin next week. Hurt my back today though, had to take an oxcy though, hurts and can't get comfortable sitting, laying down or standing , arghhggh! Still have the nog D too. Such fun! Oh well, much love to all

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 12/7/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 1/16/2012 Reconstruction (left) Targeted Therapy 2/15/2012 Herceptin (trastuzumab) Chemotherapy 2/15/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/12/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/19/2012 Arimidex (anastrozole) Surgery 9/9/2012 Reconstruction (left) Surgery 8/13/2013 Reconstruction (left): Tissue expander placement Surgery 9/3/2013 Reconstruction (left) Surgery 12/12/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Apr 12, 2012 05:37PM chachamom wrote:

Had my post op and drain removed today YEAH!
Also have my pathology report which cleared up my confusion on the size of the tumor. What appeared to be a 1.3cm tumor was actually several FOCI of which the largest was only .3 cm.
Since the staging is not cumulative, but taken off the largest cancer, it is a stage T1a, pN0
I'll be discussing the chemo/Herceptin/hormonal treatment plan with an oncologist in the next week before I leave for Italy. Maybe I'll just stay there! JK

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm Dx 3/12/2012, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 5/30/2012
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Apr 12, 2012 07:05PM dancetrancer wrote:

Chachamom - now I see why your BS was unsure.  You have the same size tumor as me, same grade as well.  How old are you?  Younger is higher risk.   Hopefully this thread will be helpful to you in making a very, very difficult decision!!!  I feel for you!!!  

Italy sounds pretty darned good right about now!!!! Smile 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 12, 2012 07:50PM lago wrote:

chachamon the fact that it's multi focal will probably be factored into the decision as well.
DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Apr 12, 2012 11:55PM chachamom wrote:

I'm 57 ...post-menopausal for 7 years (of which 7 were on HRT!)
I'm so grateful to have this forum to help me!!!......knowing I can talk to other women who face similar situations makes me feel less isolated. I have a wonderful husband and great family/friends who want to support me....but they don't walk in these shoes. Blessings to you al!

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm Dx 3/12/2012, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 5/30/2012
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Apr 13, 2012 06:30AM dancetrancer wrote:

And blessings to you chachamom!  This forum, with it's many amazing sistas, has been such a godsend to me! 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 13, 2012 06:32AM dancetrancer wrote:

Best wishes vjm for your first chemo today! 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 13, 2012 09:00AM Moonflwr912 wrote:

Good luck vjm

Sometimes life SUCKS! Sometimes it doesn't. I prefer when it doesn't! If you're ever bored, read my biography. Bring snacks..... LOL Monica Dx 11/11/2011, DCIS, Right, 1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Surgery 12/7/2011 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/8/2011, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 1/16/2012 Reconstruction (left) Targeted Therapy 2/15/2012 Herceptin (trastuzumab) Chemotherapy 2/15/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/12/2012 Reconstruction (left): Tissue expander placement Hormonal Therapy 8/19/2012 Arimidex (anastrozole) Surgery 9/9/2012 Reconstruction (left) Surgery 8/13/2013 Reconstruction (left): Tissue expander placement Surgery 9/3/2013 Reconstruction (left) Surgery 12/12/2013 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Apr 13, 2012 11:46AM chachamom wrote:

Yes vjm! Sending prayers of support!

Jill. Age 59. "Life is a shipwreck, but we must not forget to sing in the lifeboats." - Voltaire. No chemo/herceptin and no radiation because the largest of multi focal tumors was 3mm Dx 3/12/2012, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 5/30/2012
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Apr 13, 2012 11:19PM vjm wrote:

Thanks for your well-wishes - Day 1 of 4 chemo with herceptin completed and tolerated well. Great nurses - cold gloves on hands to help preserve fingernails. Declined on cold-caps and feet - have bought a great wig and some scarfs. Should lose my hair before the next treatment May 4th. Wishing you all a great weekend and I will be out there marching and protesting the pipeline proposed to run from Alberta to the coast in British Columbia. Peace & Joy, vjm xo

PS can't wait to swim in the lakes with my bald head lol

Dx 10/28/2011, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 11/29/2011 Lumpectomy: Right Surgery 12/28/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/12/2012 Breast Targeted Therapy 4/13/2012 Herceptin (trastuzumab) Chemotherapy 4/13/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy
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Apr 14, 2012 07:06AM lago wrote:

Don't decline the foot frozen booties. That's where the nail lifting started with me. At one point one toe nail was so lifted that the only shoes I could get my foot into and walk was a pair of snow boots that look like work boots. Eventually that toenail had to be removed.

I never had an option of either.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Apr 14, 2012 07:52AM Sugar77 wrote:

vjm - lago's right...don't decline the booties. At the time of my chemo, they didn't have booties but the nurses put ice packs on my toe nails and it saved them.  Other's in my BC support group, who were going throught chemo at the same time, didn't get the ice on their feet and nearly all of them had nail problems. 

Surgery 9/24/2009 Lumpectomy: Right Dx 10/27/2009, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 12/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 12/5/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/26/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 14, 2012 08:45AM dancetrancer wrote:

Glad it went well vjm, wishing you minimal side effects over the next few days!  

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 14, 2012 03:18PM suzieq60 wrote:

vjm - you're lucky you got offered the cold mittens, a lot of ladies here had to take bags of frozen veges. We have the cold mittens here in Australia but not booties. My toes nails actually survived without, but even with the mittens, my finger nails lifted and came off 2/3 of the way down.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Apr 14, 2012 03:19PM suzieq60 wrote:

dancetrancer - hope you are doing well. Don't forget, any SE's call your onc and get something to combat them.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Apr 16, 2012 10:19PM vjm wrote:

How are things going Dancetrancer? Things are percolating here with some radiation recall ( I can see why they usually do chemo first), but all in all pretty good. Thanks for the input from susieq58, lago and sugar77 as well. Booties and caps aren't offered and I passed on the energy to organize - may regret in future, but will continue with gloves. peace & joy, v.

Dx 10/28/2011, IDC, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 11/29/2011 Lumpectomy: Right Surgery 12/28/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/12/2012 Breast Targeted Therapy 4/13/2012 Herceptin (trastuzumab) Chemotherapy 4/13/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy
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Apr 16, 2012 10:27PM dancetrancer wrote:

Hi vjm, good to hear from you.  Sorry to hear about the radiation recall...I had a bit of that with the dex, but it calmed down within a day or two.  Hope the same for you.  

Starting day 3 post chemo my symptoms racheted up.  I was really sick and uncomfortable Friday through this morning - lots of GI issues and extreme fatigue.  I'm better on the energy front today but now have oral thrush and wicked reflux issues (I'm already on prescription meds for this, doubling up, still symptomatic).  This TCH is some rough stuff.  Hoping for minimal side effects for you as you come off of your steroids! 

BTW, I have been posting and getting advice about my side effects on the taxotere,carboplatin and herceptin thread.  You may want to check it out - some very helpful advice over there!!! 

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 17, 2012 01:25AM suzieq60 wrote:

dancetrancer - right on cue - day 3. Get something for the GI issues - I had a really grumbly tummy and my onc prescribed Somac (don't know what you call it over there) - it worked a treat. Rinsing with Biotene mouth wash and using a special soft brush and toothpaste works too - this was given to me in a pack from the makers of Taxotere as a gift to say sorry for making me sick :)

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Apr 17, 2012 03:23AM dancetrancer wrote:

Susie - Somac is a proton pump inhibitor.  I'm already on one (have been for about 5 years).  I have a history of serious relfux issues.  Had finally weaned down to just 1 pill a day.  Now I put myself back on twice a day, still having breakthough symptoms, even though I'm still doing the Zofran (I get nausea with my reflux).  I've added in Pepcid which is an acid reducer (different class of drugs from a proton pump inhibitor - doc told me in the past that I can take them together).  Oh, and Tums, which of course gives minimal relief.  Up at 2 a.m. awakened from sleep due to pain/burping from reflux.  He's gonna have to give me something stronger than what I'm currently taking.  This is NOT good.  I'm afraid I'm burning a hole in my esophagus or stomach!   I wonder if the dex did it.  I think it increases acid production, but I'm not sure.  I'm going to post this on the TCH thread as well to see if there is any other input.  

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Apr 17, 2012 04:31AM suzieq60 wrote:

dancetrancer - just make sure you get something better then - the first tx is always the worst.

((((((((((((((HUGS BRAVE GIRL))))))))))))))

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Apr 17, 2012 07:18AM lago wrote:

vjm this nail lifting issue is one of the more rare SE but happens. You most likely won't get it but you never know. I got it really badly.
DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+

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