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Old 04-03-2009, 09:54 AM   #1
welthy
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Red face clinical study for bc..herceptin & taxol

My name is Welthy and I am 71 years young. I had my first mamogram 1/23, 2nd 2/5, biopsy 2/11, lumpectomy 2/24,lumpectomy 3/3 Invasive ductal adencarcinoma with HER2 3+. SA node neg. Had a mamosite balloon put in, then radiation twice a day for five days. Thought that would be it, but then was told I need chemo. If accepted into a clinical study the chemo will start 4/11. The plan is to have a port put in after the first dose and then Taxol and Herceptin once a week for 12 weeks, then Herceptin every three weeks or weekly for 40 weeks. I have done a lot of reading, but haven't found anyone that has had this series or that is in a study. Any information or suggestions will be appreciated. Welthy
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Old 04-03-2009, 12:28 PM   #2
schoolteacher
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Welthy,

I had neoadjuvant taxol and herceptin. I did four treatments. The first two were every three weeks and the other two were every two weeks.

Amelia
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Old 04-03-2009, 01:09 PM   #3
Mary Anne in TX
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Hi Welthy! So sorry you must be here, but am so glad you found us. I did Taxol & Herceptin with Carboplatin for 8 weeks every 2 weeks and then some other stuff too. I found it a bit hard at times, but very doable. Best wishes and keep asking questions. ma
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 04-03-2009, 05:18 PM   #4
Sheila
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Welthy
I was not on that particular protocol, but I can tell you that I have been on Taxol Herceptin for almost 2 years now....I just had my 60th Taxol....other than hair loss and some neuropathy, it has not been bad....the port has been a piece of heaven...I did it weekly for the first year, now every 2 weeks...i am more than happy to answer any questions you may have...
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 04-03-2009, 06:12 PM   #5
welthy
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Thank you for the information and encouragment. Welthy
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Old 04-04-2009, 01:58 PM   #6
pmellon
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I am on 12 weekly Taxol w/year of Herceptin

Hi Welthy - I am on the 12 weekly taxol/herceptin treatments w/a year of herceptin every 3 weeks after that. I am also node negative, stage II. It is a trial that I am on. My oncologist offered a couple of different options and basically said the thought is with the success of herceptin that the current standard chemo treatments may be over treating. It was a hard decision to make, but I went with it. I am on my 4th treatment and so far little side effects. Tired. Starting to slowly lose hair. I feel good about my decision and hope it works out. Best of luck to you - let me know what you end up deciding on.
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Old 04-05-2009, 05:22 AM   #7
welthy
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Hello pmellon..I don't know how to put my location on the board.(Tn) Good to hear from someone that is on this combo of drugs. As you said, it is a hard decision. Let me know how you are doing and I will let you know if I start chemo Thursday. I will keep you in my thoughts and prayers. One day at a time!
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Old 04-05-2009, 03:04 PM   #8
atdec05
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I had 12 weekly Herceptin/Taxol for a recurrence. At that time they thought weekly was better than biweekly or every 3 weeks.

take care,
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Stage I - DX 9/2005
ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis -
start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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Old 04-06-2009, 10:15 AM   #9
Shobha
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Hi Welthy,

I was given Taxol and herceptin weekly for 12 weeks and then FEC+Herceptin for 12 weeks, followed by some more rigorous treatment plan because of my stage (IIIB).

My first 3 months on Taxol and herceptin were quite easy. In fact, I hardly experienced any fatigue. I had mild bone pain due to the decadron (steroid) but they reduced the decadron which helped right away.

All the best to you
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
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Old 04-13-2009, 06:03 AM   #10
welthy
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pmellon, I go to surg tomorrow for the port and start the study chemo Wed. Feel it is the best plan for me. Less side effects sounds good. Hope you are still doing well and getting the rest you need.
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Old 04-13-2009, 06:10 AM   #11
pmellon
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Hi Welthy - Good luck tomorrow with the port. It's nice to have some company on the weekly taxol/herceptin protocol. I go to treatment #6 of 12 this week - half way! (of course, I'll do herceptin for a year) I still feel good. No major side effects. Still slowly losing hair - pace is starting to pick up, but I guess I knew it was coming. Tired sometimes, tingling in one hand. So far so good! Keep me posted on your progress!
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Old 04-14-2009, 04:28 PM   #12
Greg
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Hi pmellon,

My wife started her weekly TH today, one down eleven to go! Have you had any problems with neuropathy or nausea during your first six weeks? Thanks!
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Old 04-14-2009, 05:03 PM   #13
pmellon
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Hi Greg - So far I have had some tingling/slight numbness in my hand, but it only lasts for an hour or so and then disappears. My hands and feet also get really itchy on the inside sometimes, which they said is neuropathy. I have had absolutely no nausea at all. The worst part for me has been the steroids and the side effects from those.

I wish you and your wife the best. Getting the first one done is the big step. Each week is a step in the right direction and isn't quite as intimidating. Keep me posted.
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Old 04-14-2009, 05:33 PM   #14
Greg
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Thanks Pmellon! My wife got 4 mg of decadron and hasn't had a problem with the steroid....yet anyway. She is feeling really good right now but we can't help but think there is a storm coming tomorrow or the next day! She has been keeping her fingers and toes cold using ice packs during the infusion and still is using them off and on. We also have read about glutamin and vitamin B-6 but are a little hesitant to try those. Would hate to keep the chemo from doing what it's supposed to do! Thanks again and congrats on being 1/2 way through. Can't wait until we are!
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Old 04-14-2009, 08:03 PM   #15
atdec05
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Hi Greg,

I didn't experience neuropathy until the half-way mark. It never got too bad. I started taking L-Glutamine power and that seemed to help. Dana-Farber has a neuropathy regime that includes L-Glutamine and other supplements. I don't think it interferes with the chemo, but of course check with your wife's onc. about what she should take if she experiences neuropathy.

I felt terrible stomach cramps the first few treatments, but Pepto Bismol helped. I think the cramps were from the steroids. Other than that, I was fortunate to get through the 12 treatments without major side effects.
__________________
- Anna

Stage I - DX 9/2005
ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis -
start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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Old 04-14-2009, 08:16 PM   #16
Jackie07
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Hi Welthy,

Glad you've got all kinds of good tips. Just wanted to wish you a good day for tomorrow.
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Old 04-15-2009, 01:14 AM   #17
welthy
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Thanks pmellon and Jackie07 for thinking of me. Had the port put in yesterday, but another"little surprise" with the chemo changed from Wed. to Thurs. Want to get this started! Good to hear that you are half way finished pmellon. Greg, I was looking at some of the alternative vitamins, but not comfortable with starting too many things at one time.
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Old 04-18-2009, 03:46 PM   #18
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Hi Greg - I was taking 20 mg of decadron before treatments, I am now down to 10, so that has helped. How is your wife tolerating so far? I'm hoping all is going well.

Hi Welthy - How did your 1st treatment go? Hopefully all went well and you are feeling good.
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Old 04-18-2009, 10:22 PM   #19
Greg
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Thanks pmellon,

She is being given 4mg of decadron. 24 hours after the taxol infusion she had a rash with a few small welts and also complained of a sore throat and painful eyes. She also ran a slight fever of 99.5. We are wondering if that was a reaction to the taxol and if so can she expect to have a worse reaction next time? Thanks again for all of your help.

Greg
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Old 04-20-2009, 01:48 PM   #20
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Hi Greg - that is scary - has she been better since?. Do they think it was a reaction to the taxol? My reaction to taxol was immediate within minutes of getting my first dose. So, they just upped the steroids and benedryl and I haven't had a problem since.
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