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09-03-2003, 10:37 AM
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#1
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Guest
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Hi everyone
thankyou Christine and Joe for setting this up.
I was recruited willingly for the BCIRG 006 trial after intitial diagnosis of Stage 2 HER2+++ breast cancer in November 2002 at the age of 44. Yhis international trial ( I am in Melbourne Australia) is to test the long term effectiveness of Herceptin in preventing recurrances in Her2+ patients.
I underwent a lumpectomy on 1st Dec 2002 and had one lymph node slightly pos put of 14 removed. Tumor had clean margins.
I was randomly allocated to the AC -> TH arm of the trial which entailed 4 rounds of AC followed by 4 of Taxotere with weekly herceptin and then booster 3 weekly doses of herceptin for another year.
I have completed the chemo and have had my second booster dose of herceptin and am currently undergoing radiation therapy with 11 treatments out of 30 to go.
Extemely fatigued at this point with chemo side effects still kicking in on top of the rads and looking forward to finishing the rads and allowing my body a rest.
I am er+ so will start Tamoxifen when the rads finish.
Hugs to all
Kym
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09-05-2003, 03:00 AM
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#2
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Guest
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I will be interested to hear from other women on trials, thanks for setting this up!
I am also on the BCIRG006 trial, here in Southern California USA. I was dxd at 37 with high grade multifocal IDC (largest 0.5 cm), ER/PR neg, HEr2 pos, node negative.
Had a mastectomy April 03, and was randomized to the TCH arm of the trial. Weekly Herceptin, and 6 rounds of Taxotere and Carboplatin and Herceptin every 3 weeks, then Herceptin every 3 weeks until April '04. I finished with the nasty chemo 3 weeks ago, had my last loading dose"" of Herceptin yesterday" and now will recieve Herceptin every 3 weeks.
I was very pleased to get on the Herceptin trial " as it was my only chance to recieve Herceptin as a ""high risk" " node negative"" breast cancer patient. I was really excited to get on the TCH arm - I dont know why but I was (am) terrified of Adria!
I seem to have done well on the Taxotere and Carboplatin" and now I am waiting for my hair to grow back and hoping that the chemopause is temporary because the hot flashes are making me nuts even with Effexor. Ive had no reactions or side effects to Herceptin and my MUGAS havent changed so far - still at 75% and I have another one today.
My Dr. has quite a few patients on Herceptin long-term one for 5 years! She says she has yet to see anyones MUGA get bad enough to take them off Herceptin. I like hearing that!
Believe me - I know tired! I have been sleeping about 12 hours a night and only just stopped with the 2 hour naps! I have slowed down to working about 1/2 time but I think my energy (and taste buds) are returning gradually).
I wish all of us the best!
Carrie
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09-06-2003, 02:21 PM
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#3
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Guest
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Carrie " where in California do you live. I completed Taxotere about two months ago and am now getting Herceptin every three weeks. I did not have surgery because as my surgeon with no bedside manner said as I awoke on the table after the biopsy ""You won't have the pleasure of my services any more since your cancer is way too advanced for any surgery!"" I am stage 4 with bone mets but doing better every day. So far every MRI has shown improvement particularly in the bones. Wish that I could share my good fortune with everyone else."
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09-07-2003, 04:23 AM
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#4
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Guest
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That is really good news Mary! Im here in Long Beach and I go to the Breast Link clinic here.
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11-03-2003, 09:24 AM
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#5
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Guest
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I was on the TCH arm of BCIRG 006 and have had to stop herceptin because of low platelets. I could only receive 4 out 6 treatments of the carbo, taxotere and her2 because of same problem. Has anyone else had this problem?
Mary
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11-03-2003, 10:38 AM
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#6
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Guest
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Hi Mary,
I had a friend on the same arm of the trial as you and she also had problems with platelets and required transfusions which delayed treatment.
This is not caused by herceptin but the other chemo drugs.
She was able to complete her 6 treatments and is now on herceptin alone with no problems,
Cheers
Kym
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02-08-2004, 07:19 AM
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#7
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Guest
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I relate to the conversations going on with you people. I too am in the same pile in the BCIRG 006 trial on the AC-TH arm. My stats include a mastectomy last March followed by chemo followed by radiation concurrent with Tamoxifen. Radiation ended 12/29/03. Now I am dealing with the fallout from full torso lymphedema and scar tissue - only we can't do much right now because the skin is still too fragile. I stretch but it's not enough to combat the symptoms. Massage is just around the corner to rein in the fluid and break up the scar tissue. Compression includes wearing both the sleeve and cuff AND a foam padded insert that doubles as a make believe breast for now - at least it mimics the contour I tell myself. As to my her2neu status it was ugly. What am I saying - it IS +++ ugly. I am positive for both the hormones which I guess was a surprise to my med people. Stage two Grade 3 poorly differentiated fast dividing cells. Close margin vascular involvement starting to attach at the chest wall near the sternum. However all of the 15 nodes were negative another feature that surprised the surgeon. We did the sentienl node thing - NEVER again without pain meds!!! - but it didn't work so he did the underarm dissection too. It took SEVEN WEEKS before the drain could come out after the mastectomy because of the fluid production which continued for several more weeks and therfore I had to be aspirated repeatedly for comfort (yeah right). We had to make a move on the drain thing at that point so I had some time to heal from it before going into the chemo; otherwise it would have been an open wound for months... So after a monster number of tests and biopsies including to my liver under a CT scan I got into the trial.
What I can say is it is simple and noninvasive unlike other procedures and treatments taking this Herceptin. I tolerate it well. Conversely I did not like the Taxotere at all. I have numb toes and I had wicked aches with that stuff. I have serious thoughts over the heart thing and for the record my MUGA steadfastedly yields a 65% number. They tell me that is great but now that I know someone else had a 75% that makes me ponder... My Herceptin regime is every three weeks through Austust " ""04. After I get over the radiation damage" assuming I do of course I plan to have a robust life similar to my past life but different. For one thing " I am already on the ""recurrence trail" " by which I mean, because of my stats, every unusual or new event has to measured for metastasis. For instance, going to the eye dr innocently to renew my prescription spawned another visit to the guy upstairs to assure the unusual formations in the back of my eye were not more cancer in a vascular region known for this type of potential outcome. (What a mouthful - sorry...) The scar tissue/fluid swelling had to be assessed because the changes are NEW. Rather than freak about it, I am trying to roll with the punches and accept that they will be doing this to me more than I really care to participate - BUT it is for my own good. There, don't I sound rational and sane? Last month during radiation I contemplated the final solution, so, you see, the sanity thing comes and it goes....
Through all of this, I have continued to work, although, a lot of it has been while resting at home.
I am interested in learning how others in this experiment fare. I am willing to share some of my stuff, if people are interested in hearing about it.
Dee
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07-18-2008, 09:54 PM
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#8
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Member
Join Date: Oct 2006
Posts: 23
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Upadate for all... Its now the5 1/2 year mark (and just had my 50th birtday). All still going well and NED.
Much love hugs and white healing light to all!!
Kym
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07-19-2008, 12:26 AM
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#9
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Senior Member
Join Date: Nov 2007
Location: Brentwood, CA
Posts: 76
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Kym,
Thanks for the update and being one of the brave ones who tried a new therapy. Your cocktail was approved by the FDA one month after I was diagnosed in October, 2006. I hope I will post a similar update a few years from now.
Congratulations on your success.
Janelle
__________________
Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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07-19-2008, 02:47 AM
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#10
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Member
Join Date: Oct 2006
Posts: 23
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Hi Janelle,
Thank you so much.... I am so very glad that they finally saw the light and approved herceptin as a first line treatment !! I felt so fortunate that I was able to partake in the trial firstly and secondly that I was randomised into a group that got the herceptin, but I felt incredibly frustrated that other women in the same situation who did not have access to a trial were unable to access this life saving treatment.
I remember the help and encouragement I got from this site at the time and how I scoured the forums .... searching for those with a good result to help me focus on the postives. Thats why I always pop back now and again just to give a little encouragement to others who are in the same situation I was not so many years ago.
Its a scary journey but there IS life after her2 breast cancer diagnosis thanks in main to the real pioneers like Christine and the others who paved the way and encouraged the rest of us.
In Australia we finally got herceptin approved for first line treatment as well after much campaigning to politicians with rallys etc.
I pray you continue in good health and to show NED as I have done Janelle
Hugs
Kym
__________________
Dx Nov 2002 Her2 +++ Er+ 44 years of age (Pre menopausal)
Lumpectomy 1st Dec '02
Stage II 2cm tumor.. Clean margins
Her2 +++ Er pos
1 x Pos Node of 14
Entered BCIRG 006 Trial Jan '03
4 x AC 4 x Taxotere 30 Rads
1 year Herceptin
5 years Arimadex
Total hysterectomy (came out of chemopause) March '04
2012 - Still NED
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