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Old 10-05-2010, 06:29 AM   #1
KitCat
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Location: Mississauga, Ontario, Canada
Posts: 40
I'm new and need info

Hi everyone! I have completed my 6 roiunds of THC and am now starting radiation next week and will continue on hercepton for a year. I am satge 2b with one lymph node involved, ER-, Pr-. If anyone has a similar diagnosis I would love to hear from you. How do i get involved in clinical trials> I have been reading about Tykerb and TDM1... is it availbale for me? My onc doesn't talk about clinical trials. Any input would help. Must I finish the year of Hercepton before being elligible? Also how do i get my stats to show at the bottom? Thank you!
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Old 10-05-2010, 07:15 AM   #2
caya
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Location: Thornhill, Ontario Canada
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Re: I'm new and need info

To add your stats, click on User CP, then under Settings & Options click on Edit Signature. Enter your stats, then hit Save Signature.

Sorry you had to join the club, but welcome. I'm sure other members will chime in with answers to your other questions.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 10-05-2010, 09:15 AM   #3
AlaskaAngel
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Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Clinical trials

Hello, sounds like you are off and running!

There is a forum here for clinical trial discussions.

But also, to search for clinical trials, use:

clinicaltrials.gov

When I met with my oncologist in 2002 for the first time and asked about clinical trials, instead of referring me to the cancer learning center or telling me to search clinicaltrials.gov, his answer was confusing and discouraging to me. All he said was "There are thousands of them." Because of that, at the time I missed out entirely on a possible opportunity to get in on a trial for the use of trastuzumab. Keep rolling, learn as much as you can!

AlaskaAngel
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 10-05-2010, 09:58 AM   #4
naturaleigh
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Location: South Carolina
Posts: 183
Re: I'm new and need info

Hey KitCat,

I am glad you have found this group, it is a bunch of very knowledgeable people, and many that are or have been in your shoes.

I am not one of the knowledgeable ones, but one of the ones that has been in your shoes.

I was diagnosed in 2005 after being mis-diagnosed in 2004 with a large tumor. After a year it had grown to a 6cm tumor. I am also Stage 2B, Her2+++, er- and pr-. I underwent the same treatment you have in 2006 and 2007, I just did radiation last.

My understanding of a Clinical trial is that a new drug is being tested and is being tested on patients which meet certain criteria. When I started Herception the Herception trial had just recently ended, which meant that it was proven effective, through the many people that were on that clinical trial. Next month will mark my 5th year of when I was first diagnosed, or how I prefer to look at it, 6th year of when I was mis-diagnosed. After all this time I have not had a recurrance and life is back to normal. That is not to say that the thoughts of cancer are not there, they are no longer what I think of continually as was the case with me and probably everyone else when they are first diagnosed.

Keep in mind, that if you ever do have a recurrance, it will probably be many, many years down the road and because of these recent clinical trials there will be even more options for a plan of attact so you still may not qualify for the current clinical trail. Herceptin has done the trick for so many, especially for the newly diagnosed. I know you feel like a sitting duck and feel you need to do more, but rest assured, you are in the correct treatment. The year will go by before you know it and then you can start to put all this behind you.

Always feel free to come here with any questions you may have. You will be amazed of the help that you from this wonderful site.

If you ever want to PM me, go under my name and look for the PM link.

There is also a lady on this site, MaryJo which shares the same diagnosis as us. She was diagnosed a few months before I was. She is out power walking everyday!! While I was on Herception, I went and walked several miles before my treatment. Things look dark at the moment, but soon you will start to feel better and will resume your current activities.

Good luck to you!!

Anita
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Anita

er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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Old 10-05-2010, 01:18 PM   #5
KitCat
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Re: I'm new and need info

Wow!! Thank-you Anita! I needed that!It is so great to hear positive things from people. My Oncologist is ok... but I feel that I must be my own advocate and be very diligent. We all must. No one is going to look after us as well as us.. right? i saw that some people are on Tykerb and the TDM1... I will research this. Yes walking... I must get back into powerwalking. the chemo set me back. I am stating slwoly again. i love walking and especiall this time of year as it is Fall. I am in Ontario, Canada... the colors are gorgeous. Tahnks for all your input everyone. I'm glad i am part of this support group. You' re all wonderful! xox
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