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Re: To all recently dx. and those who are visiting the site who are
Also, I need to add - I was one of those women who was only 3 months done with chemo when Herceptin became available. Initially, people like me who were done with chemo already were told we could get Herceptin if we were 6 months or less from our last chemo. Many of you on the board will remember (at least you will remember Angel) that I rushed like a NUT to get everything together to do it and then my onc (at the time) refused me so I had to rush to get it elsewhere. By the time I got my first infusion (5 weeks later), ASCO already changed the 6 month from last chemo to 12 months from last chemo. Many oncs at that time were giving it to their patients who were still in that 2 year window just for the rationale that Angel gave - the first 2 years, you are the most vulnerable to a recurrence. Oddly, my new onc gave me 5 extra every 3 week infusions because - since I started Herceptin at 9 months from surgery, that extra 5 (15 weeks) brought me just days past my 2 year from surgery date. My onc said - if insurance will pay for it , why not? I am protecting you through your weakest moments and I was on either Tamoxifen or Arimidex this whole time for an extra bang. Wow do I remember that time in Her2+ bc history. It was crazy. Trying to help people on the board get late Herceptin. It is nice those days are gone but it made many of us strong fighters - strong advocates for ourselves and others.
Secondly, I think it will be difficult to get trials for Herceptin alone (for small tumors, node negative) because I think many women will be afraid not to have the chemo too so there will not be enough women doing it - therefore the results may not be statistically significant. I think if they discover something that tells us that we are Herceptin responders - then those who test as responders would. Otherwise ...
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Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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