|
Dear Hope,
If you are certain that you are ER- PR- and Her-2 +++, I would STRONGLY advise you to keep this e-mail, at least as a back-up fail safe, if you really get to a place where you feel you have NO other options. What I am about to suggest to you is a last- ditch effort, highly controversial and completely unproven by the masses, but I have seen it do wonders with my own eyes. When you gave your history noting the CA 27/29 markers and your otherwise good blood work and obvious STRONG will which I so admire, I believe this could help you more than anyone would guess. Also, controversial, but keep in mind that if your CA 27/29 is around 60, your serum her-2 levels are MUCH higher. Probably roughly between 180 and 300, which is not that bad, but not that good either. You could find out by having a serum her-2 test to know the exact number as a base line before starting this regimen and then monitored at regular intevals throughout, which, though controversial, would give you a clue to if it was working or not and beats guessing and the old onc stand by of "wait and see..." sighhh.
First thing: GET THYSELF to a Z-pack...a 5-day one if you can (Pfizer's Zithromax). If your onc refuses, usually you can get one from your primary care. Take 4 all at once, like they do to treat serious infection, provided your kidney function is excellent...if there is any worry about kidney failure, take only the prescribed 2, then follow one, one, one, one, each day, thereafter. This should help with the lungs and rev up the ol' immune system.
Eat as well as you can while on the Z-pak and rest up. Get a muga scan. If your muga is at least 58-60, re-start HERCEPTIN ONLY (NO CHEMO NO PRE-MEDS of any kind--especially NO benadryl) at 8mg/kg (then 6mg next week, then 4 mg, then 2 mg/ 2 mg etc.) of your current most accurate body weight, this is NO time to fudge that number..smile. If your muga is not too good or between 50 and 57, use loading dose of 6mg/kg (then 4mg next week, then 2mg, 2mg...). If your muga is flat out horrible, less than 50, use only the prescribed 4/mg loading dose, followed by the old standby of weekly 2/mg, etc. Then, watch your numbers...treat weekly until the CA 27/29 is around 10 and the serum her-2 is about 12, but then treat only as frequently as necessary to keep the numbers there, say perhaps move to the 6mg per 3 weeks maintenance regimen. This HERCEPTIN ONLY regimen is particularly good for folks who make the personal decision to do no more hard core chemo and are dealing with QOL issues. When coupled with a sound diet and non-toxic supplemental base regimen and moderate exercise, this approach can be very powerful and life extending and even, sometimes, life-enhancing. Of course, it is a very personal decision for all us, and I do note that you have had brain involvement and I have no experience with this regimen of herceptin alone and brain mets, but it is something to throw out there to be considered. I am no onc and can not prescribe anything. I am only saying what I witnessed and is purely anecdotal, and not proven. For what it is worth, my heart goes out to you and yours, Gina
|