Hi, Rhonda,
I can only write to you about this from real life experience from monitoring my own bloodwork all these years and that of so many other folks with her-2 mediated cancer. All I am saying is that it has been my experience many times and that of others with this illness that the exact blood values you mention --especially when elevating together--
are the very same trademarks of very active her-2 illness. But do not despair. As long as you are getting the Herceptin, you should be able to keep them relatively under control, but from the topsy-turvey nature of your recent counts, I am wondering if you are getting a high enough dose of herceptin frequently enough. What were your serum her-2 markers and/or your CA 27/29 markers?? Often, if the CA 27/29 is say..in the 20's...the oncs think this is within normal range, but experience has shown that unless the CA 27/29 is below 10, the serum her-2 is still elevated beyond its normal range, and thus, can still be actively promoting progressive disease somewhere. The liver or bones both being common sites of mets. In general...all people with
active her-2 disease will have elevated GGT's. It is not just if "you sneeze"..but interestingly...all alcoholics and folks who drink at least daily will also have mild to moderately elevated GGT's,
but you can have her-2 disease and never drink a single drop of alcohol and this number will generally be elevated. There is a very logical explanation for this elevation of GGT, but time is limited and it is a bit complicated. What I am saying is to take your GGT VERY SERIOUSLY. Try to bring it down below at least 90, if you can. In general, when the liver enzymes are elevated
with the ALK Phos, it USUALLY, but NOT always...indicates the active disease is somewhere in the liver. If only the GGT and ALK Phos are elevated..usually, but not always, that indicates something going on in the bones.
At these low levels, progression, in my OWN experience, can usually not be detected by CT's or most other "scans". The best bet is to also be getting your tumor markers checked and if they are also elevating, INCREASE dose or FREQUENCY of Herceptin. If this is NOT possible..., the only other way I know to decrease all these numbers across the board is by increasing your MAGNESIUM intake, along with Vitamin A and D as in fish oil, try taking 2 to 4 500 mg tabs of Nature Way real OLIVE leaf caps daily along with one 500 mg of evening primrose (provided you are not on cumudan), a good basic multi-vitamin and as much zinc as you can take internally and apply it externally. If worst comes to worst and you feel the her-2 is increasing at a rate that can not be slowed by alternative means and if your onc is unwilling to give you the extra herceptin you need to bring the numbers back under control...try to go to your primary care doc and get a z-pack (as used in sinus infections and pneumonia and STD's like Chlamydia) and take it as prescribed...and see if that brings the numbers way down...which it should. Once the numbers have been significantly lowered by whatever means, the same dose and frequency of Herceptin you are taking now should keep them in check till the next bout of nasties raises its ugly head. Think of this illness more like diabetes and that we are "canceretic" like diabetic. Use our serum her-2 and ca 27/29 values to monitor the level of our disease and then add the Herceptin as much and as frequently ONLY AS IS NECESSARY to keep those numbers all in control. That is the best advice I can offer. Do not be complacent. The folks who live the longest with this illness are the ones who are often the most out-spoken. You must be your own best advocate. It is not that the oncs don't care--it is just SO MUCH ABOUT THIS DISEASE that they just don't know or understand at this time. Educate yourself...and stay brave and strong. You will be fine. You have so many options open to you and write to me any time.
Highest regards,
Gina L. Popp
Gina@Comcast.net
Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.