Question for Gina

[Barbara]

Gina:


There are a couple of us on this board really afraid as our Serum HER2 tests have gone up. I know you have had this test done for some time. In my case my Serum HER2 on a normal range of 5.1 to 13.5 has gone up from 5.5 in September, to 9.2 in November to 12.2 in January. Have you ever had Serum HER2 levels as high as mine have reached and not have active mets? I would appreciate your insight.

Barbara

[Gina]

I answered in another place...but I think the highest I have survived is a serum her-2 over 600, but it was not documented. I do have several graphs were the CA 27/29 topped out well over 200 and the serum her-2 at those levels is usually about 3 to 3.5 times higher than the measured CA 27/29...so relatively...you really are in the normal range..., but as I said elsewhere...be sure to take these numbers just prior to each herceptin infusion and then look for a steady pattern of up up up...say 9 to 12 to 15 to 20 to 40...then it will start doubling pretty fast...if you see a trend like this...GET MOVING...either increase your herceptin dosage or frequency for a first attempt to control it or take a plamid DNA inhibiting anti-biotic like Zithromax or any quinolone (Cipro, Levaquin, etc) to slow things down till you can get everything back into control. Also, do not under estimate the importance of your diet and supplements...sometimes you can ease a borderline high serum her-2 back with just extra olive leaf (Natures Way Purple top bottle is good must contain REAL olive leaf powder and not just extract by itself). Be sure your omega 3's are in balance and that you are getting plenty of rest, fresh air and sunshine and walk if you can to keep all hormones and proteins in balance...walking reduces all cancer mortality by 60 percent...Be sure to get PLENTY of magnesium rich foods or take a mag supplement... Also, your pattern of being lower the week after infusion and highest just before herceptin is the typical pattern of someone with active disease...my pattern is like this as well.

Hope this helps--e-mail me GPopp@Comcast.net for more info,
Gina

[mickey]

Gina, what is your typical dose of hercepin. My dr started me long ago on a dose based on weight and has never altered it. My CA has recently gone from 18 to 21 to 26 to 28 to 31. Other question if you drink any green tea is it strictle decaf?

[Barbara]

Gina:

Thank you so much for your response. It makes me feel better and I highly value your advice and knowledge.

Barbara

[Gina]

Hi, thanks for bringing up another one of my PET peeve's about herceptin dosage...oncs who think that once the magic formula is set in stone...i.e. mg per kg, that they never need to bother about changing it...this has happened to me and many here on this board.

In practice, though, there are valid reasons to adjust your herceptin dosing...especially if you gain weight--I know NO ONC will agree, but Ithink even as little as 5 lbs weight gain can make a different in some cases where the her-2 is more active than others--with numbers going up as you note, I would worry that your case is becoming more active...so the first thing to have recalculated is your herceptin dosage based on your current weight...if your weight has gone up since that first time, by all means...start with this and give it a week or two and see how your numbers look. If you have lost weight, I would still take the dose prescribed unless you have lost more than 20 pounds as I really don't think a tad extra will hurt, but a tad under...might...that is all I am saying.

Again, no onc will agree, but sometimes, I can't really explain it...but sometimes..it just seems like we need a NEW re-loading dose..sort of like a booster for a vaccine...I have seen that help patients -- simply go in on your next scheduled herceptin and take the higher loading dose one time...and then, the following treatment return to your regular dosing level and schedule.... For me...I find it is important to take enough herceptin to STAY ahead of the serum her-2 creeping up, but even my own oncologist can not really "see" this and doesn't understand..plus, as I am on the 6mg/per kg schedule, she is highly reluctant to give me a re-loading dose of what would naturally be 8mg. However, in the past, she has readily regiven me the more typical loading dose of 4mg/kg for the weekly 2mg/kg regimen...so not wanting to give me 8mg as a booster makes no sense to me and is illogical, so I have to uh...use other means of tugging the her-2 numbers back down, but none are really quite as effective or as PROVEN to work as the herceptin...the other measures are hit and miss, at best....upping olive leaf is one and of course, hitting the z-pack is another..but that is something that should perhaps be "saved" until the numbers are really running away...there is NO research on this so I really can't be certain...just anecdotal evidence is all I have to go on and how it effects my own numbers...fyi.

Yes, I think there are valid reasons to drink green tea, though I usually do echinecea or rasberry leaf myself for the immunity benefits and female organ support...and it is interesting that you brought it up...one reason I don't do the green tea regularly is because I have fibroids and caffeine really does seem to make them get bigger and as I love chocolate...I tend to get my caffeine there as I am not much of a coffee drinker (except gourmet coffee after nice dinners), and I do not drink soda of any kind...although, another recent research tends to show that carbonated beverages, especially those with mineral water/club soda may be beneficial--but again, that could be just because of the extra magnesium and not the carbonation...there is a long discussion as to the pros and cons of carbonated beverages--especially sugar or diet sodas, but I will table that for another time and nothing is proven. I would say look at your over all caffeine intake and include the green tea if it fits in your program and makes you feel good as it really does not have that much caffeine and certainly a decaf version would have even less, though I have read that even decaf may still contain a very small amount..fyi.

Also, one more note on the Herceptin...check the time of day you are currently receiving the infusion...has it changed from say perhaps morning to late afternoon???...sometimes...merely going back to the early morning herceptin infusion will improve results as well...I know...as silly as it seems, but herceptin can decay over time, especially if it is kept unrefrigerated as it often is in busy chemo rooms where patients are herded in and out, even though I KNOW THE PACKAGE claims it will last 24 hours mixed...I wonder if the person who wrote that instruction had ever had ONE DROP OF HERCEPTIN in him??? hee hee hee....KEEP UP THE FIGHT...let me know how you are doing??? Take care, Gina

[Gina]

Hi, Barbara,

Good to be back on the same wave length with you too...just remember that even though I and others on this board use the tumor markers to help manage our cases...there is a chance that things can progress without the tumor markers being affected...this has never happened in my case...for me...someone who is ER-PR- and Her-2+++, the markers have always been and continue to be the first sign of trouble ahead.... That said, for those of us with her-2 who in general live in a world void of "CERTAINTY" about anything...the markers, at the very least..give us something to hold on to in the abyss...smile... Granted, it may not be the rope that leads us up and out through the top of the wishing well, but for the moment anyway, until we can find something better, it is the rope that keeps us from sinking any deeper...smile...or so we hope....sighhhh....

As an aside, I hope that both you and Mickey are keeping copies of all your tumor markers and other blood work and scans, etc. in your "binders" as in the future, what you learn is going to be valuable to us all...THANK you for rolling up your sleeve and giving your life blood to get those markers...you are the REAL heros in my uh...smile.."BINDER". And trust me...that is SAYING a lot...smile...smile...smile.... Never forget, each of us are our own mini- case studies...we can learn a whole lot more about her-2 by studying it inside a living system than any model will even be able to do. We are our own mini-labs..our own her-2 microcosms...and by adding to the general body of her-2 knowledge even in a small way..., we will not have suffered nor lived in vain. Finding meaning where we can in any of this is something that has personally been very difficult for me. Seeing what we do at the individual level in the bigger picture is the one thing that brings me the most comfort. Hopefully, it can, in some small way, bring you guys some well-earned peace as well.

Stay strong! Live LONG!
Gina