blood tests, etc.

[sarahdalton]

Gina had mentioned having ongoing HER2 tests. What would they be? blood tests and how often, etc.
Also what is a Pi3K test?

[Lisa]

There are really no so-called "ongoing" tests for Her2. The Bayer serum test can measure the amount of the protein in your blood compared to the last serum test. This is not a commonly used test and many oncs are unfamiliar with it. The creator of the test tells me they are just now doing studies to determine the value of the test for patients who have been on Herceptin for a while. He says they will know more in a few months.

Sarah, what is your status? We'd love to get to know you.


Love and light,

Lisa

[Gina]

Hi, Sara and Lisa,

Yes, I mention these tests quite a lot. There are two Serial serum Her-2 assays. One that Lisa mentions by Bayer that goes up to a norm of 12 and another performed by Labcorps that goes up to a norm of 15. In the early days, I used Specialty Labs out of California to get the earliest results, not long after they were approved. These early tests did not give you an exact number unless you were in the normal range, and merely noted you as being "her-2" high, if you were out of range, but gave no number to suggest how much out of range you were. Fortunately, the other tests came along and were much more accurate. In over 7 years of testing, I have found them to be MORE ACCURATE, cheaper, quicker, and less invasive than frequent scanning, but that is just my opinion. I also still get scanned every 6 to 12 months just to be on the safe side. In my case, large increases of markers ALWAYS resulted in mets appearing on the scans..eventually....fyi.

I am one of the long time users on herceptin alone who has been serial tested (meaing taking the markers on a regular, charted basis) since 1998 for the serial CA 27/29 and together with the CA 27/29 the serial serum her-2 since 2003. I have extensive graphs and personal experience with how the markers react in my body when I take herceptin and when I don't. I am ER- PR- and Her-2 +++ and I have an excellent quality of life, currently taking 6mg of Herceptin every 6 weeks (as opposed to other dosing schedules of weekly or every 3 weeks). I use the markers now as biofeedback to determine the dosing of herceptin, but I also do other things, and what I do is NOT PROTOCOL. I am very lucky to be in position to do my own research, manage my own case in conjunction with an oncologist who is fairly open to my off-beat ways, though not always happy about the decisions I make. Still, she knows my excellent health and track record and always gives me what I really need.

In general what I have charted is that even when the CA 27/29 numbers are in what is considered "NORMAL" range...less than 38, or so, depending on the exact assay, the serum her-2 may be MUCH higher. Since the CA 27/29 is downstream of the serum her-2, often the serum her-2 is much HIGHer and actually well outside the her-2 normal range, even though the CA 27/29 may not register that until weeks or months later. Again, it is only my experience and that of some brave folks I know who also testing it. There are other women on this site who use at least the CA 27/29 marker and have similar experiences with it to me. I am not sure many of you have been using the serum her-2, as it is less known, I guess.

I found it most helpful to use just enough herceptin to keep the numbers in the CA 27/29 between 5 and 10 which almost assures a Her-2 less than 12. Of course, CA 27/29's of 11 or greater are not instant death..smile...but at a certain point, they can get out of hand to where the ratio between the serum her-2 can be 3 to 3 1/2 times greater than the CA 27/29 number. For instance, I have experienced a CA 27/29 of only 60, but the serum her-2 had already jumped to a bit over 180...scary...mets usually accompany high increases of markers. In my case, before we could find a dosing that would work, I tried many, many dosing strategies. For the first several years I only needed 5 or 6 doses a year...to stay NED...highly irregular, I know, but I was also doing my own research and tryng many other things at the time. However, I refused to take herceptin regularly and over the years paid dearly for this getting both bouts of extensive liver mets on several occasions and one case of pelvic and one case of sternum mets before my onc INSISTED that I find some sort of schedule I could live with and STAY on it. We compromised at the 6 weeks, with the understanding that when the her-2 gets ahead of me...I go in for an extra dose at the 3-week point. So far, I have not had to do that for about a year and a half. Right now, I am testing oleic acid and other dietary measures and do find that there are definitely other things that can bring her-2 markers down, but it is at this point hit and miss. So far, Herceptin is the only sure bet.

Hope that clears things up. I am in the DC area and pretty much every body here has been using markers for years now. In fact, it was a doctor at the INOVA hospital in Fairfax, VA who I believe first invented the assay to test the CA 27/29. I have been sadly surprised to come on this website and find that people think I am from Mars when I mention using these simple bloodtests for so many years. I am even more surprised to learn that there are many oncologists out there denying access to the marker blood tests even today..what on earth for??? Even though you can not completely depend on them --if for nothing else, they are great for determining QUICKLY, if your treatment is going in the right direction. Obviously, if the numbers are increasing exponentially every week or so, you need to change your strategy. Conversely, if they are dropping so low you are having heart palpitations and other nasties..., well, ease back on the herceptin...trust me...the numbers will "happily" come back up and all too easily. That is why we must work hard to drill down to what is really causing the mRNA to overexpress anyway....and the answer may very well turn out to be something that none of us even considered... That is also why I worry, that as good as they are, the her-2 vaccines will eventually fail, because they are just targeting the her-2 receptors and not what is causing them to pop up on the cell in the first place. Still, if EVERY time and EVERY where they pop up where they shouldn't the vaccine can continuously target them, then, we are better off with the vac than weekly dosing of herceptin, I guess...sighh...I obviously have a love/hate relationship with Herceptin. I am grateful that it has helped me to live, but I hate being tied down to it. There has to be a better way. That is all I am saying.

As for the Pi3K, I am not terribly familar with the test, but apparently, folks who test positive for it MAY have forms of cancer less susceptible to Herceptin. Maybe some other folks with familiarity with Pi3K can pitch in or maybe you can improve your Pi3K status through diet or supplements that we have not reseached yet. Proteins and tumor markers are VERY "liquid" entities...they move, ebb, and flow, with a speed and pattern that we did not realize in the past. Oncs tend to think of them as almost "static" i.e., you have Pi3k or her-2 or whatever or you don't....ON or OFF...BLACK or WHITE....RED or GREEN...that has not been my experience. Activities at the cellular level have a complex economy and an ecology all their own...it truly is a microcosm of wonder, drilling down.

Hope this is helpful,
Gina

[sarahdalton]

thanks Gina and all of you, info is very helpful. Gina, I gather you've been on Herceptin on and off for many years, is that right? I agree it does tie one down but I believe strongly in it and only hope I'm not kicked off it because of the expense.

Lisa, In 1999 I had DCIS and when I asked the oncologist at City of Hope in LA about the HER2 and some other markers, she said "that doesn't apply because you've got DCIS not invasive cancer!" Well, I had radical surgery and then moved to France and in 2004 had a lump in that same breast, no one thought it was cancerous but....the lump was HER2 +++ and now outside the breast. so went on Taxol and Herceptin weekly for 6 months, then radiation and now still Herceptin every 3 weeks. I've been on herceptin for about 18 months and besides being anxious before the hospital day and being somewhat tired the following day, I haven't noticed any side effects. I'm 59 years old.
I'm skeptical about all tests because the mammo, sonograms, MRI, Petscan, blood tests, scans etc showed NO sign of cancer even when we all knew I had invasive cancer!!! only the biopsy showed it. it seems it's very small but wide spread. The lump itself was not cancerous but surrounded by cancerous cells. Not sure what my stage is now, the first time round it was 2. i'd call it undetermined!

I didn't know when I moved to France I'd need to use my French medical insurance but the medical treatment here has been great.

I'm curious what's known about HER1 and 3?

Also while we're all on Herceptin, is there anything we can do to help our hearts or that we should avoid doing?

I appreciate this site very much particularly since I'm out of the country.

Many Thanks and good luck to all of you

regards
Sarah

[Gina]

Chere Sarah,

Bien sur vous parlez le francais? Non?? J'ai habitee a Strasbourg il y a beaucoup d'annees (84-85) J'ai estudie la langue, l'art et l'histoire pour 13 mois. J'ai beaucoup oubliee le francais aussi, je crois...:-). Merci beaucoup pour lire mes "posts" et pour votre "e-mail". Bonne chance a vous, Gina