panicked with Her2 serum marker rise

[Julie2]

I am on Navlebine and Herceptin since 2 months for recurrence to mediastinal(chest) lymphnodes and nodules in lung. The Her2 serum has been decreasing since then from 21.4 to 11.5 and 8.8 taken every three weeks. I had CT scan of chest a month ago, which showed everything disappeared but a 4mm nodule in lung(This is just after 3 weeks of N+H).
But the recent Her2serum shows it again increased to 11.5. I am really worried for a drastic reversal. Her2 serum was very accurate in finding out my recurrence. What should I do now? The original plan was after two more weeks of N+H do a PET and if everything is good discontinue chemo and just continue Herceptin. Please help me. What should I do? I am so worried.

Thanks,
Julie

[KRISS]

I know nothing about what you are dealing with, but is there anyway that the results could be false? When do they do them again? Hopefully someone here will be able to help you out some. But until then take a deep breath. We are all here with you and will add you to our list of prayers.

[Gina]

Hi, Julie,

Moderate fluctuations in the serum her-2 are to be expected. I would not panic yet...but I would watch the marker carefully to see if it goes on what I call "a run" which means heading up steadily like 11, 22, 44, 88, and as you have already experienced, even a rise just over 22 can be devasting to your health....many of us have experienced this same phenomenon.

Also, keep in mind that everything depends on the relationship to when you had the marker pulled and when you had your most recent dose of herceptin.

That is why I always recommend that folks get the serum her-2 (and all other markers and blood work) drawn just minutes BEFORE your regularly scheduled dose of herceptin. I have been "lucky" (yeah right...hee hee) to be able to play around with this marker since 2002 and here is what I have noticed in me. If the marker is pulled one week after my regular every 3 week herceptin dose, my number is very low...if it is pulled two weeks after my regular herceptin dose, the number is moderately high, if pulled at three weeks, just minutes before my next dose, it will be at its peak. Therefore, after years of testing this out, I now just have the marker pulled just before my next dose because that is the highest point of the trough, I believe they call it, and that way, I can compare apples to apples every time. If over time, I see the marker creeping up or if it goes on a run, then I know I am in trouble and have to take immediate action.

In your case, you could have gotten a really low read a short time after herceptin and a slightly higher read the second time if the test were taken a bit longer time after herceptin. Oncologists, overall, do not understand much about the serum her-2 marker and often don't realize how crucial it is to pull it on a regular schedule. Generally what happens is they pull it only when you beg them to or when you see them during an office visit. You need to do the serial testing and you need to do it on schedule...that said, though, better to get it any way you can than not to be able to get it at all. The numbers can later always be matched to where you were in your herceptin cycle by someone who knows what they mean...

If you think you might have been in two different places in your herceptin cycle when the numbers were taken, I would advise you to keep watching the number carefully, but try to have the serum her-2 marker taken at the same time in your herceptin cycle, EVERY TIME, otherwise, it is really hard to interpret the data.

Good luck,
Gina

[Lani]

they could have not kept the tubes at the right temperature, not processed it right, etc

As I understand it they do not recommend relying on any one result--rather relying on a trend(which means at least two studies which showed a pattern)

Since serum her2 best reflects your status when measured just before you get herceptin, I guess you will have to wait --since it takes about a week often to get the result, hopefully that is less than 2 weeks away!

[Julie2]

Hi Gina and Lani,

I always take my Her2 serum test just before going for Herceptin infusion and I am really worried about the upward trend. Do you know what other factors can influence the Her2 serum test? My liver enzyms are elevated(both AST and ALT) while on chemo. My doctor is not concerned about this and she says they can rise while on chemo. Can liverenzyms affect Her2 serum?

Thanks,
Julie

[Gina]

Hi, Julie,

I have tried to respond twice to you here, but the system keeps throwing me out for some reason. Anyhow, first of all I am so proud that you are getting the markers taken properly, just before your herceptin infusion. This is the way to go.

Second, I find that it is not the liver enzymes affecting the serum her-2, but unfortunately, the other way around. In me, the liver enzymes AND the her-2 marker AND the CA 27/29 all tend to go up at the same time, which, again, for me, has always meant something was going on somewhere, often the liver or the bililary tree. Also, at times, my Alk Phos and bilirubin had risen along with these as well. You might compare your last Alk phos to the most recent and see if it is higher than last time.

Third, I think most folks think of Navelbine as a "light" chemo, but its job is still to take out your WBC's and it is very hard on the immune system as it takes out both the first line immune system and the back-up one.

While on Navelbine, you may have contracted some other low level bug that is weighing you down and causing the numbers to rise, but fortunately, this rise is so slight and so early that again, in my case, I have been able to make the number drop just with swift NUTRITIONAL, supplemental intervention. I would be sure I was getting enough Vitamin A&D (in your case, temporarily increasing A to 50,000 IU and D to 1000 would not be over kill, just drop the A back down after a couple of weeks), plus up the zinc (either with the Desitin on the feet or with your diet...oysters and lamb are rich in zinc, as is peanut butter)...be sure you are getting PLENTY of plain magnesium and ABSOLUTELY NO supplemental calcium, although normal calcium from food sources is fine. Be sure you are balancing your omega 3's and if you are not already taking it,you might add olive leaf to your regimen as it is anti-viral; anti-bacterial, and anti-fungal, just in case you have picked up something.

Also, be sure you are not stressing yourself out too much as after your initial good news you may have gone back to work or started working more or had some personal crisis that also drags you down. Get plenty of rest and drink lots of good fluids.

If it were me, I would discontinue the Navelbine immediately as you need to BUILD your IMMUNE SYSTEM BACK UP ASAP and ask for an extra loading or boosting dose of herceptin, but most oncs will be unwilling to do this...sigh...

Also, there is some evidence that WBC drugs like the one you mentioned you were taking in another post can make certain cancers worse while temporarily relieving symptoms of fatigue, etc. caused by lowered white Blood cells that were lowered by the navelbine...not the herceptin...sighh... You might want to examine the time relationship between when your numbers were going down to when you took the White cell booster and see if there is any correlation...if you even think it had something to do with the her-2 numbers increasing...do not take it again.

Remember, in many ways, her-2 mediated disease is much more like an infection than cancer...there are many things about it that oncs and even scientists just don't understand yet, so please be sure to guard your own immune system and let it help you beat back down the her-2 disease.

Keep up the good research--your excellent ability to record and report your data about the changes inside you will help MANY of us learn more about this dreadful illness. YOU ARE SO BRAVE and are providing an excellent role model for pro-active management of this illness for us all.

Godspeed,
Gina

[tousled1]

Julie,

The HER2 serum test has always been extremely reliable for me as it seems to be for you. I wouldn't be too concerned with the recent rise. I would suggest that you have the test repeated in about 2-4 weeks. It could be that you have a slight infection that can affect the results.