Her2 Serum ?
 

Hello Everyone,

Had my six week doctor visit last Tues. since being off Herceptin. Had labs drawn at 5 weeks, so we could discuss results. My CA15-3 was still in normal range (20.4) but Her2 serum result wasn't back yet. Finally got her2 serum results today, and they were slightly above normal at 15.3.

At my dr. visit on Tues, we agreed to retest both CA 15-3 and her2 Serum again in 6 weeks. Now that I know my Her2 Serum is elevated (albeit only slightly) I don't want to wait six weeks to retest. When I asked the nurse to ask the Dr. if we could move my labs up 2 weeks, she called me back to say he wants to keep it at 6 weeks.

My gut is telling me that if the cancer cells are starting to become active because I've stopped Herceptin, that it's better to find out sooner than later, so I can restart the Herceptin. That way we could possibly nip it in the bud without having to add chemo.

I'm awaiting a call back from my Dr. because I don't understand his reasoning on this one.

Do any of you know if there are many false positives with the Her2 test? Your thoughts or opinions would be appreciated.

Thanks,
Kim

Re: Her2 Serum ?
 

Hi Kim,

My normal Her2serum reading when I was in remission was 8. After developing mets it is ranging from 10 to 20. The only time I had a false positive (increased by 3 points) was when I took serum test during the menstrual period.

Julie

Re: Her2 Serum ?
 

Hi Kim
Have no words of wisdom to add as we don't get these tests here in England and totally rely on scans!
Hadn't realised you stopped herceptin but it seems reasonable to get a repeat done before any bc gets chance to grow into a problem.
How have you felt since stopping herceptin?
I still think we don't yet know how long NED on herceptin is long enough?
Sending very best wishes for this blip to be nothing. you are flying the flag for all of us.

Ellie

Re: Her2 Serum ?
 

Hi Kim,
I can't answer your question on the Her2 test but I know if this was happening to me I would feel the same way you do. After being NED so long I would not want to wait the 6 wks either. I hope your onc gets back to you right away to put your mind at ease. Waiting is so difficult. Chances are all is OK...but I would want to retest now too. Let us know how it goes?

Chelee

Re: Her2 Serum ?
 

Thanks for your replies ladies. Can you believe, I have still not heard back from my Dr. I just called again and left another message. I think my Dr. will eventually go along with my wishes, but I hate it that it's so hard to get to talk with him unless I have an appt. I know that they are short staffed, and he has other patients who are very sick, but I just get so frustrated with this.

I know I'm just getting myself all worked up, but being in this uncharted territory is really nerve wracking sometimes. I just keep remembering how fast my cancer grew when I had my first recurrence in 2001, and don't want to make the same mistakes I made back then.

Thanks for listening, and I'll keep ya posted.

Kim

Re: Her2 Serum ?
 

Dear Kim -
I think 6 weeks is a time frame the docs must have learned in med school because I have heard that before. Maybe that is the "normal" time for changes to show, but I am with you in that we are talking aggressive HER2 bc.

So, I feel your nerves chattering. Are you doing anything in the alternative treatment realm? Taking curcumin or any other things that have shown effectiveness against HER2?

So far my HER2 serum has stayed in the 6 to 8 range over the years I have had that lab.

Take comfort in a nice long ride with your horse.

Re: Her2 Serum ?
 

Kim,

Hopefully the slight elevation is just a reaction to your stopping Herceptin and nothing more than that.

Joan

Re: Her2 Serum ?
 

Well, I finally had a message from one of the advice nurses, saying that we could re do the Her2 serum in 3-4 weeks. I know they think I'm over reacting, but "tough noogies".

I made a promise to myself that I'd keep a close watch on my markers, since they are the only tests we are using at this time. I try not to do scans anymore, so as not to add to my cumulative radiation exposure.

Steph, I've tried taking the curcumin, but unfortunately it does not agree with me (major stomach/intestinal upset)but I do try to eat more foods with anti cancer properties, and of course try to stay active.

I'll let you know my results when I get them. Thank you all for your feedback.

Kim

Re: Her2 Serum ?
 

I'm with you, don't give them a chance to say no! It is your choice, get the new blood work whenever you feel it is right. I would feel the same way until a little more time has passed. Stay strong and we are rooting for you!

Re: Her2 Serum ?
 

Hi Kim,
I just got back from vacation with the kids (my LAST trip to Disney World!) and I am glad I stumbled on this post. I stopped Herceptin last month4 years. Before I stopped, I got a 2nd from an oncologist at Sloan. She said in her experience; her ladies who respond to Herceptin then take a holiday; typically recur (and need to go back on Herceptin) within 8 weeks to 4 years. My oncologist decided to monitor me with the CellSearch Circulating Tumor Cell Test. I am expecting results from my first test this week. I am wondering if it would be helpful for you to have this as a back up test ... it would be interesting to see if it too shows an elevation. Keep us posted. Fingers and Toes are crossed for you!
Love Kim from CT

Re: Her2 Serum ?
 

Hello Everyone,

My Oncologist called me tonight to report that my Her2 Serum test that I just had redone on Weds. was up again, to 16.9. He asked me what I wanted to do. Wait, and retest in another month, or go back on Herceptin. I must admit I'm not willing to gamble on this one. It's back on the Herceptin for me.

We don't think doing scans would show anything at this time. My CA15-3 four weeks ago was still normal, and that has always been a pretty good indicator for me. I just have a feeling that the Her2 Serum may be a little more sensitive, and I don't want to give those cancer cells a chance to really get going, if indeed they are getting active.

I mean it's just too much of a coincidence that my Her2 Serum has always been in the normal range since we started testing 5 yrs ago, and within 5 weeks of stopping Herceptin it starts climbing.

I feel so incredibly lucky to have had such a long run with NED, and I'm just not much of a gambler, even though the idea of stopping Herceptin was so alluring.

On a very sad note, my sister was just diagnosed with a malignant brain tumor. She has a glioblastoma, and has one heck of a fight ahead of her.

I HATE CANCER!!

Re: Her2 Serum ?
 

Hi Kim, I'm glad your doc included you in this decision. I think this is the right course of action for you. You wouldn't feel safe any other way. May you get a lot more mileage out of Vit H. I know several people who have been dancing with NED for over a decade.

I am so sorry about your sister. That is a scary diagnosis. Hope she pulls through ok.

Hugs

Jacqueline

Re: Her2 Serum ?
 

Hi Kim, I too am a her2+++ and was on Herceptin for over 4 years. My onc decided almost 4 years ago to stop the Herceptin. He and Dr Slamon felt that it was a good time to stop. I was very afraid and begged to stay on it but it was stopped. I have been so fortunate & blessed to be coming up on 8 years this Oct 2011. I love Herceptin, it saved my life. I sometimes wish I could just have a round of it as a precaution, however my onc says that is not done. I wish you the very best and I agree with you on starting Herceptin asap. It works! Mary L

Re: Her2 Serum ?
 

Kim,

I'm sorry about your sister's diagnosis of GBM. Please contact ABTA (American Brain Tumor Association http://www.abta.org/) and NBTS (National Brain Tumor Society http://www.braintumor.org/patients-f...-brain-tumors/) for current research info and support.

GBM is extremely difficult to treat. But there are quite a few long-term survivors out there. NBTS is currently providing funding on 'translational' research.

Your family might fit the profile of HNPCC or other familial cancer cluster. Please request for genetic testing for both you and your sister, and possibly other family members.

Sending both of you good vibes.

Re: Her2 Serum ?
 

Hi Kim,
I think that is a very wise decision to go back on Herceptin. Like you, here is no way I could risk it. If you were to wait again to retest it might be hard to close that barn door and be NED again. I'm glad you have decided to stay on the NED horse again...you will rest easy now. :)

What was your normal range for the Her2 serum test before stopping Herceptin? As to your sister I am so sorry to hear the news. My heart just goes out to you both. She does have a fight ahead of her...but as you know from 1st hand experience...there are those that make it through these things. Jackie is very knowledable in this area and she knows of surviviors. I'll keep her in my thoughts and prayers.

Chelee