New here and going for round 2

yankeebikachic · 07-29-2008, 02:06 PM

Hello everyone! I'm glad I have found this website, I have learned so much more about HER2 cancer.
I was curious to know something. Yesterday I learned that my lymph aspirate came back positive for cancer. This will be my 2nd time fighting. I have a pet scan next week. My marker # was 25. How can I be recurring with a 'normal' # of 25??
Any thoughts? Anyone have a similar issue? I had just completed 1 year of Herceptin.
Thanks!
Beth

Becky · 07-29-2008, 03:00 PM

The tumor marker only works for about 2/3rds of those that recur. There could be signs in other blood tests like CEA or liver enzymes.

You should ask your onc about the Her2Serum test. You should search on this site and google it. It measures the Her2 in your blood (this can go up and down) and may be a better test for you personally.

yankeebikachic · 07-30-2008, 06:50 AM

Is the serum test new?? I thought there was no marker to test for the actual her2 level--has something changed and I just missed it??
You would think they would do that anyway, the heck with the marker test, why do it if it doesn't work for everyone?? Jees!
Thanks! Beth

Alice · 08-02-2008, 10:50 AM

Tumor markers are only a guide and may not be indicative on thier own. I was diagnosed stage 3 B and my markers were never out of the normal range even at the hight of tumor growth. I know this is scarry stuff and this is why they do all the other tests to have a complete as possible picture.

hutchibk · 08-05-2008, 11:40 PM

Hi Yankee= at least 50% of us have had similar stories to yours and are on recurrences... you have found the right place for support. And we are just tooling right along with very pro-active and creative doctors. You have lots of options and should have lots of hope that there are lots of treatment choices for you and your doc to consider.

hutchibk · 08-05-2008, 11:48 PM

Serum testing is still being sorted out for standards of testing, standards for reading and translating results, standards for determining implications of results, and implementation after results... there just isn't a standard yet. I believe it is currently used mostly and novelly in the metastatic setting, but due to lack of standards, it is just not ready for prime time. But it is very exciting!! I hope it makes it's way to mainstream soon.

Sheila · 08-14-2008, 11:51 AM

Beth
My Tumor markers have always been low,even during recurrence...like Becky said, they don't work for all of us./...you can read my profile to see my journey with lymph mets. Where are yours?

yankeebikachic · 08-14-2008, 01:42 PM

Mine are in my armpit and a one in the neck, same side. I just started avastin/abraxane yesterday and my doctor feels confident that we will be back in remission next year. I can't do radiation in my armpit but will likely start rad. to my neck since I haven't had rad. treatment there yet. My doc says the herceptin didn't do a darn thing for me so he isn't going to bother putting me back on that.
These pesky little cancer cells are such a pain in the butt!
Congrats to you for hanging in there! It is wonderful you are at the 6 year mark! Keep fighting!
Beth

yankeebikachic · 08-14-2008, 02:15 PM

I have read several of your posts, you are such an inspiration to me as you are to many others on this forum I am sure. What a journey you have had!
Are you a motorcycle rider, I'm assuming that is you and hubby in the picture?
Beth

hutchibk · 08-20-2008, 08:31 PM

Not motorcycles, we are a little too wimpy for that... We were riding Vespas in the French Riviera when that photo was taken.. LOL! Ciao baby.

Also, it might not be that Herceptin is not working for you, it might be that it needs something else to work with it for maximum efficacy. When I recurred, we started Herceptin with Taxol and Carboplatin. Then, when we got the all clear, we dropped the Taxol/Carbo and stayed on only Herceptin - I was on it for about 20 months total. Then when I recurred last year with brain mets, we switched to Tykerb/Xeloda, and it is working very well for me right now. But, if we see any new progression in the future, the plan is to add Herceptin back in WITH the Tykerb/Xeloda. They are learning more and more every day about all of the pathways that HER2 finds to escape and do it's dirty work, and the Tykerb/Herceptin combo is the first combo of targeted agents that the are really excited about in the race to cure HER2. They are feverishly working on a third targeted agent to add to the combo... because there is good research that shows that triple targeted agents might just be the key to closing all of the pathways for HER2 and it's friends, HER1, HER3 and HER4. (if they can dose it so that we can tolerate it).

Ask your doctor to keep Herceptin in the forefront of his mind as a potential for you to use again. From what I am learning, it is never out of the picture, as well as Tykerb... they might just be more efficient and synergystic with a boost of something else.

yankeebikachic · 08-21-2008, 10:20 AM

I have read about some of the recent studies of herceptin with taxol, etc. But unfortunately, my insurance company (like most) refuses to pay for any more herceptin since I was already on it. They will not pay for any chemo twice.
I am trying to twist my hubby's arm to get on his insurance at work. They can pick and choose whatever company they want for coverage as they employ so many people. Maybe that way I can get Herceptin again.
Well, if you had fun on the V's, imagine how much fun a motorcycle would be!
That is seriously a great picture, glad to hear you are still well and I appreciate your input!

Beth

hutchibk · 08-21-2008, 02:57 PM

I would suggest figuring out how to challenge the insurance company, as you are metastatic, and current research/trials are showing that Herceptin is valid in the metastatic setting and can be powerful time and again in different combinations... also - a technicality might be that Herceptin is NOT chemo! It is a targeted agent. Completely different from chemo.

Jackie07 · 08-22-2008, 11:21 AM

Beth,

How did you find the recurrence in the armpit?

I was in my doctor's office today and sort of 'forced' my oncologist to order an ultrasound for me because I've been feeling a tiny 'grain' next to my scar. But then the appointment clerk was having problem getting the appointment set up because the ultrasound people said it is not an area they could reach.

I then called them back (after I got home) and told them I would like a needle aspiration as was suggested by the doctor. He was a little bit emotional during my appointment because he felt threatened (unintentionally I mentioned about my traumatic experience with the insurance company one time when we had to threaten to sue to get a special contract done for my brain surgery.) He ordered some lab work and I will see him in 4 weeks.

But my weight has been dropping and I've been having some skin problems - all signs for cancer based on my previous cancer experience (2 brain tumor surgeries and 2 breast cancer surgeries.)

yankeebikachic · 08-22-2008, 11:32 AM

Jackie,
We have to be our own best advocates, don't we?
I had a scan in Febr. 08 that showed an area of possible scar tissue but all else looked ok. I remained on monthly visits since then as they wanted to make sure a lump did not appear. When one finally did in July I was ordered an immediate needle aspirate. The surgeon felt it was scar tissue, but as it turns out, it wasn't. All my markers and everything were ok and the re-scan showed it was in my nodes.
Don't back down, you have every right to ask for more tests. If you can feel something, have it aspirated so you know for sure. Mine didn't even hurt, it was done in less than a minute and I was on my way.
Best of luck, let us know how it works out!
Beth

Jackie07 · 08-22-2008, 12:07 PM

Did you mean 'PET' scan?

Just when will those surgeons wake up and admit that they missed the cancer during the surgery? My 'recurrence' was from the residue tumor because the surgeon did not cut much more than tha 1.2 cm shown on the scan that had been done more than almost a month before my first surgery. And it was almost 4 years, after they continued to label it as scar tissue, before my 2 cm + recurrence was found. Then they still wanted to prolong the surgery date...

I guess the 4 weeks (monthly) visit is the standard procedure. Thank you so much and I will keep y'al posted.

Sheila · 08-27-2008, 05:07 AM

Beth
I had great success with Avastin and Taxol combined with Herceptin for mets in my neck nodes....like Brenda said, i would fight to get back on herceptin since you recurred so quickly....I do believe the herceptin has been the magic bullet that contains my problem area to my neck nodes....they are very stubborn so don't get discouraged if they return again after treatment...I have been battling neck nodes non stop for 5 years!