Any Stage IV deciding to go off Herceptin?

mamacze · 10-06-2008, 07:06 AM

Hi Girls!
My oncologist wanted me to ask ... all of you who are Stage IV and NED for several years.... what are your treatment protocols? I was diagnosed in March 2004 with mets to the liver and lungs and have been on Herceptin since. The tumors in my liver and lungs responded right away to the Herceptin (and navelbene at first) and I have been NED since. Have any of you gone on a drug holiday? How many of you are using the Bayer serum test? If you are, did you have a baseline done? How often are you being scanned. Thank you all for your comments. Love Kim from CT

Vi Schorpp · 10-06-2008, 07:17 AM

it's great to "see" you back! I've missed your posts, and it sounds like things are well. Andrea Barnett Budin comes to mind, you might want to research some of her latest posts...Andi will probably check in, so I'm sure I'm jumping the gun.

pattyz · 10-06-2008, 07:48 AM

Kim,
At mets dx I went on Navelbine/Herceptin for several months. Follow-up scans showed NED in body. I was offered H alone and did that for ? maybe 2/3 mos.

Since my mets have been exlusively in my brain ever since then, I have not been on Herceptin by choice for the past near 6 yrs. I remain NED in body.

However, I have also been on Xeloda/ Temodar for 3 yrs for my brain mets. Don't know if that's made any difference to body, nor how to ever tell.

We added Tykerb last fall, but I had slight brain met progression until we upped my X/T chemo dosage/ went 7on/7off. "Stable" for now once again.

I decided to stop the Herceptin as it was not thought to cross the bbb and would not help the brain mets that were the priority issue.

pattyz

Sheila · 10-06-2008, 08:11 AM

Kim
Great to see your post....I am not NED, thus I continue on Herceptin with Taxol right now...seems every time I achieve stable or NED, I take a chemo holiday (never from Herceptin) and the big "C" rears its ugly head again.... so back on chemo with the Herceptin...this has been for the last 3 years....5 straight on Herceptin.

Mary Jo · 10-06-2008, 08:56 AM

Hi Kim,

I can't help with your question but did want to say "hi" and to say that it's SO good to "see" you again.

So glad you continue to do well and know you will find the answers you are looking for here.

Love and Peace,

Mary Jo

Joe · 10-06-2008, 09:17 AM

Kim,

I amswered your PM. Feel free to call Christine anytime this afternoon...your time.

Regards
Joe

Kim in CA · 10-06-2008, 10:18 AM

Hi Kim,

Great to hear from you! I have thought about going off Herceptin many times, but kind of hate to mess with the good thing I've got going! I am toying with the idea of taking a break when I reach the 5 yr mark of being NED. We will see how I feel about it then as that is still 2 years away.

Kim in Ca

PS. My onc will go along with pretty much whatever I decide at this point.

Sherryg683 · 10-06-2008, 03:20 PM

I have been on Herceptin ever since my diagnosis almost 3 years ago. I guess I will be on it forever. My Oncologist has mentioned that it's not proven that it's beneficial this far out but seeing the women on this board that are stage IV and still NED, it seemed like they were all on Herceptin indefinately, so mines fine with doing it, if I am. I hope to one day be 10 years out and consider getting off it, right now I'm just not there yet..sherryg683

Sherryg683 · 10-06-2008, 03:21 PM

Oh yea, I now have scans every 6 months. I was doing this every 3 months the first 2 years. ..sherryg683

mamacze · 10-06-2008, 03:50 PM

To all my "sisters" - thank you for your feedback; and for those who have yet to log on, please keep it coming!

It seems like I see a pattern developing. It looks like we are staying on Herceptin for 9 - 10 years if our cardio can take it; then going off. Scans seem to settle at every 6 months. I also noted that in this small number of long term Herceptin users, at least 2 of us participated in the U of W vaccination trial. (Me and Kim from CA....anyone else?!)

And Lani, you are kind to attach articles, but darn it, I couldn't get them to open up. I will try on my own to search relevant articles.

Keep it coming angels! Stay well and strong!
Love Kim from CT

StephN · 10-06-2008, 09:15 PM

Dear Kim -
Great to learn that you are still doing so well and here "taking advice." Way to go, Lady!

I still get my Herceptin each three weeks. I did take a short 3-month "Herceptin Holiday" beginning of 2007, but huge stresses came along that I had no control over and I did not like feeling that my body was to at its best as well as unprotected from a cancer flare-up. So cut it short at the 3 months.

Used the Bayer (now Siemens) HER2 serum test three times and had nearly the same result each time.
I asked to have it again recently and my onc replied that she did not feel it was necessary as my other markers are taken regularly and have not moved. She would order it if there was suspicion of progression, since I have a solid baseline.

Scans to check body are PET/CT every 6 months, only this next time I am just having a plain CT (my idea).

My MUGA did drop some this last time, but we feel it happened due to other causes than Herceptin. It will be checked at 6 months instead of a year.

jhandley · 10-07-2008, 02:47 AM

I suggested having a break to my onc. who was not particularly in favour of it due to no studies being done. I would like to have one if I continue NED for another year...but I would like to have the her 2 test to monitor..this is not available in Australia yet.
I am keen to hear of others responding to this thread!
Jackie

Marily · 10-08-2008, 11:52 PM

Hi,
I just wrote a note in the using Bayer her2 Alysa thread. when I started it was way at the beginning for its use my onc was always open to what I researched ... and I had no tumor markers at stage IV.
I just saw Dr Slamon and stopped using Herceptin about 8 weeks ago been on it for 7 1/2 years and started allgery reaction to it 1 year ago... I was also told I could stop Aromasin but I have not done this...
way too many changes too soon,..
(I also lost my onc who has been with me for 8 years so...now I wonder while Denny was so sure about stopping...and he looked So sure so truthful and smiling and made me feel so good about it....
Well I am now one of the group who did!!
we pray for the best and live to the fullest...
Hugs Marily

rcj11 · 10-09-2008, 09:21 AM

StephN
Kathleen did have screenings before discontinuing Herceptin, complete except no CTC test. I wasn't aware of that test at the time & her oncologist didn't use the test until I insisted on it last month.

Andrea Barnett Budin · 10-10-2008, 11:02 AM

I too wanted to add -- in June 2008 I had my every 6 mnth CT scans (chest/abd/pelv). STABLE.

I also had my annual mammography and sonogram. And my complete blood work, with tumor markers. Had blood work in September. All NORMAL.

At the end of July I stopped Herceptin. It has a long shelf life my onc says. Stays in the system for quite a while.

Am due for next blood work in November (usually ev 3 mnths). Due for next 6 mnth CT scans in December.

Due for full blood work in November.

mamacze · 10-10-2008, 06:22 PM

Rcj11 - I am heartsick that your wife recurred so quickly after going off; and you are right to advise caution. Thank you so much for weighing in. What is her CTC test result? Would you advise CTC screening, now after what you have experienced?
Marily and Andi, you are both so inspirational. Thank you for sharing your stories. marily, I wonder if Dr. Slamon has criteria for how long we need to be NED on Herceptin before he recommends we go off - do you know?
Thank you all again for your kind comments.
Love Kim from CT

ps Becky - a big hug back at you...I miss your company - and if i could just clone your fine thinking mind...!! i hear from Vicki occasionally as well; she is good at staying in touch!

kk1 · 10-15-2008, 06:47 AM

Hi Kim;

It's is so great to hear from you and that you are doing well. I just got back from a great trip to Tuscany and read you pm. This is a great thread you started and I'd like to add a few thoughts.

Steph's comment that you need a complete re-staging prior to ceasing Herceptin is right on target. A few years ago my Onc started the discussion that we should start thinking about maybe stopping H since I had been NED for several years. We started by being flexible on when I came for treatment. Basically come in every three weeks unless I had a conflict with travel or work. Often I was only coming in every 5-6 weeks, we kept scaning every 6 months and doing the CTC's every 6-8 weeks. All seemed to be going well after another year so we decided to stop the H completely--but before doing so he wanted to do a complete restaging will all the various scans, CT/PET top to bottom, brain MRI, bone scan, heart ect. Several of my other doc's thought all this testing was over kill but he said for both of our peace of mind he wanted to make sure we looked under all the rocks. Indeed even though both my CTC's and serum were low they found a small regrowth of what we believe was the original lesion in my liver so I never went off. I think it must have been growing very slowly and finally got large enough to just barely show up on the PET/CT scans. I got back to NED again with a liver resection and continued H and and AI only. The decision to not do any "nasty" chemo for this second reoccurence was based on the fact that the CTC's we low so we hoped that it was still localized. This NED lasted for another couple of years when the darn thing grew again in my liver with low CTC and serum. We added Tykerb/Xeloda to the H and I quickly regained NED. I doubt I will ever stop H, while I do get reoccurences I think the H is slowing it down and 6 months scan lets us know when/if we need to take out a bat and slap it down, while the CTC's tells us how hard we need to swing and how big of a bat. Kind of like a whack mole game.

With the current state of knowledge I don't think anyone can say with any certainly if you should or shouldn't go off. But for me my gut feeling from reading this board and my own experience is I would need 8-10 years of continous NED before I would consider stoping.

take care enjoy the fall leaves

rcj11 · 10-16-2008, 12:15 PM

From RCJ11,

The CTC test was taken 1 week after she began weekly Herceptin & Abraxane infusions. The test showed NO ctc's. She will be given another test 4 weeks after beginning treatment & I will report results.

Can anyone explain this CTC test result so quickly after beginning new treatment when PET scan 1 week earlier showed significant progression? Is the test unreliable or unable to pick-up certain kinds of circulating cells? Please reply with any experiences having similar results or possible explanations.

Thanks

Jackie07 · 10-16-2008, 05:24 PM

Found this off the <Georgetownuniversity.org> website:

September 11, 2008

Test Can Help Patient Determine Treatment Changes Earlier

A simple blood test could tell women with advanced breast cancer whether or not their treatments are working earlier than current methods. With the goal of tailoring cancer treatment for each individual, Minetta Liu, MD, researcher at Lombardi Comprehensive Cancer Center and breast oncologist at Georgetown University Hospital, is studying this test with the hope that it will help doctors more reliably assess treatment efficacy for patients with metastatic breast cancer.

“It can take several weeks and sometimes months to determine if a particular cancer treatment is working because it can take that long to observe any significant radiographic changes in tumor size or appearance,” said Dr. Liu. “With this new blood test, we have a tool that might allow us to determine much sooner if a therapy is ineffective so that we can change therapy earlier and potentially make more significant improvements in survival.”

One of Dr. Liu’s patients, fifty-year-old Anne Crupi of Maryland, was diagnosed with stage-four breast cancer in October 2005. Anne received chemotherapy and radiation and then underwent various scans to determine if her treatments were working. In addition, as a part of Dr. Liu’s study, Anne has a tube of blood drawn every month to see if there are cancer cells circulating in her blood stream. “I just think that if I can learn earlier that my chemo isn’t working, if it stops working, then I can switch treatments without having to wait too long. I thought if it would help me or someone else, I would be happy to do it. ”

Using the FDA-approved CellSearch™ technology, Dr. Liu and colleagues at Georgetown University Hospital measured the number of circulating tumor cells (CTC) in blood collected from women with metastatic breast cancer. The number of CTCs was correlated with disease response or progression as determined by standard radiology studies.

Based on previous research, a CTC count of five was used as the threshold. Dr. Liu and her colleagues observed a big difference between patients with CTC levels of 5 and above compared to those below 5. Seventy-one percent of patients who had a CTC count greater than or equal to five had disease progression, compared to only 32 percent of patients with a CTC count of less than five.

“A CTC count of five or greater at the time of restaging was associated with a 5.2 fold increase in a patient’s chance of having disease progression compared to CTC counts of less than five,” explained Dr. Liu.

“So far the good news is that my number has always been zero or one,” said Anne Crupi. “And it’s so easy. All they do is take a small tube of blood.”

Additional data suggest that the CTC assay is a more reliable means of assessing treatment response than other traditional serum based tumor markers currently in use. Currently, Dr. Liu serves at the national principal investigator of a clinical study that will evaluate the CTC results within the framework of a randomized clinical trial – eliminating possible variability caused by treatments administered.

“We have many treatment options for advanced breast cancer. The key is to find the most effective therapy for each patient. It shouldn’t take months to figure that out,” Dr. Liu concluded.

Media Contact: Marianne Worley
202-444-4659
mw32@georgetown.edu
Patient Contact: 202-342-2400

Val Pfeiffer · 10-16-2008, 06:26 PM

hi Kim--
It was great to see your post, and I'm glad you're well. As you know I was stage 3B, not stage 4, but I stayed on Herceptin alone for about 16-18 months after my initial treatments, and then chose to have quarterly Herceptin thereafter. I continued that until June, which was about another 2 years. I decided to quit that because I was afraid I might stop responding to Herceptin, and if I progress to Stage 4 I will need it again in the future. Different situation, but I wanted to share, and it was an excuse to say hello!

It stinks that I haven't had time to keep up with reading many posts on this site, but I can barely keep up at work and with school, so I don't have much time!

Take care!!
Val