Any Stage IV deciding to go off Herceptin?

[Becky]

Hi Kim

I just had to say hello. Oddly, I got an email from Vicki today and hadn't heard from her in quite awhile.

If I were you, I would make an appointment to see Eric Winer at Dana Farber (since it is not extraordinarily a long drive for you) and discuss with him what his opinion is about going off of Herceptin (or lengthening the time between infusions - a weaning off process perhaps). Dr. Winer is an expert in Her2 bc as well and may be able to give some good advice to you on this subject.

Big hug to you!

Love, Becky

[rcj11]

My wife, Kathleen, was NED for 6 years maintained on Herceptin only. 6 months after she ceased the Herceptin infusions her cancer returned with multiple mets. She was removed from Herceptin because of fear of heart damage. In hindsight we should not have made that decision. We can't prove that the herceptin was still effective when she stopped taking it, but why take the chance especially when new research indicates that long term use of Herceptin does not increase risk of heart damage.

For information on Kathleen's treatment since the cancer returned see thread under "Ixabepilone & Tykerb. While the result of her treatment with ixabepilone & tykerb was favorable at 1st, her cancer returned while taking only Tykerb as a maintenance drug. She is now back on Herceptin & Abraxane but only for the past 2 weeks ( weekly infusions) so too early to know the effects. Our prayer is that the Herceptin is still effective for her.

[StephN]

Hi again -
rcj11's post reminded me that I don't think I mentioned that just prior to taking my 3-month Herceptin Holiday I had a Pet/Ct, complete labs and the HER2 serum assay. I was so clean on the scan and rock steady normal on everything else that I decided to take the break.

I am now wondering if RCJ11's Kathleen had a total screening before getting off Herceptin. The fact that her cancer returned so quickly makes me ask.

[Marily]

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]

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]

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]

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!

[Marily]

Sorry, Dr. Slamon did not give me criteria for how long we need to be NED on Herceptin before he recommends we go off - He told me "Since pt has been on Herceptin since 01 with rtn- ok to stop. (may have developed antibodies to Herceptin.)"
He told me that since seeing him a year ago when he could not give me a definate answer..they have more data on it and he recommends stopping.I guess I was so ? relieved in what he said I did not ask him where to find that criteria. I will try to see if it is possible to see that.
hugs

ps does anyone understand sigpic??? M

[kk1]

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]

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]

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]

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

[rcj11]

I promised to report test results.
Monday Kathi's PET scan showed her to be NED. This follows 2 CTC tests that reported no circulating tumor cells. This is, of course, great news. Herceptin seems to still be working for her. Also, confirms accuracy of CTC test that we can use in the future to watch re-activation of disease. The plan is for at least 2, maybe 4, additional cycles of Abraxane with Herceptin. Then maintenance on Herceptin. At first, I will insist on monthly CTC tests. Later, the CTC test will be less frequent, probably quarterly or whenever symptoms arise. We will not again abandom Herceptin unless it ceases to be effective & the cancer returns.

I hope this is helpfull

rcj11

[Vic]

What a treat to hear from you, Kim, and I've been joining in more lately, too, as Becky mentioned. Funny how we all surface about the same time around and I'm glad for that!

I can't offer any suggestions, but it sounds like you gleaned what you needed from all these great responses.

Miss you and glad you are doing fab,

XOXOXO,

Vicki

[Joan M]

Kim,

You're having great results with Herceptin, and I can understand how it's a hard decision to go off of it. Being stage IV since spring 2007 with one met to the lung that was cleared up via a wedge resection and then subsequently with radiofrequency ablation in 2008 when it recurred, and with recent brain surgery for a single met, I'll be on the drug for a while as long as my heart holds out.

It's the only drug I've been taking since my cancer advanced because with the local treatments for the lung and brain I then became NED. Right now I'm trying to decide whether to add Xeloda and/or Tykerb, but will have my brain radiation first in a few weeks.

I'm curious about the CTC test, and plan to ask my oncologist about getting the test.

Joan

[Marily]

I met my new Oncologist last week, and although he did not know of anyone doing the CTC he said I could have it done ,... so our lab looked it up and ordered the kit (a purple and pink topped vial.)
I am now 4 months off Herceptin
We Just did the CT/Pet scan the CTC and the ALYSA. Last week.
I received my results today.....
CT/PET clean, CTC 0%, AND ALYSA down from 9.5 to 7. So I am still Dancing with NED! We will continue with both blood tests every 6 weeks and every 3 months CT/PET. He also felt I should not go off Aromasin.. My Dr is from Canada and said there they use these drugs more to control cancer and here we use more chemo... So he feels it is best I stay on the Aromasin. So far all is well and I like my new Onc. He listens, and he is willing to try new things. (since I go in prepared with all sorts of information) we had a very good talk about where to go from here and we seem to be on the same wave length.. THANK YOU GOD! Hugs and I will keep you posted

[rcj11]

God makes the ultimate decisions, but we make most of the daily decision. Keep on top of your treatment. Drs are not all knowing & need your guidance.

Kathi & I are really happy for you. Keep in touch.
rcj11