Any Stage IV deciding to go off Herceptin?

[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