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.

Andrea Barnett Budin · 10-06-2008, 10:34 AM

Please read my signature and cut and paste the link below for my story... AT THE BOTTOM OF THIS POST... BELOW THE BUTTERFLY

10 yrs of Herceptin. 10 yrs of remission.

My oncologist and my husband and I have decided to proceed, untethered yet ever vigilant. More jubilant than fearful, though it is surely a bit scary out here in uncharted waters.

But, guess I am used to being in the guinea pig group. Despite all odds and all the poor prognoses, I am called the miracle patient.

Onc was concerned about my building up a resistance to H. Believes the cancer cells that were in my body 10 yrs ago are gone. I can always return to H, if God forbid a trillion gezillion times an occasion arose. I have not burned any bridges behind me. And the H would likely work even better, says my Onc.

Plus I explain the toll te every 3 wk infusions were taking on me psychologically, without even realizing it.

I know Dennis Slamon has told a few women in similar circumstance, You're far enough out now. Don't worry. Go live your life.

I know 3 women who have chosen this route, much like me.

ANYONE ELSE??? Pray tell!!

Thoughts... Info... I surely understand the reservations, but...

I welcome your questions and any feedback!

With love,

http://her2support.org/vbulletin/showthread.php?t=35423

10-06-2008, 10:35 AM

Hi Kim,

Congratulations on such a long time of NED! I was diagnosed at stage IV right off the bat. After 3 months of TCH, my scans showed NED. (That was in June 2007.) I continued with 3 more months of TCH, and I have been on Herceptin and Femara alone (with Zometa) ever since. I have only been NED on Herceptin alone for a bit over a year, so I have not yet had to face your wonderful dilemma. Although I am not absolutely sure, my impression is that my oncologist would continue the Herceptin as long as it was working and one's heart was doing OK. I believe that she has patients who have been on Herceptin alone for 4-6 years. You might have your oncologist contact her to get her opinion. She is an expert on Her2 positive disease. Her name is Dr. Hope Rugo, and she is at UCSF in San Francisco. The general number there is (415) 353-7070. Alternatively, Drs. Slamon, the one who discovered Herceptin, might be another good person to contact, as would Dr. Pegram.

I believe that both Christine and Andrea recently stopped their Herceptin treatments, but I think each of them were around 8 years out or so.

Good luck! I am encouraged by your success.

Best regards,

Jill

fullofbeans · 10-06-2008, 12:36 PM

1)
I have been NED for 1.8 year and feel that it is still early days to stop H now..will continue.

2)
I get a CT scan every 4 months

but not sure what I should do and would really be please is the other stage 4 NED answered that question! please could you tell us what is your own scanning schedule? Thanks for an interesting question

Andrea Barnett Budin · 10-06-2008, 12:54 PM

You can note from my signature that I did 9 mnths of Taxotere when my bc recurred throughout my liver. We added the Herceptin after the first set of scans (chest/abd/pelv -- w/ and w/o contrast) 8 wks from beginning chemo. Wanted to be sure the T was working. Some shrinkage was noted in ea tumor.

I remained on H till this past July. 10 yrs.

I started w/ev 8 wk scans. Then eventually moved to ev 3 mnths and then ev 4, w/the caveat that I should not go any longer between scans. I am NOW at ev 6 mnths.

I get full blood workup w/lipid profile, tumor markers, CBC and everything you can think of ev 3 mnths. I collect ev report and ev test result. I keep bld w/bld, scans w/scans, mammos w/mammos, etc.

I go for ev 6 mnth transvaginal pelv sono -- to be told that my ovaries look beautiful.

I was going ev 6 mnth for ECHO cardiograms and eventually graduated to annually.

I will continue the ECHOs b/c I developed a small peri-cardial effusion (fluid around my heart w/Taxotere). To keep an eye on it.

I had also developed a pleural effusion (around my lungs) w/Taxotere but that slowly dissipated after a long while being off Taxotere.

I still have my port (of necessity) since no veins in my good arm work. Not that any in my other arm ever worked to begin with...

I have been running on fumes, believing H kept mets at bay. I remained NED from May '99. Now, if you read my COME MEET THE NEW ME and other related posts, I have -- after 10 yrs -- decided to let go of my blankie.

5 yrs ago going off H was suggested and both my husband and I felt that we shouldn't go around fixing what wasn't broken. If we could withstand the H financially (insurance continued to cover the costs), psychologically (which I felt I was doing -- remaining on longterm chemotherapy for the rest of my life) and physically (getting few side effects other than chronic fatigue, no small matter but relatively speaking not the worst thing -- and -- getting good ECHOs) -- we felt I should stick w/the plan.

H, after all, is the *easy* chemo. It could have been so much worse. But now I am ready to move on, at my favorite oncologist's urging.

Please read my posts re this topic. Much to talk and think about...

I send you energy full of wellness...

Lani · 10-06-2008, 02:41 PM

I remember having posted a couple of articles on the advantage of continuing herceptin even with brain mets

I did a quick search and came up with
http://theoncologist.alphamedpress.o...ull/12/12/1467

http://her2support.org/vbulletin/showthread.php
t=34972&highlight=brain+mets+continuing+herceptin

I am not reminding you of these papers to try to influence your treatment--just providing them for your armamentarium on which to base decisions, current or future

PS this was a very very brief search using her2's search engine--I may have posted more

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

Joy · 10-07-2008, 10:02 AM

Gosh it was great to hear from you and under such good circumstances. I am so excited that your helath seems so good. I don't have a lot of advice for you regarding herceptin. I just wanted to say Hi and Yay! Oh, and could you refresh me on which vaccine trial you participated in and do you credit that with your success? Only if you have time. My best wishes for continued goodness!

mamacze · 10-07-2008, 01:08 PM

Hey Joy!
Hi and Yay back at you!
Since I started my "poll" it has felt like I was coming back home...it warms my heart to see you, and Vi...Pattyz, Mary Jo, Kim in CA, Lani, StephN....all doing well and all getting on with your lives.
Joy, I don't know what to credit for my good health...some say it is an answer to prayer and yet we all know some very spiritual and devout people who have died. Some say it is my diet. Some feel it is the vaccine from U of W. (as an aside, Dr. Disis did say I was a responder). And of course there is Herceptin which I am sure is the primary reason I seem to hang in there. I just truly don't know; all I do know is that I am just so grateful to have these healthy years while I raise my 4 kids. I admit to feeling a bit of "survivor's guilt"
I am anguished to see that yours has progressed to your liver. Where is the justice?? Is your current cocktail holding it stable?
Stay well angel; your joy is inspirational.
Love Kim from Ct

Barbara H. · 10-07-2008, 01:21 PM

It's great to read your posts again, Kim. It's also encouraging to hear that more of us are thinking about taking a break from Herceptin. I'm not there yet, but I'm on a trial (Herceptin MCC- DM1) that seems to be working for me. I hope some day to have the opportunity to take a break.

Do not feel guilty. We are so pleased to hear your good news.

Best wishes,
Barbara H.