On Herceptin for more than a year - How and why?

[Nora B.]

New to this site - it's been wonderful to discover the wealth of info and support here. I've been browsing around and noticed alot of you seem to still be on Herceptin after a year. I'm wondering why and how - did you have to talk your onc into it, is it just if you are Stage IV, etc. My onc, who's very conservative and by the book, took me off after a year saying there was no evidence any longer than a year would help. I'm Stage III, finished with a year of herceptin in April and am missing my security blanket!!

[jmihay]

Herceptin more than one year

Hi Nora,
I just this week wrote and asked for people who had been on for more than 5 years and got 4 answers. I have been using it for 6 years. You don't say if this is for a new cancer or metastatic. Mine is metastatic and it was not until last June that I got a PET/CAT scan that was NED. Then my onc.gave me the choice to go on or not. I opted to continue as my heart tests have been fine these 6 years and I do not believe Herceptin CAUSES brain tumors, I think the cancer does, and the Herceptin cannot stop it because it cannot cross the brain barrier. This is only my opinion, I have not read it anywhere. My tumor blood tests have never shown an abnormal number even when the cancer was active so I cannot quit and rely on them. I used to play a lot of tennis where I learned not to change a winning strategy.

If your cancer is new, I have no advice as it hadn't been developed back when mine was new (1986). It was almost 15 years before mine metastasized and I am grateful for that as by then Herceptin was available.

Love and support,
Joan

[Lolly]

Hi Nora, I was on Herceptin for over six years for Stage IV, and just last month stopped it and moved on to Tykerb. Most oncologists won't continue Herceptin indefinitely in earlier stage disease because it's an unknown.
Perhaps you should consider looking into clinical trials? The TEACH trial is recruiting early stage HER2+'s to test Tykerb against a placebo, to determine if it will prevent recurrence.

<3 Lolly

[jessi]

I have a related question. My oncologist wants me on herceptin forever; or as long as responding no problems; you ladies obviously know the lingo. I was wondering how many other people are in this situation (stage IV IBC, bone and liver mets; currently NED). I'm feeling a bit whimpy lately 'cause I'm whining about herceptin side effects which are nothing compared to chemo. Does it get better over time? Glad to hear you ladies are doing so well on it for long term! I have to say I had never heard the concern with herceptin causing brain mets. I did meet a women who was stage II, and after she stopped herceptin she developed brain mets and went back on herceptin along with chemo to treat the brain mets. Also wondering what are the differences between herceptin and tykerb?
hugs from a cancer newby - almost 1 year survivor! Look forward to the day I can say 5/10/15 years and so on!
jessi

[Mary Anne in TX]

Hi Nora!

I'm stage 2, no known mets, tumor markers finally going down - at 33 last time, 1 year and counting on herceptin. Not sure how long he will keep me on herceptin and not sure who will pay for it, but it feels right to stay on it for me. My immune system is still getting stronger, I believe. I had that bad e coli virus & shingles this past year which, I assume, indicates that my immune system wasn't strong enough to fight yet. I'm very glad to have the extra time on herceptin. I know that my body is different. I've really begun to lose the upper body fat that I had gained the last 7 - 10 years in my breasts. It may be just weird, but I think that gaining so much weight in my breast and my hair starting to get curly those years ago was a sign something was happening in my genes. My mom's family has some crazy mutating genes!!! My brother died suddenly, my husband had a major heart attack, and my mom was diagnosed with PSP and we moved next door to help care for her for 3 1/2 years. I believe that the stress and my not dealing with it well, began the process. Who am I to know, but everything began to change in me at that time as I look back from this perspective. Anyway, I've gone from a size 5 Amoena to size 4 to almost to size 3 (I'm kinda inbetween - what a deal!) But this last month I began to feel like the "old" me - not all the energy, but the old me! I hope he'll keep me on herceptin for ages and I pray that my insurance will cooperate. I'm afraid to ask at the moment! The CTRC fights all my insurance battles for me; so I'm just appreciating the continuation right now. This was a long answer to your short question, so I guess I just needed to make a long "I'm so very grateful and happy" reply! Best wishes, ma

[alicecallahan]

my oncologist is conservative as well, made me get MUGAs every 4 months, and they continued to go down and he took me off herceptin when when my E.F. was almost at 50; this was about 2 treatments short of a year; i begged him to let me have a little more; he said no way, not combined with the muga scan the fact that only stage 4 patients are allowed to be on it; (I am 3) One dear friend i met at support group 2 years ago who had similar situation to me and similar treatment protocol, although not identical, went off herceptin after a year and 3 months later had 2 small lesions on her liver after being stage 2 and NED for 2 years prior........so i feel your anxiety, believe me !! However, I also know someone battling mets for 3 years whose doctor got, I believe, lax in giving her Muga scans, and at age 46 she had heart failure due to the herceptin and then had to go on heart meds.....so although it seems that docs are not supposed to authorize the herceptin for longer than a year unless metastatic, i believe there may be some out there willing to give it a shot as long as the MUGA is strong........

[Andrea Barnett Budin]

WHY STAY ON HERCEPTIN? Excellent question! One I've investigated pretty thoroughly. Hope y'all will see that thread (or go to SEARCH above, click and type it in for direction). I believe if can, stay on, as do my 4 oncs, plus Pegram in L.A. IS IT TRUE PEGRAM IS COMING TO FLA? "My" side of the country? Any one have specifics on that. I've called and get nothing definite yet, call back in 2 wks.

EJECTION FRACTION... My NY onc/nutition and supplement expert told me to talk PERFUSIA-SR (arginine 350 mg) daily and my EF will stay up! By THORNE (vegetarian capsule). He's fussy about quality, so sometimes I pay more, using him as a guide who knows his stuff. He makes nothing from my purchases. My husband uses Vitacost usually, but if you can't find it on the web, email me and I'll give you a # of a NY apothecary that ships anywhere immediately. That's my back up plan.

I know some who have had to go off Vit H because EF in their Echo. They were anxious and stressed. I felt so badly. I'd be scared to, as I believe it is keeping me alive. Kind of like when I recurred and was on Taxotere and then got shingles and was told NO CHEMO W/SHINGLES. So I made up my mind I was going to skip as fast as I could, kind of running for my life, and get over that damn agonizing ailment in a NY minute. I had it for 10 days, using supplements along w/Valtrex (which is what they gave you in '98). When I returned to the onc he asked how I was doing. I'm cured I said. He smiled. And laughed. Let me see. I lifted my shirt. He walked all around me nodding and saying YOU'RE RIGHT! Ok then, you can have chemo today! HOORAY, I CAN HAVE CHEMO I thought, bemused to myself. Such an odd thought. But I knew it would save me.

My son-in-law (OB/GYN) Harvey says I'm not bc -- I'M bcs. I don't know exactly when I decided to start calling myself a Survivor, but I thought it from day 1! Sending loving, healing energy to all my wonderful Soul Sisters, as always... ANDI