Re: How long Should I continue herceptin ?
 

Heck. I was on H for 10 yrs. I have been off for 5. And still the answer to our big question remains UNKNOWN!

Is no one studying the likes of US?????

Re: How long Should I continue herceptin ?
 

Hi Andi
Looks like there's very little research out there! Think there may be lessons uto learn from women like yourself who have remained NED after stopping! It may give clues and directions to why that is and maybe unlock some keys that could help others.
Ellie

Re: How long Should I continue herceptin ?
 

When I had the good fortune yrs ago to meet Dennis Slamon, while visiting Mark Pegram in Calif visiting my dghtr who lived there, I brought my file. About 8" tall...

A nurse stopped in as my husband and I were chatting with Mark, and mentioned Dr. Slamon was in the office. This was during the yrs that these partners had split, as Denny was totally into research.

I announced that I AM NOT LEAVING THIS BUILDING TILL I MEET DR. SLAMON! Everyone smiled and the nurse looked like she was on a mission. About 5 min later, a knock on the exam door and -- it was Denny.

I stood up in my 2" heels, on the step of the exam table, making me a whole lot taller than my 5'3" and Slamon walked in. After all I was a 4th stage HER2er who had received Vit H just as I'd recurred throughout my liver and had been on it for about 5 yrs then. H had been fast-tracked by the FDA 1 mnth after my recurrence. So I was among the few who could claim this.

I threw my arms around his neck, as he stood, 6 ft +++ tall in front of me. We both hugged. I found myself saying, THANK YOU. THANK YOU FOR SAVING MY LIFE. What awesome words to utter. Of course, I'd never said such a thing before ever.

He was as thrilled to meet me as I was to meet him. Paul, darling hubby, stood and they shook hands. All gleaming. Dennis announced that Mark had been a part of the team who developed H, and I belatedly thanked him as well.

We chatted for a bit. Dennis asked me if I would take part in a study they were doing of longterm survivors on H. Though I lived in Fla, I took part OF COURSE by phone, by mail, swabbing my mouth at specific times of day for days and shipping my cortisol levels to his research team.

I took several hrs of phone interviews asking all sorts of questions and had extraordinary conversations with these young women.

I had asked for the results to be sent to me.

I never received anything.

And now as I scour the Internet for info about the duration of H as recommended I basically see UNKNOWN. Some say a yr. Others 3 or 5. But I have seen some who go off at 7 and recur within 4 mnths. I'm glad I stretched it to 10 yrs. And I've been off for 5, still stable. NED.

BTW, Paul and I felt like we were walking on a cloud for the rest of that day in Calif (Santa Monica @ UCLA)! WE FELT AS IF WE'D JUST MET ELVIS! An absolutely awesome experience I will never ever forget. Nor Paul.

Paul had called Slamon when I recurred in '98. Slamon took the call and spoke to this total stranger at length, both concerned w/this man worried about his wife who had just found out she was HER2+ (80%).

We were aware of the clinical trials and the discovery of the gene and I asked to be tested in '98. They didn't test for that in '95. But the thing had been IN THE WORKS for a good 10 yrs!!!!

Maybe we shouldn't be so slow to approve drugs in America. Other countries seem to have access before we do. In '98 H was fast-tracked because women were being given 3 mnths to live and wanted to try this "new" drug that women in other countries were on!

The stringent clinical trials alone are beyond arduous and difficult to attain monetarily. H was in the 2nd phase of clinical trials when they determined FINALLY to forgo the 3rd phase and get it out there. At that time, to metastatic patients only.

Slowly over the yrs, H became available to first liners, which I believe may well have totally changed the course of many many lives profoundly.
Andi

Re: How long Should I continue herceptin ?
 

I'm glad I popped in to read this and your reply mamacze. I have been on Herceptin and NED for 8 years (lung mets) and have been recently thinking about getting off of it. I have gone from doing it every 3 weeks to once a month, for the past year and half. I think I will stay on it as long as its working. I am so tired of the reminder that I have stage iv cancer but if I quit it and it came back, I would be forever second guessing my decision

Re: How long Should I continue herceptin ?
 

This issue was brought up to me today. I've been NED in the body for 5 years as of August, and if my brain MRI in December goes well, that will be 5 years, too.

I'm very reluctant to go off of it, and I expressed that. It's a security blanket. After all, I'm stage IV and there's not cure. Right? I'm also thinking about Kim in CA who was NED for 5 years and discontinued taking it and then the mets came back. Kim how are you doing?

Re: How long Should I continue herceptin ?
 

I have now been on Herceptin holiday for 10 months. I had previously been taking it for 6.5 years for liver mets and had been NED for 5 years. It was causing me very bad toxic neuropathy to the point I was at a very low quality of life and it was impacting my driving and picking up of things and just daily functioning so onc. finally decided to pull me off.

So far so good but lately been losing a few pounds and lots of intestinal issues as well as a little pain in the liver area but I have been on 2 weeks of antibiotics for an infection so thinking that may be it. I am due for scans and lab on March 15th so if things get better will just go then if things don't get better I will call and see if they can move them up.

For now not wanting to think about it and continue on this most wonderful break. The neuropathy has improved some and quality of life but I seem to have hit a plateau with improvement from the neuropathy. Just thought I would check in so any others considering going off could hear my story.

Hugs to all,
Kelly S. (Kansas)

Re: How long Should I continue herceptin ?
 

Hello Kelley!
Great to hear from you. Glad the holiday continues and you are being closely followed.

Have you tried any physical therapy for your neuropathy? I have found that some simple hand and finger exercises helped me, as well as increasing my activity level. At first I had to push myself, but with time it has gotten easier. (I have some slight tingling in my fingertips as I type this ...)

Re: How long Should I continue herceptin ?
 

Hi Steph,

Thanks for your reply. I have been doing chiropractic care to help with some of my pain and neuropathy issues but had not thought of physical therapy. That is something I will look into. I have used a great physical therapist in the past.

My fingers and toes certainly bother me but the neuropathy had become so bad that it was effecting my entire body - including my mouth, tongue, face and optic nerves.

I can handle the fingers and toes but the mouth and tongue numbness and tingling is what really gets to me. They have me on gabapentin which helps but the tongue numbness and tingling is always present.

I am also going to try and start taking L-glutamine - I am not sure if it will work but have heard that it might.

Glad to hear you have had some relief to your neuropathy. It sounds like you may have some permanent damage too. Hopefully we will both keep improving if we can stay off the Herceptin. I was glad to read that you had been off of it for some time.

Hugs to you!

Re: How long Should I continue herceptin ?
 

Hi Kelly -

I am sure my neuropathy is from the early rounds of taxotere and the 28 weekly taxol and navelbine I had for mets. It never got worse while maintaining on Herceptin alone for all those years.

I did use L-glutamine while on the 28 rounds, so that may have helped me then. Do not know if it will halp after the fact - when you are not on treatment.

In 2012 I blew a disk and lived on several doses of gabapentin daily for almost a year. Last fall I switched to a low dose of Lyrica and that is for my long nerve that foes from spine down my left leg. Lyrica is much more expensive, but the gabapentin was fogging me up and losing its effect on my nerve.

A good PT should be able to help you. Best of luck!

Re: How long Should I continue herceptin ?
 

Thanks Steph!! I will check back in a few months and let you know how the scans go and if I find any solutions to the neuropathy!