Roll Call Long Time Herceptin Users

Sheila · 08-31-2009, 05:21 AM

Just trying to get a feel for some of us who are "lifers' on Herceptin....and how many years and if you find you are having any problems from it...I dont think this drug was intended for long term use when it first came out....we are changing life expectancy stats and therefore staying on this drug indefinately.

I hav been on Herceptin over 6 years, no breaks, no problems.

Next....

schoolteacher · 08-31-2009, 07:21 AM

Shelia,

I am glad you are doing this role call. I have to make my mind up in February 2010 about stopping or staying on Herceptin. It will be my second year. I hope the paper about one year verses two years comes out before this time.

I am stage IV.

Amelia

Colleen007 · 08-31-2009, 07:25 AM

I've been on it since December of 2005. No problems other than the persistent runny nose!

Colleen

Lori R · 08-31-2009, 09:18 AM

Great Idea,
I have been on Herceptin since my initial chemo began in 11/2007.

Nearing 2 years. No issues other than the drippy nose.

Lori

sarah · 08-31-2009, 10:19 AM

I've been on Herceptin for 5 years. I think this may be my final year although I was originally told it might be for life.
I've had more side effects from the AI Femara.
I'll feel vulnerable without it.
sarah

nitewind · 08-31-2009, 10:54 AM

I was only on it for one year. This post is interesting, I'll be keeping an eye on it.
What is the main reason for staying on herceptin? Just curious.

Del · 08-31-2009, 07:42 PM

I've been on Herceptin for just over 2 years, since May 2007, which isn't very long compared to some warriors. No problems with my heart, only side effect seems to be occasional fevers after infusion, and weak fingernails. It's working wonderfully, and I'm praying that the miracle continues!

GemmaG · 09-01-2009, 05:55 AM

Hi Sheila,
I have been on Herceptin (BFF) since April 2006. No problemo at all. I'm on weekly Herceptin since 2007 and up to now and it's keeping me going and going...
Love ya!
Hugs,
Gemma

Karen Wheel · 09-01-2009, 06:39 AM

I'm with Nitewind - I am curious what the docs are saying in the US (or world) on taking Hercepting long term - and why.
I am only 5 months in - but my docs in Italy are saying it is a 1 year deal here.
Is there something that triggers the doctors to tell you that you need it for another year???

Thanks - Karen

Colleen007 · 09-01-2009, 08:49 AM

Karen and Susan,

I believe that the standard is for 1 year of Herceptin if your cancer is caught early. Those of us who have been on it for the long-term appear to all be Stage IV. Hope this helps to clarify things.

Colleen

Midwest Alice · 09-01-2009, 09:07 AM

Glad you are doing the roll call. The plan is to be on Herceptin for a long time. I am on month 14 and hope to be a very long term Herecptin user.

I had an initial drop on my MUGA score of 10 points but, my onc put me on Enalaperal which brought my MUGA up 5 points. So I'm still up 5 points and on Herceptin...I do thank God for this drug!!!

My next MUGA is in Oct. I have lost 30 lbs. and feel better. I hope to bring it up a few points.

Whonoze · 09-01-2009, 10:24 AM

Stage IV. Have been on since 2/07, when I began chemo. NED since then. Plan is to stay on for good. Runny nose, bad nails, vaginal dryness and occasional foot cramps. Otherwise, feel totally great! The side effects
add up to a big nothing compared to what this wonderful drug is doing for me!!! I never even think about them.

I am grateful every single day. I'm hoping soon there will be a large enough population to study the long term effects.

Sheila · 09-01-2009, 12:07 PM

Coleen said it perfectly...some of us Metastatic BC patients, will be on it indefinately...or until it quits working or something better comes out. I still need the chemo, but at least the herceptin is confining it to my nodes for now!

chrisy · 09-01-2009, 12:18 PM

To further clarify,

I think your original question, and the issue of long-term Herceptin is really more directed towards those with Stage IV vs. adjuvant (early stage).

CourtneyL · 09-01-2009, 12:41 PM

I don't know if I qualify as a long-term user. I was diagnosed with metastatic disease at the outset in April 2008. I have been on Herceptin ever since. No side effects to speak of. I've had progression on Herceptin (brain mets) so I've also added Tykerb and Xeloda but still keeping the Vitamin H in the cocktail since it seems to be controlling things from the neck down.

mamacze · 09-01-2009, 06:31 PM

Hi Sheila and all of our "Lifers"!
I have been on Herceptin for 5 1/2 years - stage 4 - no problems other than the runny nose and mouth canker sores, aches, etc.
Small price to pay for the wonderful benefit of a good life.
Love Kim from CT

Joan M · 09-02-2009, 08:33 AM

Sheila,

Geez, I'm a newbie.

I took Herceptin off label weekly for one year (2004-2005) without problems when I was first diagnosed with early stage bc in fall 2003.

I resumed the drug when the cancer spread to my lung in spring 2007. But was taken off it once for three months when my LVEF dropped more than 10% (which apparently is the protocol) in fall 2007, even though it was still above 50% (it dropped from 70% to 56%).

Other than that, I haven't had any other problems.

Joan

StephN · 09-02-2009, 11:11 AM

My debut with good old Vitamin H began in January of 2002 when I was found to be stage IV. I had it weekly with my Taxol and Navelbine for 7 months. Then changed to Herceptin only when my tumors were deemed "cleared and in remission." I stayed on that plus Zometa on the 3-week schedule for a couple of years, then reduced the Zometa over time.

It was difficult to determine what the side effects actually were from the Herceptin as I started it when still recovering from my adjuvent treatments and had it with two other harsh drugs.

Last summer I had a 9 point drop in my MUGA, so took a break, and have not yet resumed taking Herceptin. My Muga bounced back, so that is not the reason I am still off the drug. It is my choice for now after over 7 years of taking this drug. (There is another thread where going off long-term Herceptin is discussed.)

Now that I am well off the Herceptin and years out from the hard chemos, I can better assess what side effects were actually due to the Herceptin itself.

The main improvements that I have noticed (and in order) are increased energy; stronger, less brittle finger and toe nails; WAY fewer cramps in legs, hand and feet; and lessened "allergy" symptoms.

Plus I believe that I had more stress from the constant visits to the cancer center than I was admitting. That was part of my monthly routine, and having changed that, I am more productive in other areas of my life.

Sandra in GA · 09-02-2009, 12:02 PM

Thank you "lifers" for sharing your experiences about Herceptin. It gives us "early stagers" hope and information about what to expect if and when we become one of you.

Love to all......

Sandra

Nancy L · 09-02-2009, 01:59 PM

I have been on Herceptin since December 2005. As of March 2009, I am also taking Tykerb. Herceptin side effects were runny nose and brittle fingernails. I have found Tykerb much more difficult to tolerate but since the drug combo appears to be working, I will deal.