3 years + on Herceptin, Why
 

I have been on Herceptin for 3 years now. I go every 3 weeks, and receive 560 mg by IV. My doctor keeps telling me that because I was stage 4 when I was diagnosed I should remain on the drug because there are no long-term studies that he can point to that suggest it is ok to discontinue the drug. Anyone else out there that was stage 4 and has either gone off the drug after 1 year or is still on, like I am?
Also, what are you charged for Herceptin treatment. I'm getting a bill for $7,000. Is this right? I just changed insurance companies and I'm afraid they will drop me because of the continuing costs of this treatment.

Diagnosis: 1.8 cm, grade III, Infiltrating Ductal Carcinoma in situ (DCIS)
Estrogen Recepter negative (ER/PR-)
Her2neu 3+/2+
13 of 19 nodes involved
4/27/06 Mammogram/Ultrasound Found lump
5/12/06 Needle biopsy attempted
5/30/06 Lumpectomy
Surgery 6/19/06 Reexcise superior margin; sentinal node biopsy & removal of lymph nodes; 8 nodes affected
BardPort Implanted Port with Groshong Catheter
Breast MRI 6/14/06
PET Scan 6/15/06
CT Lungs 6/29/06
Echocardiogram 6/29/06 (every 6 months)
BRCA Testing – Genetic Counselor 7/12/06
Pulmonologist consultation 7/12/06
CT Scans every 6 months

Treatment:
Chemotherapy w/Herceptin (6 months)
Radiation (2 weeks)
Ongoing Herceptin 560 mg treatment every 3 weeks
　

Re: 3 years + on Herceptin, Why
 

Hi,

True, there is no data indicating when/if it is "safe" to discontinue Herceptin once diagnosed as Stage IV. There are several people who post here who after having been NED for years on Herceptin have stopped. They are in uncharted waters and are being monitored very closely. All of these folks were at least 7 years out although there are some who are asking this question after 4-5 years.

It is not clear to me from the stats in your signature why you are classified Stage IV. Did you have cancer spread to other places besides the axillary nodes? I see you had Pet/CT scans, maybe cancer was detected elsewhere that you did not indicate.

I guess the short answer is, most people diagnosed at Stage IV can expect to continue on Herceptin "indefinitely".

The treatment cost varies widely, and remember that most insurance co's pay much less than the original amount billed. I think mine was around $3000 every 3 weeks. Still a lot of money. However, continuing on Herceptin is standard of care, so most insurance companies pay.

Re: 3 years + on Herceptin, Why
 

You are right. I left out that the cancer spread to my lung, but chemo took care of that.

Thanks for your info. Although I've been on this therapy for 3 years I still learn things from folks like you.

Re: 3 years + on Herceptin, Why
 

Hi I'm new to this site and finding this interesting reading - many thanks. I have a question I have been on Herceptin since June 04 for liver mets. I have been well and CT scans remain stable since Sept 04 when chemo finished but herceptin continued.

My oncologist is now suggesting I should try discontinuing herceptin and be monitored very closely. Very nervous. My questions are: is there evidence of longterm herceptin side effects? and is there evidence of progression of disease when herceptin discontinued after long term use?

Any advice/knowledge on evidence so I am more informed for my meeting with oncologist this Friday would be very welcomed.

My interpretation of NICE guidelines (I live in UK) is that as I have no progression of disease or have side effects then Herceptin treatment should continue. Any comments welcomed on this interpretation. Many thanks

Re: 3 years + on Herceptin, Why
 

Hi Fentonlady,

Many of our sisters on this board are long-term survivors. If you type in 'long-term survivors' (or 'long-time'?)using the 'Search'
button on the maroon bar on top of the board, you will find many of our sisters' stories and their treatment history in the 'signature' field.

Has your MUGA score decreased? Most long-term Herceptin users quit taking it when their heart function decreased more than 10 % according to the MUGA result.

From what I've read, most people just go back to Herceptin when their MUGA improves or if there is progression after they had discontinued it or had switched to another medicine for a while.

Re: 3 years + on Herceptin, Why
 

I was IV from the start now NED and 18 months out. One of my onc wants me to think about going off herceptin. I want to get more NED time before I think about going off.

He did say something about a side effects of Herceptin being brain mets. I have never heard of this before. Does anyone have any information on this?

I have heard: Herceptin doesn't cross the blood /brain. So Her2 showes up in the brain because the body is protected.

I feel stage IVs should also keep close watch with Brain MRIs every now and then. Her2 + does tend to go to the brain.

Re: 3 years + on Herceptin, Why
 

I am very surprised by your MD Anderson onc's comments. I do not believe that there are any studies showing brain mets are CAUSED by Herceptin. They are associated with Herceptin use because Her2 positive breast cancer tends to metastasize to the brain and Herceptin does not cross the brain blood barrier. I believe that it is standard of care to continue on Herceptin until progression, and, in many instances, beyond Herceptin. Some women who have been on Herceptin for many years are now taking a break from it, but I don't think the effects of such breaks have been studied.

I wonder whether there is some gap in communication between you and your onc. Does he think that you are stage IV?

I have been on Herceptin for over 2 and a half years, and I am currently NED (knock wood).

Best,


Jill

Re: 3 years + on Herceptin, Why
 

When I said Herceptin doesn't cross the blood brain barrier, he said thats right or thats right but we don't know.

I really like him, but I talk to his nurse then a fellow or his PA. They go back and talk to him. Then he comes in and I talk to him. So I don't know if he gets everything I say.

This was my first MUGA there. His PA told me I should be off H in Janurary because my MUGA had gone form 53 to 43 then up to 48 on Enarapril. He keep me on it and said get my MUGA up. So I changed my eating habits, started walking and lost 30 lbs. My MUGA went up 11 points! to 59...

The PA came in first said all clear. He wants you to go off H and Z. I said no he told me I would be on it forever. Oh I will check blah..blah.. I ask about the spots that were there in Jan. and they were all gone.

I ask her if they were cancer and she said they were because they were gone. That would make me a IV

So I got out my reports. One states many spots, for example list T3, blah,T10 blah, T5 blah,, For example means they couldn't even write them all down. And ask her why I would want to stop H her answer was because they are not active.

Then I had to ask her for my MUGA score. and it was up 11 points!! go figure. Again why would I want to go off H?

"Well that is a good score for you" ok yes it was very good for me.

Jill I am at a loss

Re: 3 years + on Herceptin, Why
 

Alice,

Seems I've read somewhere on the board (posted by Chelee?) that Dr. Slamon had said that it was not clear if there's any additional benefit to continue Herceptin after one year.

I am so glad you are doing so well. And I thought to myself: "One of these days I am going to try that enalaprial and see if it will boost my MUGA score..."

Re: 3 years + on Herceptin, Why
 

Hi Jackie, There are so many of us on here I know it's hard to keep track of who said what? But I just wanted to make clear that Dr. Slamon did not tell me that. We never discussed if there were any benefits to taking herceptin past a year. Someone else must of said that.

I sure know I wanted to stay on Herceptin when my yr came to an end...I asked my onc and the COH onc if I could take it for at least 2 yrs? But they both said there were no studies to say 2 yrs was better then one. It's interesting that once stage IV they will let us stay on it forever. (That implies to me that they do know it works in most...not all cases.) Since it does work, it's a shame so many are taken off it after their yr is up. I really believe I would of remained stage III if I could of stayed on it. Of course I'll never know that for sure. (Herceptin is an expensive maintenance drug which makes me think that's why it's only given for a yrs time if not stage IV?) With the insurance companies the way they are I can't help but wonder? Its one of those things that make you go....Hummmm?

Chelee

Re: 3 years + on Herceptin, Why
 

Chelee,

Thanks for the clarification. I believe the statement I had remembered from Dr. Slamon was directed toward stage I patients who are taking Herceptin for 'insurance'. It was posted within the last month by somebody who had got off Herceptin after having a consult with Dr. Slamon.

It seems that there are issues with 'resistance' and it also seems (from several members treatment histories) that going back and forth (with other medicine in between) works out quite well in many of the cases.

There are also new drugs being tested. I hope your femur will be treated soon and you can get back to the 'H-vitamin' (as Andrea Barnett Boudin had called Herceptin - where has she been these days?)

Re: 3 years + on Herceptin, Why
 

I can assure you that the bean counters would not support continued herceptin for those who are Stage IV unless it was effective!!!!

From my previous thread:

French bean counters find herceptin cost effective for Stage IV
for those whose governments/insurance companies are trying to limit your herceptin:

ABSTRACT: Cost-Effectiveness Analysis of Trastuzumab (Herceptin) in HER2-Overexpressed Metastatic Breast Cancer
[American Journal of Clinical Oncology]
Objective: In women with Human Epidermal growth Receptor 2 (HER2)-positive metastatic breast cancer (MBC), Trastuzumab has become the standard of care but previous studies have raised doubts about its economic acceptability. We carried out the first cost-effectiveness study for Trastuzumab in MBC patients, in France, that is based on observed resource use and outcomes in clinical practice.
Methods: We retrospectively analyzed 47 HER2-positive MBC patients in a before-and-after design study. Nineteen patients did not receive Trastuzumab (before Trastuzumab introduction in clinical practice) and 28 patients received Trastuzumab (the after population). Direct medical costs were estimated on the basis of the physical quantities reported in the patient medical records, for the period from first metastatic progression until death or date of patient last news. Monetary values (2002 French francs) were attributed to these quantities on the basis of unit costs and incremental cost-effectiveness ratios were calculated.
Results: In the Trastuzumab group, median overall survival was significantly higher (37 months vs. 19 months in the non-Ttrastuzumab group, P = 0.001) but total treatment costs were 3 times higher (€39,608 vs. €12,795). The cost per additional life-year saved by Trastuzumab treatment was estimated to be €27,492 (95% confidence interval: €20,964-€34,020/year of life [bootstrapped estimation]).
Conclusions: Our data suggest that despite its high unit price, Trastuzumab should be considered cost-effective in MBC patients to the extent that its incremental cost per life-year saved remains lower than gross domestic product per capita in countries like France.

Re: 3 years + on Herceptin, Why
 

Thanks, Lani.

Here is a paragraph written by one of the members who had consulted with Dr. Slamon about two years ago :

"I think that EF frequently go back up with a break from Herceptin. Also, I consulted with Dr. Slamon about how long I should take Herceptin and asked him how concerned I should be if my LVEF dropped and I had to discontinue it. Basically, he told me that I should not be overly concerned if I could not finish out a year of herceptin becasue the one year mark is completely arbitrary. He said there is a study going on now that is testing a 9 week time frame."

The 9-week study was done in England. And I'm thinking it was directed toward the stage 0 and stage I group.

And if I remember correctly, there are more and more studies done on the sub-types of breast cancer within the Her2 type. We are living in the 'Brave New World'!

Hang in there, my sisters!

Re: 3 years + on Herceptin, Why
 

Lani, That's excellent...it's about time they did a study on this and got it right!

This last yr my TM'ers were slowly inching up...not once did they go down. So I got started on just the herceptin & Zometa. Checked my TM'ers 2 wks later & my markers had already dropped 17 points in that short time. Herceptin works great for so many of us, so I'm very pleased to see that this study is right on target. Thanks for posting that.

Chelee

Re: 3 years + on Herceptin, Why
 

Jackie the quote from Dr. Slamon referred to the arbitrary setting of one year as the length of treatment in the adjuvant setting (preventative) NOT in the metastatic (Stage IV) setting. Apples vs oranges

The 9 week trial was done in Finland and is referred to as the FINHER study and used some unusual chemos given in unusual sequence.

Re: 3 years + on Herceptin, Why
 

You are very fortunate to have a doctor who wants you to stay on Herceptin. As a stage IV patient, you do need to continue it. Some women do take breaks from time to time. Discuss it with your oncologist.

Best of luck to you.

Adriana

Re: 3 years + on Herceptin, Why
 

Hi Alice,

I was on herceptin (still am) and got mets to the brain. It apparently does not cross the brain barrier, as you have said. I had gamma knife radiation to zap those things. I am tolderating herceptin very well. I take navelbine as well.

All good things to you
D.W.

Re: 3 years + on Herceptin, Why
 

I just had this conversation with my dr., the stag 1,2, they have one year of herceptin. But, stage 4, he says indefinite, or until there is enough time of NED, to decide to go off herceptin. However, he said there isn't enough information. He has patients on herceptin for years and they are doing fine. Each case is different, we are all unique, even though we have the same stage's etc. It's up to dr and how confident you feel in the decisions you make. I am getting the her2 serum test,
which may be a measurement to let us know how i am doing on herceptin, or maybe in future to go off, right now i'm scared of some
unusual pain in front of my neck coming and going , just posted.

Also, the money, you can call genotech maybe they have some grants to help with payment of herceptin. It gets costly, but what are the
choices, herceptin is a life saver.

My dr. also said, hercepin does not cross the brain barrier, the her2 cancer does, that gave me a small breakdown, its all scary.

Herceptin is ok, as long as muga scans are in normal limits.

I'm not an expert and some seem to want reference on my post, I just get info. from my dr. and share it, he is an excellent onc. and I have
all faith and confidence in what he says, this is what a good doctor/patient relationship is all about, and when we have this kind of illness, they need to be our best friend's.

margie

Re: 3 years + on Herceptin, Why
 

Hi,

What is NED? My BC (Her2/new+ (3), EP neg; just finished preaduvant chemo; surgery/radiation to come), spread to at least 2 lymph nodes but didn't show up in my MRI, CT or All body bone scan. However, I didn't have a brain scan. Should I demand for one? I get occasional shooting pains at the base of my skull that come and go and my onc told me to get a good old fashioned massage. Aren't the symptoms of brain metastasis continual and gradually increasing in pain and pressure?

Re: 3 years + on Herceptin, Why
 

I have been on Herceptin for 11 years.. after finishing 8 rounds of chemo and 30 radiation, 3 weeks later I was told it was all over my liver..Back to 24 weekly rounds of taxol and started Herceptin... I am fine and continue to go every 3 weeks. I am blessed

Re: I had a break after 4 years
 

Hi
My advice would be to have no more than a short break for up to 3 months and then go back on it. I went off it after 4 years and 8 months later tumours came back in the liver. I am just about back in remission after 3 tx of abraxane and herceptin, and will stay on it now indefinately.
Jackie (down under)

Re: 3 years + on Herceptin, Why
 

14 years and counting for me~~~

Re: 3 years + on Herceptin, Why
 

Hi udith3
Great news and so inspiring. I am coming up for my annual scan so lovely to hear about your story. I am now over 8 years on herceptin and have just booked to visit San Francisco (I live in Scotland) so looking forward to it but of course travelling to USA is a problem as I have no health cover on travel insurance for breast cancer & another long term condition I have. I have decided to go for it - life too short. Thank you for posting

Re: 3 years + on Herceptin, Why
 

WOW Thank you for posting this, I could read these posts all night long. They give me so much hope! Thank you, Thank you!
My daughter has just finished her last chemo session Docetaxel (Taxotere®) She is Stage IV with mets to her spine. We have been told that she will be on Herceptin along with Zemeta indefinitely every 3 weeks. I have read some on Herceptin but it so fills me with joy when I read about the amazing people here that are still going strong after so many years.
I do have a question though. My daughter is only 22 years old, she is hoping and praying that one day she will be able to have her own children, however first her periods need to start again after the effects of the chemo and secondly will she ever be able to be off Herceptin long enough to carry a child?
Any information would be very much appreciated

Re: 3 years + on Herceptin, Why
 

Vonny,
I have a friend whose 27 year old daughter was diagnosed with breast cancer. I believe she located a very specialized oncologist who focuses on fertility issues with young breast cancer survivors.

I believe this Oncologist has offered up hope for a future with children. But...I encourage you to seek out someone with this specialized area of study. They are out there!!

BTW...my friend's daughter lives in Dallas, Texas if you would like further information.

Lori

Re: 3 years + on Herceptin, Why
 

Thank you Lori, we live in the UK so not sure that is available but I will look into it. I think mine and indeed Lorna's concern is that she has secondary and was told she will always be on Herceptin, I just wondered that if her periods do return will there ever be a time in her life when she will be able to be off Herceptin long enough to carry a child?

Re: 3 years + on Herceptin, Why
 

I was given Herceptin weekly for over three years. Recently, my body became immune to it and my cancer counts started going back up and my Onc. took me off Herceptin and put me on Tykerb and Xeloda. At some point, he will continue Herceptin again. Perhaps after i have taken Xeloda for awhile. I don't know how long he plans to keep me on these two drugs. I'm only on my second course.

Re: 3 years + on Herceptin, Why
 

You might consider monitoring your serum HER2. Not much published regarding value in your situation, but may be helpful. Take a look at www.hertestonline.com

Re: 3 years + on Herceptin, Why
 

Hope someone here can answer my question. I had a local recurrence 3 years ago; had surgery and radiation and have now been on Herceptin for 3 years. My oncologist says I will be on it forever and I'm confused as to the benefit since the recurrence was local not metastatic.

Re: 3 years + on Herceptin, Why
 

Although I am stage 4, I think a local reoccurence is a "red flag". Did you have herceptin the first time? I have read a number of posts of women who have stopped herceptin and had a reoccurence within a year. As long as your E.F. is within the normal range, as my oncologist said, lets not mess with success and continue on herceptin.

Re: 3 years + on Herceptin, Why
 

I had double mastectomy in 1986. No followup was done then. Early in 2001
I was diagnosed with Stage 4 metastasis. Had one round of chemo and was then started on Herceptin. So this will be my 12th year on it. I had brain tumor in 2009. Zapped with gamma knife. Take MRIs since then. Will cut back to 6mo instead of 3 on them this year.
PET Scan each year. MRIs have all been NED (no evidence of disease) and PETs have been NED for the last 2 years. Lucky me. Developed lymphedema in 2006 from having someone surprising me by taking blood pressure in both arms. (I was distracted by talking to to the cardiologist at the time.) Last Oct. I talked to Oncologist about quiting. (I was the first patient he gave Herceptin to in 2001. He was saying I could stop if I wanted to. I said, "If it went from my body to my brain, what is keeping it from going from my brain to my body? (Should be noted I have NEVER had a marker in all these years so how would I know of recurrence?) He said, "I knew you'd say that" and I continue with my herceptin infusions every three weeks. I see from these many posts that there does not seem to be a consistent answer to the "when to quit" quandry.

Re: 3 years + on Herceptin, Why
 

So hi, I am brand new to the site. I did not know herceptin goes on and on...I am new to all this...my Dx was 1/22/13 with lumpectomy& SNB 2/1/13. I had CAT Scan, bone scan and MUGA. I receive my port tomorrow and first of 6 treatments of TC-H the day after tomorrow. I was Her 2+++ stage IIa grade 3 invasive ductal carcinoma 3.5 cm an an additional 1.5 cm DCIS. I was told berceptin was for a year...why more?? Today my Onc called to say I need an ultrasound of my pelvis because CAT scan shows something that looks like a cyst but they can't tell. Should I worry?? I am 54 (on Sunday) and went through menapause as all this lump in my breast stuff started last May. Lump first Dx in June as a cyst but in December had grown so January FNA showed IDC. I had negative SNodes so this thing on my ovary should be nothing, right?

Re: 3 years + on Herceptin, Why
 

Hi iluv2scrub,

Herceptin is usually given for a year. Some patients (myself included) stopped early because of heart issues, while others (such as most stage IV patients) stay on it as long as it is needed.

When I was told to have an ultrasound after a CT scan of the abdominal area (mainly the liver) in 2009, I was sure they had found 'something'. Turned out it was to confirm the diagnosis of hepatic hemangioma - a benign cluster of blood vessels in the liver and is usually fueled by estrogen.

It's pretty hard not to panic when we are called back to have more tests done - especially at the beginning of our cancer journey. I remember all the tears I'd shed in the waiting room, all the 'SOS' I mailed/e-mailed home... But my 10th anniversary is coming in less than 4 months ...

Hang in there. Ask any questions - someone will find the answer for you. And yes, there's always an explanation for whatever we are going through!