Response to my request to continue herceptin.

[Chelee]

As some of you know I finished my yr of herceptin but since I could NOT have radiation I had hoped to continue on herceptin & finish a 2nd yr at least another 6 months to get me through my first two yrs from DX. At first it sounded like it would be no problem. I was told it was a very reasonable request. But I just saw my onc yesterday & what they decided on is to let me go for a 2nd opinion & see what they think about it? Then my onc followed up with there has been a study on nine weeks & that has shown to be just as good. (I know they were doing a 9 wk study, but does ANYONE know IF they ever *actually* came to the conclusion that 9 wks was just as good?) If so...I NEVER heard that?

Plus my onc followed up with...if the 2nd opinion was all for it...I would have to sign a paper that acknowleges the risk for heart damage. (Gee...I knew that.) I told her I was interested herceptin a little longer since as I mentioned...I had no rads & 5 positive nodes. Plus knock on wood but my ECHO's have all been great since I started. My last one was 69 %.

I was hoping to avoid starting back up with a loading dose...but its too late now. So I have to wait till they get my authorization for my 2nd opinion and set up an appt. Which I will do because I have other questions that are NOT being addressed at this place. What gets me is I won't say who told me so but I know for SURE there are several women at this place that have had MORE then the yr of herceptin. A good source told me so. So it is done...not sure why I HAVE to have a 2nd opinion but no one else does? But whatever it takes. I will keep pushing forward regardless. :)

Chelee

[chrisy]

Chelee,
I know you're a fighter and will definitely keep pushing! I think it's great that you "get" to have a 2nd opinion - especially since you've had so many concerns with not getting your questions answered to your satisfaction by your regular onc. Maybe you can take this as a great opportunity to get your questions looked at by someone with a different perspective!
Take care
Chris

[Chelee]

As I mentioned in above post does anyone have the answer to this?

(I know they were doing a 9 wk study on herceptin, but does ANYONE know IF they ever *actually* came to the conclusion that 9 wks was just as good as a yr?) If so...I sure missed it.

Chelee

[Karen Weixel]

Hi Chelee,

There was a study in Finland, FinHer Study, that showed good results when Herceptin was used for just 9 weeks. I googled in, 9 week Herceptin study, Finland, and it came up.

Hope this helps.

Karen

[Lolly]

Hi Chelee; from what I can glean the study that looked at nine weeks of Herceptin involved a small number of women and looked at Herceptin given for nine weeks BEFORE chemo. In the articles I found (Google Herceptin nine week study) the conclusions were that while promising, more research would be needed to confirm the benefit. Here's a couple of links to look at:

Short stint of Herceptin holds promise for breast cancer. Study looks at using drug before chemo instead of longer period afterward
http://www.jsonline.com/story/index.aspx?id=406135 (http://www.jsonline.com/story/index.aspx?id=406135)

<O:pOptimizing Adjuvant Treatment for Patients With HER2-Positive Breast Cancer: An Expert Interview With Dr. Clifford Hudis<O:p</O:p
http://www.medscape.com/viewarticle/532396 (http://www.medscape.com/viewarticle/532396)

<O:p

[Christine MH-UK]

FinHer used nine weeks, but that was nine weeks of herceptin with chemo and a fairly small study which did not compare those nine-weeks to a year of herceptin. There have been a number of small trials using herceptin only during chemo with excellent results, but a big trial needs to be done before anything definitive can be said.

The HERA trial (herceptin after chemo) did have a one year arm and a two year arm, but the announcement of the results from year two keep on getting pushed back. I vaguely remember somebody being told by a top oncologist that he would not give her a second year because the results of year 2 weren't that great, but I cannot find that. All I can find is this from the very informed Becky:
http://www.her2support.org/vbulletin/showthread.php?t=26634&highlight=HERA

I am a bit suspicious about the 2 year arm. I can't help but think that if it were a good result compared to 1 year that they would be shouting it from the roof tops now. I think that the 2 year results had been expected in 2006, but last I heard there wouldn't be a result coming out until 2008. Furthermore, the trial size was increased a few years ago, which is usually a sign that a trial needs more numbers to boost the chance of statistical significance, but the one year arm clearly didn't need a result because the results were very strong, so a lacklustre 2 year arm would be my bet.

[Mary Jo]

After reading these posts I was wondering about herceptin given with or without chemo. Initially I started with 4 dose dense A/C treatments. Then came 4 dose dense taxol treatments along with herceptin. The herceptin was given every 3 weeks. I received the herceptin every 3 weeks and continued it for 1 year. The taxol ended Nov. 30 2005 and the herceptin ended Oct. 2006. Also, I received herceptin while I went through radiation from the end of Dec. to beginning of Feb. Is that what is recommended? I notice many receive herceptin after chemo is finished and wondered why? is that what is recommended? If someone could explain that to me, I'd appreciate it.


Mary Jo

[Karen Weixel]

I had my Herceptin after my dose dense treatment was completeted for a couple of reasons... The trials were just ending for early stage disease and also, my doc felt I didn't need it because I was stage 1. He felt the risk was higher than the benefit for my stage.

I was persistant and changed his mind. I am glad I did!! My treatment was based on the Hera trial conducted in europe.

Karen

[dlaxague]

NBCC has an analysis of the FinHER trial at:
http://www.natlbcc.org/bin/index.asp?strid=805&btnid=&depid=3

The trial looked at two different chemo's (taxotere vs. navelbine) given 3x q3weeks, followed by FEC 3x q3weeks. There was an arm that gave the Herceptin with the first chemo (navelbine or taxotere) to HER2+ women.

I'll copy the most relevant paragraph here but if you go to the website there's an interesting discussion of the questions that remain both about duration and sequencing.

"Among HER2-positive patients, women who took Herceptin in addition to either Taxotere or Navelbine and chemotherapy experienced a 58% reduction in risk of recurrence or death compared to those not on Herceptin (10.4% versus 23.3%, or a12.9% absolute difference), and a 71% reduction in metastasis (7.0% versus 22.4%, or a 15.4% absolute difference). There was no observed difference in overall survival between these two groups. Women taking Herceptin did not experience significantly more cardiac events than those not on Herceptin."

I can't find much more about this study, referenced in a NZ article but talking about George Sledge so I assume it's a US study:<O:p</O:p

"The data on the 227 patients in the Sledge study is for 5 years of follow-up and it showed no difference in survival rates between those who received 10 weeks of concurrent treatment with Herceptin and those who received it concurrently for 52 weeks."

<O:p</O:p
Several hits in my small google search talked about frustrations with trying to look at a shorter duration of Herceptin because Roche/Genentech had no interest in supporting such studie$$$.

Debbie Laxague

[Becky]

Concurrent Herceptin treatment with a taxane seems to work better as there is syngergy between the two drugs. I did not take it this way because the trial concluded just as I was finishing Taxol and starting rads. I took it afterwards because it is better than not getting it at all.


If given a choice, I would take it with the taxane.

[Vanessa]

Good luck to you. My doctor has stated that she will keep me on Herceptin for 2-3 years as I am stage 4. I was beginning to have an allergic reaction to the Herceptin, but yesterday at treatment, my doc gave me 10 mg of decadron and some extra benadryl and it worked. I agree keep fighting for what you need.

[Andrea Barnett Budin]

Chellee and all you fabulous ladies who keep on fighting:
I was dx '95 4th stage 9 cm tumor + 2 out of 18 nodes. Mastec + 4 Adry and 8 CMF. Met into liver in '98 (found because "I" questioned slightly elevated liver enzymes (noted and dismissed by 2 docs) in last 3 comprehensive bld workups (done every 3 mnths). I asked for a liver sono. Don't even know where those words came from! Well, yes, I could justify an abdominal sono. Arrangments made. Sent me, w/apologies for CT scan because wasn't sure what he (radiol) was looking at. Multiple tumors throughout liver. Biop. confirmed met. 1 doc suggested taxol. 1 recommended navelbene. 1 thought Taxotere. I asked to be test for HER2 gene (in Aug of '98), my husband and I being up on everything re cancer and BC in particular. Came back 80% pos. Why did you choose Taxotere?, I asked my fav doc. He was thoughtfully and then said, What you have is a highly aggressive form of BC and Taxotere is the most aggressive tool we have right now in our arsenal. I was sold. Take the harder road w/good reason. They added Herceptin after 8 wks (to be sure Taxotere was shrinking/working). I was to stay on the Herceptin every wk NO MATTER WHAT. I could go 24 hrs before or after, but I had to strictly adhere to the protocol that had been proven in clinical trials. Ended Taxotere at the end of May '99. STAYED ON HERCEPTIN WKLY, THEN TRIPLE THE DOSAGE EVERY 3 WKS -- TO NOW! Saw Dr. Pegram in Calif, who worked w/Slamon to develop the drug that corrected the defective gene they'd isolated and hold responsible for 20-30% of BC.

Yes, it is very aggressive, but they know what's causing our BC! And they know how to target it. ECHO ev 4 mnths went to every 6 mnths. Pegram says (as of last yr) if no heart problems after all this time -- go for annual ECHOs AND STAY ON THE HERCEPTIN. My Pt. Washington, Long Island NY onc agrees. My NYC onc/nutritional expert agrees. My Boca onc agrees. They each have MANY patients on longterm Herceptin!!!!

I read this site and keep wondering -- why isn't everyone who is HER2 pos, and especially if they've had the add'l, now available, bld work that shows they are good candidates who can benefit from this miraculous cure -- why aren't they remaining on Herceptin?

Would love your feedback on this.

I am sending loving, healing energy to you all. I truly love you all. I love your wondrous fighting Spirits. I stand beside you and I am rooting you on. "Beautiful people do not just happen" as the post above mentioned Elizabeth Kuubler-Ross' quote. Beautiful people have known suffering, known struggle, known loss and have found their way out of the depths! Better people, not caving into bitterness. One letter makes all the difference. Fight on. Keep asking questions. Keep asking for help. Be firm but sweet is my motto. (Last wk I had to "fight" to get a CBC and then at 11.2 HGB suggest they call my insur co for certification to cover the cost of an Aranesp injection. New rules are in force, it seems. I was a wobbling basket case, practically begging for help! And, I got it. My chemo nurse said, you did the right thing. You have to be forceful and persistent.)

LOVE, ANDI

[sdhaem]

What is rads....?? I keep hearing it but don't know what your talking about..

[sdhaem]

What symptoms are you having from the herceptin... I itch all over the next day..

[Mary Jo]

Rads = Radiation.



http://her2support.org/vbulletin/images/icons/icon7.gifMary Jo

[Chelee]

That certainly clears things up. Especially Christine's post. I knew about the FinHer study & I thought that was the one my onc was referring to without actually naming it. When I asked her directly she said there has been other *studies* (As in more then one.) and the way she worded it was to imply 9 wks has proven to be as good as a year. I just wanted to make sure I *didn't* miss something on this. I was very disappointed when they didn't release results this yr at the ASCO like we were told they would.

Now after reading Barbara's post where she was NICE enough to share her discussion with Dr. Pegram with us. I see she asked about maintenance herceptin. I noticed he said one yr *should* be enough. He even mentioned the fact that 9 wks might be as good as a year. (Although he still mentioned how small that study was and they are currently doing 6 months verses 12 I believe it was.) I did see he mentioned the the results from the HERA study won't be available till 2009 now. It keeps getting pushed further back.

I am still going to go to my 2nd opinion as I have lots of other questions that my onc is just NOT going to answer. Last time I went to this other place for a 2nd opinion I got ALL my questions anwered...it was a nice change. So yes Chrisy...that is exactly what I am going to do. :) I will still get their opinion on the herceptin...but I have quite a few other questions I feel I need answered and soon. This other place was great last time I went up there.

Thanks again to all of you for your replies and links to information.

Chelee

[Chelee]

Andi, You have been through alot & it sounds like you have made some great decisions & done so well. Your post is very encouranging. It sure paid off that you & your husband were on top of everything...that's half the battle as you know.

I realize you were DX stage IV in 95, but I noticed you talked to Dr. Pegram sometime last yr. His thoughts on your case was to stay on herceptin. He seemed to be for maintenance herceptin in your case. (Maybe since you've done so well he feels there is no reason to take a chance on stopping it as long as your ECHO's stay in range.) Have you been on herceptin 4 yrs plus now? I know of quite a few women that have done great & stayed NED on herceptin alone. But his response to Barbara was they weren't for maintenance herceptin. (But there is probably alot he has heard since last yr that might of changed his thoughts on this?) Lets face it...they really just don't know what's better yet or I think we would of heard by now? At least I hope so. I notice Dr. Pergram also told you they have lots of people on long term herceptin. (Which we know is true because we have quite a few of them right here.) I wonder why they are for some staying on it pass a year & not for others? (Confusing at times depending on who you talk too...so many different opinions.) It must be hard because there is no definite answer yet. (guess we have to wait for the final studies as hard as that is...until then do what we think is best for ourselves.) So many decisions to make along the way.

Thanks so much for your reply Andi...I really appreciate it.

Chelee

[Christine MH-UK]

I can think of extremely promising published cases where herceptin was used only during chemo for either 12 weeks: "Docetaxel, cisplatin, and trastuzumab as primary systemic therapy for human epidermal growth factor receptor 2-positive locally advanced breast cancer" by Hurley J, Doliny P, Reis I, Silva O, Gomez-Fernandez C, Velez P, Pauletti G, Powell JE, Pegram MD, Slamon DJ.

I can also think of a study where only 24 weeks of herceptin was used: "Neoadjuvant therapy with paclitaxel followed by 5-fluorouracil, epirubicin, and cyclophosphamide chemotherapy and concurrent trastuzumab in human epidermal growth factor receptor 2-positive operable breast cancer: an update of the initial randomized study population and data of additional patients treated with the same regimen" by Buzdar AU, Valero V, Ibrahim NK, Francis D, Broglio KR, Theriault RL, Pusztai L, Green MC, Singletary SE, Hunt KK, Sahin AA, Esteva F, Symmans WF, Ewer MS, Buchholz TA, Hortobagyi GN.

However, for the life of me I can't think of anything but FinHer that used only nine weeks and in Barbara's very informative interview with Pegram he said that they were going to trial six months at first (roughly 24 weeks) and only then go down to shorter amounts.

You might want to read the thread "A Visit with Dr. Pegram" though, if you haven't done it, since he specifically recommends not going beyond a year of herceptin in the case of patients who are being treated for primary cancer and indicates that the trial that compared two years of herceptin to one year isn't showing improved results.

[Mary Anne in TX]

I wonder, too, why they choose some of the options that they do. But I'd guess it's because of their case load studies and gut instincts. My onc told me even though I had finished a year (started May 5 '06 on herceptin), he'd like to keep me on herceptin. He said not indefinantly, but for now. Not sure what my insurance is going to do. I'll just pray about that for now. I didn't ask him why last week, but will in 5 more weeks when I see him again. I can't figure out why my blood counts just aren't great with all the stuff I've had. I think it's time for some yoga. Never done that and I hear it does wonders for the immune system & the mind! But it felt right to say yes to keep on keeping on. Just a feeling, but a strong one. I wish they would put us all in a computer somewhere and spit out the info for us. Surely does seem like it would help - though not very scientific! I am so grateful for the info. shared each day. Sometimes I feel like a poor student because I get tired of researching and trying to remember what I learn! But those times pass and I keep truckin'. Have a super day all! I'm so glad to be alive! ma

[Barbara2]

Keep in mind that when Dr. Pegram and I were discussing maintenance Herceptin, it was in regards to NED, no recurrence/early stage breast cancer. I had read where docs were speculating how to keep cancer from recurring in the early stage patients; sometimes they recur after 5 or 10 years or later, and what could be done to prevent that, and would more herceptin at a later date, be an option.

So the question was, should these NED people (who already have received herceptin) try herceptin again later, say 5 years after diagnosis, or whatever, in hopes that the additional herceptin would keep cancer from returning.

That's when he said no, one year of herceptin should be enough. Then he went on to explain that trials are ongoing in testing less and less amounts of herceptin in order to determine what amount is really needed.

As you pointed out, Andi is stage IV, so (I would suppose) that is why the doctor suggested that Herceptin be continued.

[Andrea Barnett Budin]

QUICK UPDATE: DX '95 STAGE 4 INVASIVE LOBULAR CARCINOMA + 2 NODES -- mastectomy + 4 Adria/8 CMF, then '98 multiple mets into liver, Her2+ 80% -- Taxotere 9 mnths + Herceptin began 8 wks after beginning that chemo, to be sure it was working w/CT scan confirmation. On wkly Herceptin from Nov '98 - '02. On Herceptin ,triple dosage every 3 wks TO PRESENT. In '03 1 of my 5 oncs!!!!! suggested 5 yrs was as good as 10. (Love this brilliant man but -- I DIDN'T WANT TO BET MY LIFE ON HIS SUGGESTION.) He offered that I could always go back on Herceptin if I had a met. I thought (AND go back on chemo and lose the hair for the 3rd time and endure that hell -- no thank you very much)! I had a drastically poor prognosis and have been NED since '99. I AM ON THE 40 YEAR PLAN. In cautious remission and planning to stay right there. I want to be at my granddaughter's wedding and be a great grandmother. Was 50, with no grandchildren, when originally dx. Willing to do whatever it takes to get me there.

1 onc in NY told me stay w/the plan. Another said, sounds good. I spent an entire day on the phone w/every breast cancer organization and UCLA and Slamon's office to get more input. No one was sure. I felt sure. But I wanted to meet w/Slamon, when visiting my Calif daughter. He wasn't seeing patients at the time. FYI, I now here, from this site, that he is back! It was suggested by Slamon's office that I see Dr. Pegram, his partner. I made the appt.

Pegram read my copious file. He said there was no theoretical reason why I should go off the Herceptin. As long as I could withstand the drug physically (I am extremely fatigued and get dipping red blood cell counts, then get Procrit or now Aranesp and am back to good for 3 mnths, then the cycle repeats, I was getting every 6 mnth ECHOS and my EF was 55% which cleared me, I had a small pericardial effusion from Taxotere that remained stable and not interfering w/heart function and was finally advised it would probably never go away and that that was fine, I get split nails (big deal) -- I'LL LIVE.) Pegram said as long as I could psychologically deal w/Herceptin FOREVER. I can. I believe it is saving my life. Pegram asked how I felt. If it were suggested that I go off Herceptin, what would I say? I responded right off. I said I'd say that sounds crazy. Would you tell a diabetic to stop taking their insulin?! Herceptin corrects my defective gene that overproduces a protein and causes cancer. There's your answer, Pegram said. You're doing great on it. You can financially keep going -- your insurance company isn't giving you grief -- stay on it. You're a walking miracle. A posterchild for Herceptin. Good job. Good for you. I think that's wonderful. My husband Paul and I concur wholeheartedly.

First dx at 50, post menopausal. Two daughters. One married at the time. Now 62. Other daughter married. And I have greeted 5 grandchildren as they entered this world. I witnessed 3 draw their first breath!

I keep as well informed as I can, and Paul does a superb job of gathering info. He is my best ally. Docs tell me I am healthy. I laugh. Just a little cancer. No, they say, your heart is strong, you're young. I laugh again. Comparatively, they explain. I feel 33 in my head, though chemo brain is a factor to be sure. I take supplements for mental acuity. They help. I'm working on writing a book. That helps keep my head clear and focused a lot. Docs tell me I have a great support team -- husband, daughters, family, friends. I envision myself far into the future every single day. I wake up grateful for the gift of the day and for my many blessings. I tell Paul I am lucky, and he thinks I'm crazy. You'd be lucky if you never got cancer. But I disagree! It could always be worse. I can walk and talk and bathe myself and feed myself. I can think. I can work at the computer. I can hug my grandkids and squeeze them tight.

I have become spiritually enlightened since '95 through dozens upon dozens of books. I meditate. I KNOW I will survive. I command my body every single day to get its' act together. To heal. To be healthy and well. I monitor my thoughts. I experience the fears and worries and then kick them to hell. They are noxious energy. FEAR AND FAITH CANNOT OCCUPY THE SAME SPACE. WHAT YOU THINK ALL DAY WILL BECOME YOUR DESTINY! Your thoughts are energy. They are emitted by you into the Universe. They are sensed and responded to IN KIND. If you send loving, compassionate, generous, grateful energy out all day -- that is exactly what will come back to you, in a karmic way that is Law! I BELIEVE in my power to heal my body. AND I believe in YOUR powers! If you choose, which is another power we are all born with, and BELIEVE in your ability to call wellness to you, through the power of the energy of your thoughts -- you will be another miracle!

I pray you aren't rolling your eyes and thinking this is all too New Age sappy nonesensical. Read Wayne Dyer. Read Seat of the Soul. Read The Power of Now. Find your joy and serenity. Open to becoming a vessel for Universal LOVE and wellness.

I send you loving, healing energy and my prayers for your reaching for wondrous possibilities with Expectation, clear Intention and passionate Determination!!! ANDI