What is the standard protocol for Her2

snowyday

Chemotherepy, I'm wondering how much different mine was as I was chemod for triple neg. Thanks

Ixia

 Hi Snowyday,

I was treated with dose dense AC/T+Herceptin - followed by mastectomy, radiation and Tamoxifen. I'll continue with Herceptin for a year, and my oncologist is planning Zometa infusion(s) next. The Herceptin is targeted treatment for my HER2+ disease.

Take care, I wish you well :-)

Ixia 

suemed8749

Snowyday: I've seen some of your posts - boy, it really sucks that they "missed" your Her2+. I just finished chemo yesterdy = 6 tx of Taxol/Carboplatin/Herceptin. Now I begin Herceptin only infusions every 3 weeks for a year. There is a TCH thread on the Chemotherapy session, so I think this is pretty widely used.

Best wishes to you -

Sue

snowyday

Thanks ladies, I was asking because I asked my onc what my treatment would have been if they had read the report stating I was HER, she looked me in the eye and said the very same. Well I had FEC D and as far as I can see it's different.  I just wanted to know, so next time I speak with her I will ask her to be honest with me. Thanks again

lisettemac

I had ACT, dose dense.  Then 1 yr of Herceptin.  I was 1.1 cm, Stage 1, Grade 3, no node involvement, ER/PR+ and HER2+.

I'm not sure you can really say that there is a "standard" protocol.  One onc recommended AC only on a 3 week schedule, followed by herceptin.  The second onc said there was a "good argument" for that approach -- less risk of recurrence = less treatment.  But, he said he thought that was like buying a Chevy when a Cadillac was available.  He wanted to give me the "Cadillac" because he said he didn't want me to feel like I left something on the table.  <shrug>

Which one was "right"?  Who knows?  Was the extra necessary?  I may never know.  Was the extra risk of heart damage worth it?  Again ... I'll never know.

Just wanted to let you know that I think it would be perfectly reasonable for diff docs to disagree.

Does your hospital have tumor board?  If so, you could ask that your case be submitted ...

Best wishes to you.  I know that this is just eating away at you.

lisa39

I had 4x AC and 4x Taxol, will soon start 21 rads and am a few months in to a year of Herceptin.

My oncologist said 4 AC and 4 Taxol was the 'gold standard' of chemo for HER 2 + tumors.

otter

I'm not HER2+, but I wanted to point out that Snowyday lives in Canada, and that might have influenced her onco's decision about what chemo regimen to use.  For instance, I think Adriamycin is used more often in the U.S., while Epirubicin is used in its place in Canada.  So, the "AC" here might have been "EC" in Canada.  I also don't know how often Taxol would have been used in Canada last fall, when Snowyday had her chemo.

The key difference, of course, is that Herceptin would have been added for a HER2+ tumor.

otter 

lisa39

I live in Canada too and still got AC and Taxol....just an FYI

swimangel72

I'm the odd person out - my treatment has been so different, I haven't met anyone who's getting what I'm getting. It made me nervous, so I wrote to two different oncologist "friends-of-family" and both said not to worry - that oncology is part art as well as science. Also - I switched oncologists, and my new oncologist agrees with the treatments I've already had. Since my tumor was "only" Stage 1 and Grade 1, I fell into a "grey" area where Herceptin was needed, but not the big guns of the other standard chemo drugs. My oncologist didn't want to increase the risk of damage to my heart, nor cause me anxiety with hair loss. The studies he looked at showed that Herceptin is effective as long as it's given with ANY chemo drug - so he put me on Navelbine every two weeks for 4 months, with Herceptin continuing for a year. Also, since I'm ER+ 90% I'll be on Arimidex for 5 years once I'm finished with the Navelbine. Sometimes I still get nervous thinking how different my treatments are from everyone else who's Her2+ .................but having had a mastectomy gives me confidence that I took a "big gun" approach with my surgery.  Ultimately my prayers help me to stay calm - and trusting in God's will.

cdccpa

I am doing neoadjuvant chemo and am Her2+.  I'm getting AC x 4 cycles and then will start weekly Taxol x 4 cycles plus Herceptin.  Hoping for a lumpectomy to be possible after the tumor shrinks from chemo, and then would have rads after. 

Carolyn

BMac

Hi, Snowyday.  I am from Canada.  I had three cycles of FEC and then three Taxotare, which is when I started my Herceptin which goes on for a year.  Just a Canadian point of view.  That sucks that they missed your HER2+.

snowyday

Thanks everyone, I haven't  been on the boards much, sort of fell into a depression, and finally realized I can't climb out of this one myself so I'm now on antidepressants. Have to wait though until they kick in 4-6 weeks, should have done this sooner. 

What I'm wondering about is that my hospital wants to put me on herceptin only for a year, and it doesn't make sense to me.  Also wondering if my chemo (finished in Nov) will still help along the herceptin.  Has anyone ever taken only herceptin I'm getting on to ten months off of chemo and wonder what the herceptin alone will do to the proteins if the proteins change what will they turn into on herceptin alone, I just don't get it and I don't trust the drs. anymore. I very confused if anyone has an article on how herceptin works and about how if could work alone I'd love to read it.   Thanks everyone.  Dazed and confused.

BMac

Snowyday, I don't have any answers for you, just sending (((((hugs))))).  Take care of yourself.

Tucheta

Hi Snowyday

Have a look at http://www.herceptin.com/adjuvant/what-is/index.jsp

I am also currently trying to understand more about Herceptin and the various treatment schemes, as I am going to receive it after I finish chemo (AC + Taxotere).

Hope this helps a little bit

 Hugs

Ralu 

DianaT

Hi! I had 4 rounds of epicubicin/cytoxen and 4 rounds of taxotere/herceptin with continuing herceptin for 1 year ~ done every three weeks.  My oncologist said that studies have shown that the herceptin is our miracle drug and with his patients that were early stage Her 2 + and did not receive herceptin years ago, he called back when the gov't allowed herceptin for these stages. Some had finished chemo years before but thought that the drug was enough of a benefit, it would be unethical not to give them the medicine.

 sorry about misspellings, I am tired.

lisettemac

Snowy -- here's another ((hug)) to you.  Hope you're feeling better soon.

As for the Herceptin your hospital has proposed, I don't know much about combining herceptin with chemo.  But I do know that I started my herceptin while still getting Taxol and then continued it thereafter.  The usual course of treatment for Herceptin is only one year.  So, it doesn't seem "wrong" to me that they would think that you can take Herceptin now (even though you've finished chemo) or that they are recommending a 1 yr course.  I hope this helps.

Anonymous

I had A/C and T/H. My onc told me they hold off on Herceptin because Adriamycin is cardiotoxic and so is Herceptin, so these two drugs are not given together. I do beleive they want you to get started on the Herceptin as quickly as possible, but I think in your case starting now would be the best thing you could do.

I also recommend the herceptin website. I am on their mailing list and get all sorts of info all the time. There is probably someone there that could answer your questions, as well.

Best of luck, Snowy..... I'm so sorry for all you're going through.

Miss S

Caya

Snowy - 

I live in Toronto, was diagnosed in the fall of 2006 - I had 3 x FEC, followed by 3 x Taxotere, then one year of every 3 week Herceptin infusions, which I finished in May 2008.

FEC is a common chemo regime here in Canada, my onc. added Taxotere because of the HER 2+. 

I was treated at Mount Sinai Hospital in downtown Toronto.

snowyday

Just found some really interesting info on herceptin I still haven't started it yet, I'm going to visit my sons first just in case I can't later, it 's only for a week but I feel I have to do it. But this information covers everything about herceptin and I received each chemo therepy that they are saying there could be an interaction with.  I'm scared to death and don't know why. I know it's a good drug from what everyone is telling my but the fear is nasty, I wish it would just go away. Here is the link this is page two but one page one it discusses the fingernail problems. http://chealth.canoe.ca/drug_info_details.asp?channel_id=0&relation_id=0&brand_name_id=1402&page_no=2

What other drugs could interact with Herceptin?

There may be an interaction between trastuzumab and any of the following:

• doxorubicin
• epirubicin
• paclitaxel

If you are taking any of these medications, speak with your doctor or pharmacist. Depending on your specific circumstances, your doctor may want you to:

• stop taking one of the medications,
• change one of the medications to another,
• change how you are taking one or both of the medications, or
• leave everything as is.

An interaction between two medications does not always mean that you must stop taking one of them. Speak to your doctor about how any drug interactions are being managed or should be managed.

Medications other than those listed above may interact with this medication. Tell your doctor or prescriber about all prescription, over-the-counter (non-prescription), and herbal medications you are taking. Also tell them about any supplements you take. Since caffeine, alcohol, the nicotine from cigarettes, or street drugs can affect the action of many medications, you should let your prescriber know if you use them.

jembs

Hi Snowy, I am in BC. I was dx Her2+ then -, retested - and then + so by the time the tests were all done my chemo was done and I had started radiation.  My chemo was FEC x 6 and after radiation Herceptin every three weeks for a year.  From what I understood my chemo would have been the same either way. 

I was nervous about Herceptin, but really it was ok, not a piece of cake, but certainly OK compared to chemo.  The MUGA's were a huge pain in the butt because chemo destroyed my veins and I refused a port.  There are a number of se's but liveable if you know that is what they are.  www.bccancer.bc.ca has some good info on se's.  You are right, my nails became like paper - I used to use them as screwdrivers but they did come back.  The frustrating thing was that I didn't know that is what it was.

Hugs, hope you zone through this.

Dennis

Hi Snowy, 

My wife has Her2+ as well.

Mammogram 3 months earlier did not detect breast cancer.

Her doctor said X-ray can detect cancer with the present of calcium.

Since her cancer has no calcium, mammogram didn't work.

She has a mastectomy. She started Chemo on October.

Her treatment was 4 AC 4 TH 1 year Herceptin.

From what I read,  Taxol + Herceptin combination give the best result.

Herceptin by itself almost like a vacine.

Diana1993

Hi Snowday,

Glad to hear you are treating the depression.  I was dx in 1993 and herceptin was not available at that time.  I had the standard treatment mastectomy, chemo and radiation.  I seemed to be home free for 5 years and then problems began.  I won't go into details, but during the following years after a each new mets was discovered I have taken Tamoxifan, Femara, Aromasin.   I learned in 2003 after a hysterectomy, that the cancer was everywhere they investigated and at that time I said "no more" but still carried on with tests.  In 2005 tumours were blocking my ureters and stents were in inserted on both sides and I agreed to taxotere and herceptin.  This past Jan. I was taken off herceptin and put on xeloda. (pills).  I am currently trying to get lapatinib approved in Canada.  So far I have been going in circles but I keep trying.  I can get it in the U.S. but it cost $3600 a month, far beyond my means.

Also, check her2support.org.  They also have great information.

Hugs,

Diana.