Herceptin Post Treatment

[MeganinHouston]

I completed 12 weeks of Herceptin combined with dense dose Taxotere and Navelbine in December 2003 and still appear to be in remission. I discussed the possibility beginning Herceptin again to complete a full year with my oncologist.

My oncologist does not believe that this will be effective. I believe that I heard somewhere that the Mayo Clinic was using Herceptin on patients who were a few years post treatment like me. Is anyone familiar with this study? I am meeting with my oncologist on 1/06 and would like to discuss it with him again.



Diagnosed May 2003, age 29

Stage 2B, Er+++, PR+, Her/2Neu+, Grade 2, +1/13 nodes

12 weeks Herceptin, Taxotere, Navelbine

12 weeks AC

Bi-lateral mast with tissue expander reconstruction

[Mar]

I had grade 3, HER2/neu with overexpression, 3 positive nodes and am hormone negative.I was told all of this made my cancer quite aggressive. My path report stated:PROGNOSIS POOR, which still makes my blood run cold with raw fear! FInished chemo about 1 1/2 yrs. ago. I took Adremycin, Cytoxin, and then, for me, terribly toxic Taxotere. Taxotere has caused severe Neuropathy, which has left me barely able to get around some days due to severe pain in my legs, arms, and groin/pubic area. I took these every 3 weeks x 4(Sloan Kettering program). I was told at the time I couldn't get Herceptin as it was still only allowed for recurrence or in trials. I also want to know now that it is standard treatment for first time Her2/neu breast cancer patients if I should take Herceptin for one year too. My oncologist said she didn't have any data one way or the other on wheather I should take it and changed the subject! What in the world does that mean and doesn't that leave me out in my canoe, alone, without a paddle? I feel like I am slipping through the cracks, so to speak, and am possibly being denied the only new tool that has ever come out that actually might help HER2/NEU patients stay in remission longer. HAS ANYONE ELSE OUT THERE FOUND ANY HELP OR INFORMATION ON THIS SUBJECT.

[Gina]

Hi, Mar,

I was so sorry to learn of all you have been through. My case was very similar to yours...it sounds like you are pretty young..I was 33 when I was DX...a single mom with a young son...Jordan..then, only 6. I had a 5 cm tumor with 6 of 14 nodes positive...I, too, took all that strong chemo (and back in 1997 and 98--trust me..it was even at HIGHER doses than you just received...). I lost my hair twice..first from the CAF and then, from the horrible taxotere that even took out my eyelashes and eyebrows...those were horrible times...I remember...though mostly, I try to forget...the good news is that even though I mets in 1999, by then, thank goodness...HERCEPTIN had been approved by the FDA in Nov. of 1998 and I got to it just in time as the 12 her-2 lesions in my liver were pretty much killing me. Herceptin was like a miracle for me and SO MANY others on the board...

Also, keep in mind that in the past years prior to Herceptin..the prognosis for the dx you and I share (I am also her-2+++ and ER- PR-), was truly horrible...but now, thanks to Herceptin...we are actually in a much better category...somewhere in the middle... Naturally, the hormonal positives with her-2 +++ are usually classified in a little better position as in addition to the herceptin..many of those folks can use tamoxifen or arimidex or other hormonal targeting strategies in addition to the Herceptin. On the upside though, without hormonal involvement, we can have a very high quality of life...many of us can keep our periods as long as normal...I am still getting mine and have NO hormonal complaints--and when you are already ill with one thing...that is good not to have to worry about other things..so you see, you really are in a good place, but YOU MUST convince someone to put you on the Herceptin...this is NOT theory..this is standard protocol and if you do not get access to the Herceptin for at least ONE year following your treatment you just received you will indeed "fall through the cracks" and that is why this board with all its lovely knowledgeable folks are here for you..to help you not make even one mis-step..and we have already..made them all..if you only knew how many wrong turns I made in my treatment decisions and all the times I failed...(mets more than 7 times ), well, you would not even believe I could still live...but live I do and with an excellent Quality of life. My son is now 14 and taller than I am..smile...I celebrated my 8 year anniversary since Mastectomy this past November, I still use Herceptin with great benefit. You can too...don't be afraid to stand up for yourself and fight for it...for many of us on this board...had we NOT fought for the Herceptin...we would long since be 6 feet under...and that ...though morbid...is no joke...Remember..in the end, it is YOUR BODY and YOUR life....you do have control over some parts of this dreadful illness...you can perservere...and you don't have to go it alone...that is why this board is here. Also, if you are still PRE-menopausal and are sure you are ER- and PR-...try 500mg of pure Evening PRimrose oil tabs each morning...should cure or considerably lessen the taxotere -induced neuropathy within 14 days...but keep taking it..just one 500mg tab daily as it is also rich in oleic acid that has been clinically shown in test tubes anyway...to push back the her-2. Read the other places on the board for other cool tips and alternatives that REALLY help.

Stay Brave...Stay STrong,
Gina
GPopp@Comcast.net

[RobinP]

Meganin I have a friend on another breast cance board, similar stage as yours and er,pr+ and she is getting late adjuvant herceptin, recommended by the Rochester Mayo. Many others like you too on these boards are getting late herceptin if you look up late herceptin in the search section.I am pursuing late herceptin as well for stage 1 her2+bc.

Mar, seek out this late herceptin is my best advice as herceptin is more effective apparently the sooner you get it. See Val on these boards, she is also stage III, getting a year of adjuvnat herceptin.

[firstplace]

Thanks for the news. Do you think taking herceptin for only a year is enough for aggressive her2+ cancer of the breast?

In Jesus' magnificent grace,

Kathy

[Unregistered]

Opinions on this board will vary on that question. However, I personally believe that a year of Herceptin is adequate in most cases, unless PERHAPS if you have stage three breast cancer. In stage three, the risk of relapse would be so much higher that you PROBABLY would want to cover the peak time of relapsing from her2+ breast cancer which is at 12 to 24 months. Some on these boards have gone for 2 years of coverage with Herceptin with even stage 1 or 2. But that is a personel choice. Becky knows a lot on this topic and I hope she comments here. Just keep in mind there are a lot of variations of choices out there and in the end only YOU can decide what is best for you. Good luck.

[Becky]

There has been some preliminary talk "out on the street" from our friends at Dana Farber that 2 years of Herceptin will show better results than one year. However, the difference won't be worth the time and expense. For example (and this is only an example), in the Hera trial, one year of Herceptin after chemotherapy decreased the risk of recurrence by 46%. It was implied, to my onc from an onc at Dana Farber, that 2 years of Herceptin increases this to 49%. In reality, this isn't even statistically significant. Secondly, via logic, my onc and I discussed this at length months ago and decided together to extent my Herceptin treatments beyond one year to include 5 extra every three week treatments. This covers me beyond my 2 years of diagnosis (Aug 27 is my date but my surgery was Sept 23 so that is the date we are covering so my last Herceptin will be Sept 29. My year was June 16).

So - does 2 years of Herceptin do a better job or is it covering the first 2 yrs from diagnosis (the most vulnerable time?). Since I started Herceptin 4 months after my last chemo, I did not have to take that much more to cover this period. Also, you do need to take into consideration Herceptin resistance which the average time is 3 yrs (in case you do need it again to push back the demon).

Lastly, the comment on Stage 3 needing more time on Herceptin could be valid. I am sometimes somewhat embarassed since I am Stage 2A (less than 2cm tumor with one node minimally involved). But, we all have to do/fight for what we think is best in each of our cases and help each other with as much information as we all have.

I hope this helps.

Kindest regards

Becky