Has anyone NOT had success w/ herceptin?

[blueiris]

I am new here, but not new to bc. I was originally dx in May 2003 at age 23 with IDC. Er/pr- and Her2+++. In Aug 2004 I was dx w/ multiple lung mets in my right lung. I started herceptin and navelbine. My tumor markers (ca27-29) continued to rise, so we tried Xeloda and herceptin in Nov., then taxol/taxotere, gemzar and herceptin for Dec and Jan. In Feb I had my lung drained and started Adria,cytoxan and Avastin, stopping the herceptin. My counts dropped significantly and continued dropping until April. In May I switched to doxil and avastin, only did 2 of those. In June I had scans done and found out that I now had 2 spots in my left lung. So switched to cisplatin and vp16 for 3 days every 3 weeks. Did that once and it made me really nauseous, so then did carboplatin and vp16 for 3 days every 3 weeks until Aug. Had scans done in Aug and I had been stable since the June scans. Went back to cisplatin and did that a few times by itself just one day once a week. My counts dropped really low, so had to get blood in Aug. Two weeks ago I had another blood transfusion and we went back to cisplatin and vp16 over 3 days. I feel really good right now, it didn't make me nauseous and I am no longer having lower back pain like I did beginning in May I think. I go in friday to see my onc and was wondering if I should ask about trying herceptin again. I was thinking maybe it will help now that I am taking a chemo combo that seems to be more effective? Is it possible that I was her2+++ in 03, but not when it recurred? I can't find if it was retested in my notes, but I think it was and was her2+ or else my onc wouldn't have recommended the herceptin in the first place. Right? I know that I went into a lot of detail, but I think that you all are probably the most knowledgable about herceptin compared to other bc sites and the most likely to be able to help me. Thanks in advance.
Blue

[jojo]

I am sorry that you have been going through a lot for the past year.

I am not the most knowledgeable person about Herceptin. But all I do know is that Herceptin seems to be more effective in conjunction of a taxane chemo (Taxol or Taxotere) -- comparing to other chemo combos w/ Herceptin -- based on SOME data.

Herceptin does not work for some people withOUT chemos, like me & a few others on the board. I responded the best to the Taxol & Herceptin combo, rather than Herceptin alone, or even A/C by itself. (Darn it! Oh well) There ARE some people, though, that can do very well on Herceptin alone.

It wouldn't hurt to ask your onc if you could take Herceptin again. Keep us posted & good luck.

[Lolly]

Cisplatin and Herceptin are a potent combo. If you're tolerating the C. well, it makes sense to ask about adding Herceptin back in the mix, as it has been shown to be very effective in combo with certain chemos. Good luck, sounds like you're on the right track now!

<3,
Lolly

[Shell]

Good morning-

Herceptin does not seem to work for me either. I have had it in combo with navelbine prior to my 1sr reoccurrence and taxotere prior to my second reoccurrence. My onc recommended xeloda, and thus I entered the clinical trial for xeloda with or without lapatinib. This trial appears to be designed for those of us who have failed herceptin. I am in the arm w/out lapatinib, but scan results have been great to date. Tumor markers don't seem to tell a whole lot for me, so we rely on my symtoms (if any), and the scans. My counts are usually pretty low, but I am taking iron and B6 as well...

You appear to have been taken off xeloda pretty quickly - did you experience symptoms?

Kind regards,
Shell

[Amy]

Hello,
God love you....you have been through so much for being so young.
I was dx this past Jan with IDC ER-/PR-, Her2+++ at the age of 39. Had a lumpectomy and was node negative, but given the her2+++ component...I had 4 rounds of A/C followed by 4 rounds of Taxol with Herceptin and continued with weekly herceptin....my cancer continued to thrive.....discovered new lump in same breast 3 weeks after I finished my last round of Taxol and scan showed multiple nodules in both lungs. My Onc wanted to stop herceptin and just put me on Xeloda, but another Onc thought that trying the 2 together was worth a shot. So, that is what I'm currently doing. It's only been 3 weeks since I started the Xeloda and herceptin combo. Too early to really tell if it's working. I had a chest x-ray on Mon. and will see my Onc today to see where we are. She says that if she sees improvement, she wants to take me off the herceptin and leave me on Xeloda....and...see what happens. This is such a "wait-and-see" game isn't it??? Herceptin has proven to be such a promising drug for many her2 women.....I'm having a difficult time coming to the realization that it may not work for me. I wish you well....Take care, Amy

[jojo]

Hi Amy,

Why are you in the arm without Lapatinib? Is it because you don't have brain mets? Just curious... where is this trial being investigated?

I am on Xeloda, and I had brain mets (assumingly clear at the moment). Just wondering, if the combo of Xeloda & Lapatinib might be of any benefit to me....

Best of luck to you!

[Beth]

Dx stage 4 I had total remission with Taxol/Herceptin. Recurred and went on Taxol/Carbo/Herceptin and had progression. Just had progression on
Navelbin/Herceptin. I am going to be tested next week to get into
phase I study of the PTEN vaccine. I have to have a skin test and
brain scan to qualify. Here's some info on the trial.
Suppressor gene linked with breast cancer treatment response
Reuters Health
Posting Date: August 23 2004
Last Updated: 2004-08-23 12:00:05 -0400 (Reuters Health)

NEW YORK (Reuters Health) - Inactivation of the tumor suppressor gene PTEN in breast cancer cells is associated with resistance to trastuzumab according to a report in the August issue of Cancer Cell.

"Currently the only clinically validated indicator for trastuzumab response is ErbB2 status " Dr. Dihua Yu from The University of Texas M.D. Anderson Cancer Center Houston Texas told Reuters Health. "Our data indicate that PTEN deficiency is a more powerful predictor for trastuzumab response than ErbB2."

Because less than 35% of patients with ErbB2-overexpressing metastatic breast cancer respond to trastuzumab therapy Dr. Yu and colleagues investigated whether the expression of PTEN an important tumor suppressor gene could predict tumor resistance to trastuzumab.

Brief treatment of cancer cells in culture with trastuzumab activated PTEN by increasing its translocation from the cytoplasm to the cell membrane the authors report.

The mechanism behind the increased membrane localization and activity appears to be the inhibition of Src binding to ErbB2 in ErbB2-overexpressing breast cancer cells leading to reduced PTEN tyrosine phosphorylation.

Cells with reduced PTEN showed significantly less growth inhibition by trastuzumab the researchers note but restoration of PTEN by inactivation of PI3K (which antagonizes PTEN function) overcame the resistance of breast cancer cells to trastuzumab.

PTEN reduction also conferred trastuzumab resistance to breast tumor xenografts in athymic nude mice the report indicates.

Moreover patients with PTEN-deficient breast cancers were significantly less likely than those with PTEN-positive tumors to have a complete or partial response to treatment with trastuzumab plus taxane the investigators report.

Dr. Yu said these results suggest that PTEN status should also be evaluated in preparation for trastuzumab treatment.

Because PI3K family protein inhibitors can help overcome PTEN-deficiency-mediated trastuzumab resistance patients who do not respond to trastuzumab alone (due to PTEN-deficiency) may benefit from trastuzumab used in combination with a PI3K family protein inhibitor Dr. Yu said.

"This needs to be validated in a well-designed clinical trial which [our] Breast Medical Oncology Department is planning to do " Dr. Yu concluded.

"For optimal success matching individual tumor signaling anomalies with a customized treatment strategy will ultimately provide the most effective way to take advantage of the ever-increasing list of new biological therapies for cancer " write Dr. Robert J. Crowder and colleagues from Washington University School of Medicine St. Louis Missouri in a related editorial.

Cancer Cell 2004;6:103-104 117-127.


So you can see phase I trials are underway and this is really exciting that
I am being considered for the trial. If I get accepted and this trial fails
and the herceptin won't work with the restoration of PTEN protein then we
will drop herceptin and move to another chemo. Maybe you could get into
this also.

Best of luck,

Beth

[Shell]

Jojo-

I am in the arm without lapatinib because it was solely random. Note that there are various clinical trials - this is one of the lapatinib clinical trials that does not involve brain mets, although I understand some other ones do. The trial has numerous locations, and you can check on clinicaltrials.gov and type in lapatinib and look for the one saying xeloda with our without lapatinib...

Amy-

I am off herceptin but having very good luck to date with xeloda - goo dluck with the comparison...

Shell

[blueiris]

Shell, I had no succes at all w/ Xeloda. It totally wiped me out and I ran a fever for weeks on end. I think it is bizarre how differently people respond. I know several ladies who had mets disappear completely from the Xeloda. It is supposed to be a good drug, just not for me.
I went to see the onc yesterday but he was really behind on appointments and so he kinda rushed our visit, so I didn't ask about started the herceptin again. That and I didn't remember I was going to ask until I was driving home. My blood cell levels and platelets were low enough that I got procrit AND nuelasta-lucky me! The good news about that is I won't be getting chemo next week, I will wait until the following week. My counts weren't low enough for me to need blood again, otherwise I wouldn't be happy, of course. Plus this way I will be able to research herceptin some more before talking to him. I have to say that I am really impressed with the people I have met on here. I will have to keep coming back.
Thanks all,
Blue