ixempra or her2 drugs?

eric · 02-04-2009, 08:09 PM

As a result of progression after a short time on Avastin/Abraxane Caryn's Onc has suggested Ixempra. Anyone with any experience on this drug?
Also, it doesn't appear to me that she has had much success with chemos but she has responded to her2 targeted therapies. The Onc wants to take a break from her2 therapies since she did herceptin until '06 then has been on and off (mostly due to side effects - liver enzymes) several trial drugs targeting her2. With the cancer now in her liver and pancreas I'm anxious to knock the cancer back. I have more confidence in her2 based therapies but I respect the docs thoughts to take a break and have as ammo later on. I welcome your thoughts?
Eric

Pam P · 02-05-2009, 05:16 AM

Eric -
I'm sorry I have no insights into your important questions. I just want to say you and Caryn are both in my thoughts & prayers as you decide on the next treatment and that it will kill off the cancer cells.
If the herceptin causes issues, has tykerb ever been tried with a chemo?

eric · 02-05-2009, 07:32 AM

Thanks Pam. There were no issues with the herceptin. The doc just wants to save it. Caryn did go onto Tykerb/Xeloda which didn't work for her, but thanks for the suggestions.

Sheila · 02-05-2009, 07:57 AM

Eric
I guess I don't understand the onc. wanting to "save" the Herceptin, since Caryn is showing progression. I would vote for the Ixempra with Herceptin...I believe Chrisy was on Ixempra, but then that could be my confused chemo brain. Sending prayers and thoughts that the correct treatment will be found for Caryn to rid her of those nasty liver and pancreas mets. I have been on Herceptin for 5 1/2 years, with and without chemos, but it has kept my mets confined so far.

vickie h · 02-05-2009, 10:38 AM

Eric,
I just started Ixempra last week and so far, so good. I, too failed the Tykerb/Xeloda last year. I have been off Herceptin for over a year now and am hoping to add it back into the mix. I'm not sure about waiting to do chemo with such progression. Have you gotten a second opinion? Let me know if I can be of any help as far as the Ixempra goes. I'll know a lot more about it after my second and third rounds. Prayers to you and your family coming. Love, Vickie

Julie2 · 02-05-2009, 10:58 AM

Eric,

In my opinion if it is still Her2+ disease, it definitely make sense to use Herceptin. Even though she had progression on Herceptin it is still useful to control the disease. There are some trials with other Her2+ drugs like neranib etc.. If she doesn't qualify for the clinical trials you can just use Herceptin and Navelbine or Herceptin and Gemgar or something with Herceptin. You can use Her2 serum test to see if she is still strongly Her2 positive.

Julie

chrisy · 02-05-2009, 02:43 PM

Yes, Sheila, it is chemo brain. I've not been on Ixempra, I had Tykerb + Avastin (remember the tissue challenged hotel room!)

However I do agree with keeping a her2 targeted agent in the mix if possible. Eric, unless that is CAUSING the toxicity (which it probably isn't), usually the recommendation is to add chemo to the herceptin. Getting positivity rechecked would also be prudent tho. I don't remember what all Caryn has been on in trials, but remember it wasn't the herceptin piece that caused the issues with the DM1 trial - it was the DM1 piece.

Ixempra has been getting a lot of good results in taxane refractory bc, so it would be a good choice. It does also have some liver tox so you'd have to watch that. It's a proven therapy vs. some of the early trial drugs, too.

hang in there
chris

eric · 02-05-2009, 05:23 PM

Hi all,
I appreciate all of your feedback. It reinforces for me that I did the right thing as I decided to shoot her Onc an email yesterday to let him know my concerns. Happily he very easily agreed to add Herceptin to the regimen. He looked into her2 trials as well but feels that she's better off with the Ixempra/Herceptin at this point.
I feel better now that the big H will be part of the mix.
Thanks and love to all,
Eric

chrisy · 02-05-2009, 05:32 PM

Eric, I wish Caryn the best of success with this one. She sure deserves a break - and a treatment that works without being too difficult would be a good one.

There was a lot of talk at San Antonio on the epothilones (ixempra is the first one approved), so there's a lot of interest and enthusiasm on it. I hope it works well for Caryn.

Besides DM1, the most discussed her 2 targeting drug was the new one called neratinib. It had good efficacy even with people who had prior herceptin AND tykerb. However, the side effects were pretty severe diarreah in just about everyone. Seems people were able to deal with it eventually as there were no trial dropouts due to this, but it probably is not the best thing to mess with at this point if you have other good options.

Love and prayers,
Chris

Kavy · 02-09-2009, 11:25 PM

Eric,
Sorry to hear that Caryn is having progression. I hope and pray that Ixempra/Herceptin will be the right combo to get rid of the mets.
I am on this regimen since October last year, after having progression with Nalvabine/Herceptin (stayed on it for 18 months), Gemzar/Herceptin (6 months), Xeloda/Herceptin 3 months only), not counting Epirubicin, Cytoxan and Taxotere I had before.
My oncologist is very excited about this combo, he said all his patients on this drug are responding to treatment. I do not know about me yet, because my CT scan will be on Feb 20, I pray it is working for me too.
The side effects of Ixempra the first time for me were very strong, and the doctor lowered the dosaqe. I was very tired the week of treatment with shooting pains all over my body (neuropathy), numbness in hands and feet got worse, no nausea or vomiting, lost my hair for the third time. Since the doctor lowered the dosage, the shooting pains are mild, I still feel tired on the week of the chemo, but not as much. I think my body is starting to show signs of the almost 4 years of non stop chemo. My white and red blood counts are holding normal though, I just missed treatment one time because low white counts, but no need for neulasta or arasnep.
I suggest you go to breastcancer.org, discussion board, recurrence metatastic, and read a long thread named "Ixempra, my Experience", there is a lot of information about side effects there.
Let me know if I can help.
Vickie, let me know if I can be of help for you too.
I pray that Ixempra/Herceptin will bring all of us to NED.
Hugs,
KarlaV.

Sheila · 02-10-2009, 07:07 AM

Eric
So glad to see that the Dr agreed to add the herceptin to the Ixempra....many of us have had progression,,,they usually change the chem but keep the Herceptin....I am sending prayers that this will be the magic combo for Caryn...she deserves a break!

Joy · 02-12-2009, 08:56 AM

Just wanted to reaffirm the herceptin decision as data shows it still helps despite progression (my situation currently). And I wanted to say that you and Caryn are such a team, such fighters and my prayers are strong for both of you. I hope you have time to take care of yourself as well. Best wishes on the new treatment!

eric · 02-12-2009, 08:59 PM

Thank you all. Joy, it was nice to see you post again recently as I was wondering how you were doing. How'd everything go with the new guy that you had posted about a little while back?
Eric

jones7676 · 02-13-2009, 06:23 AM

A.) I'm no expert ....but....

I am currently consulting with several medical sources due to progression. I had my Herceptin yesterday, at MY request - onco waiting while I consult seemed to schedule it just to keep me happy. I can tell you that the old bone met I have which is sending mild pain signals today (treatment yesterday) that my body is working on it......

The onco I see treats many kinds of cancer, so I often print off info and give it to him when I go in as I seem to know more specific info/sources - doesn't always help but it is the best I have available.

I also have a friend that started stage IV and has received the Herceptin steadily since (4 years) and has not had a recurrence and they believe for her that it has been a significant reason why based on her readings, treatments etc....

I wish you luck....and I hope they assist in the correct manner for success. I would be collecting all the info you can get to back you up!