When Herceptin stops working, then what?

[sfernando]

I'm HER2++, ER & PR negative. I had 5 of 6 every three week carboplatin/taxol and herceptin weekly before my cancer started to progress.

Then we tried Gemzar with Herceptin. My cancer grew twice the normal rate, doubling in number and size in those 45 days.

I'm now off herceptin and will be starting Navelbine tomorrow.

What else is there for hormone negative/HER2 positives when herceptin does not work?

Sharon

[Alice]

Sharon,

What stage were you at diagnosis? Also what grade?
I also had carboplatin-taxol-herceptin (after 4 a/c)but I had the carbo-taxol-herceptin weekly and just the herceptin on the off week. I was also on the carbo as a study for pre stage 4 which was unusual. I'm wondering what the difference is in weekly versus every 3 weeks.All I know is that I almost didn't make it thru the treatment. It was really tough.There are other treatments out there has your onc suggested anything else?
Good luck let us know how you are doing!

[Shell]

Has your onc considered the stage III clinical trial of xeloda with or without lapatinib? I failed on herceptin, and this clinical trial is desinged for those who have failed herceptin. I am in the arm with just the xeloda, but it's working!

Good luck with things,
Shell

[jojo]

How much do you take Xeloda? What is your schedule?

I am on 3,000mg / day; 2 weeks on & 1 week off. I am also on weekly Herceptin.

There is no predetermined study data on the comparison of weekly VS 3-weekly Herceptin, because this drug is still very new. We will know better down the road, anyway.

[sfernando]

My original dx was a blooper. I had a mastectomy in December 04 for what was thought to be early stage 1, er/pr negative, her2 positive. I had no further tests, no scans, no treatment. I had the mastectomy so I didn't need the rads. I was declared cancer-free and told to come in for follow-ups every three months.

I had my first 3 month follow-up, including extra mammos and ultrasound because they thought they saw something in my extremely dense white shots. Then they sent me away, saying it was nothing but cysts.

Five weeks later, as I was sitting at the computer, I absently felt for my collarbone on my "healthy" side. It wasn't there!

It took three weeks of tests and scans before treatment started. They couldn't find the primary. I KNOW it was in my "healthy" breast, for several reasons that I stated to the doctors. After plenty of research, I'm convinced it is invasive lobular that started the whole thing.

I go today to see if I can start Navelbine, and tomorrow I'll have my first PET.

I will ask about the Xeloda Lapatinib (sp?) trials. That does sound promising.

Thanks,
Sharon

[Cindi]

Sharon,

After my Onc. decided that Herceptin wasn't working well enough for me, she switched me to Gemzar and Avastin. Avastin has been approved for BC. But, she couldn't leave me on Herceptin with the Avastin (no studies have been done to prove that that is safe), so I am flying without my Herceptin. From your story above, it sounds as though you have really been through the ringer.

Remember to be proactive as possible with your treatment decisions. Second Opinions from other Onc. is always an option. Lapatinib may even become FDA approved early 2006. I am HOPEful for that too.

Stay strong and keep the faith.
God Bless,
Cindi.

My Profile:

Diagnosed 4/2002, left mastectomy, lymph node dissection, Age 41.

Stage 2A, 1/11 node pos, ER-/PR-, HER2+++, Treatment – AC, then weekly Taxol. 52 weeks of Herceptin through clinical trial (completed trial 11/03) –No more Herceptin.

5/24/04 – Locoregional Recurrence to axillary lymphs . A total of 2 nodes

found under arm. CT, Bone scans showed no other areas involved. PET scan showed

2 other nodes in Third level of axillary nodes, again no other areas involved.

7/13/04 – Surgery to remove 2 other nodes.

8/5/04 – began Navelbine/Herceptin treatment…3 weeks on / 1 week off for 4 months.

10/4/04 – Punch biopsy positive for skin mets on left breast area (Doctor still thinks it’s

locoregional.) Had a very mild rash that wouldn’t disappear.

10/28/04 – Began daily Hyperthermia radiation for 4-6 weeks for skin mets.

Onc. Will schedule a PET scan after rads are done.

10/28/04 – Began daily Hyperthermia radiation for 6-8 weeks for skin mets in Ann Arbor. Received 1000 mg/day of. Xeloda too. Rash is disappearing, good progress. No negative skin reaction (yet).

12/28/04 - Rads complete!

12/28/04 - PET/CT fusion done.

1/4/05 - Scan results were negative!

2/10/05 – PET/CT fusion done again as a followup

(because the last PET/CT was done the same day Hyperthermia Rads ended)

2/11/05 – Scan results were negative again!!!!!!!!!!!!! Praise the Lord! Now on Herceptin every 3 weeks.

4/8/05 – Biopsy results confirmed that skin mets are back. They are in the lymphatic dermal layer of my skin. Have traveled down my left arm.

4/11/05 – PET scan results show that recurrence is strictly skin mets. No other evidence of disease.

4/14/05 – Onc. has suggested treatment plan of one week on Cytoxan (pill form), then one week of Cytoxan and Xeloda (both are pill form) and then one week of Xeloda. Then begin again on this three week regiment until remission. Still receiving Herceptin every 3 weeks.

9/28/05 – MRI is suspicious of cancer returning. This is due to much nerve pain in my left arm. Left on 9/28 for my lifetime trip to Europe with my husband. I put my BC on the BACK BURNER!!

10/5/05 – PET scan has two small areas light up around the radial plexus of my left arm. Now on Gemzar and Avastin for this and continuing small area of skin mets.

11/22/05 – Maybe it’s working. The nerve pain has greatly dispated, but still not totally gone. Skin mets still there, maybe a little less red.

[sfernando]

Thanks everyone for your replies. My counts were good enough to start Navelbine today. I asked Research about the trials, and they are looking into them for me. Seems like I don't qualify for the Xeloda/Lapatinib one since I didn't have Adria or related chemo previously. It will be an option once I've had it, as it's a fairly new trial. Thanks for the info.

Sharon