Herceptin & AI questions
 

Hi! Question: How long is "long enough" to see if a treatment approach is working? I am trying Femara and Herceptin (every 3 weeks) and have been on this since end of August. My 2nd opinion doc at Johns Hopkins recommended this, but said it's an approach that takes a while to work. I just had a pet/ct scan last week which showed some progression, and am meeting w/ my onc this week to discuss what to do next. Also, I've noticed that about 7-9 days after my Herceptin treatment, more times than not, I'll wake up with a migraine, vomiting, etc. which lasts a few to several hours, then disappears. I don't have a history of migraines. I was thinking migraines were sometimes caused by estrogen levels dropping, but I didn't think I would still cycle at all (ovaries out two years ago and loving that!). My onc said this wasn't a typical side effect of the herceptin/femara. I had been on herceptin & tamoxifen a couple years ago (significant progression then!) and didn't have these symptoms. Anyone have any ideas or similar experience? Thanks! (PS I need to update my signature - obviously no longer NED)

Liz: Wasn't your onc troubled by these symptoms? Have you had a brain MRI? Maybe you should re-address with him and see if he will arrange for one especially since it is not a typical se and you are HER2+ with mets to the vertebrae.

Wishing you well and holiday cheer!!

Darlene in Virginia Beach

Hi Darlene, thanks for your response. I met w/ onc yesterday and with everything we talked about I forgot to tell him about the migraines still happening. I haven't had a brain scan in 2 - 2 1/2 years since orginal metastasis was dx. Onc has said in past that unless I'm having headaches that don't go away we can hold off on brain scan, but I guess I didn't think of my migraines as fitting that category, assumed it was hormonal. Now I will definitely follow up with him. I'm sorry to see you have been dealing with brain mets, did you have headaches/symptoms or was it found during initial/staging tests?

Liz: I am glad that you are doing the brave thing and checking with your onc. I know it is a way scary thing to even be concerned about it, but, the best treatment options are only there if you catch them small in number and small in size. And better yet, NOT AT ALL, which is what I hope is the case for you.

My onc is a scan-a-holic, luckily for me. He says he can't battle what he can't see, so he never hesitates to order scans. He orders regularly for HER2+ mets gals since the stats suggest a higher chance of CNS involvement. I am also hormone negative, which was also a flag to watch closely.

I was dx in Dec 07 with staging scans and had scans with a Brain MRI end of March and he wanted to do CT, Bone, Muga scan in 4 months with another brain scan in 6 months so I had another 08/21/08 that revealed the effing brain mets. I did not have any symptoms and my liver was clear and my tumor markers were at 11.

This is one sneaky, mean disease. Tough trying to stay ahead of it!

I will be hoping it is, as you suspect, hormone related migranes and will be looking for a response from you that all is well. Hope you get some relief soon.

Have some happy holiday times......

LOL Darlene in Virginia Beach

Liz,

Good thing that your oncologist is aggressive. My oncologist has been very calm and I ended up having recurrence after recurrence.

Didn't mean to scare you. But when I was having brain tumor symptoms (congenital; unrelated to BC), one of my doctors (switched a couple of family doctors because they just thought I was 'crazy') thought I might be having migrain. And vomiting, though common side effect of chemo and/or Herceptin, is one of the neurological signs doctors look at. In 1990, while I was waiting for my brain surgery, that was one of the things my doctor had told me to watch for - go to emergency room at the first sign so he could operate right away.

Can you request for an MRI? That will give you a definitive answer (at least for a while) and peace of mind.