Her2+ and the brain

Hi all,

I have just been diagnosed with brain mets (three weeks ago). The onc has confirmed that the cancer is no-where else in the body (all tests clear).

My cancer is HER2 positive, but the path report could not tell if it was a 2 or a 3. They ended up sitting on the fence and saying it was borderline 2/3. How odd is that! It is PR neg and weakly ER positive (scored a 3). I have just had 5 WBR for the 7 mets. I am now down to 2mg of dex a day and so far so good. I wonder how effective radiation to the brain is? Fatigue is a bit of a pain but seem to be graduallly getting my strenght back.

I have to wait to 26 July before I see onc again. Just seems a long time.

Lassman 

(((((((((((((((Lassman)))))))))))))

My brain MRI appears to be clear - still haven't heard directly from the ENT doctor, but I called and his girl said he had the films on his desk and he had seen them and he would have called if there had been anything wrong - well that will do for me. I did ask if she was sure. Now at least I have a baseline picture and it does seem that I have a brain too

Sue

Hello ladies,

The newer anti HER2 drug, Tykerb (also known as Lapatinib), is a smaller molecule drug than Herceptin so apparently is effective in crossing the brain barrier.  I have cut and pasted some stuff below: 

About one-third of women with advanced Her-2 positive breast cancer find that the cancer spreads to their brain. Studies have shown that Herceptin does not appear to be effective at reducing this risk. In the Tykerb study, only 4 patients receiving Tykerb plus Xeloda experienced a relapse of cancer in the brain, compared to 11 patients in the chemotherapy-only arm. "While the results are not statistically conclusive, they do suggest that Tykerb may be effective in reducing the risk for the occurrence of brain metastases," Dr. Geyer said.

Glaxo officials believe Tykerb may have this effect because it is an oral, small-molecule drug that is able to cross the blood-brain barrier, the membrane that controls the passage of substances from the blood into the brain. Herceptin, a large-molecule drug given by infusion, does not cross the blood-brain barrier.

Tykerb, also known by the generic name lapatinib, works by inhibiting two cell receptors that regulate tumor-cell growth. Glaxo, which is attempting to dramatically boost its sales of oncology drugs, has high hopes for Tykerb and is also testing it against head and neck, gastric and renal cancer.

The breast-cancer trial that Dr. Geyer led was ended ahead of schedule because patients taking Tykerb were responding so well. An independent monitoring committee that was overseeing the trial decided that for ethical reasons, all of the patients in the trial should be offered Tykerb treatment, the company said.

Marymath - you and I have similar stories - except they found my brain tumors one week after I finished my Herception. One rather large tumor (28mm) is around my brain stem and is inopperable. The radiation has shrunk it down to about 7mm but that is the best they can do. I also feel that the brain tumors were there all along,

Just saw that this post came back up....let me clarify a few things...

The surgery I had was necessary because I ignored symptoms and let my lesion get too big.  I do advocate if there's anything, it's better to be safe than sorry.  Looks like some people checked things out and found nothing.....yea!  Radiation can be a powerful tool in getting rid of anything smaller....WBR if everywhere, gamma knife or similar stuff if fewer.

I do take Tykerb..they held off for awhile.  I think the reason everyone doesn't get it is the side effects.  It can and does cause some pretty intense intestinal issues and if you don't need to deal with that why should you?  For me, the Xeloda made those worse..  But Xeloda and I didn't get along that well and I was in the minority that had Bilirubin side effects from it, so it is no longer part of my routine.  It is normally taken two weeks on, one week off.  No hair loss, but lots of people get hand-foot syndrome from it.  I didn't get that, but did see dry skin and nails.  I took it twice a day morning and evening.  It has to be taken with food.  The Tykerb is taken once a day on an empty stomach.  Trying to fit them all in every day was interesting...but lots of people do it.  Both are pills.

Last August, my mom was diagnosed with Stage 1 IDC, ER and Her2+, 0 nodes.  She had a mastectomy and 6 rounds of Taxotere and Carboplatin.  She has had 16 treatments of Herceptin,with 2 left. Over the summer she had a bone scan with normal results. On Monday, she went in for an MRI for a herniated disc that she's had for about 3 years.  When she went for results yesterday, she was told there was an egg-sized spot on her brain.  I don't have a lot of information to go on. When my dad called to tell me, he was very upset and having trouble talking.  My mom tried to talk to me but broke down and had to get off the phone.  What little information I did get was that the spot is in the back of the brain, maybe at the base of the skull.  Mom will go in for more tests this evening.  

My mom has had no symptoms of a brain tumor. My mother-in-law, who died from a brain tumor in 2007, had lots of symptoms. Could the spot be something other than a tumor?  Has anyone had a spot on an MRI that wasn't cancer?

Diane, I am so very sorry to hear about your mother. I hope it is nothing, but a shadow!  I have almost the same Breast cancer diagnosis and this worries me as well.  I also have several herniated disks in my neck (along with a fusion at C6/C7 cause I just couldn't live w/that one anymore) and have DAILY headaches, neck pain and I also have dizzy spells periodically.  I am worried as well and know I should go in but every time I mention to my oncologist (actually his NP..... and this all started with my first 3 week Herceptin infusion in July of 2010 after going weekly for six months) that I have headaches, my shoulders hurt, my back hurts, my legs hurt - everything hurts and they brush me off and tell me to get more exercise.  So, I am not going to complain to them anymore and in December when I have my 6-month check-up that is when I'll tell them once again, everything I've told them over the past year and MAYBE they'll finally say ok let's get a pet scan or MRI or whatever. 

 Anyhoo, what I am getting at is I am VERY VERY interested in hearing what your mother's final diagnosis is so I do hope you post back here with a folllow-up to your story.  Again, my thoughts and prayers are with you and your family during this difficult time. 

 Sandra

Thank you lago and greenacres. 

 Greenacres, I'm sorry to hear that you're having problems with aches and pains.  It seems with breast cancer the problems are never ending.

 My mom was supposed to have a lumbar fusion, but the breast cancer diagnosis put the sugery on hold. Just recently she started having aches in her arms, feet and hands.  When we mentioned this to her oncologist last week, the onc said the symptoms are a result of the disks or it could be Arimidex causing all of these symptoms.  Are you taking Arimidex or another AI? 

 Mom goes in for more tests this evening.  I'll post back here when I know more.

Lago

Mom did see her orthopedic surgeon after she saw her onc. The ortho doc ordered the MRI that showed the spot on the brain.  Mom's been on Arimidex since Mar but the symptoms have gotten worse in the last few weeks.  Now I'm worried that it might be a brain tumor causing the problems.

 Does the Anastrozole make your muscles and joints ache?   My mom said it hurts to raise her arms over her head to comb or dry her hair.

Thanks for link Lago.

I noticed that nausea is a side effect too.  Mom started having nausea about the same time the other symptoms occured. 

We're having the same weather here in Indiana, so that too could be contributing to her joint problems. 

I think MRIs are know to give more false positives than negatives but this isn't a perfect science. My guess is if the see lesions and think they are benign they might want to scan again in 6 months to make sure it doesn't grow. No growth is a good sign. That's what they are doing with my liver. They keep saying benign cycsts but they scanned after chemo and will scan a year after that just to be sure.

yay DIane!! so happy for your mom (and you, too)

here's to good news (champagne popping, glasses clinking)

hugs

j

Bless you elmcity and jacksnana!