Brain tumor after 8 years on Herceptin

jmihay · 10-24-2009, 10:33 AM

After 8 years on Herceptin, the last 2 annual PETS being NED, my first brain scan detected a brain tumor which I had eradicated with Gamma Knife. I would like to have contact with anyone who has had a similar experience.
The Gamma Knife doctor has now prescribed Brain MRIs every 3 months with a setting of 3 mm slices. My first MRI setting was set at 5 mm slices which I understand is standard, and the setting at the Gamma Knife facility in Fresno, CA was 1mm slices. He also prescribed double the usual dose of dye for contrast.

I had been told when starting Herceptin that it would not protect against brain tumors nor heart failure. I take heart tests every six months and so far, so good, but did not have an MRI to test for brain tumor for 8 years.

I would like to know what others have experienced re tumors and how often they were tested after taking Herceptin, but before finding a tumor.

I would also like to hear from anyone who has had Gamma Knife treatment and any side effects if any, particularly pains in head.

Midwest Alice · 10-24-2009, 10:52 AM

Thanks for the post. I am very interested in what everyone has to say about your question.

You came to the right place.

StephN · 10-24-2009, 12:09 PM

Hi - sorry to learn you have joined the Brain Mets Club. But very glad it was only one and you had Gamma Knife. After three years on Herceptin my annual brain MRI turned up two tumors. My onc was ordering annual brain checks once I became stage IV. He found a "symptom" to report so I could have the scans.

I had Gamma Knife to treat them and that was FIVE years ago. No new tumors in brain since that time. Going in for my 6 month scan next Friday, so hope to have the same news! I was checked every 2 months for a couple of times, then spread to 3, then 4 for a couple of years and now 6 month interval between brain MRIs.

I did not have headaches or pains in my head, only a numbness where nerves were deadened for the head frame that took a couple of months to go away.

Hope you will do well, as studies show the odds are very high that if there are 3 or less mets in brain, they will be successfully treated and not appear again.

Jackie07 · 10-24-2009, 04:37 PM

Hi,

Herceptin is notorious for 'causing' heart failure because it has a potential to damage either the heart valves or the heart muscles. Be sure to exercise regularly to keep your heart strong. Some members on the board took 'enalarpri' to increase their MUGA score.

Brain mets are really not that hard to control/eradicate if found early. Even if it gets too big for Gamma knife, a brain surgery is really not as bad as it sounds - especailly in this day and age. Chemo actually could damage our brain more. And our brain has a plasticity that it regenerates and reconnects if we keep it active (by exercising physically and mentally.) Remember we don't use but 3-5 % of our brain cells - just a matter of keeping them well connected.

I remember how scared I was when I was told about my first huge brain tumor. I can understand how you are feeling right now. But it is very doable. And many of the brave ladies on this board have had good results with either Cyberknife or Gamma-knife plus some with traditional surgery.

Adriana Mangus · 10-24-2009, 11:02 PM

Hi Jmihay;

Check the Members List for Stephanie. She lives in Seattle and has experience with Cyberknife. I'm sure she will give you plenty of advice on the issue.

Stay strong, you have come to the right place. You can always count on us.

Love,

Adriana

margiermc · 10-25-2009, 01:04 PM

My dr. in tampa had a patient on herceptin, young - and treated her with radiation for brain met. she is 6 yrs ned, doing well - this is moffit cancer center in florida.
I do not have enough information on the subject - but, told dr told me that he will do an mri on my brain once a year since herceptin does not reach the brain, but the cancer does. This just made me even more scared, but
he is just doing the mri for vigilence - he cares, and I guess that's all i can ask for in a dr. I'm only a year into, this stuff - it's just all horrific to me - scared out of my mind. margie

jmihay · 10-25-2009, 02:01 PM

Thank you so much for your reply. I really appreciate it.
Warm regards, Joan

jmihay · 10-25-2009, 02:32 PM

Thank you so much for your encouraging reply. I really appreciate it.
Warm regards, Joan

jmihay · 10-25-2009, 02:35 PM

Thank you so much for your advice. I really appreciate it.

Warmest regards,
Joan

jmihay · 10-25-2009, 02:40 PM

Thank you for your reply. I think you are lucky to have a doctor who cares!

Warmest regards
Joan

fullofbeans · 10-26-2009, 04:32 AM

Hi there JMIHAY,

Firstly sorry but I am curious.. What led you to do your 'first' brain scan after 8 years?

The brain met could effectively have been there for years, perhaps inactive..

What was your original DX ?

I guess I am just curious as to why such a delay could have occurred.. it is all quite scary prospect to have to be on the ball for years to come...