Brain mets

[KathyT]

Hello! It has been a long time since I posted. I was just diagnosed with pituitary gland mets(hormone+/Her2+). No other cancer found in the brain and will probably do gamma knife radiation at Barrow's Neurological Center at St. Joe's Hospital. I am so lucky to have this Center near me. I have to say I am still in denial. I am having a pet scan to see if there are mets anywhere else.

My question to you wonderful women is do you have any suggestions? Any clinical trials that you know of, any questions I should ask?
Any of you women going through this or have gone through this? I would love to talk to you!!

[thinkpositive]

Hi Kathy,

I'm sorry that I have no answers to your questions as I have no experience in this area. I just wanted to let you know that I'm wishing you the best and feel confident that others in the group will have some advise to offer you.

Take Care,
Brenda

[MaineRottweilers]

Hi, Kathy.

I just wanted to express my sympathy for your metastatic diagnosis. I am not able to answer any of your questions but I know several members will have information for you. I wish you the best in your treatment.

[Carol Ann]

Kathy, I don't have any advice either, but so sorry to hear this. You might want to post in the HER2 group section, more people might see it there, that section is usually pretty active. Please keep us posted!

Carol Ann

[AMHarrison]

I was diagnosed in March 2016 with brain mets. Nearly 2 years of being NED from HER2+. I'm in a clinical trial right now o. Abemaciclib and find out if it's working next week. I'm scheduled for an MRI & PET scan on Monday. Never had a brain MRI until the headaches wouldn't go away.

[Christine R]

Dear Kathy,

I'm sorry to hear this. While I don't know of any specific trials, I've heard that the Susan Love website is pretty up-to-date on the trial frontier. You might also want to check the Genentech site. (My clinical trial was run by Genentech.)

Having finished treatment in December, I'm concerned about mets. Did you have any symptoms?

All the best,

Chris

[FilY]

Kathy, I actually do have a specific (if largely experimental) treatment intended to prevent/treat brain mets: pulsed dosing of lapatinib (Tykerb). See my post here (http://www.her2support.org/vbulletin/showpost.php?p=325659&postcount=59).

[Ramsay_Bolton]

Do you have any further info on this?

[FilY]

Yes, of course I do, however it's easy to find publicly available info by simply Googling "lapatinib pulsed dosing". You'll see that there's a reasonable amount of evidence for the safety of this dosing regimen. (That does NOT mean it's side-effect free.) However the clinical evidence for the effectiveness (i.e., does it prevent brain mets in Her2 breast cancer) is thin and mostly informed guesswork (i.e., it should work based on what we know). That's what I meant when I said this treatment is "experimental."