HER2 Support Group Forums - View Single Post - Brain Mets came back -- Help Needed

Joan M · 01-17-2011, 06:47 PM

Grace,

Good news about getting the three tumors zapped.

As to adding Tykerb, I'd push for it even though you had Gamma Knife.

Although I understand the idea of not using up drugs unless you need them, there's also something to be said in adding drugs to push harder against the remaining cancer cells in your system.

In my own case, since I became metastatic in January 2007 I've had only local procedures (surgery, radiation and interventional radiology), but never chemo, only Herceptin. And while I'm happy with that decision, I'm now concerned that I didn't add a course of Xeloda and Tykerb at my local onc's suggestion at the time I had those procedures. The last procedure was for my brain in October 2008. After the procedures, she offered to give me chemo as a follow-up, but I declined in order to get back to work. I'm now nervous about that decision, and both she and another onc (who I now see) disagree with adding anything currently unless I show progression.

You could get another opinion for additional feedback.

Joan

01-17-2011, 06:47 PM	#19
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Brain Mets came back -- Help Needed Grace, Good news about getting the three tumors zapped. As to adding Tykerb, I'd push for it even though you had Gamma Knife. Although I understand the idea of not using up drugs unless you need them, there's also something to be said in adding drugs to push harder against the remaining cancer cells in your system. In my own case, since I became metastatic in January 2007 I've had only local procedures (surgery, radiation and interventional radiology), but never chemo, only Herceptin. And while I'm happy with that decision, I'm now concerned that I didn't add a course of Xeloda and Tykerb at my local onc's suggestion at the time I had those procedures. The last procedure was for my brain in October 2008. After the procedures, she offered to give me chemo as a follow-up, but I declined in order to get back to work. I'm now nervous about that decision, and both she and another onc (who I now see) disagree with adding anything currently unless I show progression. You could get another opinion for additional feedback. Joan __________________ Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!