HER2 Support Group Forums - View Single Post - Anyone with brain met/necrosis surgically removed

dchips1 · 11-03-2009, 02:11 PM

Thanks for the input, mine is a right cerebellar mass, it is so low that when the head frame for gamma was placed it had to be lowered. The second time they went even lower on the one side, and I got a right eyebrow area toward temple that is caved in already. Hair I lost it twice already!!! So as long as i have most we are good!! LOL!!

How long were in hospital? Did they do arterial lines and all the fun stuff? Headframe etc?

I am going to med crew the 3-day komen walk on 11/13-15/09, but I am e-mailing my Oncologist and nuerosurgeon with a plan.

When I saw my Onc who is awesome, he suggested I decrease the steroids. So I prayed about it and thought about it, and the neuro guy didn't want to rescan till mid December. Last Mri 9/17/09 with the bad headaches. So I am going to ask to another MRI the week of the 15th and see what the fluid level/ necrosis is same, better, or worse. If better try to taper done on the steroids, if same or worse cut it out!!! I take care of special needs kids, and both my Husband Boeing shuts down for 2 weeks, and my college girls who are at would be on Winter break from school. So do it then?

So what do you think?
Thanks Darita

11-03-2009, 02:11 PM	#3
dchips1 Senior Member Join Date: May 2006 Location: Mesa, Az Posts: 219	Re: Anyone with brain met/necrosis surgically removed Thanks for the input, mine is a right cerebellar mass, it is so low that when the head frame for gamma was placed it had to be lowered. The second time they went even lower on the one side, and I got a right eyebrow area toward temple that is caved in already. Hair I lost it twice already!!! So as long as i have most we are good!! LOL!! How long were in hospital? Did they do arterial lines and all the fun stuff? Headframe etc? I am going to med crew the 3-day komen walk on 11/13-15/09, but I am e-mailing my Oncologist and nuerosurgeon with a plan. When I saw my Onc who is awesome, he suggested I decrease the steroids. So I prayed about it and thought about it, and the neuro guy didn't want to rescan till mid December. Last Mri 9/17/09 with the bad headaches. So I am going to ask to another MRI the week of the 15th and see what the fluid level/ necrosis is same, better, or worse. If better try to taper done on the steroids, if same or worse cut it out!!! I take care of special needs kids, and both my Husband Boeing shuts down for 2 weeks, and my college girls who are at would be on Winter break from school. So do it then? So what do you think? Thanks Darita __________________ dx 1/06 IDC 2cm 38 at dx 2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis 3/06-9/06Taxol/Carbo/zometa/Herceptin 3/07 6 brain mets WBR down to c-2 4/07 osteonecrosis jaw 1/08 mri new 9mm lesion right lower side 2/08 gamma knife 1 lesion 11/08 regamma 10/09 latent rad necrosis to brain met, 1/20/10 crani: lesion necrosis w active cells continue her add tykerb 1/11 NED just Ingrown toenail! YEAH GOD 8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans oct -march 11 new neuro deficits lower legs 3/12 2 spinal metsTykerb, Herceptin 04/12 4050cGY rads T 2-4 & T7-9 5/12 Brain,cervical lumbar clear/thoracic slight decrease 10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly. 9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec. last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative. 10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney! 12/13 Mri brain no new lesions, cervical and lumbar arthritis. Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain 1/29/14 HIHO HIHO its off to Neuro surgery I go Life is Good when you wake up in the morning and take a breath and know that God has given me another day.