HER2 Support Group Forums - View Single Post - Brain Mets

dchips1 · 04-08-2007, 10:35 PM

Ok so I can't type very well either!! The steroids caused skin problems, knee swelling, made lyphedema better except for my hand, I lost weight on my rear end wound up with a decub on my tailbone, gumlines bleeding and blood sugars are high 200's. Taste buds are bad and now I feel like the good year blimp. You can also get infections easy, some people get energy or restless I did at night, a little benadryl, melatonoin helped. But all that goes with steroids. There is talk that when you do WBR you break or weaken the Blood brain barrier, which is true the Herceptin will cross. I meet with the onc around the 10th then maybe Tykerb if not good response from the rads. My steroids were started prior to my radiation but the spot on the brainstem if it swelled could cause instant paralzes including breathing, so I was on 4 mg BID x 14 days then 2 mg Bid x 14 days then 1 mg and was only off for 2 days after radiation because I had headaches, now on 1 mg once per day for another 3 days and then try again to be done!!
Good luck to you and e-mail if you can think of anything else!! Good Luck and Rest your brain needs it to make good decisions!!! Darita

04-08-2007, 10:35 PM	#8
dchips1 Senior Member Join Date: May 2006 Location: Mesa, Az Posts: 219	Steroids Yuck Ok so I can't type very well either!! The steroids caused skin problems, knee swelling, made lyphedema better except for my hand, I lost weight on my rear end wound up with a decub on my tailbone, gumlines bleeding and blood sugars are high 200's. Taste buds are bad and now I feel like the good year blimp. You can also get infections easy, some people get energy or restless I did at night, a little benadryl, melatonoin helped. But all that goes with steroids. There is talk that when you do WBR you break or weaken the Blood brain barrier, which is true the Herceptin will cross. I meet with the onc around the 10th then maybe Tykerb if not good response from the rads. My steroids were started prior to my radiation but the spot on the brainstem if it swelled could cause instant paralzes including breathing, so I was on 4 mg BID x 14 days then 2 mg Bid x 14 days then 1 mg and was only off for 2 days after radiation because I had headaches, now on 1 mg once per day for another 3 days and then try again to be done!! Good luck to you and e-mail if you can think of anything else!! Good Luck and Rest your brain needs it to make good decisions!!! 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.