HER2 Support Group Forums - View Single Post - if had or brain mets please share your knowledge

Barbara H. · 03-05-2011, 10:30 AM

HI Pam,
I had one 3cm tumor 7 years ago this coming May. You can read my prior posts. You have to believe that treatment will work because it has for others here. The only small positive result of this sad development is that it could be the reason for your excessive fatigue, and hopefully that will resolve with treatment. I hated decadron. It made me sleepless, manic, and caused huge weight gain. It caused me me to say crazy things. My muscles atrophied especially in my legs resulting in them being very weak. Although you don't like hearing this information, I wish I had at least known about these side effects the first time I took it. I had to have two subsequent brain surgeries due to radiation necroses. I was quite adamant about requesting to wean a quickly as possible from the decradon after those surgeries.

I know it is very difficult with all you have been through, but try to keep as much hope as you can. As you know, there are others here who have done OK with this, and new drugs are on the way to help you. Just look at Sheila.

Pam, I care for you and you continue to be an inspiration to me and to others. I applaud you for your willingness to share so much of you journey these past few months in spite of its difficulties.

Best wishes,
Barbara H.

03-05-2011, 10:30 AM	#5
Barbara H. Senior Member Join Date: Sep 2005 Location: Newton, MA Posts: 951	Re: if had or brain mets please share your knowledge HI Pam, I had one 3cm tumor 7 years ago this coming May. You can read my prior posts. You have to believe that treatment will work because it has for others here. The only small positive result of this sad development is that it could be the reason for your excessive fatigue, and hopefully that will resolve with treatment. I hated decadron. It made me sleepless, manic, and caused huge weight gain. It caused me me to say crazy things. My muscles atrophied especially in my legs resulting in them being very weak. Although you don't like hearing this information, I wish I had at least known about these side effects the first time I took it. I had to have two subsequent brain surgeries due to radiation necroses. I was quite adamant about requesting to wean a quickly as possible from the decradon after those surgeries. I know it is very difficult with all you have been through, but try to keep as much hope as you can. As you know, there are others here who have done OK with this, and new drugs are on the way to help you. Just look at Sheila. Pam, I care for you and you continue to be an inspiration to me and to others. I applaud you for your willingness to share so much of you journey these past few months in spite of its difficulties. Best wishes, Barbara H.