fierogirl

fierogirl's Recent CancerCompass Activity

• fierogirl has replied to a post on the message board

  The drs need to do a test on a sample of the tumor. That will show them if it was methylated or non-methylated. It's my understanding that if it was methylated, the person responds better to Temodar. My husband's tumor was non-methylated, and the Temodar only worked for a short while, then stopped. He's on Avastin and having good results.

  November 17 at 5:14 AM view post

• fierogirl has replied to a post on the message board

  My husband has gone through four cycles of Avastin so far (12 treatments). After just one cycle (3 treatments), a golf ball size tumor was barely visible on the MRI and a deep 3/4" tumor shrunk to 1/2". He gets MRI's every 6 weeks. The tumor is remaining stable at 1/2". He gets a little tired and his shoulders hurt. I can't remember when he tapered off the steroids, but he felt so much better when he did. The strengt...

  November 16 at 2:24 AM view post

• fierogirl has replied to a post on the message board

  I don't have any words of wisdom regarding your sister, but I wanted to share that my husband has been on Avastin for five months and hasn't had any side effects at all. He's off decadron and feels so much better being off that. So far the Avastin has shrunk a golf ball size tumor to being barely visible and a 3/4" tumor to 1/2".

  November 06 at 5:44 AM view post

• fierogirl has replied to a post on the message board

  My husband takes 1500 mg Keppra/day. I would question your NO why they chose to give you Lamictal. From reading through many postings on this message board, it looked to me like Keppra was the anti-seizure med prescribed for most.

  October 19 at 4:09 AM view post

• fierogirl has created a new message board discussion

  My husband currently on Avastin (Temodar stopped working). He has shoulder pain nearly all the time. He asked the NO if this could be a side effect of the Avastin. He didn't believe it was but said that another GBM patient of his is also complaining of her shoulders hurting. Just wondering if anyone else experiences this?

  October 19 at 4:05 AM view discussion

• fierogirl has replied to a post on the message board

  Just wanted to share that my husband has had good results from the Avastin thus far. I hope your appt goes well!

  October 13 at 8:12 PM view post

• fierogirl has replied to a post on the message board

  Has your wife had Avastin (administered by IV)? Temodar stopped working on my husband, and so far, he's having good results with the Avastin.

  October 13 at 8:06 PM view post

• fierogirl has replied to a post on the message board

  My husband's hair grew back in the surgical/radiation site after he stopped taking Temodar. It is thick as it was before. The only strange thing is that he has "salt and pepper" hair, and he site came back only white. :)

  October 02 at 4:32 AM view post

• fierogirl has replied to a post on the message board

  p.s. Did your husband have to be in the hospital during the 10 days of seizure activity? If not, how did you handle this?

  September 22 at 5:20 PM view post

• fierogirl has replied to a post on the message board

  My husband is not having any side effects from the Avastin. I believe he's finishing his third cycle of three treatments each cycle. His BP has been high but not high enough to put him on meds. Other than that, he feels a little more tired than usual. I can't image 10 days of seizure activity! How awful!! No, they did not hook him up to an EEG in the ER. Thanks for the advice. I didn't know know there was a possibi...

  September 22 at 5:18 PM view post