› Forums › General Melanoma Community › Help-Huge Brain Tumor
- This topic has 15 replies, 3 voices, and was last updated 11 years, 11 months ago by
Wife of Carl.
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- January 12, 2013 at 10:49 pm
I have not posted for a while. My husband has been participating in a MEK inhibitor trial in Nashville for 2 1/2 years. He recently displayed bouts of memory loss and disorientation. After a head CT and brain MRI, was diagnosed with a huge brain tumor. At this point it is not known if it is melanoma. It does not present itself that way, but has grown very rapidly to a large size which is unusual for a benign tumor. Have any other melanoma patients had fast growing brain tumors that have turned out to be benign?
I have not posted for a while. My husband has been participating in a MEK inhibitor trial in Nashville for 2 1/2 years. He recently displayed bouts of memory loss and disorientation. After a head CT and brain MRI, was diagnosed with a huge brain tumor. At this point it is not known if it is melanoma. It does not present itself that way, but has grown very rapidly to a large size which is unusual for a benign tumor. Have any other melanoma patients had fast growing brain tumors that have turned out to be benign? I know it is a reach, but praying that this may not be melanoma.
Pat
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- January 13, 2013 at 12:28 pm
I'm sorry to hear about your husband's recent troubles. I can imagine what a shock it must have been coming "out of the blue" like that! Nobody can tell you right now whether the tumor is malignant or benign–you will have to wait for the test results. (Oh, the waiting is so HARD, isn't it?!)
But if you have not been closely following this board recently, you may be happy to hear that several new drugs and clinical trials have become available in the last couple of years. We have many more options–and many more effective options– than we had 2.5 years ago. I know that you can't help but worry. However, don't panic. Melanoma is an evolving disease. Just consider this another skirmish in your husband's battle. He did great on MEK, and he will do great on the next treatment, too.
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- January 13, 2013 at 12:28 pm
I'm sorry to hear about your husband's recent troubles. I can imagine what a shock it must have been coming "out of the blue" like that! Nobody can tell you right now whether the tumor is malignant or benign–you will have to wait for the test results. (Oh, the waiting is so HARD, isn't it?!)
But if you have not been closely following this board recently, you may be happy to hear that several new drugs and clinical trials have become available in the last couple of years. We have many more options–and many more effective options– than we had 2.5 years ago. I know that you can't help but worry. However, don't panic. Melanoma is an evolving disease. Just consider this another skirmish in your husband's battle. He did great on MEK, and he will do great on the next treatment, too.
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- January 13, 2013 at 12:28 pm
I'm sorry to hear about your husband's recent troubles. I can imagine what a shock it must have been coming "out of the blue" like that! Nobody can tell you right now whether the tumor is malignant or benign–you will have to wait for the test results. (Oh, the waiting is so HARD, isn't it?!)
But if you have not been closely following this board recently, you may be happy to hear that several new drugs and clinical trials have become available in the last couple of years. We have many more options–and many more effective options– than we had 2.5 years ago. I know that you can't help but worry. However, don't panic. Melanoma is an evolving disease. Just consider this another skirmish in your husband's battle. He did great on MEK, and he will do great on the next treatment, too.
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- January 13, 2013 at 11:17 pm
My husband had a huge, fast growing brain tumor in October 2011. I didnt’t look like melanoma on the MRI nor to the neurosurgeon who removed it. He had a craniotomy and gamma knife to get rid of it. The biopsy was confusing….they actually sent it to a lab in California and the conclusion was that since he has melanoma, and the tumor showed the v-600 mutation, that it probably was melanoma. We did discuss with the oncologist and he mentioned that (while highly unusual), it could be another kind of cancer. Nothing has grown back in his brain in 14 months (not typical for melanoma either). My husband started Zelboraf in October 2011 and he has been NED since April of last year!! The brain tumor was the scariest part of this journey (so far), but the treatment and surgery was actually easier than the thoracotomy and the small bowel resection he had. Hang in there and take it step at a time. Brain surgery sounds so scary, but my husband said it was actually easier than the thoracotomy and the small bowel resection he had.-
- January 14, 2013 at 6:05 pm
Thank you so much for your reply. I did not think that there was another case like my husband's. My husband is scheduled for surgery this Thursday. The neurosurgeon said that the tumor could also be a stypical minigenioma which I understand is also malignant. We are beyond scared! Thank you for the reassurance you have provided with your story. I am very glad to hear that you husband is repsonding to treatment and doing well at this time. Was he on a treatment when he was diagnosed with the brain tumor?
Pat
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- January 14, 2013 at 8:29 pm
Hang in there…brain surgery is scary (but fortunately not very painful). It took a good 2-3 months after before he was “normal” again. Lots and lots of sleeping is all that’s necessary to recover. I don’t think he had much besides tyleonol for the pain. Steroids were awful for him, but he tapered off very quickly. As for treatment..he had Yervoy from May-July 2011 (all 4 doses in 12 weeks). No treatment until they found the brain tumor in October 2011. He started Zelboraf and steroids in October 20122 and W/in a month the tumor shrunk a bit, but not much. He came off of Zelboraf for the surgeries in November and Dcember and has been on it for well over a year with no reoccurrences. MRI’s every 2 months…scariest part of this all. CT’s on alternating months…so a scan every month, ugh! Hang on there…I kept reading it wasn’t that bad and didn’t believe it, but it truly wasn’t that bad. Be prepared that he will sleep A LOT..20+ hours a day at the beginning. -
- January 14, 2013 at 11:47 pm
Thank you for the reply. Carl was concerned about the level of pain involved in this surgery. You post has gone a long way to reassure him. He was on a MEK trial when he was diagnosed. I was told that the MEK drug did not cross the blood brain barrier. I am clinging to the hope that the tumor is benign. Perhaps there was excellerated growth due to the MEK drug he was on. I realize this may not be too realistic given his history but still hoping after hearing your story. He has been on steroids since diagnosis last Wed. night….so it has not been very long. He had some nausea issues and he fell and hit his head on the driveway when clearing snow on 12/29/12, which may have excellerated the symptoms. Prior to this there was no indications of any brain issues. When we saw the doctor in Nashville, he had a chest and abdomen CT, which did not indicate any intestinal/stomach issues, but still did not have an indication of a brain issue. It is good to know what I can expect during the recovery period.
Again thank you for your response.
Pat
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- January 14, 2013 at 11:47 pm
Thank you for the reply. Carl was concerned about the level of pain involved in this surgery. You post has gone a long way to reassure him. He was on a MEK trial when he was diagnosed. I was told that the MEK drug did not cross the blood brain barrier. I am clinging to the hope that the tumor is benign. Perhaps there was excellerated growth due to the MEK drug he was on. I realize this may not be too realistic given his history but still hoping after hearing your story. He has been on steroids since diagnosis last Wed. night….so it has not been very long. He had some nausea issues and he fell and hit his head on the driveway when clearing snow on 12/29/12, which may have excellerated the symptoms. Prior to this there was no indications of any brain issues. When we saw the doctor in Nashville, he had a chest and abdomen CT, which did not indicate any intestinal/stomach issues, but still did not have an indication of a brain issue. It is good to know what I can expect during the recovery period.
Again thank you for your response.
Pat
-
- January 14, 2013 at 11:47 pm
Thank you for the reply. Carl was concerned about the level of pain involved in this surgery. You post has gone a long way to reassure him. He was on a MEK trial when he was diagnosed. I was told that the MEK drug did not cross the blood brain barrier. I am clinging to the hope that the tumor is benign. Perhaps there was excellerated growth due to the MEK drug he was on. I realize this may not be too realistic given his history but still hoping after hearing your story. He has been on steroids since diagnosis last Wed. night….so it has not been very long. He had some nausea issues and he fell and hit his head on the driveway when clearing snow on 12/29/12, which may have excellerated the symptoms. Prior to this there was no indications of any brain issues. When we saw the doctor in Nashville, he had a chest and abdomen CT, which did not indicate any intestinal/stomach issues, but still did not have an indication of a brain issue. It is good to know what I can expect during the recovery period.
Again thank you for your response.
Pat
-
- January 14, 2013 at 8:29 pm
Hang in there…brain surgery is scary (but fortunately not very painful). It took a good 2-3 months after before he was “normal” again. Lots and lots of sleeping is all that’s necessary to recover. I don’t think he had much besides tyleonol for the pain. Steroids were awful for him, but he tapered off very quickly. As for treatment..he had Yervoy from May-July 2011 (all 4 doses in 12 weeks). No treatment until they found the brain tumor in October 2011. He started Zelboraf and steroids in October 20122 and W/in a month the tumor shrunk a bit, but not much. He came off of Zelboraf for the surgeries in November and Dcember and has been on it for well over a year with no reoccurrences. MRI’s every 2 months…scariest part of this all. CT’s on alternating months…so a scan every month, ugh! Hang on there…I kept reading it wasn’t that bad and didn’t believe it, but it truly wasn’t that bad. Be prepared that he will sleep A LOT..20+ hours a day at the beginning. -
- January 14, 2013 at 8:29 pm
Hang in there…brain surgery is scary (but fortunately not very painful). It took a good 2-3 months after before he was “normal” again. Lots and lots of sleeping is all that’s necessary to recover. I don’t think he had much besides tyleonol for the pain. Steroids were awful for him, but he tapered off very quickly. As for treatment..he had Yervoy from May-July 2011 (all 4 doses in 12 weeks). No treatment until they found the brain tumor in October 2011. He started Zelboraf and steroids in October 20122 and W/in a month the tumor shrunk a bit, but not much. He came off of Zelboraf for the surgeries in November and Dcember and has been on it for well over a year with no reoccurrences. MRI’s every 2 months…scariest part of this all. CT’s on alternating months…so a scan every month, ugh! Hang on there…I kept reading it wasn’t that bad and didn’t believe it, but it truly wasn’t that bad. Be prepared that he will sleep A LOT..20+ hours a day at the beginning. -
- January 14, 2013 at 6:05 pm
Thank you so much for your reply. I did not think that there was another case like my husband's. My husband is scheduled for surgery this Thursday. The neurosurgeon said that the tumor could also be a stypical minigenioma which I understand is also malignant. We are beyond scared! Thank you for the reassurance you have provided with your story. I am very glad to hear that you husband is repsonding to treatment and doing well at this time. Was he on a treatment when he was diagnosed with the brain tumor?
Pat
-
- January 14, 2013 at 6:05 pm
Thank you so much for your reply. I did not think that there was another case like my husband's. My husband is scheduled for surgery this Thursday. The neurosurgeon said that the tumor could also be a stypical minigenioma which I understand is also malignant. We are beyond scared! Thank you for the reassurance you have provided with your story. I am very glad to hear that you husband is repsonding to treatment and doing well at this time. Was he on a treatment when he was diagnosed with the brain tumor?
Pat
-
- January 13, 2013 at 11:17 pm
My husband had a huge, fast growing brain tumor in October 2011. I didnt’t look like melanoma on the MRI nor to the neurosurgeon who removed it. He had a craniotomy and gamma knife to get rid of it. The biopsy was confusing….they actually sent it to a lab in California and the conclusion was that since he has melanoma, and the tumor showed the v-600 mutation, that it probably was melanoma. We did discuss with the oncologist and he mentioned that (while highly unusual), it could be another kind of cancer. Nothing has grown back in his brain in 14 months (not typical for melanoma either). My husband started Zelboraf in October 2011 and he has been NED since April of last year!! The brain tumor was the scariest part of this journey (so far), but the treatment and surgery was actually easier than the thoracotomy and the small bowel resection he had. Hang in there and take it step at a time. Brain surgery sounds so scary, but my husband said it was actually easier than the thoracotomy and the small bowel resection he had. -
- January 13, 2013 at 11:17 pm
My husband had a huge, fast growing brain tumor in October 2011. I didnt’t look like melanoma on the MRI nor to the neurosurgeon who removed it. He had a craniotomy and gamma knife to get rid of it. The biopsy was confusing….they actually sent it to a lab in California and the conclusion was that since he has melanoma, and the tumor showed the v-600 mutation, that it probably was melanoma. We did discuss with the oncologist and he mentioned that (while highly unusual), it could be another kind of cancer. Nothing has grown back in his brain in 14 months (not typical for melanoma either). My husband started Zelboraf in October 2011 and he has been NED since April of last year!! The brain tumor was the scariest part of this journey (so far), but the treatment and surgery was actually easier than the thoracotomy and the small bowel resection he had. Hang in there and take it step at a time. Brain surgery sounds so scary, but my husband said it was actually easier than the thoracotomy and the small bowel resection he had.
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