› Forums › General Melanoma Community › MRI results – drew a bad hand
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triciad.
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- August 4, 2011 at 3:09 am
My wife and I went in for her MRI brain scan results today, Bad news. She has six new brain mets. So that pretty much rules out any trials of any sort. Or a standard course of IL-2 (the only non-clinical trial drug she could go on – after having already tried Ipi). With active extracranial disease (lungs and who else knows where by now) and very active central nervous system disease, it's all right now about trying to buy time. We meet tomorrow with the radiation oncologist – it's either gamma knife or whole brain radiation.
My wife and I went in for her MRI brain scan results today, Bad news. She has six new brain mets. So that pretty much rules out any trials of any sort. Or a standard course of IL-2 (the only non-clinical trial drug she could go on – after having already tried Ipi). With active extracranial disease (lungs and who else knows where by now) and very active central nervous system disease, it's all right now about trying to buy time. We meet tomorrow with the radiation oncologist – it's either gamma knife or whole brain radiation. They are spread all over – and we have to assume there are more lurking. We'll see what onc recommends. We are game to do the WBRT – our doc said any dementia side effects would kick in long after she is gone – so it's worth it to try to buy some time. She's already lost her hair from the Cyberknife so that's no big deal. She is definitely bothered by the probable side effects of short term memory deficits, but it beats the alternative. She will continue on the Temodar and may switch to Taxol in a month if it looks like it's not doing anything.
The hardest thing we've had to deal with today is expectations around life expectancy. Since she's suffered some cognitive deficits as a result of her stroke, it's been hard to get her to understand. She gets that she won't get through this; she does want the time to get her final projects done (the letters to the boys when they get married, have kids). But she doesn't want the pressure – which is kind of unavoidable.
Despite a very sad, emptional and teary day – she is a remarkable woman who is showing tremendous grace under all this stress. She is very loved by a very broad and deep community of friends and family who will support her on this leg of her journey. I just wish there was a different path…
Nick
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- August 4, 2011 at 3:21 am
Nick,
I'm so sorry that you got this bad news today. I hope that your wife is able to accomplish the letters and to make some more memories with your sons. You've searched for a treatment for her but melanoma can be relentless.
Your wife is blessed that she has you by her side.
Linda
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- August 4, 2011 at 3:21 am
Nick,
I'm so sorry that you got this bad news today. I hope that your wife is able to accomplish the letters and to make some more memories with your sons. You've searched for a treatment for her but melanoma can be relentless.
Your wife is blessed that she has you by her side.
Linda
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- August 4, 2011 at 3:55 am
Nick,
I'm sorry you and your wife are going through this painful time. She is clearly lucky to have you by her side and her stength and grace will guide her through the days to come.
Hoping that you, your wife, and family can share some special moments every day.
Mary
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- August 4, 2011 at 3:55 am
Nick,
I'm sorry you and your wife are going through this painful time. She is clearly lucky to have you by her side and her stength and grace will guide her through the days to come.
Hoping that you, your wife, and family can share some special moments every day.
Mary
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- August 4, 2011 at 4:01 am
Nick, I am very sorry to read this. Unfortunately, melanoma is unpredictable and extremely devious in how it can evade the efforts of the immune system to keep it under control. If your wife isn't responding to Temodar, can she switch to Taxol sooner or to another type of chemo?
I understand how you might be feeling at the moment, as I was in a similar situation with my late wife 2 years ago. She had significant liver mets, but her brain was clear.
Wishing you peace and strength.
Frank from Australia
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- August 4, 2011 at 11:54 am
Thank you Frank – we discussed Taxol and definitely plan to switch to it at the end of the month – but it was a judgment call – she has only been on Temodar a month and it's just to early to tell in the oncs opinion. Based on her sub-q tumors we can't tell either – they aren't growing – so it could be having some effect – or it could be that the cancer is just concentrating elsewhere.
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- August 4, 2011 at 11:54 am
Thank you Frank – we discussed Taxol and definitely plan to switch to it at the end of the month – but it was a judgment call – she has only been on Temodar a month and it's just to early to tell in the oncs opinion. Based on her sub-q tumors we can't tell either – they aren't growing – so it could be having some effect – or it could be that the cancer is just concentrating elsewhere.
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- August 4, 2011 at 4:01 am
Nick, I am very sorry to read this. Unfortunately, melanoma is unpredictable and extremely devious in how it can evade the efforts of the immune system to keep it under control. If your wife isn't responding to Temodar, can she switch to Taxol sooner or to another type of chemo?
I understand how you might be feeling at the moment, as I was in a similar situation with my late wife 2 years ago. She had significant liver mets, but her brain was clear.
Wishing you peace and strength.
Frank from Australia
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- August 4, 2011 at 4:30 am
Nick,
I am very sorry about your wife and the stage she has reached. All I know today is taking one day as it comes to you and don’t look back with regret and try not to look forward in fear. Love her.My husband lost his life on May 27th after just under one year with his battle. I try to now live my life as he lived during this past year, the best way I can and remembering his bravery always. It’s the only way I can continue.
As a caregiver we are never ready to give up… but in reality we must face our families because they depend on us for guidance. Be strong, your wife will guide you.
Deb
lovingwife to Bob (the Gambler)
redesign08.blogspot.com -
- August 4, 2011 at 4:30 am
Nick,
I am very sorry about your wife and the stage she has reached. All I know today is taking one day as it comes to you and don’t look back with regret and try not to look forward in fear. Love her.My husband lost his life on May 27th after just under one year with his battle. I try to now live my life as he lived during this past year, the best way I can and remembering his bravery always. It’s the only way I can continue.
As a caregiver we are never ready to give up… but in reality we must face our families because they depend on us for guidance. Be strong, your wife will guide you.
Deb
lovingwife to Bob (the Gambler)
redesign08.blogspot.com -
- August 4, 2011 at 9:40 am
Life can be so difficult, especially when it involves melanoma. I am sending my prayers to you, Meagan and your beautiful boys. I do hope she is able to write her letters to her boys but also know who doing so also seems that you are wrapping up your life. I am having the same difficulty getting started on scrapbooks for my son. Val
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- August 4, 2011 at 9:40 am
Life can be so difficult, especially when it involves melanoma. I am sending my prayers to you, Meagan and your beautiful boys. I do hope she is able to write her letters to her boys but also know who doing so also seems that you are wrapping up your life. I am having the same difficulty getting started on scrapbooks for my son. Val
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