@fairlinda
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- June 27, 2013 at 9:15 pm
Hello. Well we met with an oncology radiologist to discuss SRS on this one persistent tumor in his parietal lobe that was the only one that had grown re this last MRI 6/10. It had grown but not immediately clear if it were blood around the tumor or the tumor actually growing. The onc rad recommended doing the SRS but wanted to take it before this tumor board or group of doctors who get together to discuss cases to get their impression and to talk to a neurosurgeon to see if he could tell if it were blood or tumor. The neurosurgeon said he could see blood in the middle and he 'could' resect it but with no guarantees that he could make anything better and could make them worse. This thing is sitting right on his "motor bed" which is why he is losing control of legs and arms. Now. The SRS doc says he can't guarantee anything by zapping it in 3 sessions but wouldn't offer if he didn't think he could get it with minimal and hopefully no effect. God do I pray that this tumor is just lying on this "motor bed" and are pressing against all those things that control his legs and arms and they will just perk right back up – like adding water to a chia pet. If instead it has been run over like a Mack truck his skills won't improve but won't get any worse. I asked him if the group's attitude was that Bill and I should "buy a six-pack and go fishing." He answered not necessarily but that choice was always there. He believes he can help or wouldn't offer. Additionally he asked if we had considered Tremedar (sp?). That came up from the committee for following the SRS. We asked that he speak with Dr. Spitzer about going forward and if we need to stop the Zelboraf during the time we are receiving SRS. Do you know anything about all this? The CT and MRI are scheduled tomorrow and we hope the first of the three treatments will begin on Monday. Bill has decided to go ahead with the SRS which will be done Mon-Wed-Fri if he can start on Monday and we are strongly considering heading out to MUSC after the third one for second opinion.
Worse immediate problem is that I have pulled a muscle in my back and am no longer able to lift and transfer a 200 lb man and maybe my 64 years old body couldn't from the beginning of April. With Bill not having use of his legs and round the clock help too expensive to hire and it really is too much to ask of familly members. Our hearts break that we may have to go into a skilled nursing facility until we figure something out. He and I both want to maintain here at home.
And I need to change the heading on this post. The onc rad said Bill could just now be seeing benefits from the WBR. And will continue to for weeks? months?
So reflect for me Kyle and anyone else on what your thoughts are. Best, Linda
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- June 27, 2013 at 9:15 pm
Hello. Well we met with an oncology radiologist to discuss SRS on this one persistent tumor in his parietal lobe that was the only one that had grown re this last MRI 6/10. It had grown but not immediately clear if it were blood around the tumor or the tumor actually growing. The onc rad recommended doing the SRS but wanted to take it before this tumor board or group of doctors who get together to discuss cases to get their impression and to talk to a neurosurgeon to see if he could tell if it were blood or tumor. The neurosurgeon said he could see blood in the middle and he 'could' resect it but with no guarantees that he could make anything better and could make them worse. This thing is sitting right on his "motor bed" which is why he is losing control of legs and arms. Now. The SRS doc says he can't guarantee anything by zapping it in 3 sessions but wouldn't offer if he didn't think he could get it with minimal and hopefully no effect. God do I pray that this tumor is just lying on this "motor bed" and are pressing against all those things that control his legs and arms and they will just perk right back up – like adding water to a chia pet. If instead it has been run over like a Mack truck his skills won't improve but won't get any worse. I asked him if the group's attitude was that Bill and I should "buy a six-pack and go fishing." He answered not necessarily but that choice was always there. He believes he can help or wouldn't offer. Additionally he asked if we had considered Tremedar (sp?). That came up from the committee for following the SRS. We asked that he speak with Dr. Spitzer about going forward and if we need to stop the Zelboraf during the time we are receiving SRS. Do you know anything about all this? The CT and MRI are scheduled tomorrow and we hope the first of the three treatments will begin on Monday. Bill has decided to go ahead with the SRS which will be done Mon-Wed-Fri if he can start on Monday and we are strongly considering heading out to MUSC after the third one for second opinion.
Worse immediate problem is that I have pulled a muscle in my back and am no longer able to lift and transfer a 200 lb man and maybe my 64 years old body couldn't from the beginning of April. With Bill not having use of his legs and round the clock help too expensive to hire and it really is too much to ask of familly members. Our hearts break that we may have to go into a skilled nursing facility until we figure something out. He and I both want to maintain here at home.
And I need to change the heading on this post. The onc rad said Bill could just now be seeing benefits from the WBR. And will continue to for weeks? months?
So reflect for me Kyle and anyone else on what your thoughts are. Best, Linda
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- June 27, 2013 at 9:15 pm
Hello. Well we met with an oncology radiologist to discuss SRS on this one persistent tumor in his parietal lobe that was the only one that had grown re this last MRI 6/10. It had grown but not immediately clear if it were blood around the tumor or the tumor actually growing. The onc rad recommended doing the SRS but wanted to take it before this tumor board or group of doctors who get together to discuss cases to get their impression and to talk to a neurosurgeon to see if he could tell if it were blood or tumor. The neurosurgeon said he could see blood in the middle and he 'could' resect it but with no guarantees that he could make anything better and could make them worse. This thing is sitting right on his "motor bed" which is why he is losing control of legs and arms. Now. The SRS doc says he can't guarantee anything by zapping it in 3 sessions but wouldn't offer if he didn't think he could get it with minimal and hopefully no effect. God do I pray that this tumor is just lying on this "motor bed" and are pressing against all those things that control his legs and arms and they will just perk right back up – like adding water to a chia pet. If instead it has been run over like a Mack truck his skills won't improve but won't get any worse. I asked him if the group's attitude was that Bill and I should "buy a six-pack and go fishing." He answered not necessarily but that choice was always there. He believes he can help or wouldn't offer. Additionally he asked if we had considered Tremedar (sp?). That came up from the committee for following the SRS. We asked that he speak with Dr. Spitzer about going forward and if we need to stop the Zelboraf during the time we are receiving SRS. Do you know anything about all this? The CT and MRI are scheduled tomorrow and we hope the first of the three treatments will begin on Monday. Bill has decided to go ahead with the SRS which will be done Mon-Wed-Fri if he can start on Monday and we are strongly considering heading out to MUSC after the third one for second opinion.
Worse immediate problem is that I have pulled a muscle in my back and am no longer able to lift and transfer a 200 lb man and maybe my 64 years old body couldn't from the beginning of April. With Bill not having use of his legs and round the clock help too expensive to hire and it really is too much to ask of familly members. Our hearts break that we may have to go into a skilled nursing facility until we figure something out. He and I both want to maintain here at home.
And I need to change the heading on this post. The onc rad said Bill could just now be seeing benefits from the WBR. And will continue to for weeks? months?
So reflect for me Kyle and anyone else on what your thoughts are. Best, Linda
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- June 25, 2013 at 6:38 pm
Jenny,
My fiance is battling brain mets and ones elsewhere. Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk). He had whole brain radiation for 5 consecutive days beginning 4-3-13. We left the hospital on 4-12 and shortly after he had his first dose of Yervoy. a few days later he fell in the bathroom and hit his head on the tile. So back we went to the hospital and that called for another scan to be sure there was no damage from the fall. It was discovered he had more tumors since 3 weeks before and the ones he had before were growing. Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf. Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size. We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week. The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.
What is your next treatment option. So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources: those who are fighting.
Best, Linda
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- June 25, 2013 at 6:38 pm
Jenny,
My fiance is battling brain mets and ones elsewhere. Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk). He had whole brain radiation for 5 consecutive days beginning 4-3-13. We left the hospital on 4-12 and shortly after he had his first dose of Yervoy. a few days later he fell in the bathroom and hit his head on the tile. So back we went to the hospital and that called for another scan to be sure there was no damage from the fall. It was discovered he had more tumors since 3 weeks before and the ones he had before were growing. Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf. Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size. We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week. The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.
What is your next treatment option. So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources: those who are fighting.
Best, Linda
-
- June 25, 2013 at 6:38 pm
Jenny,
My fiance is battling brain mets and ones elsewhere. Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk). He had whole brain radiation for 5 consecutive days beginning 4-3-13. We left the hospital on 4-12 and shortly after he had his first dose of Yervoy. a few days later he fell in the bathroom and hit his head on the tile. So back we went to the hospital and that called for another scan to be sure there was no damage from the fall. It was discovered he had more tumors since 3 weeks before and the ones he had before were growing. Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf. Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size. We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week. The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.
What is your next treatment option. So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources: those who are fighting.
Best, Linda
