› Forums › General Melanoma Community › WBR didn’t work. after 1 trmt of Yervoy more brain tumors were found, now just finished first month on Zelboraf. Success anyone?
- This topic has 57 replies, 5 voices, and was last updated 10 years, 10 months ago by
fairlinda.
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- June 7, 2013 at 1:13 am
Bill was only diagnosed on 4-1-13. Maybe 5 brain tumors, one lymph gland, lungs. Did WBR to no avail. Started Yervoy. Because of a fall at home, another CT done on 5/2 and not only were there new tumors but the first ones had grown. Doc said he wouldnt live to benefit from Yervoy so we switched to the faster acting Zelboraf. Just finished our first month and nothing is better. The new tumor(s) caused his left side to not cooperate at all. He still has strength, it just can't get a signal. Now his right side is showing signs of weakness.
Bill was only diagnosed on 4-1-13. Maybe 5 brain tumors, one lymph gland, lungs. Did WBR to no avail. Started Yervoy. Because of a fall at home, another CT done on 5/2 and not only were there new tumors but the first ones had grown. Doc said he wouldnt live to benefit from Yervoy so we switched to the faster acting Zelboraf. Just finished our first month and nothing is better. The new tumor(s) caused his left side to not cooperate at all. He still has strength, it just can't get a signal. Now his right side is showing signs of weakness. I am still trying to maintain him at home but transfers have become challenging at best. Anyone have improvement after a month while matters seemed to be worsening? I'm so looking for hope.
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- June 7, 2013 at 3:51 am
Hi Linda,
I only had one brain met. I started Z about the same time as my WBR. It shrunk from 12mm to 8mm. My onc thinks it was the Z not the radiation, it took a couple months though but Z should start working. Have you discussed SRS or Gamma knife? I'm going in for SRS this next week. I know you can't do WBR for a year but maybe SRS will help. I'm so sorry you both are going through this.
All my best to you and Bill
Denise
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- June 7, 2013 at 3:51 am
Hi Linda,
I only had one brain met. I started Z about the same time as my WBR. It shrunk from 12mm to 8mm. My onc thinks it was the Z not the radiation, it took a couple months though but Z should start working. Have you discussed SRS or Gamma knife? I'm going in for SRS this next week. I know you can't do WBR for a year but maybe SRS will help. I'm so sorry you both are going through this.
All my best to you and Bill
Denise
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- June 7, 2013 at 3:51 am
Hi Linda,
I only had one brain met. I started Z about the same time as my WBR. It shrunk from 12mm to 8mm. My onc thinks it was the Z not the radiation, it took a couple months though but Z should start working. Have you discussed SRS or Gamma knife? I'm going in for SRS this next week. I know you can't do WBR for a year but maybe SRS will help. I'm so sorry you both are going through this.
All my best to you and Bill
Denise
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- June 23, 2013 at 3:26 pm
Hello Denise…thank you for responding. Amazing how much more we feel we learn from this site than from a doctor's visit when we feel we are racing against the clock to discuss everything we want to discuss. Our SRS consultation is tomorrow. Please tell me how yours went. We, too, are sorry for your challenges with this awful disease. Thanks for communicating with us…..
Linda
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- June 23, 2013 at 3:26 pm
Hello Denise…thank you for responding. Amazing how much more we feel we learn from this site than from a doctor's visit when we feel we are racing against the clock to discuss everything we want to discuss. Our SRS consultation is tomorrow. Please tell me how yours went. We, too, are sorry for your challenges with this awful disease. Thanks for communicating with us…..
Linda
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- June 23, 2013 at 3:26 pm
Hello Denise…thank you for responding. Amazing how much more we feel we learn from this site than from a doctor's visit when we feel we are racing against the clock to discuss everything we want to discuss. Our SRS consultation is tomorrow. Please tell me how yours went. We, too, are sorry for your challenges with this awful disease. Thanks for communicating with us…..
Linda
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- June 7, 2013 at 5:47 pm
I was told by my Radiology Oncologist. Dr. Lindstadt in California. I specifically asked how often because I was told as well that it can only be done once in a lifetime. I can clarify with my SRS Oncologist and see what he says when I go this next week.
I'm also going to San Fran on June 26th to see my specialist so I can ask him too.
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- June 7, 2013 at 5:47 pm
I was told by my Radiology Oncologist. Dr. Lindstadt in California. I specifically asked how often because I was told as well that it can only be done once in a lifetime. I can clarify with my SRS Oncologist and see what he says when I go this next week.
I'm also going to San Fran on June 26th to see my specialist so I can ask him too.
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- June 7, 2013 at 5:47 pm
I was told by my Radiology Oncologist. Dr. Lindstadt in California. I specifically asked how often because I was told as well that it can only be done once in a lifetime. I can clarify with my SRS Oncologist and see what he says when I go this next week.
I'm also going to San Fran on June 26th to see my specialist so I can ask him too.
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- June 10, 2013 at 5:02 am
Hi Linda,
Keep hanging in there. I'm sorry this has been so incredibly tough on both of you. You've been trying very hard.
SRS stands for "stereotactic radiosurgery". It uses beams from all angles so that they intersect only at the tumor, therfore treating the tumor without affecting other areas very much. The 2 main SRS systems are Gamma Knife (I think there's at least 2 in SC) and Cyberknife (I think there's at least 1). Have his doctors discussed with you whether one of these systems might be a treatment option for Bill's brain mets? I understand there are mets elsewhere as well.At the 2 facilities I've been treated for brain mets, the main choices the doctors have been deciding between have been craniotomy (I've had 2), SRS (I've had 2), or WBR (have not had). For SRS, the limit of how many brain mets can be treated in one session is depends mostly on the volume of all the mets put together, not how many there are.I don't know if this information will be helpful in any way or not.Hoping for the best for you and Bill tomorrow.– Kyle -
- June 10, 2013 at 5:02 am
Hi Linda,
Keep hanging in there. I'm sorry this has been so incredibly tough on both of you. You've been trying very hard.
SRS stands for "stereotactic radiosurgery". It uses beams from all angles so that they intersect only at the tumor, therfore treating the tumor without affecting other areas very much. The 2 main SRS systems are Gamma Knife (I think there's at least 2 in SC) and Cyberknife (I think there's at least 1). Have his doctors discussed with you whether one of these systems might be a treatment option for Bill's brain mets? I understand there are mets elsewhere as well.At the 2 facilities I've been treated for brain mets, the main choices the doctors have been deciding between have been craniotomy (I've had 2), SRS (I've had 2), or WBR (have not had). For SRS, the limit of how many brain mets can be treated in one session is depends mostly on the volume of all the mets put together, not how many there are.I don't know if this information will be helpful in any way or not.Hoping for the best for you and Bill tomorrow.– Kyle -
- June 10, 2013 at 5:02 am
Hi Linda,
Keep hanging in there. I'm sorry this has been so incredibly tough on both of you. You've been trying very hard.
SRS stands for "stereotactic radiosurgery". It uses beams from all angles so that they intersect only at the tumor, therfore treating the tumor without affecting other areas very much. The 2 main SRS systems are Gamma Knife (I think there's at least 2 in SC) and Cyberknife (I think there's at least 1). Have his doctors discussed with you whether one of these systems might be a treatment option for Bill's brain mets? I understand there are mets elsewhere as well.At the 2 facilities I've been treated for brain mets, the main choices the doctors have been deciding between have been craniotomy (I've had 2), SRS (I've had 2), or WBR (have not had). For SRS, the limit of how many brain mets can be treated in one session is depends mostly on the volume of all the mets put together, not how many there are.I don't know if this information will be helpful in any way or not.Hoping for the best for you and Bill tomorrow.– Kyle -
- June 10, 2013 at 11:21 am
Kyle,
Thank you so much for the info. Billy has probably 8 or more mets in his brain. Since 4/1 he has lost the use of both legs. The entire left side at first. His strength remains very good, just can't get the signal for them to work. In the last week – 10 days the right side has become uncooperative. We "hallelujahed" that he was still blessed with his great mind and sense of humor but now that has become sleepy, for lack of a better description. I asked our onc if indeed the Zelboraf appears to not be working if – to provide a better quality of life for the time he has remaining – we could zap the (those) tumors in the area that is affecting his motor skills, not necessarily to save his life although we still believe in miracles but to give him his legs back. Not being experienced in any of this I may suffer from what may appear as silly delusions wanting such but I keep throwing things out there in hopes that something/anything will cure him or at the least ease this hateful disease progression.
Any thoughts on any of this?
Thank you so much for responding to me.
Linda
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- June 10, 2013 at 11:21 am
Kyle,
Thank you so much for the info. Billy has probably 8 or more mets in his brain. Since 4/1 he has lost the use of both legs. The entire left side at first. His strength remains very good, just can't get the signal for them to work. In the last week – 10 days the right side has become uncooperative. We "hallelujahed" that he was still blessed with his great mind and sense of humor but now that has become sleepy, for lack of a better description. I asked our onc if indeed the Zelboraf appears to not be working if – to provide a better quality of life for the time he has remaining – we could zap the (those) tumors in the area that is affecting his motor skills, not necessarily to save his life although we still believe in miracles but to give him his legs back. Not being experienced in any of this I may suffer from what may appear as silly delusions wanting such but I keep throwing things out there in hopes that something/anything will cure him or at the least ease this hateful disease progression.
Any thoughts on any of this?
Thank you so much for responding to me.
Linda
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- June 10, 2013 at 11:21 am
Kyle,
Thank you so much for the info. Billy has probably 8 or more mets in his brain. Since 4/1 he has lost the use of both legs. The entire left side at first. His strength remains very good, just can't get the signal for them to work. In the last week – 10 days the right side has become uncooperative. We "hallelujahed" that he was still blessed with his great mind and sense of humor but now that has become sleepy, for lack of a better description. I asked our onc if indeed the Zelboraf appears to not be working if – to provide a better quality of life for the time he has remaining – we could zap the (those) tumors in the area that is affecting his motor skills, not necessarily to save his life although we still believe in miracles but to give him his legs back. Not being experienced in any of this I may suffer from what may appear as silly delusions wanting such but I keep throwing things out there in hopes that something/anything will cure him or at the least ease this hateful disease progression.
Any thoughts on any of this?
Thank you so much for responding to me.
Linda
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- June 10, 2013 at 12:13 pm
Linda, sorry to hear your husband is having such a rough time. You may have had the MRI by now, if so, I hope it showed some improvement.I’m not sure what the stats were on Zelboraf, but I do know that the GSK version, Dabrafenib, which was recently approved for use in the USA by the FDA, has shown some impressive response in brain mets. Have Bill’s doctors talked about Dabrafenib as a possible alternative?
I was on Dabrafenib and while I never had brain mets, my disease was progressing pretty rapidly in my lungs when I started on it, and at 3 months, my lungs were completely clear and have remained that way ever since (15 months) although now I am on a BRAF/MEK inhibitor combination because of some progression in other areas.
Wishing you both well,
Ally -
- June 10, 2013 at 12:13 pm
Linda, sorry to hear your husband is having such a rough time. You may have had the MRI by now, if so, I hope it showed some improvement.I’m not sure what the stats were on Zelboraf, but I do know that the GSK version, Dabrafenib, which was recently approved for use in the USA by the FDA, has shown some impressive response in brain mets. Have Bill’s doctors talked about Dabrafenib as a possible alternative?
I was on Dabrafenib and while I never had brain mets, my disease was progressing pretty rapidly in my lungs when I started on it, and at 3 months, my lungs were completely clear and have remained that way ever since (15 months) although now I am on a BRAF/MEK inhibitor combination because of some progression in other areas.
Wishing you both well,
Ally -
- June 10, 2013 at 12:13 pm
Linda, sorry to hear your husband is having such a rough time. You may have had the MRI by now, if so, I hope it showed some improvement.I’m not sure what the stats were on Zelboraf, but I do know that the GSK version, Dabrafenib, which was recently approved for use in the USA by the FDA, has shown some impressive response in brain mets. Have Bill’s doctors talked about Dabrafenib as a possible alternative?
I was on Dabrafenib and while I never had brain mets, my disease was progressing pretty rapidly in my lungs when I started on it, and at 3 months, my lungs were completely clear and have remained that way ever since (15 months) although now I am on a BRAF/MEK inhibitor combination because of some progression in other areas.
Wishing you both well,
Ally -
- June 10, 2013 at 4:24 pm
Have you thought about, or already gotten, second opinions? What did your own onc say about zapping (SRS) his brain mets?
This video (with docs at the facility I go to) discusses Gamma Knife in a situation that sounds somewhat similar to Bill's — a woman with 15 brain mets (breast cancer) who lost her ability to walk — http://www.youtube.com/watch?list=FLQNUCIstwRwyMKCoerVXB3g&feature=player_detailpage&v=soh5RDizMpc
I don't know how hard it is in your situation to get a second opinion. Maybe there's a way to do it without Bill needing to go there in person, if that's too much (e.g., get scans on CD and bring to consulting oncologist).
Not sure if you've been to either of these sites, but 2 leading locations in SC for melanoma treatment (per aimatmelanoma.org) — are:
Cancer Centers of the Carolinas
900 W. Faris Rd.
Greenville, SC 29605
864-404-2010
http://www.cancercarolinas.com
Joe Stephensen, MD
MUSC Hollings Cancer Center
86 Jonathan Lucas St
Charleston, SC 29425
843-792-9300
Keisuke Shirai, MD
Best wishes, Kyle
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- June 10, 2013 at 4:24 pm
Have you thought about, or already gotten, second opinions? What did your own onc say about zapping (SRS) his brain mets?
This video (with docs at the facility I go to) discusses Gamma Knife in a situation that sounds somewhat similar to Bill's — a woman with 15 brain mets (breast cancer) who lost her ability to walk — http://www.youtube.com/watch?list=FLQNUCIstwRwyMKCoerVXB3g&feature=player_detailpage&v=soh5RDizMpc
I don't know how hard it is in your situation to get a second opinion. Maybe there's a way to do it without Bill needing to go there in person, if that's too much (e.g., get scans on CD and bring to consulting oncologist).
Not sure if you've been to either of these sites, but 2 leading locations in SC for melanoma treatment (per aimatmelanoma.org) — are:
Cancer Centers of the Carolinas
900 W. Faris Rd.
Greenville, SC 29605
864-404-2010
http://www.cancercarolinas.com
Joe Stephensen, MD
MUSC Hollings Cancer Center
86 Jonathan Lucas St
Charleston, SC 29425
843-792-9300
Keisuke Shirai, MD
Best wishes, Kyle
-
- June 10, 2013 at 4:24 pm
Have you thought about, or already gotten, second opinions? What did your own onc say about zapping (SRS) his brain mets?
This video (with docs at the facility I go to) discusses Gamma Knife in a situation that sounds somewhat similar to Bill's — a woman with 15 brain mets (breast cancer) who lost her ability to walk — http://www.youtube.com/watch?list=FLQNUCIstwRwyMKCoerVXB3g&feature=player_detailpage&v=soh5RDizMpc
I don't know how hard it is in your situation to get a second opinion. Maybe there's a way to do it without Bill needing to go there in person, if that's too much (e.g., get scans on CD and bring to consulting oncologist).
Not sure if you've been to either of these sites, but 2 leading locations in SC for melanoma treatment (per aimatmelanoma.org) — are:
Cancer Centers of the Carolinas
900 W. Faris Rd.
Greenville, SC 29605
864-404-2010
http://www.cancercarolinas.com
Joe Stephensen, MD
MUSC Hollings Cancer Center
86 Jonathan Lucas St
Charleston, SC 29425
843-792-9300
Keisuke Shirai, MD
Best wishes, Kyle
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- June 22, 2013 at 9:40 pm
Hey, Kyle…..whew! We have been through a lot since we last communictated. The MRI showed no new tumors and all had decreased even if slightly except for one and it had increased. We have now been on Zel for little over 7 weeks. Onc has NOW brought up SRS. We are seeing the person who does that this Monday. Our biggest obvious problem right now is that he is losing more and more control of his arms and legs. His left side went first and we were functioning well with transfers, etc. For the last 2 weeks the right side has been rapidly "dying." We are trying our best to keep him in our home and I am a strong woman. However I have just experienced some sort of pull in my lower back. I say all this to ask this: Do you know if motor skills come back if brain mets are defeated? His mind is still sharp and tests given him by speech therapists through home healthcare have been aced. I'm wondering, too, if after we meet with this local doc about SRS if we should just pack up and go (with a good bit of trouble but not unsurmountable) to Charleston. I believe I can get in there for a second opinion. Or do you think we should get this SRS done ASAP? I am desperate to find something to help us. We are in a "bridge" program with Bons Secour St. Francis Hospital in Greenville SC which will "flow" us into hospice once Billy is receiving nothing to prolong his life. We have been with home healthcare now since we left the hospital May 21. When we first came home he could "walk" with a walker for as many as 88 steps. Of course we had the wheel chair right behind him just in case. In a month, with evidence that Zel is working (no new tumors and shrinkage in the others) he cannot stand, I have to strap him to his wheelchair so he does not fall out. Have you ever heard of anyone regaining ability to walk and other motor skills returning? I'm so scared.
Thank you…….Linda
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- June 22, 2013 at 9:40 pm
Hey, Kyle…..whew! We have been through a lot since we last communictated. The MRI showed no new tumors and all had decreased even if slightly except for one and it had increased. We have now been on Zel for little over 7 weeks. Onc has NOW brought up SRS. We are seeing the person who does that this Monday. Our biggest obvious problem right now is that he is losing more and more control of his arms and legs. His left side went first and we were functioning well with transfers, etc. For the last 2 weeks the right side has been rapidly "dying." We are trying our best to keep him in our home and I am a strong woman. However I have just experienced some sort of pull in my lower back. I say all this to ask this: Do you know if motor skills come back if brain mets are defeated? His mind is still sharp and tests given him by speech therapists through home healthcare have been aced. I'm wondering, too, if after we meet with this local doc about SRS if we should just pack up and go (with a good bit of trouble but not unsurmountable) to Charleston. I believe I can get in there for a second opinion. Or do you think we should get this SRS done ASAP? I am desperate to find something to help us. We are in a "bridge" program with Bons Secour St. Francis Hospital in Greenville SC which will "flow" us into hospice once Billy is receiving nothing to prolong his life. We have been with home healthcare now since we left the hospital May 21. When we first came home he could "walk" with a walker for as many as 88 steps. Of course we had the wheel chair right behind him just in case. In a month, with evidence that Zel is working (no new tumors and shrinkage in the others) he cannot stand, I have to strap him to his wheelchair so he does not fall out. Have you ever heard of anyone regaining ability to walk and other motor skills returning? I'm so scared.
Thank you…….Linda
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- June 22, 2013 at 9:40 pm
Hey, Kyle…..whew! We have been through a lot since we last communictated. The MRI showed no new tumors and all had decreased even if slightly except for one and it had increased. We have now been on Zel for little over 7 weeks. Onc has NOW brought up SRS. We are seeing the person who does that this Monday. Our biggest obvious problem right now is that he is losing more and more control of his arms and legs. His left side went first and we were functioning well with transfers, etc. For the last 2 weeks the right side has been rapidly "dying." We are trying our best to keep him in our home and I am a strong woman. However I have just experienced some sort of pull in my lower back. I say all this to ask this: Do you know if motor skills come back if brain mets are defeated? His mind is still sharp and tests given him by speech therapists through home healthcare have been aced. I'm wondering, too, if after we meet with this local doc about SRS if we should just pack up and go (with a good bit of trouble but not unsurmountable) to Charleston. I believe I can get in there for a second opinion. Or do you think we should get this SRS done ASAP? I am desperate to find something to help us. We are in a "bridge" program with Bons Secour St. Francis Hospital in Greenville SC which will "flow" us into hospice once Billy is receiving nothing to prolong his life. We have been with home healthcare now since we left the hospital May 21. When we first came home he could "walk" with a walker for as many as 88 steps. Of course we had the wheel chair right behind him just in case. In a month, with evidence that Zel is working (no new tumors and shrinkage in the others) he cannot stand, I have to strap him to his wheelchair so he does not fall out. Have you ever heard of anyone regaining ability to walk and other motor skills returning? I'm so scared.
Thank you…….Linda
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- June 22, 2013 at 11:09 pm
Hi Linda,
Every situation is different. Getting rid of swelling with steroids as he has been doing (is he still?) can provide some symptomatic relief. Surgery on the tumors, among other things, may immediately, or may eventually provide additional relief as well as killing cancer cells.
But I honestly don't know how much the motor skills might or would come back. I'm sure that's something you'll be asking about Monday.
I can try to mirror back some of the decision points you're working through:
– SRS, as far as I know, can usually be done more than once, even to the same tumor location(s).
– The capabilities of the SRS systems and radiology oncology departments at the 2 locations might differ.
– One wildcard, though, is how willing his insurance company might be to pay for one or more SRS treatments.
– The local radiation onc or their practice assistant might know what his particular insurance company has covered for other patients in the past. Although past behavior is no guarantee of future behavior.
– How much confidence do you both have in having the first SRS done locally?– How fast can it be done locally? Will you get a firm date Monday?
– One approach would be to get 1st SRS quickly/locally, then pursue 2nd opinions (depending on outcome, and depending on insurance)
– Getting a 2nd opinion will be more work, like getting the scans to send to Charleston, or getting hold of who to talk to. I don't think I've heard anyone here say getting a 2nd opinion is a bad idea.
– How long can you afford to wait for a 2nd opinion depending on if, and how fast Charleston can do that
– How fast could Charleston, 2nd opinion obtained, actually give him an SRS date
– Can your local team "refer" him to Charleston which might make it happen more quickly than doing it yourself
– If you get far enough, fast enough with Charleston, what kind of firm SRS date could they give him.
– Transport to Charleston is a big issue, logistically and physically.
This is probably some, but not all the issues you're weighing. Don't know if this will help at all with preparing for Monday's appointment. You and Bill need to get the best plan together that you can, with the help that you have, and go from there. Please let us know how Monday goes.
Best, Kyle
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- June 22, 2013 at 11:09 pm
Hi Linda,
Every situation is different. Getting rid of swelling with steroids as he has been doing (is he still?) can provide some symptomatic relief. Surgery on the tumors, among other things, may immediately, or may eventually provide additional relief as well as killing cancer cells.
But I honestly don't know how much the motor skills might or would come back. I'm sure that's something you'll be asking about Monday.
I can try to mirror back some of the decision points you're working through:
– SRS, as far as I know, can usually be done more than once, even to the same tumor location(s).
– The capabilities of the SRS systems and radiology oncology departments at the 2 locations might differ.
– One wildcard, though, is how willing his insurance company might be to pay for one or more SRS treatments.
– The local radiation onc or their practice assistant might know what his particular insurance company has covered for other patients in the past. Although past behavior is no guarantee of future behavior.
– How much confidence do you both have in having the first SRS done locally?– How fast can it be done locally? Will you get a firm date Monday?
– One approach would be to get 1st SRS quickly/locally, then pursue 2nd opinions (depending on outcome, and depending on insurance)
– Getting a 2nd opinion will be more work, like getting the scans to send to Charleston, or getting hold of who to talk to. I don't think I've heard anyone here say getting a 2nd opinion is a bad idea.
– How long can you afford to wait for a 2nd opinion depending on if, and how fast Charleston can do that
– How fast could Charleston, 2nd opinion obtained, actually give him an SRS date
– Can your local team "refer" him to Charleston which might make it happen more quickly than doing it yourself
– If you get far enough, fast enough with Charleston, what kind of firm SRS date could they give him.
– Transport to Charleston is a big issue, logistically and physically.
This is probably some, but not all the issues you're weighing. Don't know if this will help at all with preparing for Monday's appointment. You and Bill need to get the best plan together that you can, with the help that you have, and go from there. Please let us know how Monday goes.
Best, Kyle
-
- June 22, 2013 at 11:09 pm
Hi Linda,
Every situation is different. Getting rid of swelling with steroids as he has been doing (is he still?) can provide some symptomatic relief. Surgery on the tumors, among other things, may immediately, or may eventually provide additional relief as well as killing cancer cells.
But I honestly don't know how much the motor skills might or would come back. I'm sure that's something you'll be asking about Monday.
I can try to mirror back some of the decision points you're working through:
– SRS, as far as I know, can usually be done more than once, even to the same tumor location(s).
– The capabilities of the SRS systems and radiology oncology departments at the 2 locations might differ.
– One wildcard, though, is how willing his insurance company might be to pay for one or more SRS treatments.
– The local radiation onc or their practice assistant might know what his particular insurance company has covered for other patients in the past. Although past behavior is no guarantee of future behavior.
– How much confidence do you both have in having the first SRS done locally?– How fast can it be done locally? Will you get a firm date Monday?
– One approach would be to get 1st SRS quickly/locally, then pursue 2nd opinions (depending on outcome, and depending on insurance)
– Getting a 2nd opinion will be more work, like getting the scans to send to Charleston, or getting hold of who to talk to. I don't think I've heard anyone here say getting a 2nd opinion is a bad idea.
– How long can you afford to wait for a 2nd opinion depending on if, and how fast Charleston can do that
– How fast could Charleston, 2nd opinion obtained, actually give him an SRS date
– Can your local team "refer" him to Charleston which might make it happen more quickly than doing it yourself
– If you get far enough, fast enough with Charleston, what kind of firm SRS date could they give him.
– Transport to Charleston is a big issue, logistically and physically.
This is probably some, but not all the issues you're weighing. Don't know if this will help at all with preparing for Monday's appointment. You and Bill need to get the best plan together that you can, with the help that you have, and go from there. Please let us know how Monday goes.
Best, Kyle
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- June 23, 2013 at 2:32 am
Thank you, Kyle. Strange how words that suddenly appear on my screen bring comfort, for lack of a better word. I thought we might go see what Dr. Fried has to say on Monday and I feel fairly certain I can get in to see the folks in Charleston this week. Yes transportation will be challenging but we will have to do it. Billy only has Medicare so I'm not sure what that means to all we can/want to do. So far it has been surprisingly sufficient. I will let you know about Monday.
Thank you again for your time and compassion.
Linda
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- June 23, 2013 at 2:32 am
Thank you, Kyle. Strange how words that suddenly appear on my screen bring comfort, for lack of a better word. I thought we might go see what Dr. Fried has to say on Monday and I feel fairly certain I can get in to see the folks in Charleston this week. Yes transportation will be challenging but we will have to do it. Billy only has Medicare so I'm not sure what that means to all we can/want to do. So far it has been surprisingly sufficient. I will let you know about Monday.
Thank you again for your time and compassion.
Linda
-
- June 23, 2013 at 2:32 am
Thank you, Kyle. Strange how words that suddenly appear on my screen bring comfort, for lack of a better word. I thought we might go see what Dr. Fried has to say on Monday and I feel fairly certain I can get in to see the folks in Charleston this week. Yes transportation will be challenging but we will have to do it. Billy only has Medicare so I'm not sure what that means to all we can/want to do. So far it has been surprisingly sufficient. I will let you know about Monday.
Thank you again for your time and compassion.
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 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 28, 2013 at 4:33 am
Hi Linda,
In both my surgeries, a tumor board met that sounds almost exactly like the one that met for Bill. The neurosurgeon seems to be saying it would be very iffy to go in and resect. The rad onc seems much more confident that the benefit from SRS outweighs the risk.
In the best case the tumor could be killed by the treatment, but if not completely, maybe the next best outcome would be that Bill's motor functions come back either in large part or entirely. Besides being a big improvement for Bill's quality of life, as you say it could make a trip to MUSC much more doable.
I'll guess that the CT and MRI tomorrow are being done to 1) create a plastic mesh mask used for the SRS, and b) create the radiation treatment plan for next week. They're starting his SRS only 3 days after the MRI, which means the treatment plan will be very 'fresh'. In my case with CyberKnife there was a longer (7 day) wait.
I don't know the answer about whether Zelboraf can continue while getting SRS.
On Temodar, I understand that it's often been used for melanoma brain mets because it crosses the blood brain barrier.
Caregiving — I've never been in your position which has been overwhelming. For some leads at possible assistance for you, there's a huge list the MIF web site maintains (click on link). Three sections in particular are Caregiver Resources, Lodging, and finally Transportation. Also, does your local treatment facility have any social workers associated with oncology, or just in general? They might be able to suggest local options to help out.
Wishing Bill and you the best next week.
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- June 28, 2013 at 4:33 am
Hi Linda,
In both my surgeries, a tumor board met that sounds almost exactly like the one that met for Bill. The neurosurgeon seems to be saying it would be very iffy to go in and resect. The rad onc seems much more confident that the benefit from SRS outweighs the risk.
In the best case the tumor could be killed by the treatment, but if not completely, maybe the next best outcome would be that Bill's motor functions come back either in large part or entirely. Besides being a big improvement for Bill's quality of life, as you say it could make a trip to MUSC much more doable.
I'll guess that the CT and MRI tomorrow are being done to 1) create a plastic mesh mask used for the SRS, and b) create the radiation treatment plan for next week. They're starting his SRS only 3 days after the MRI, which means the treatment plan will be very 'fresh'. In my case with CyberKnife there was a longer (7 day) wait.
I don't know the answer about whether Zelboraf can continue while getting SRS.
On Temodar, I understand that it's often been used for melanoma brain mets because it crosses the blood brain barrier.
Caregiving — I've never been in your position which has been overwhelming. For some leads at possible assistance for you, there's a huge list the MIF web site maintains (click on link). Three sections in particular are Caregiver Resources, Lodging, and finally Transportation. Also, does your local treatment facility have any social workers associated with oncology, or just in general? They might be able to suggest local options to help out.
Wishing Bill and you the best next week.
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- June 28, 2013 at 4:33 am
Hi Linda,
In both my surgeries, a tumor board met that sounds almost exactly like the one that met for Bill. The neurosurgeon seems to be saying it would be very iffy to go in and resect. The rad onc seems much more confident that the benefit from SRS outweighs the risk.
In the best case the tumor could be killed by the treatment, but if not completely, maybe the next best outcome would be that Bill's motor functions come back either in large part or entirely. Besides being a big improvement for Bill's quality of life, as you say it could make a trip to MUSC much more doable.
I'll guess that the CT and MRI tomorrow are being done to 1) create a plastic mesh mask used for the SRS, and b) create the radiation treatment plan for next week. They're starting his SRS only 3 days after the MRI, which means the treatment plan will be very 'fresh'. In my case with CyberKnife there was a longer (7 day) wait.
I don't know the answer about whether Zelboraf can continue while getting SRS.
On Temodar, I understand that it's often been used for melanoma brain mets because it crosses the blood brain barrier.
Caregiving — I've never been in your position which has been overwhelming. For some leads at possible assistance for you, there's a huge list the MIF web site maintains (click on link). Three sections in particular are Caregiver Resources, Lodging, and finally Transportation. Also, does your local treatment facility have any social workers associated with oncology, or just in general? They might be able to suggest local options to help out.
Wishing Bill and you the best next week.
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- June 28, 2013 at 4:29 pm
Linda, thanks, I'm doing OK. Right now I'm trying to navigate some issues with a seizure medication change, resulting in new side effects that are kind of strong.
For your Temodar, and Zelboraf vs. SRS questions, if you want to start a new separate topic, those questions might draw more attention.
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- June 28, 2013 at 4:29 pm
Linda, thanks, I'm doing OK. Right now I'm trying to navigate some issues with a seizure medication change, resulting in new side effects that are kind of strong.
For your Temodar, and Zelboraf vs. SRS questions, if you want to start a new separate topic, those questions might draw more attention.
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- June 28, 2013 at 4:29 pm
Linda, thanks, I'm doing OK. Right now I'm trying to navigate some issues with a seizure medication change, resulting in new side effects that are kind of strong.
For your Temodar, and Zelboraf vs. SRS questions, if you want to start a new separate topic, those questions might draw more attention.
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