› Forums › General Melanoma Community › so very confused……Dads radiation has been cancelled
- This topic has 42 replies, 6 voices, and was last updated 7 years, 7 months ago by
snow white.
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- September 27, 2016 at 2:02 am
Dad was all ready to start radiation tomorrow. He met with Doctor Kim Margolin, specialist and only treats melanoma at City of Hope in Duarte, CA. She had a whole diffrent opinion on this. Saying that the mets that he has have been around for a long time. She also said that the radiation would not "work" well for his brain mets and that they have to get him on a diffrent program ASAP. So far I haven't been able to get the drug names. She said one of the side effects is Colitis. She said the drugs are either going to work really well or not, everyone responds diffrently. She also stated that Dad should NOT be driving due to possible seizures, NO other doc has told him this???
Its all so confusing!!!! I don't know what to think.
Anyone have any insight?
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- September 27, 2016 at 3:10 am
I'm sorry for what you're having to go through right now.
sounds like your father has many asymptomatic brain mets right now and that your doctor is recommending drug treatment (probably the nivolumab/ipilimumab combo) over the radiation as the treatment at this time. If you're looking for a cure, these medical treatments are the appropriate choice over whole brain radiation. Whole brain radiation is not considered a reliable cure for melanoma in the brain it is used more for symptom management, which it sounds like your father is asymptomatic. The doctor may recommend steroid treatment and/or anti-seizure meds for your dad at this point to help him avoid symptoms from the brain mets. I think you have yourselves in a Melanoma specialists hands at this point, which is the most important thing.
Re: the driving, I do think it is probably unsafe to drive with that many brain metastases for his own safety.
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- September 27, 2016 at 3:10 am
I'm sorry for what you're having to go through right now.
sounds like your father has many asymptomatic brain mets right now and that your doctor is recommending drug treatment (probably the nivolumab/ipilimumab combo) over the radiation as the treatment at this time. If you're looking for a cure, these medical treatments are the appropriate choice over whole brain radiation. Whole brain radiation is not considered a reliable cure for melanoma in the brain it is used more for symptom management, which it sounds like your father is asymptomatic. The doctor may recommend steroid treatment and/or anti-seizure meds for your dad at this point to help him avoid symptoms from the brain mets. I think you have yourselves in a Melanoma specialists hands at this point, which is the most important thing.
Re: the driving, I do think it is probably unsafe to drive with that many brain metastases for his own safety.
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- September 27, 2016 at 3:10 am
I'm sorry for what you're having to go through right now.
sounds like your father has many asymptomatic brain mets right now and that your doctor is recommending drug treatment (probably the nivolumab/ipilimumab combo) over the radiation as the treatment at this time. If you're looking for a cure, these medical treatments are the appropriate choice over whole brain radiation. Whole brain radiation is not considered a reliable cure for melanoma in the brain it is used more for symptom management, which it sounds like your father is asymptomatic. The doctor may recommend steroid treatment and/or anti-seizure meds for your dad at this point to help him avoid symptoms from the brain mets. I think you have yourselves in a Melanoma specialists hands at this point, which is the most important thing.
Re: the driving, I do think it is probably unsafe to drive with that many brain metastases for his own safety.
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- September 27, 2016 at 4:16 am
Was just going to suggest Dr. Margolin in your other thread when I saw this. She was Adriana's Dr. when she first had recurrance and moved to stage 4. Although she seemed a bit stern to us at first we found her to be a great Dr. and really wish she hadn't left Seattle. She had great communication with us and got right back to us (amazingly fast) when we had any questions. This morning I was actually considering contacting her for some advice on Adriana's current situation. In my opinion you are in good hands and will make many good options available to you.
Rob.
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- September 27, 2016 at 4:16 am
Was just going to suggest Dr. Margolin in your other thread when I saw this. She was Adriana's Dr. when she first had recurrance and moved to stage 4. Although she seemed a bit stern to us at first we found her to be a great Dr. and really wish she hadn't left Seattle. She had great communication with us and got right back to us (amazingly fast) when we had any questions. This morning I was actually considering contacting her for some advice on Adriana's current situation. In my opinion you are in good hands and will make many good options available to you.
Rob.
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- September 27, 2016 at 4:16 am
Was just going to suggest Dr. Margolin in your other thread when I saw this. She was Adriana's Dr. when she first had recurrance and moved to stage 4. Although she seemed a bit stern to us at first we found her to be a great Dr. and really wish she hadn't left Seattle. She had great communication with us and got right back to us (amazingly fast) when we had any questions. This morning I was actually considering contacting her for some advice on Adriana's current situation. In my opinion you are in good hands and will make many good options available to you.
Rob.
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- September 27, 2016 at 4:37 am
I would recommend a second opinion as gamma knife radiation is what my Mom had and she had numerous brain mets like your Dad. We never even discussed whole brain radiation as the doctors did not believe it was better long term over gamma knife radiation.
I would get an appointment with Dr. Eric Chang over at USC. He is one of the best there is and my Mom's doctor.
As for not driving my Mom was in the same boat. She was not allowed to drive for about 6 months after gamma knife radiation and while on Keppra. She took Keppra at 1000MG 1x a day, because the 500MG 2x per day made her like a zombie. – Your Dad needs to be on this to ensure he does NOT have a seizure and should be on it for 6 months after gamma knife even if he hasn't had a seizure. Having a seizure can mean no driving for 1 year and it can also cause all sort of other medical issues. So, ask for this right away.
I might have mentioned to you that my Mom had the abscopal effect, which basically means that two therapies together or separately, but in close proximity ended up increasing positive results. In my Mom's case she had gamma knife for the brain mets followed by Yervoy/ipi 4 days later. Other's may try gamma knife radiation with other medications today, my Mom had her treatment in 2013 and is not on Keytruda because of a reoccurrence of a treated brain met.
Good Luck and keep fighting!
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- September 27, 2016 at 4:37 am
I would recommend a second opinion as gamma knife radiation is what my Mom had and she had numerous brain mets like your Dad. We never even discussed whole brain radiation as the doctors did not believe it was better long term over gamma knife radiation.
I would get an appointment with Dr. Eric Chang over at USC. He is one of the best there is and my Mom's doctor.
As for not driving my Mom was in the same boat. She was not allowed to drive for about 6 months after gamma knife radiation and while on Keppra. She took Keppra at 1000MG 1x a day, because the 500MG 2x per day made her like a zombie. – Your Dad needs to be on this to ensure he does NOT have a seizure and should be on it for 6 months after gamma knife even if he hasn't had a seizure. Having a seizure can mean no driving for 1 year and it can also cause all sort of other medical issues. So, ask for this right away.
I might have mentioned to you that my Mom had the abscopal effect, which basically means that two therapies together or separately, but in close proximity ended up increasing positive results. In my Mom's case she had gamma knife for the brain mets followed by Yervoy/ipi 4 days later. Other's may try gamma knife radiation with other medications today, my Mom had her treatment in 2013 and is not on Keytruda because of a reoccurrence of a treated brain met.
Good Luck and keep fighting!
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- September 27, 2016 at 4:37 am
I would recommend a second opinion as gamma knife radiation is what my Mom had and she had numerous brain mets like your Dad. We never even discussed whole brain radiation as the doctors did not believe it was better long term over gamma knife radiation.
I would get an appointment with Dr. Eric Chang over at USC. He is one of the best there is and my Mom's doctor.
As for not driving my Mom was in the same boat. She was not allowed to drive for about 6 months after gamma knife radiation and while on Keppra. She took Keppra at 1000MG 1x a day, because the 500MG 2x per day made her like a zombie. – Your Dad needs to be on this to ensure he does NOT have a seizure and should be on it for 6 months after gamma knife even if he hasn't had a seizure. Having a seizure can mean no driving for 1 year and it can also cause all sort of other medical issues. So, ask for this right away.
I might have mentioned to you that my Mom had the abscopal effect, which basically means that two therapies together or separately, but in close proximity ended up increasing positive results. In my Mom's case she had gamma knife for the brain mets followed by Yervoy/ipi 4 days later. Other's may try gamma knife radiation with other medications today, my Mom had her treatment in 2013 and is not on Keytruda because of a reoccurrence of a treated brain met.
Good Luck and keep fighting!
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- September 27, 2016 at 7:45 pm
Thank you! I have sent my Mom several studies on the Gamma Knife and they will be speaking to Dr Margolin about it 🙂
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- September 27, 2016 at 7:45 pm
Thank you! I have sent my Mom several studies on the Gamma Knife and they will be speaking to Dr Margolin about it 🙂
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- September 27, 2016 at 7:45 pm
Thank you! I have sent my Mom several studies on the Gamma Knife and they will be speaking to Dr Margolin about it 🙂
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- September 27, 2016 at 4:41 am
And don't believe the mets have been around for a while. My Mom went from 3 to 9 in a month. Brain mets are bad news and you don't want these untreated.
Also, the immunotherapies don't immediately work on brain mets. All of this takes time and you don't want your Dad's brain to be compromised because treatment was delayed.
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- September 27, 2016 at 4:41 am
And don't believe the mets have been around for a while. My Mom went from 3 to 9 in a month. Brain mets are bad news and you don't want these untreated.
Also, the immunotherapies don't immediately work on brain mets. All of this takes time and you don't want your Dad's brain to be compromised because treatment was delayed.
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- September 27, 2016 at 5:10 am
I wholeheartedly agree about the GK. Ask about it.
Rob
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- September 27, 2016 at 5:10 am
I wholeheartedly agree about the GK. Ask about it.
Rob
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- September 27, 2016 at 5:10 am
I wholeheartedly agree about the GK. Ask about it.
Rob
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- September 27, 2016 at 5:10 am
I wholeheartedly agree about the GK. Ask about it.
Rob
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- September 27, 2016 at 5:10 am
I wholeheartedly agree about the GK. Ask about it.
Rob
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- September 27, 2016 at 5:10 am
I wholeheartedly agree about the GK. Ask about it.
Rob
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- September 27, 2016 at 4:41 am
And don't believe the mets have been around for a while. My Mom went from 3 to 9 in a month. Brain mets are bad news and you don't want these untreated.
Also, the immunotherapies don't immediately work on brain mets. All of this takes time and you don't want your Dad's brain to be compromised because treatment was delayed.
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- September 27, 2016 at 11:50 am
Jennifer, I don’t recall all the info about your dads brain mets but you need to get a second opinion asap. Whole brain radiation is not the way to go. The sooner the brain mets are treated the better. Srs or gamma knife is what you need to discuss. It has a very high percentage of working. If he is asymptomatic now is the time to combine immunotherapy with radiation. They can treat multiple mets over one or 2 days. Whole brain radiation does not work well she is right but srs does. Get another opinion and don’t wait!-
- September 27, 2016 at 12:12 pm
I would agree with all here that gamma knife or SRS (targeted radiation) should be discussed along with medical treatment. You may be getting into the area where some docs may consider the # of mets too numerous to treat with gamma knife, however the trend in melanoma in the brain is to treat a higher and higher volume of brain mets with these targeted radiation treatments and they do have good results in resolving existing mets. Seems as though the doctor may be reluctant on radiation and I would at least want to find out why, and think about soliciting second opinion from another melanoma specialist in the area. Regardless, I would start the medical treatment as soon as possible and I think things are headed in the right direction.
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- September 27, 2016 at 12:12 pm
I would agree with all here that gamma knife or SRS (targeted radiation) should be discussed along with medical treatment. You may be getting into the area where some docs may consider the # of mets too numerous to treat with gamma knife, however the trend in melanoma in the brain is to treat a higher and higher volume of brain mets with these targeted radiation treatments and they do have good results in resolving existing mets. Seems as though the doctor may be reluctant on radiation and I would at least want to find out why, and think about soliciting second opinion from another melanoma specialist in the area. Regardless, I would start the medical treatment as soon as possible and I think things are headed in the right direction.
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- September 27, 2016 at 12:12 pm
I would agree with all here that gamma knife or SRS (targeted radiation) should be discussed along with medical treatment. You may be getting into the area where some docs may consider the # of mets too numerous to treat with gamma knife, however the trend in melanoma in the brain is to treat a higher and higher volume of brain mets with these targeted radiation treatments and they do have good results in resolving existing mets. Seems as though the doctor may be reluctant on radiation and I would at least want to find out why, and think about soliciting second opinion from another melanoma specialist in the area. Regardless, I would start the medical treatment as soon as possible and I think things are headed in the right direction.
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- September 27, 2016 at 11:50 am
Jennifer, I don’t recall all the info about your dads brain mets but you need to get a second opinion asap. Whole brain radiation is not the way to go. The sooner the brain mets are treated the better. Srs or gamma knife is what you need to discuss. It has a very high percentage of working. If he is asymptomatic now is the time to combine immunotherapy with radiation. They can treat multiple mets over one or 2 days. Whole brain radiation does not work well she is right but srs does. Get another opinion and don’t wait! -
- September 27, 2016 at 11:50 am
Jennifer, I don’t recall all the info about your dads brain mets but you need to get a second opinion asap. Whole brain radiation is not the way to go. The sooner the brain mets are treated the better. Srs or gamma knife is what you need to discuss. It has a very high percentage of working. If he is asymptomatic now is the time to combine immunotherapy with radiation. They can treat multiple mets over one or 2 days. Whole brain radiation does not work well she is right but srs does. Get another opinion and don’t wait! -
- September 27, 2016 at 2:30 pm
its so difficult because my parents seem so overwhelmed with information. They thought it was going one way and now its turned a diffrent way, which I knew it would. I just looked up some info on the Gamma Knife and emailed it to my mom to look at. Praying this all comes together quickly for my Dads sake.
Thank you all so much for the input, I welcome any and ALL ideas!
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- September 27, 2016 at 2:30 pm
its so difficult because my parents seem so overwhelmed with information. They thought it was going one way and now its turned a diffrent way, which I knew it would. I just looked up some info on the Gamma Knife and emailed it to my mom to look at. Praying this all comes together quickly for my Dads sake.
Thank you all so much for the input, I welcome any and ALL ideas!
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- September 27, 2016 at 2:30 pm
its so difficult because my parents seem so overwhelmed with information. They thought it was going one way and now its turned a diffrent way, which I knew it would. I just looked up some info on the Gamma Knife and emailed it to my mom to look at. Praying this all comes together quickly for my Dads sake.
Thank you all so much for the input, I welcome any and ALL ideas!
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- September 27, 2016 at 6:09 pm
Hi Jennifer,
It is difficult coping with diagnosis, changes in driving status and trying to work out what treatment is best. Your first Dr wanted whole brain radiation whilst the new doc wants to quickly start a drug treatment which we are second guessing as an IPI nivo combo due to the mention of possible collitis.
This doesn't mean that targetted brain radiation is off the treatment menu… It may be that your new doc wants to gauge response to the drugs / avoid unnecessary radiation to healthy brain tissue ,/ have time to put in place other radiation but get your dad started on a treatment asap.
I think in your place I would be pleased at this type of approach as the systemic drugs have the chance to work on your dads melanoma wherever it is in his body.
Your parents will probably quickly adjust to the new plan especially if the reasoning is explained carefully to them… Then end up being shocked that they came close to agreeing to whole brain radiation.
Not saying that the new treatment is a walk in the park..but it is pretty wonderful if you are one of the responders. Please keep on posting with news of progress or side effects. Lots of folk here with detailed knowledge from personal experience that will help you find a pathway through it all.
Best of luck to you and your folks
Deb
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- September 27, 2016 at 6:09 pm
Hi Jennifer,
It is difficult coping with diagnosis, changes in driving status and trying to work out what treatment is best. Your first Dr wanted whole brain radiation whilst the new doc wants to quickly start a drug treatment which we are second guessing as an IPI nivo combo due to the mention of possible collitis.
This doesn't mean that targetted brain radiation is off the treatment menu… It may be that your new doc wants to gauge response to the drugs / avoid unnecessary radiation to healthy brain tissue ,/ have time to put in place other radiation but get your dad started on a treatment asap.
I think in your place I would be pleased at this type of approach as the systemic drugs have the chance to work on your dads melanoma wherever it is in his body.
Your parents will probably quickly adjust to the new plan especially if the reasoning is explained carefully to them… Then end up being shocked that they came close to agreeing to whole brain radiation.
Not saying that the new treatment is a walk in the park..but it is pretty wonderful if you are one of the responders. Please keep on posting with news of progress or side effects. Lots of folk here with detailed knowledge from personal experience that will help you find a pathway through it all.
Best of luck to you and your folks
Deb
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- September 27, 2016 at 6:09 pm
Hi Jennifer,
It is difficult coping with diagnosis, changes in driving status and trying to work out what treatment is best. Your first Dr wanted whole brain radiation whilst the new doc wants to quickly start a drug treatment which we are second guessing as an IPI nivo combo due to the mention of possible collitis.
This doesn't mean that targetted brain radiation is off the treatment menu… It may be that your new doc wants to gauge response to the drugs / avoid unnecessary radiation to healthy brain tissue ,/ have time to put in place other radiation but get your dad started on a treatment asap.
I think in your place I would be pleased at this type of approach as the systemic drugs have the chance to work on your dads melanoma wherever it is in his body.
Your parents will probably quickly adjust to the new plan especially if the reasoning is explained carefully to them… Then end up being shocked that they came close to agreeing to whole brain radiation.
Not saying that the new treatment is a walk in the park..but it is pretty wonderful if you are one of the responders. Please keep on posting with news of progress or side effects. Lots of folk here with detailed knowledge from personal experience that will help you find a pathway through it all.
Best of luck to you and your folks
Deb
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- September 27, 2016 at 7:42 pm
Deb,
Thank you so much, your response is exactly what i needed to hear! I am praying so hard that he is a responder.
I will update as soon as i hear anything new.
Thank you 🙂
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- September 27, 2016 at 7:42 pm
Deb,
Thank you so much, your response is exactly what i needed to hear! I am praying so hard that he is a responder.
I will update as soon as i hear anything new.
Thank you 🙂
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- September 27, 2016 at 7:42 pm
Deb,
Thank you so much, your response is exactly what i needed to hear! I am praying so hard that he is a responder.
I will update as soon as i hear anything new.
Thank you 🙂
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- September 27, 2016 at 7:58 pm
I think it would be best if you let your Mom be there for you Dad emotionally and that you get very involved in the treatment plan and start steering the ship in the right direction. Be their advocate now. – Better now than later…
My Mom would never have asked the questions I did and if I hadn't been there to make appointments, get second opinions, ask questions and so on I don't believe she would be alive or have all of her faculties. She would not have been able to navigate the process. No buts about it.
Your parents need someone who will advocate for the best treatment and for timely treatment. You can do this. And if you can't do it find someone who can. And then: Get all the reports, the MRIs…written authorization from your Dad for his medical records and his insurance information together and be ready to make appointments… And get a second opinion ASAP… Your Dad needs it.
PS
In my case, I just took charge and did it. My Mom is a pretty stubborn lady (apple doesn't fall far from the tree), but I can be pretty stubborn too and she just sat back and went to the appointments. She ended up making the decisions, which I supported, but the important thing was that we had all the right information and the time it took to get things done saved her life.
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- September 28, 2016 at 1:30 am
Thank you Patina, I appreciate your feedback. I agree that I need to be in charge, but my Mom is not there yet. She let me know that if I had info, please present it to her in written form so that she can read it. Example: today I really wanted them to persue the Gamma Knife, so I did research and found some fairly recent articles written and sent them to my mom. She read them and sent them to the specialist, I got a call stating that they will do Gamma Knife next week! So I am trying to gently push them, but I have to watch my boundries. They didn't want me even coming to all Doctors appointments which is going to change, I have way to many questions that I feel I am not getting an answer to.
Again thanks!
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- September 28, 2016 at 1:30 am
Thank you Patina, I appreciate your feedback. I agree that I need to be in charge, but my Mom is not there yet. She let me know that if I had info, please present it to her in written form so that she can read it. Example: today I really wanted them to persue the Gamma Knife, so I did research and found some fairly recent articles written and sent them to my mom. She read them and sent them to the specialist, I got a call stating that they will do Gamma Knife next week! So I am trying to gently push them, but I have to watch my boundries. They didn't want me even coming to all Doctors appointments which is going to change, I have way to many questions that I feel I am not getting an answer to.
Again thanks!
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- September 28, 2016 at 1:30 am
Thank you Patina, I appreciate your feedback. I agree that I need to be in charge, but my Mom is not there yet. She let me know that if I had info, please present it to her in written form so that she can read it. Example: today I really wanted them to persue the Gamma Knife, so I did research and found some fairly recent articles written and sent them to my mom. She read them and sent them to the specialist, I got a call stating that they will do Gamma Knife next week! So I am trying to gently push them, but I have to watch my boundries. They didn't want me even coming to all Doctors appointments which is going to change, I have way to many questions that I feel I am not getting an answer to.
Again thanks!
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- September 27, 2016 at 7:58 pm
I think it would be best if you let your Mom be there for you Dad emotionally and that you get very involved in the treatment plan and start steering the ship in the right direction. Be their advocate now. – Better now than later…
My Mom would never have asked the questions I did and if I hadn't been there to make appointments, get second opinions, ask questions and so on I don't believe she would be alive or have all of her faculties. She would not have been able to navigate the process. No buts about it.
Your parents need someone who will advocate for the best treatment and for timely treatment. You can do this. And if you can't do it find someone who can. And then: Get all the reports, the MRIs…written authorization from your Dad for his medical records and his insurance information together and be ready to make appointments… And get a second opinion ASAP… Your Dad needs it.
PS
In my case, I just took charge and did it. My Mom is a pretty stubborn lady (apple doesn't fall far from the tree), but I can be pretty stubborn too and she just sat back and went to the appointments. She ended up making the decisions, which I supported, but the important thing was that we had all the right information and the time it took to get things done saved her life.
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- September 27, 2016 at 7:58 pm
I think it would be best if you let your Mom be there for you Dad emotionally and that you get very involved in the treatment plan and start steering the ship in the right direction. Be their advocate now. – Better now than later…
My Mom would never have asked the questions I did and if I hadn't been there to make appointments, get second opinions, ask questions and so on I don't believe she would be alive or have all of her faculties. She would not have been able to navigate the process. No buts about it.
Your parents need someone who will advocate for the best treatment and for timely treatment. You can do this. And if you can't do it find someone who can. And then: Get all the reports, the MRIs…written authorization from your Dad for his medical records and his insurance information together and be ready to make appointments… And get a second opinion ASAP… Your Dad needs it.
PS
In my case, I just took charge and did it. My Mom is a pretty stubborn lady (apple doesn't fall far from the tree), but I can be pretty stubborn too and she just sat back and went to the appointments. She ended up making the decisions, which I supported, but the important thing was that we had all the right information and the time it took to get things done saved her life.
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