› Forums › General Melanoma Community › Possible Brain Mets
- This topic has 33 replies, 5 voices, and was last updated 7 years, 9 months ago by
keepthefaith11.
- Post
-
- July 2, 2016 at 10:09 pm
We are 6 months out from my dad’s stage 3C diagnosis. The full body pet scan back in December showed no cancer. Except in the lymph nodes which were taken out. He also had a CT scan in April, completely clean.
They are now back in Europe for the summer and last night my dad had an epileptic type incident. (He does not have epilepsy. He was rushed to the ER and they did a CT scan of the brain. The doctor says he sees a couple of “shadows” in the brain but can’t be sure what it is. They are doing an MRI hopefully tomorrow.Obviously with the recent melanoma diagnosis one has to assume that these are mets.
I am hopefully wishing this is something completely unrelated. But I realized it’s unlikely. What do we do now? If these are in fact mets, what is standard procedure? Celeste, I have read a lot of your blogs and they have been very helpful. It seems gamma knife followed by Opdivo or Keytruda is the way to go. But what about surgery? How big do the tumors need to be for that to be an option? This is all new to me and I am quickly trying to read up on it. We thought we might have beat the Beast. I want to make sure I am ready to talk to the doctors in Europe if it comes to that. I also read that gamma knife, immunotherapy followed by the BRAF Inhibitors is a great option. His cancer is BRAF positive.
I am completely devastated right now..:(
Thank you everyone,
Annica
- Replies
-
-
- July 2, 2016 at 10:59 pm
Oh, Annica… I am sorry. Melanoma is a sneaky beast.
To the points…this recent post (already discussed here on MPIP, so you may have seen it) may be very pertinent for your dad…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
It basically points out that brain mets need to be treated ASAP with SRS AND anti-PD1!!! Do NOT wait to do one…then the other. Many of us here….myself and President Jimmy Carter included….though I waited longer than I wanted to because I was back in the day and dealing with a clinical trial…are a living testiment to this.
On the other hand….surgery is sometimes what is needed regarding brian mets…but this is usually when they are particularly large and/or in places in which radiation therapy would cause too much colateral damage. (Kyle Z has dealt with a good deal of this and may respond.)
As to picking whether to do BRAFi first followed by immunotherapy (which is usually the way it is recommended…decrease the tumor burden then rapidly shift to immunotherapy before tumor work-around occurs) is sort of a crap shoot. BOTH (BRAFi and immunotherapy) work on brain mets!!!!! But, it is broken down pretty well here….(or as well as it can be done)…by two melanoma experts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
Hope that helps. Hang in there. Sorry. C
-
- July 3, 2016 at 2:37 am
Thank you so much Celeste! I have been reading your blogs for hours today and I am learning a lot thanks to you! Question, how do you know if the tumor is PD-L1 positive or not?It scares me so much thinking about this, but knowing all of you who are living with stage 4 gives me hope.
Thank you,
Annie
-
- July 3, 2016 at 12:51 pm
That is the tricky question isn't it? Just now researchers haven't decided upon the one best test for PD-L1 that is most concisitent, accurate and available. Brain mets complicate the matter further…because if you are going to zap them…you are not likely to dig around in them (and by extension the brain) in order to biopsy them. Presumably you could use the results from more superficial tumors (or have the test done on tumor samples from the original tumor used in the initial diagnosis)…but again testing is often not readily available. Some of us, like me and the folks in my trial, were tested but were never told our results! You could still talk to your docs about it and see what options you have. At this point, most decisions re BRAFi vs immunotherapy is just based on tumor burden and personal preference. My hope is that before long we will have a dependable test that is used when diagnosis is first made just like BRAF testing. Until then…
Talk to you doc! Hang in there! C
-
- July 3, 2016 at 12:51 pm
That is the tricky question isn't it? Just now researchers haven't decided upon the one best test for PD-L1 that is most concisitent, accurate and available. Brain mets complicate the matter further…because if you are going to zap them…you are not likely to dig around in them (and by extension the brain) in order to biopsy them. Presumably you could use the results from more superficial tumors (or have the test done on tumor samples from the original tumor used in the initial diagnosis)…but again testing is often not readily available. Some of us, like me and the folks in my trial, were tested but were never told our results! You could still talk to your docs about it and see what options you have. At this point, most decisions re BRAFi vs immunotherapy is just based on tumor burden and personal preference. My hope is that before long we will have a dependable test that is used when diagnosis is first made just like BRAF testing. Until then…
Talk to you doc! Hang in there! C
-
- July 3, 2016 at 12:51 pm
That is the tricky question isn't it? Just now researchers haven't decided upon the one best test for PD-L1 that is most concisitent, accurate and available. Brain mets complicate the matter further…because if you are going to zap them…you are not likely to dig around in them (and by extension the brain) in order to biopsy them. Presumably you could use the results from more superficial tumors (or have the test done on tumor samples from the original tumor used in the initial diagnosis)…but again testing is often not readily available. Some of us, like me and the folks in my trial, were tested but were never told our results! You could still talk to your docs about it and see what options you have. At this point, most decisions re BRAFi vs immunotherapy is just based on tumor burden and personal preference. My hope is that before long we will have a dependable test that is used when diagnosis is first made just like BRAF testing. Until then…
Talk to you doc! Hang in there! C
-
- July 3, 2016 at 2:37 am
Thank you so much Celeste! I have been reading your blogs for hours today and I am learning a lot thanks to you! Question, how do you know if the tumor is PD-L1 positive or not?It scares me so much thinking about this, but knowing all of you who are living with stage 4 gives me hope.
Thank you,
Annie
-
- July 3, 2016 at 2:37 am
Thank you so much Celeste! I have been reading your blogs for hours today and I am learning a lot thanks to you! Question, how do you know if the tumor is PD-L1 positive or not?It scares me so much thinking about this, but knowing all of you who are living with stage 4 gives me hope.
Thank you,
Annie
-
- July 3, 2016 at 2:59 am
Celeste
When treating brain mets with SRS and anti-PD1 does it matter if the mets have started to bleed or not? Would a bleeding brain mets be a contridiction to treatment? Just curious, as I believe that in most cases it is the cascade that occurs following the bleed that causes the seizures and not necessarily the tumour itself.
Thanks.
-
- July 3, 2016 at 2:59 am
Celeste
When treating brain mets with SRS and anti-PD1 does it matter if the mets have started to bleed or not? Would a bleeding brain mets be a contridiction to treatment? Just curious, as I believe that in most cases it is the cascade that occurs following the bleed that causes the seizures and not necessarily the tumour itself.
Thanks.
-
- July 3, 2016 at 1:06 pm
I don't know of a study or researcher who has specifically addressed the best approach regarding bleeding brain mets. (Doesn't mean it doesn't exisist…just that I don't know of it.) I know from work in brain mets period as well as some info and decisions made by fellow melanoma brain met peeps sometimes the decision is made to try to deal with the bleeding through surgery, clotting drugs, watching while giving systemic therapy…it varies on the person, degree of bleeding, location…and many other factors. Seizures are due to many things as well….simple increased excitablity of the brain tissue due to the presence of the tumor, location of the tumor and thereby the function of the brain cells affected, and of course bleeding is an irritant to the cells as well. However, not all tumors that cause seizures are bleeding. Additionally, treating melanoma brain mets is very, very new…at least in the way we are treating melanoma today…with BRAFi, SRS and immunotherapy. When I started my nivo trial in 2010 folks with brain mets were excluded. Brain met inclusion is a very recent development. I posted this in 2014!
Yours, celeste
-
- July 3, 2016 at 1:06 pm
I don't know of a study or researcher who has specifically addressed the best approach regarding bleeding brain mets. (Doesn't mean it doesn't exisist…just that I don't know of it.) I know from work in brain mets period as well as some info and decisions made by fellow melanoma brain met peeps sometimes the decision is made to try to deal with the bleeding through surgery, clotting drugs, watching while giving systemic therapy…it varies on the person, degree of bleeding, location…and many other factors. Seizures are due to many things as well….simple increased excitablity of the brain tissue due to the presence of the tumor, location of the tumor and thereby the function of the brain cells affected, and of course bleeding is an irritant to the cells as well. However, not all tumors that cause seizures are bleeding. Additionally, treating melanoma brain mets is very, very new…at least in the way we are treating melanoma today…with BRAFi, SRS and immunotherapy. When I started my nivo trial in 2010 folks with brain mets were excluded. Brain met inclusion is a very recent development. I posted this in 2014!
Yours, celeste
-
- July 3, 2016 at 1:06 pm
I don't know of a study or researcher who has specifically addressed the best approach regarding bleeding brain mets. (Doesn't mean it doesn't exisist…just that I don't know of it.) I know from work in brain mets period as well as some info and decisions made by fellow melanoma brain met peeps sometimes the decision is made to try to deal with the bleeding through surgery, clotting drugs, watching while giving systemic therapy…it varies on the person, degree of bleeding, location…and many other factors. Seizures are due to many things as well….simple increased excitablity of the brain tissue due to the presence of the tumor, location of the tumor and thereby the function of the brain cells affected, and of course bleeding is an irritant to the cells as well. However, not all tumors that cause seizures are bleeding. Additionally, treating melanoma brain mets is very, very new…at least in the way we are treating melanoma today…with BRAFi, SRS and immunotherapy. When I started my nivo trial in 2010 folks with brain mets were excluded. Brain met inclusion is a very recent development. I posted this in 2014!
Yours, celeste
-
- July 3, 2016 at 2:59 am
Celeste
When treating brain mets with SRS and anti-PD1 does it matter if the mets have started to bleed or not? Would a bleeding brain mets be a contridiction to treatment? Just curious, as I believe that in most cases it is the cascade that occurs following the bleed that causes the seizures and not necessarily the tumour itself.
Thanks.
-
- July 2, 2016 at 10:59 pm
Oh, Annica… I am sorry. Melanoma is a sneaky beast.
To the points…this recent post (already discussed here on MPIP, so you may have seen it) may be very pertinent for your dad…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
It basically points out that brain mets need to be treated ASAP with SRS AND anti-PD1!!! Do NOT wait to do one…then the other. Many of us here….myself and President Jimmy Carter included….though I waited longer than I wanted to because I was back in the day and dealing with a clinical trial…are a living testiment to this.
On the other hand….surgery is sometimes what is needed regarding brian mets…but this is usually when they are particularly large and/or in places in which radiation therapy would cause too much colateral damage. (Kyle Z has dealt with a good deal of this and may respond.)
As to picking whether to do BRAFi first followed by immunotherapy (which is usually the way it is recommended…decrease the tumor burden then rapidly shift to immunotherapy before tumor work-around occurs) is sort of a crap shoot. BOTH (BRAFi and immunotherapy) work on brain mets!!!!! But, it is broken down pretty well here….(or as well as it can be done)…by two melanoma experts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
Hope that helps. Hang in there. Sorry. C
-
- July 2, 2016 at 10:59 pm
Oh, Annica… I am sorry. Melanoma is a sneaky beast.
To the points…this recent post (already discussed here on MPIP, so you may have seen it) may be very pertinent for your dad…http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
It basically points out that brain mets need to be treated ASAP with SRS AND anti-PD1!!! Do NOT wait to do one…then the other. Many of us here….myself and President Jimmy Carter included….though I waited longer than I wanted to because I was back in the day and dealing with a clinical trial…are a living testiment to this.
On the other hand….surgery is sometimes what is needed regarding brian mets…but this is usually when they are particularly large and/or in places in which radiation therapy would cause too much colateral damage. (Kyle Z has dealt with a good deal of this and may respond.)
As to picking whether to do BRAFi first followed by immunotherapy (which is usually the way it is recommended…decrease the tumor burden then rapidly shift to immunotherapy before tumor work-around occurs) is sort of a crap shoot. BOTH (BRAFi and immunotherapy) work on brain mets!!!!! But, it is broken down pretty well here….(or as well as it can be done)…by two melanoma experts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/pick-your-poison-weber-and-agarwala.html
Hope that helps. Hang in there. Sorry. C
-
- July 3, 2016 at 5:21 am
Oh, Annie, I can only imagine the anxiety you must be feeling right now. I really hope it is not melanoma in his brain! If it is, definitely radiation and immunotherapy together seems to be the trick! No waiting, together as in both as close together as possible. I know he tried Yervoy, so doing Opdivo (Nivo) or Keytruda (Pembro) (the anti-PD1 drugs) plus radiation would seem the right start. Again, I am truely hoping it is not related and there are no mets in his brain. The anti-PD1 drugs are like Yervoy (Ipi) except they use a different immune checkpoint for T-cells. (Yervoy uses CTLA-4 and Opdivo & Keytruda use PD-1). His tumor does not have to be tested before starting it, it's not like targeted BRAF drugs.
Sending you lots of hugs.
-
- July 3, 2016 at 5:21 am
Oh, Annie, I can only imagine the anxiety you must be feeling right now. I really hope it is not melanoma in his brain! If it is, definitely radiation and immunotherapy together seems to be the trick! No waiting, together as in both as close together as possible. I know he tried Yervoy, so doing Opdivo (Nivo) or Keytruda (Pembro) (the anti-PD1 drugs) plus radiation would seem the right start. Again, I am truely hoping it is not related and there are no mets in his brain. The anti-PD1 drugs are like Yervoy (Ipi) except they use a different immune checkpoint for T-cells. (Yervoy uses CTLA-4 and Opdivo & Keytruda use PD-1). His tumor does not have to be tested before starting it, it's not like targeted BRAF drugs.
Sending you lots of hugs.
-
- July 3, 2016 at 12:32 pm
Thank you Jenn. The MRI will be done tomorrow so we shall see. Horrible anxiety right now. I really thought this would be over, or that we would get a break from it for a while. I am trying to stay positive reading up as much as I can. I will talk to the doctor once we have the MRI results and hope that we are on the same page with treatment plan. This is Europe so I am not sure of their course of action.I am wondering if this means the Yervoy did not work at all. I know sometimes there can be a delayed effect right? It has been almost 4 months since his last infusion though.
Thank you for all your support.
Annie
-
- July 3, 2016 at 12:32 pm
Thank you Jenn. The MRI will be done tomorrow so we shall see. Horrible anxiety right now. I really thought this would be over, or that we would get a break from it for a while. I am trying to stay positive reading up as much as I can. I will talk to the doctor once we have the MRI results and hope that we are on the same page with treatment plan. This is Europe so I am not sure of their course of action.I am wondering if this means the Yervoy did not work at all. I know sometimes there can be a delayed effect right? It has been almost 4 months since his last infusion though.
Thank you for all your support.
Annie
-
- July 3, 2016 at 12:32 pm
Thank you Jenn. The MRI will be done tomorrow so we shall see. Horrible anxiety right now. I really thought this would be over, or that we would get a break from it for a while. I am trying to stay positive reading up as much as I can. I will talk to the doctor once we have the MRI results and hope that we are on the same page with treatment plan. This is Europe so I am not sure of their course of action.I am wondering if this means the Yervoy did not work at all. I know sometimes there can be a delayed effect right? It has been almost 4 months since his last infusion though.
Thank you for all your support.
Annie
-
- July 3, 2016 at 5:21 am
Oh, Annie, I can only imagine the anxiety you must be feeling right now. I really hope it is not melanoma in his brain! If it is, definitely radiation and immunotherapy together seems to be the trick! No waiting, together as in both as close together as possible. I know he tried Yervoy, so doing Opdivo (Nivo) or Keytruda (Pembro) (the anti-PD1 drugs) plus radiation would seem the right start. Again, I am truely hoping it is not related and there are no mets in his brain. The anti-PD1 drugs are like Yervoy (Ipi) except they use a different immune checkpoint for T-cells. (Yervoy uses CTLA-4 and Opdivo & Keytruda use PD-1). His tumor does not have to be tested before starting it, it's not like targeted BRAF drugs.
Sending you lots of hugs.
-
- July 3, 2016 at 3:09 pm
Hi Annica,
I'm sorry to hear about this possible setback for your Dad.
If it were me, if it was brain mets, at this point the biggest decision for me would be picking my treatment team/facility. I'd want to find somewhere with a good neurosurgery program (radiation or surgery) as well as a good oncology program. If it turns out this way, and he wants to be treated in Europe, one place to check is the Melanoma International forum, where its founder Catherine Poole has a lot of knowledge about treatment over there — post your questions in the Stage IV forum. Melanoma Diagnosis: Stage IV
Or if it turns out to be mets, probably they would want to get him on steroids first, to possibly ease the pressure any mets might be causing. Then where I've been treated, they would convente a multi-displinary "tumor board" to discuss cases like this. The board would have oncologists, neurosurgeons, etc to decide on what combination of drugs/radiation/surgery they want to recommend.
If he wants to come back to the U.S. for treatment, I don't know if he'd run into any issues with airlines or his doctors. Ignoring that, from my own point of view I would not have any personal issue flying, at least for the particular brain met issues I was having. I don't know if his docs would prescribe and anti-seizure drug like KIeppra.
Then, if back in the U.S., would again want to pick the treatment team/facility, looking for both a good oncology program and a good neurosurgery program. One place to get rankings of neurosurgery programs, however accurate or not, is here, http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery.
i hope it's not the case for him when his MRI results come back. But if it is a setback, those are the things I would be thinking about for myself at this point. Europe or U.S., then picking a treatment facility/team. Hoping for the best.
– Kyle
-
- July 3, 2016 at 3:09 pm
Hi Annica,
I'm sorry to hear about this possible setback for your Dad.
If it were me, if it was brain mets, at this point the biggest decision for me would be picking my treatment team/facility. I'd want to find somewhere with a good neurosurgery program (radiation or surgery) as well as a good oncology program. If it turns out this way, and he wants to be treated in Europe, one place to check is the Melanoma International forum, where its founder Catherine Poole has a lot of knowledge about treatment over there — post your questions in the Stage IV forum. Melanoma Diagnosis: Stage IV
Or if it turns out to be mets, probably they would want to get him on steroids first, to possibly ease the pressure any mets might be causing. Then where I've been treated, they would convente a multi-displinary "tumor board" to discuss cases like this. The board would have oncologists, neurosurgeons, etc to decide on what combination of drugs/radiation/surgery they want to recommend.
If he wants to come back to the U.S. for treatment, I don't know if he'd run into any issues with airlines or his doctors. Ignoring that, from my own point of view I would not have any personal issue flying, at least for the particular brain met issues I was having. I don't know if his docs would prescribe and anti-seizure drug like KIeppra.
Then, if back in the U.S., would again want to pick the treatment team/facility, looking for both a good oncology program and a good neurosurgery program. One place to get rankings of neurosurgery programs, however accurate or not, is here, http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery.
i hope it's not the case for him when his MRI results come back. But if it is a setback, those are the things I would be thinking about for myself at this point. Europe or U.S., then picking a treatment facility/team. Hoping for the best.
– Kyle
-
- July 3, 2016 at 5:18 pm
Thank you everyone. He has had about 4 additional seizures in the past few hours. This is after he was fine for 36 hours after the inital attack. They can’t do MRI unless he can be still. Really scared, what is happening?? He needs to get back from this so we can find out what is going on and start treatment. -
- July 3, 2016 at 5:18 pm
Thank you everyone. He has had about 4 additional seizures in the past few hours. This is after he was fine for 36 hours after the inital attack. They can’t do MRI unless he can be still. Really scared, what is happening?? He needs to get back from this so we can find out what is going on and start treatment. -
- July 4, 2016 at 12:45 am
Both of the times I was waiting a week for surgery my doctors gave me Decadron (dexamethasone), a steroid to relieve some pressure tumors were putting on the brain. It reduced some of my symptoms. Are his current doctors talking about the possibility using a steroid might help with the seizures so he can get the MRI? I know it's hard to have a lot of details from a distance. Do the doctors where he is being treated right now seem like they are capable of doing what needs to be done to get him past the MRI to whatever the next step is? This must be really hard on your Mom over there trying to handle all of this.
-
- July 4, 2016 at 12:45 am
Both of the times I was waiting a week for surgery my doctors gave me Decadron (dexamethasone), a steroid to relieve some pressure tumors were putting on the brain. It reduced some of my symptoms. Are his current doctors talking about the possibility using a steroid might help with the seizures so he can get the MRI? I know it's hard to have a lot of details from a distance. Do the doctors where he is being treated right now seem like they are capable of doing what needs to be done to get him past the MRI to whatever the next step is? This must be really hard on your Mom over there trying to handle all of this.
-
- July 4, 2016 at 2:15 am
Kyle, thank you for responding. I am close to having a panic attack. Your response came at the right time. After the seizures they did a blood test to find out how much seizure medicine was in his blood. The doctor said the pills they gave him this morning must not have been absorb well by him because there was no real levels in his blood. This might explain the seizures this afternoon. Yesterday they had given him intravenous medication and he was perfectly fine all day all night and all the way until the afternoon today. This morning he actually said he felt better than ever and was very talkative and happy. The doctor also said that they gave him some steroids for the possible swelling, just as you suggested. So I feel good about them doing the right thing as of now. I am confident they will be able to do the MRI tomorrow. The hospital he is at is one of the best in the country and actually a research hospital. They have highly qualified doctors so I feel he is in good hands.
Problem today though was that it was a Sunday so not as many doctors available. They made him comfortable for tonight so hopefully he will sleep well and be ready for scan tomorrow. My mom is sleeping in the room with him and there is a nurse sitting in his room and watching him all night.It is extremely difficult for me to be so far away. When he was here I was involved every minute of the journey. I am kind of a control freak and like to the informed about every step. My mom has lots of family around and my brother is a 6 hour drive away. She said she was fine for now but she knows that people will show up at her side as soon as she asks.
Thank you so much for checking in on this thread. It means the world to have everyone’s support.
Annie
-
- July 4, 2016 at 2:15 am
Kyle, thank you for responding. I am close to having a panic attack. Your response came at the right time. After the seizures they did a blood test to find out how much seizure medicine was in his blood. The doctor said the pills they gave him this morning must not have been absorb well by him because there was no real levels in his blood. This might explain the seizures this afternoon. Yesterday they had given him intravenous medication and he was perfectly fine all day all night and all the way until the afternoon today. This morning he actually said he felt better than ever and was very talkative and happy. The doctor also said that they gave him some steroids for the possible swelling, just as you suggested. So I feel good about them doing the right thing as of now. I am confident they will be able to do the MRI tomorrow. The hospital he is at is one of the best in the country and actually a research hospital. They have highly qualified doctors so I feel he is in good hands.
Problem today though was that it was a Sunday so not as many doctors available. They made him comfortable for tonight so hopefully he will sleep well and be ready for scan tomorrow. My mom is sleeping in the room with him and there is a nurse sitting in his room and watching him all night.It is extremely difficult for me to be so far away. When he was here I was involved every minute of the journey. I am kind of a control freak and like to the informed about every step. My mom has lots of family around and my brother is a 6 hour drive away. She said she was fine for now but she knows that people will show up at her side as soon as she asks.
Thank you so much for checking in on this thread. It means the world to have everyone’s support.
Annie
-
- July 4, 2016 at 2:15 am
Kyle, thank you for responding. I am close to having a panic attack. Your response came at the right time. After the seizures they did a blood test to find out how much seizure medicine was in his blood. The doctor said the pills they gave him this morning must not have been absorb well by him because there was no real levels in his blood. This might explain the seizures this afternoon. Yesterday they had given him intravenous medication and he was perfectly fine all day all night and all the way until the afternoon today. This morning he actually said he felt better than ever and was very talkative and happy. The doctor also said that they gave him some steroids for the possible swelling, just as you suggested. So I feel good about them doing the right thing as of now. I am confident they will be able to do the MRI tomorrow. The hospital he is at is one of the best in the country and actually a research hospital. They have highly qualified doctors so I feel he is in good hands.
Problem today though was that it was a Sunday so not as many doctors available. They made him comfortable for tonight so hopefully he will sleep well and be ready for scan tomorrow. My mom is sleeping in the room with him and there is a nurse sitting in his room and watching him all night.It is extremely difficult for me to be so far away. When he was here I was involved every minute of the journey. I am kind of a control freak and like to the informed about every step. My mom has lots of family around and my brother is a 6 hour drive away. She said she was fine for now but she knows that people will show up at her side as soon as she asks.
Thank you so much for checking in on this thread. It means the world to have everyone’s support.
Annie
-
- July 4, 2016 at 12:45 am
Both of the times I was waiting a week for surgery my doctors gave me Decadron (dexamethasone), a steroid to relieve some pressure tumors were putting on the brain. It reduced some of my symptoms. Are his current doctors talking about the possibility using a steroid might help with the seizures so he can get the MRI? I know it's hard to have a lot of details from a distance. Do the doctors where he is being treated right now seem like they are capable of doing what needs to be done to get him past the MRI to whatever the next step is? This must be really hard on your Mom over there trying to handle all of this.
-
- July 3, 2016 at 5:18 pm
Thank you everyone. He has had about 4 additional seizures in the past few hours. This is after he was fine for 36 hours after the inital attack. They can’t do MRI unless he can be still. Really scared, what is happening?? He needs to get back from this so we can find out what is going on and start treatment.
-
- July 3, 2016 at 3:09 pm
Hi Annica,
I'm sorry to hear about this possible setback for your Dad.
If it were me, if it was brain mets, at this point the biggest decision for me would be picking my treatment team/facility. I'd want to find somewhere with a good neurosurgery program (radiation or surgery) as well as a good oncology program. If it turns out this way, and he wants to be treated in Europe, one place to check is the Melanoma International forum, where its founder Catherine Poole has a lot of knowledge about treatment over there — post your questions in the Stage IV forum. Melanoma Diagnosis: Stage IV
Or if it turns out to be mets, probably they would want to get him on steroids first, to possibly ease the pressure any mets might be causing. Then where I've been treated, they would convente a multi-displinary "tumor board" to discuss cases like this. The board would have oncologists, neurosurgeons, etc to decide on what combination of drugs/radiation/surgery they want to recommend.
If he wants to come back to the U.S. for treatment, I don't know if he'd run into any issues with airlines or his doctors. Ignoring that, from my own point of view I would not have any personal issue flying, at least for the particular brain met issues I was having. I don't know if his docs would prescribe and anti-seizure drug like KIeppra.
Then, if back in the U.S., would again want to pick the treatment team/facility, looking for both a good oncology program and a good neurosurgery program. One place to get rankings of neurosurgery programs, however accurate or not, is here, http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery.
i hope it's not the case for him when his MRI results come back. But if it is a setback, those are the things I would be thinking about for myself at this point. Europe or U.S., then picking a treatment facility/team. Hoping for the best.
– Kyle
-
- You must be logged in to reply to this topic.