› Forums › General Melanoma Community › Brain Mets
- This topic has 27 replies, 4 voices, and was last updated 9 years, 2 months ago by
arthurjedi007.
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- March 8, 2015 at 10:14 am
My friend aged about 62 was diagnosed withmetastatic malignant Melanoma in April 2014 . HPR showed malignant melanoma of left sole with invasion into reticular dermis,tumor thickness upto 3mm, no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 inguinal lymphode positive ECE.She underwent surgery on May 14.
The doctor opted for observation. Her scans were all clear till 25 Oct, 14. She complained of imbalance and right lower limb weakness. The MRI of brain showed multiple intraparenchymal lesion scattered in bilateral frontal,parietal,left occipital regions, largest measuring 2.5×2.3 cm in left frontoparietal region, She received palliative external beam radiotheraphy to whole brain to a dose of 30gy/10# from 27/10 to 6/11/14 PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes. She has just completed her 6th chemotheraphy and now has weakness in right arm and right leg. She is facing a slight not very much) difficulty in understanding and responding. Looks like the brain mets are active again. She was doing good after her radiation and this happened suddenly.
We will see the doctor tomorrow. My question is how much raditaion can be given to a person? Her radiation got over on 6/11/14. What are the survival chances in case of brain mets? I love my friend and it dreads me what might happen next. I am just not able to function now
Can anyone please help.
God bless!
- Replies
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- March 8, 2015 at 10:53 am
Sorry to hear about your friend.You don’t mention if she is being seen by a melanoma specialist. If she is not, find one. If she is, get a second opinion and look into gamma knife radiation. Your friend may also want to look at Mercks new immunetheraphy drug.- My Mom took Yervoy, but there is some speculation that Mercks drug may work faster on the brain…
My Mom had a total of 25 brain mets treated. She never experienced any issues, but they were there. She is doing great. Back to normal and headed toward NED we hope. Last brain scan showed 4 stable tumors. 21 were gone.
My best advice is to look into what I have mentioned, see if she is BRAF positive and if so look into the comb drug that includes a MEK inhibitor too.
I also recommend checking out the last few posts I have responded to. One has a link about a article that says whole brain may not be as good as gamma knife for the long run. And check out the info on canabinoids. Another study that indicates canabinoids my be very beneficial to brain cancer patients.
If you are in Southern California, I highly recommend Dr. Eric Chang and Dr. Mike Wong.
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My posts have a lot nore about my Mom’s treatment and what seemed to work for her too.Good luck!
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- March 8, 2015 at 10:53 am
Sorry to hear about your friend.You don’t mention if she is being seen by a melanoma specialist. If she is not, find one. If she is, get a second opinion and look into gamma knife radiation. Your friend may also want to look at Mercks new immunetheraphy drug.- My Mom took Yervoy, but there is some speculation that Mercks drug may work faster on the brain…
My Mom had a total of 25 brain mets treated. She never experienced any issues, but they were there. She is doing great. Back to normal and headed toward NED we hope. Last brain scan showed 4 stable tumors. 21 were gone.
My best advice is to look into what I have mentioned, see if she is BRAF positive and if so look into the comb drug that includes a MEK inhibitor too.
I also recommend checking out the last few posts I have responded to. One has a link about a article that says whole brain may not be as good as gamma knife for the long run. And check out the info on canabinoids. Another study that indicates canabinoids my be very beneficial to brain cancer patients.
If you are in Southern California, I highly recommend Dr. Eric Chang and Dr. Mike Wong.
—-
My posts have a lot nore about my Mom’s treatment and what seemed to work for her too.Good luck!
-
- March 8, 2015 at 10:53 am
Sorry to hear about your friend.You don’t mention if she is being seen by a melanoma specialist. If she is not, find one. If she is, get a second opinion and look into gamma knife radiation. Your friend may also want to look at Mercks new immunetheraphy drug.- My Mom took Yervoy, but there is some speculation that Mercks drug may work faster on the brain…
My Mom had a total of 25 brain mets treated. She never experienced any issues, but they were there. She is doing great. Back to normal and headed toward NED we hope. Last brain scan showed 4 stable tumors. 21 were gone.
My best advice is to look into what I have mentioned, see if she is BRAF positive and if so look into the comb drug that includes a MEK inhibitor too.
I also recommend checking out the last few posts I have responded to. One has a link about a article that says whole brain may not be as good as gamma knife for the long run. And check out the info on canabinoids. Another study that indicates canabinoids my be very beneficial to brain cancer patients.
If you are in Southern California, I highly recommend Dr. Eric Chang and Dr. Mike Wong.
—-
My posts have a lot nore about my Mom’s treatment and what seemed to work for her too.Good luck!
-
- March 8, 2015 at 2:24 pm
Thanks Patina for the reply. Really helpful. After my friend underwent radiation her condition only improved. What is happening to her has come as a shock for us. She took radiation for 10 days in Nov. Can the radiation happen again so soon? Any insight can you provide on that.
Stay blessed !
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- March 9, 2015 at 7:55 am
There is evidence that immunotherapy drugs like Yervoy combined with gamma knife treatment have better results than alone. If you look back at some of my posts you will find some studies on this.My Mom started Yervoy 4 days after gamma knife. Stage IV, 6 tumors in trunk, 18 on her head, one on her neck. 8 of 9 brain mets treated. The tumors on her scalp and neck were gone in weeks. The blue color on her scalp completely gone within 6 months. All tumors responded. She did have a second treatment with gamma knife for 17 tumors. Not sure who you are seeing but find a second opinion and look for someone who is really experienced. The first radiologist said they did not operate on one because they thought it was a blood vessel. On followup at 30 days the radiologist that read the MRI said the 9th was a met. The doctor who did the surgery said it wasn’t. He was wrong.
I always recommend getting a second and third opinion for this reason.
Good luck and read up on whole brain vs gamma knife outlooks and cannabinoids. The later won’t cause any side effects similar to marijuana. You get that only if its heated. My Mom gets them from hemp. -
- March 9, 2015 at 7:55 am
There is evidence that immunotherapy drugs like Yervoy combined with gamma knife treatment have better results than alone. If you look back at some of my posts you will find some studies on this.My Mom started Yervoy 4 days after gamma knife. Stage IV, 6 tumors in trunk, 18 on her head, one on her neck. 8 of 9 brain mets treated. The tumors on her scalp and neck were gone in weeks. The blue color on her scalp completely gone within 6 months. All tumors responded. She did have a second treatment with gamma knife for 17 tumors. Not sure who you are seeing but find a second opinion and look for someone who is really experienced. The first radiologist said they did not operate on one because they thought it was a blood vessel. On followup at 30 days the radiologist that read the MRI said the 9th was a met. The doctor who did the surgery said it wasn’t. He was wrong.
I always recommend getting a second and third opinion for this reason.
Good luck and read up on whole brain vs gamma knife outlooks and cannabinoids. The later won’t cause any side effects similar to marijuana. You get that only if its heated. My Mom gets them from hemp. -
- March 9, 2015 at 7:55 am
There is evidence that immunotherapy drugs like Yervoy combined with gamma knife treatment have better results than alone. If you look back at some of my posts you will find some studies on this.My Mom started Yervoy 4 days after gamma knife. Stage IV, 6 tumors in trunk, 18 on her head, one on her neck. 8 of 9 brain mets treated. The tumors on her scalp and neck were gone in weeks. The blue color on her scalp completely gone within 6 months. All tumors responded. She did have a second treatment with gamma knife for 17 tumors. Not sure who you are seeing but find a second opinion and look for someone who is really experienced. The first radiologist said they did not operate on one because they thought it was a blood vessel. On followup at 30 days the radiologist that read the MRI said the 9th was a met. The doctor who did the surgery said it wasn’t. He was wrong.
I always recommend getting a second and third opinion for this reason.
Good luck and read up on whole brain vs gamma knife outlooks and cannabinoids. The later won’t cause any side effects similar to marijuana. You get that only if its heated. My Mom gets them from hemp. -
- March 8, 2015 at 2:24 pm
Thanks Patina for the reply. Really helpful. After my friend underwent radiation her condition only improved. What is happening to her has come as a shock for us. She took radiation for 10 days in Nov. Can the radiation happen again so soon? Any insight can you provide on that.
Stay blessed !
-
- March 8, 2015 at 2:24 pm
Thanks Patina for the reply. Really helpful. After my friend underwent radiation her condition only improved. What is happening to her has come as a shock for us. She took radiation for 10 days in Nov. Can the radiation happen again so soon? Any insight can you provide on that.
Stay blessed !
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- March 8, 2015 at 9:01 pm
For the radiation so soon it depends. If they are new brain mets then most likely yes especially if it is gamma knife radiation. If they are the same mets then I'm not sure a second whole brain radiation is even an option. But with what sounds like a lot of mets in the brain i doubt even gamma knife is an option either unless the second mri shows a lot less mets this time. But yes if there are still a lot of mets so gamma is not an option and the radiation doc is willing to do a second whole brain radiation then yes nov to march is plenty of time for another round. Although in my experience it is rare they will try a second time but I'm glad they did on my spine or I would have been paralyzed.
Hmm. I do recall a new phase 1 trial med being posted on here that they believe works good in the brain. The tafinlar mekinist pills have shown some data they work in the brain and they are designed for quicker response than immunotherapy which also works in the brain.
Hope that helps,
Artie
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- March 11, 2015 at 8:03 am
Thanks for both the replies. The doc would be doing stereotactic RT for 10 days but they say the effect would be temporary. They have said since it is last stage and the problem has come back she might not have long to live…just 3-4 months, Rest all her reports are good. My brain has stopped functioning what do I do..who can help..can anyone help me here?
God bless
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- March 11, 2015 at 8:03 am
Thanks for both the replies. The doc would be doing stereotactic RT for 10 days but they say the effect would be temporary. They have said since it is last stage and the problem has come back she might not have long to live…just 3-4 months, Rest all her reports are good. My brain has stopped functioning what do I do..who can help..can anyone help me here?
God bless
-
- March 11, 2015 at 8:03 am
Thanks for both the replies. The doc would be doing stereotactic RT for 10 days but they say the effect would be temporary. They have said since it is last stage and the problem has come back she might not have long to live…just 3-4 months, Rest all her reports are good. My brain has stopped functioning what do I do..who can help..can anyone help me here?
God bless
-
- March 8, 2015 at 9:01 pm
For the radiation so soon it depends. If they are new brain mets then most likely yes especially if it is gamma knife radiation. If they are the same mets then I'm not sure a second whole brain radiation is even an option. But with what sounds like a lot of mets in the brain i doubt even gamma knife is an option either unless the second mri shows a lot less mets this time. But yes if there are still a lot of mets so gamma is not an option and the radiation doc is willing to do a second whole brain radiation then yes nov to march is plenty of time for another round. Although in my experience it is rare they will try a second time but I'm glad they did on my spine or I would have been paralyzed.
Hmm. I do recall a new phase 1 trial med being posted on here that they believe works good in the brain. The tafinlar mekinist pills have shown some data they work in the brain and they are designed for quicker response than immunotherapy which also works in the brain.
Hope that helps,
Artie
-
- March 8, 2015 at 9:01 pm
For the radiation so soon it depends. If they are new brain mets then most likely yes especially if it is gamma knife radiation. If they are the same mets then I'm not sure a second whole brain radiation is even an option. But with what sounds like a lot of mets in the brain i doubt even gamma knife is an option either unless the second mri shows a lot less mets this time. But yes if there are still a lot of mets so gamma is not an option and the radiation doc is willing to do a second whole brain radiation then yes nov to march is plenty of time for another round. Although in my experience it is rare they will try a second time but I'm glad they did on my spine or I would have been paralyzed.
Hmm. I do recall a new phase 1 trial med being posted on here that they believe works good in the brain. The tafinlar mekinist pills have shown some data they work in the brain and they are designed for quicker response than immunotherapy which also works in the brain.
Hope that helps,
Artie
-
- March 11, 2015 at 10:11 am
I am very sorry that your friend is in this situation. You are doing a great thing trying to help her. I understand that you are confused and scared. It is ok to be scared and sad. But please try to be strong for your friend.
The first thing she needs to do is to see a melanoma specialist. Where are you? Which country and which state or province? You could start a thread here and write in the topic that you are looking for a melanoma specialist in this location and you will get useful responses.
You have already got good responses about radiation. I have a question about drug therapy. Has she received only chemotherapy? What kind of chemotherapy? There are new drugs now, basically two types: Immunotherapy and targeted therapy. They are much more efficient than chemotherapy so if she has received only chemotherapy, I strongly suggest to change doctor asap.
The targeted therapies only work for patient with certain mutations, most common BRAF. The doctors should check her BRAF status if this has not yet been done.
So what you do now is: Find a melanoma specialist and take your friend there!
-
- March 11, 2015 at 10:11 am
I am very sorry that your friend is in this situation. You are doing a great thing trying to help her. I understand that you are confused and scared. It is ok to be scared and sad. But please try to be strong for your friend.
The first thing she needs to do is to see a melanoma specialist. Where are you? Which country and which state or province? You could start a thread here and write in the topic that you are looking for a melanoma specialist in this location and you will get useful responses.
You have already got good responses about radiation. I have a question about drug therapy. Has she received only chemotherapy? What kind of chemotherapy? There are new drugs now, basically two types: Immunotherapy and targeted therapy. They are much more efficient than chemotherapy so if she has received only chemotherapy, I strongly suggest to change doctor asap.
The targeted therapies only work for patient with certain mutations, most common BRAF. The doctors should check her BRAF status if this has not yet been done.
So what you do now is: Find a melanoma specialist and take your friend there!
-
- March 11, 2015 at 10:17 am
Thanks for replying. I am in India. She tested negative for BRAF mutation. She received chemotheraphy and radition to whole brain .
Is there very low chances of survival for brain mets?
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- March 11, 2015 at 10:17 am
Thanks for replying. I am in India. She tested negative for BRAF mutation. She received chemotheraphy and radition to whole brain .
Is there very low chances of survival for brain mets?
-
- March 11, 2015 at 3:43 pm
Brain mets are definitely bad and it sounds like she is in a bad condition. I think that she would have the best chances with an anti PD1 drug but I don't know how she could access this and if it is available in India.
I suggest that you start a new thread with a topic saying that you are looking for a melanoma centre in your home area. You can also go to this web page and ask for the same advice:
http://forum.melanomainternational.org/mif/viewforum.php?f=54
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- March 11, 2015 at 3:43 pm
Brain mets are definitely bad and it sounds like she is in a bad condition. I think that she would have the best chances with an anti PD1 drug but I don't know how she could access this and if it is available in India.
I suggest that you start a new thread with a topic saying that you are looking for a melanoma centre in your home area. You can also go to this web page and ask for the same advice:
http://forum.melanomainternational.org/mif/viewforum.php?f=54
-
- March 11, 2015 at 3:43 pm
Brain mets are definitely bad and it sounds like she is in a bad condition. I think that she would have the best chances with an anti PD1 drug but I don't know how she could access this and if it is available in India.
I suggest that you start a new thread with a topic saying that you are looking for a melanoma centre in your home area. You can also go to this web page and ask for the same advice:
http://forum.melanomainternational.org/mif/viewforum.php?f=54
-
- March 11, 2015 at 5:59 pm
For India you might want to try the multi country forum. Maybe they know better what can be done in India. It's link is forum.melanomainternational.org
with the right treatment and enough time, prayers and strength she can beat these brain mets.
first the second radiation can give her some time. Second getting on an immunotherapy as soon as possible so it has time to work is very important. If that can be done while doing radiation that would be great. Those meds are opdivo, keytruda or yervoy. Third there might be a trial in India but I don't know.
Artie
-
- March 11, 2015 at 5:59 pm
For India you might want to try the multi country forum. Maybe they know better what can be done in India. It's link is forum.melanomainternational.org
with the right treatment and enough time, prayers and strength she can beat these brain mets.
first the second radiation can give her some time. Second getting on an immunotherapy as soon as possible so it has time to work is very important. If that can be done while doing radiation that would be great. Those meds are opdivo, keytruda or yervoy. Third there might be a trial in India but I don't know.
Artie
-
- March 11, 2015 at 5:59 pm
For India you might want to try the multi country forum. Maybe they know better what can be done in India. It's link is forum.melanomainternational.org
with the right treatment and enough time, prayers and strength she can beat these brain mets.
first the second radiation can give her some time. Second getting on an immunotherapy as soon as possible so it has time to work is very important. If that can be done while doing radiation that would be great. Those meds are opdivo, keytruda or yervoy. Third there might be a trial in India but I don't know.
Artie
-
- March 11, 2015 at 10:17 am
Thanks for replying. I am in India. She tested negative for BRAF mutation. She received chemotheraphy and radition to whole brain .
Is there very low chances of survival for brain mets?
-
- March 11, 2015 at 10:11 am
I am very sorry that your friend is in this situation. You are doing a great thing trying to help her. I understand that you are confused and scared. It is ok to be scared and sad. But please try to be strong for your friend.
The first thing she needs to do is to see a melanoma specialist. Where are you? Which country and which state or province? You could start a thread here and write in the topic that you are looking for a melanoma specialist in this location and you will get useful responses.
You have already got good responses about radiation. I have a question about drug therapy. Has she received only chemotherapy? What kind of chemotherapy? There are new drugs now, basically two types: Immunotherapy and targeted therapy. They are much more efficient than chemotherapy so if she has received only chemotherapy, I strongly suggest to change doctor asap.
The targeted therapies only work for patient with certain mutations, most common BRAF. The doctors should check her BRAF status if this has not yet been done.
So what you do now is: Find a melanoma specialist and take your friend there!
-
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