› Forums › General Melanoma Community › 3-4 months to live -Brain Mets -Please help
- This topic has 24 replies, 5 voices, and was last updated 9 years, 1 month ago by
BrianP.
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- March 11, 2015 at 8:41 am
My friend aged 62 years was diagnosed with metastatic malignant melanoma in April 2014. HPR showed malignant melanoma of sole with invasion of 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 ingunial lymphnode ECE. She underwent surgery in May 2014.
The doctor opted for observation. She was doing fine till Oct 14, when she complained of imbalance and right lower limb weakness.The MRI showed multiple intraparenchymal lesion scattered bilateral, frontal, parietal,left occipital region largest measuring 2.5×2.3 cm. She received external beam radiotheraphy to whole brain from 27/10/14 -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 was doing completely fine . She one day complained of pain in both knees and had difficulty walking. We had to support her even to go the restroom. Her 6th chemo was scheduled on March 2 . We went to the doctor and informed him about this. He delayed chemo for 1 day and gave her meds like mannitol etc. Then continued with her chemo and said the pain is not related to lesions in brain, She got discharged on March 7. She came back and was not able to get up herself due to weakness. Next day she was in a hazy sort of situation, taking time to understand. Her right leg and right arm had become very weak. We rushed her to emergency the next day. The doc ordered an MRI of the brain. The reports showed multiple intraparenchymal well defined nodular lesions scattered in frontal ,parietal,left occipital regions, largest measuring 3.1×2.8 cm in left frontoparietal region. Moderate perilesional edema is noted with effacement of frontal horn and mild midline shift of 3.5 mm towards right.
They asked us since it is last stage and the problem has reoccured, there is little hope. Now they would be doing stereotactic RT from 12/3/15 for 10 days but arnt hopeful if it would help. They say she has just 3-4 months to live. In the meantime her condition has improved slightly . She is able to get up on her own and there is less weakness in right arm and leg. Her all other reports are good.
Just 3-4 months to live when she has shown improvement..how is this possible? Is this illness so dreadful? Is there no chance of survival in case of brain mets? Looks like my world has come to an end after hearing this..can anyone please help? Is there any ray of hope.
Stay Blessed!
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- March 11, 2015 at 12:44 pm
What chemo did she receive? Is she seeing a melanoma specialist?
In my opinion she needs treated by a melanoma specialist as quick as possible. One thing they would do is a test on the biopsy material to see if she has the B-RAF mutation. For me that took about 2 days. If that comes back positive she could immediately start taking the tafinlar mekinist pills which has some documented evidence proving they work on brain mets as well and when they work they work rather quickly. While that is being done they would probably do some type of radiation like you describe either gamma knife or whole brain. A real good doc would also start immunotherapy of either yervoy, opdivo or keytruda but these take time to work. A really good doc could also get her into a trial with these or other meds.
it sounds like she is in a critical way and time is of the essence. Some of the bigger places to go would be md Anderson in Houston or msk in new york. I dunno where you are located.
Hope that helps.
Artie
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- March 11, 2015 at 12:44 pm
What chemo did she receive? Is she seeing a melanoma specialist?
In my opinion she needs treated by a melanoma specialist as quick as possible. One thing they would do is a test on the biopsy material to see if she has the B-RAF mutation. For me that took about 2 days. If that comes back positive she could immediately start taking the tafinlar mekinist pills which has some documented evidence proving they work on brain mets as well and when they work they work rather quickly. While that is being done they would probably do some type of radiation like you describe either gamma knife or whole brain. A real good doc would also start immunotherapy of either yervoy, opdivo or keytruda but these take time to work. A really good doc could also get her into a trial with these or other meds.
it sounds like she is in a critical way and time is of the essence. Some of the bigger places to go would be md Anderson in Houston or msk in new york. I dunno where you are located.
Hope that helps.
Artie
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- March 11, 2015 at 12:44 pm
What chemo did she receive? Is she seeing a melanoma specialist?
In my opinion she needs treated by a melanoma specialist as quick as possible. One thing they would do is a test on the biopsy material to see if she has the B-RAF mutation. For me that took about 2 days. If that comes back positive she could immediately start taking the tafinlar mekinist pills which has some documented evidence proving they work on brain mets as well and when they work they work rather quickly. While that is being done they would probably do some type of radiation like you describe either gamma knife or whole brain. A real good doc would also start immunotherapy of either yervoy, opdivo or keytruda but these take time to work. A really good doc could also get her into a trial with these or other meds.
it sounds like she is in a critical way and time is of the essence. Some of the bigger places to go would be md Anderson in Houston or msk in new york. I dunno where you are located.
Hope that helps.
Artie
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- March 12, 2015 at 6:49 am
It would be great if you could tell us where you are located and if you are seeing a melanoma specialists. Others could recommend some near you.
From some things you've said it does not sound like your firend is seeing one and that is what she needs. And she needs to see if she is BRAF positive and if so take the combo that Aritie has suggested. I can work fast.
I've responded to you previously and told you that my Mom had gamma knife radiation followed in days by Yervoy. I have heard that Keytruda may work faster on the brain and perhaps gamma knife radiation with it could help… I don't know.
But I do know that you need to act fast .
Read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- March 12, 2015 at 7:05 am
Read the articles below and take a look at the first on BRAF and SRS…
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- March 13, 2015 at 9:10 am
Thanks for the reply. Iam based out of India (Asia). Sadly , there are no melanoma specialist here. My friend has showed slight improvement. She is able to get up on her own now and feeling less weak. Just had her first radiation done. 9 more to go.
Can anyone suggest a good doctor in India? Is there any melanoma specialist you all know in US whom I can email the report and have a look and give opinion.
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- March 13, 2015 at 9:10 am
Thanks for the reply. Iam based out of India (Asia). Sadly , there are no melanoma specialist here. My friend has showed slight improvement. She is able to get up on her own now and feeling less weak. Just had her first radiation done. 9 more to go.
Can anyone suggest a good doctor in India? Is there any melanoma specialist you all know in US whom I can email the report and have a look and give opinion.
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- March 13, 2015 at 9:10 am
Thanks for the reply. Iam based out of India (Asia). Sadly , there are no melanoma specialist here. My friend has showed slight improvement. She is able to get up on her own now and feeling less weak. Just had her first radiation done. 9 more to go.
Can anyone suggest a good doctor in India? Is there any melanoma specialist you all know in US whom I can email the report and have a look and give opinion.
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- March 14, 2015 at 3:38 am
While she is doing radiation or soon after is she also able to get on an immunotherapy medicine like yervoy or opdivo or keytruda?
Has she had the braf mutation test yet? Did it come back positive? If it did can she get on the tafinlar and mekinist pills yet?
go to forum.melanomainternational.org Scroll to the bottom of that page. See over to the right a link that says email. Click it and email what you want. If you want right above that email link is a phone number if you want to talk by phone. That is the information to contact the melanoma international group who should be able to help. Catherine Poole and her staff helps a lot of people with melanoma find doctors in various countries and pretty much everything they can possibly do.
Artie
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- March 14, 2015 at 3:38 am
While she is doing radiation or soon after is she also able to get on an immunotherapy medicine like yervoy or opdivo or keytruda?
Has she had the braf mutation test yet? Did it come back positive? If it did can she get on the tafinlar and mekinist pills yet?
go to forum.melanomainternational.org Scroll to the bottom of that page. See over to the right a link that says email. Click it and email what you want. If you want right above that email link is a phone number if you want to talk by phone. That is the information to contact the melanoma international group who should be able to help. Catherine Poole and her staff helps a lot of people with melanoma find doctors in various countries and pretty much everything they can possibly do.
Artie
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- March 14, 2015 at 3:38 am
While she is doing radiation or soon after is she also able to get on an immunotherapy medicine like yervoy or opdivo or keytruda?
Has she had the braf mutation test yet? Did it come back positive? If it did can she get on the tafinlar and mekinist pills yet?
go to forum.melanomainternational.org Scroll to the bottom of that page. See over to the right a link that says email. Click it and email what you want. If you want right above that email link is a phone number if you want to talk by phone. That is the information to contact the melanoma international group who should be able to help. Catherine Poole and her staff helps a lot of people with melanoma find doctors in various countries and pretty much everything they can possibly do.
Artie
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- March 19, 2015 at 2:32 am
I hope you got the help you needed.
Artie
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- March 19, 2015 at 2:32 am
I hope you got the help you needed.
Artie
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- March 19, 2015 at 2:32 am
I hope you got the help you needed.
Artie
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- March 28, 2015 at 6:07 pm
If someone mentioned this already I didn't see it but are you aware of the Melanoma International Foundation Forum? Similar to this forum but smaller and not quite as active but there is a little more international involvement. The moderator (Catherine Poole) has contacts and information on trials all over the world. She'll often go above and beyond to help patients out. I'm sure if you post a question on that forum similar to the one you posted here she will reply.
http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=07c3b04264913136c1b7632778fabe59
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- March 28, 2015 at 6:07 pm
If someone mentioned this already I didn't see it but are you aware of the Melanoma International Foundation Forum? Similar to this forum but smaller and not quite as active but there is a little more international involvement. The moderator (Catherine Poole) has contacts and information on trials all over the world. She'll often go above and beyond to help patients out. I'm sure if you post a question on that forum similar to the one you posted here she will reply.
http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=07c3b04264913136c1b7632778fabe59
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- March 28, 2015 at 6:07 pm
If someone mentioned this already I didn't see it but are you aware of the Melanoma International Foundation Forum? Similar to this forum but smaller and not quite as active but there is a little more international involvement. The moderator (Catherine Poole) has contacts and information on trials all over the world. She'll often go above and beyond to help patients out. I'm sure if you post a question on that forum similar to the one you posted here she will reply.
http://forum.melanomainternational.org/mif/viewforum.php?f=54&sid=07c3b04264913136c1b7632778fabe59
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- March 12, 2015 at 7:05 am
Read the articles below and take a look at the first on BRAF and SRS…
-
- March 12, 2015 at 7:05 am
Read the articles below and take a look at the first on BRAF and SRS…
-
- March 12, 2015 at 6:49 am
It would be great if you could tell us where you are located and if you are seeing a melanoma specialists. Others could recommend some near you.
From some things you've said it does not sound like your firend is seeing one and that is what she needs. And she needs to see if she is BRAF positive and if so take the combo that Aritie has suggested. I can work fast.
I've responded to you previously and told you that my Mom had gamma knife radiation followed in days by Yervoy. I have heard that Keytruda may work faster on the brain and perhaps gamma knife radiation with it could help… I don't know.
But I do know that you need to act fast .
Read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
-
- March 12, 2015 at 6:49 am
It would be great if you could tell us where you are located and if you are seeing a melanoma specialists. Others could recommend some near you.
From some things you've said it does not sound like your firend is seeing one and that is what she needs. And she needs to see if she is BRAF positive and if so take the combo that Aritie has suggested. I can work fast.
I've responded to you previously and told you that my Mom had gamma knife radiation followed in days by Yervoy. I have heard that Keytruda may work faster on the brain and perhaps gamma knife radiation with it could help… I don't know.
But I do know that you need to act fast .
Read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- March 28, 2015 at 5:44 pm
How are you and your friend doing? I agree with Artie, time is of essence. Melanoma is so unpredictable. My husband had a similar course as your friend. They told him 3-4 months with WBR. He had 5 treatments along with two ipi's but couldn't beat it. Ask lots of questions and keep hope. I have seen so many positive outcomes-stay positive.
Wishing you all the best.
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- March 28, 2015 at 5:44 pm
How are you and your friend doing? I agree with Artie, time is of essence. Melanoma is so unpredictable. My husband had a similar course as your friend. They told him 3-4 months with WBR. He had 5 treatments along with two ipi's but couldn't beat it. Ask lots of questions and keep hope. I have seen so many positive outcomes-stay positive.
Wishing you all the best.
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- March 28, 2015 at 5:44 pm
How are you and your friend doing? I agree with Artie, time is of essence. Melanoma is so unpredictable. My husband had a similar course as your friend. They told him 3-4 months with WBR. He had 5 treatments along with two ipi's but couldn't beat it. Ask lots of questions and keep hope. I have seen so many positive outcomes-stay positive.
Wishing you all the best.
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Tagged: cutaneous melanoma
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