› Forums › Cutaneous Melanoma Community › melanoma cancer has spread to the brain
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Johnfdc7.
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- November 30, 2012 at 3:58 pm
UP-DATE melanoma cancer has spread to the brain
UP-DATE melanoma cancer has spread to the brain
just to let everyone know my wife had a small stroke on decemebr the 15th she was admitted to derby royal where her condition went from bad to worse to cut a long story short , sue passed away on january the 12th ( ten weeks after being told she had cancer ) she was holding my hand as our wedding song played ( unchained melody ) at 2.02 of the record she passed away so peacefully and with no pain at the age of 43 i miss her so much but i have to carry on for our ten year old son who now needs me more than ever
thank you
Hi
My partner has melanoma skin cancer that has spread to the brain and brain stem, she has 3 in the stem one 2.5 cm already in a few weeks and god knows how many in the brain itself. They have not been able to find where it started in the first place only that it is melanoma cancer
Over the last few weeks she has started to get lumps over her body under the skin. Has anyone else had this ? They won’t say how long she has left but after reading so much on this cancer and how fast things are growing i don’t think it can be too long
UPDATE
She has now had 5 days of radiotherapy this has made her very tired and weak . there are going to do a C.T scan to see where else the cancer has spread to as these lumps keep popping up here and there on her body we have to go back on the 18th of December . Everything seems to happen at such a slow pace no, one seems to rush in doing anything. They say next step in treatment will be chemotherapy i just don’t know what to expect any more in all this
Does anyone know how things will progress and how tuff things will get for her and us
(Please excuse my spelling and things I’m not the best sorry)
Des
UK ENGLAND
- Replies
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- November 30, 2012 at 10:02 pm
Hi Des
I am very sorry to read of how bad things are for your partner. It must be very difficult for you to be optimistic and supportive, especially with a lack of information. There are many knowledgeable people on this site and hopefully someone will be able to give you some practical advice. Meantime, I hope you are able to stay strong, and I wish you the best for your appt on 18 December.
Denise
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- November 30, 2012 at 10:02 pm
Hi Des
I am very sorry to read of how bad things are for your partner. It must be very difficult for you to be optimistic and supportive, especially with a lack of information. There are many knowledgeable people on this site and hopefully someone will be able to give you some practical advice. Meantime, I hope you are able to stay strong, and I wish you the best for your appt on 18 December.
Denise
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- November 30, 2012 at 10:02 pm
Hi Des
I am very sorry to read of how bad things are for your partner. It must be very difficult for you to be optimistic and supportive, especially with a lack of information. There are many knowledgeable people on this site and hopefully someone will be able to give you some practical advice. Meantime, I hope you are able to stay strong, and I wish you the best for your appt on 18 December.
Denise
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- November 30, 2012 at 11:27 pm
Does your partner's tumor have the BRAF mutation? If she does, then perhaps Zelboraf can help. Zelboraf was just approved by the National Health Service earlier this month. Here is the article in The Guardian about it ( http://www.guardian.co.uk/society/2012/nov/02/skin-cancer-drug-nhs ). Zelboraf only works on tumors that have the BRAF mutation and it takes 2 or 3 weeks to get the tumor DNA tested for this mutation. But that's the name of the game for all of us here– advocate for ourselves and then wait and wait…
Whole brain radiation followed by Zelboraf worked well for my brother. I hope your partner will be able to try it.
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- December 1, 2012 at 10:57 am
Hi
thank you for the infomation they are doing the test for the DNA this is why we have to go back on the 18th to see resultd of ct and dna test
i know the drug only gives them a short extension for there lide but a day longer is worth it to me
i will keep all posted
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- December 2, 2012 at 1:38 am
Some people respond for years on Zelboraf, I think its like 15% or so. The way I look at it is maybe it can buy me enough time until something else comes out. Its not the end yet! Stay positive and strong. Please take care, I know its tough right now but hang in there. -
- December 2, 2012 at 1:38 am
Some people respond for years on Zelboraf, I think its like 15% or so. The way I look at it is maybe it can buy me enough time until something else comes out. Its not the end yet! Stay positive and strong. Please take care, I know its tough right now but hang in there. -
- December 2, 2012 at 1:38 am
Some people respond for years on Zelboraf, I think its like 15% or so. The way I look at it is maybe it can buy me enough time until something else comes out. Its not the end yet! Stay positive and strong. Please take care, I know its tough right now but hang in there. -
- December 1, 2012 at 10:57 am
Hi
thank you for the infomation they are doing the test for the DNA this is why we have to go back on the 18th to see resultd of ct and dna test
i know the drug only gives them a short extension for there lide but a day longer is worth it to me
i will keep all posted
-
- December 1, 2012 at 10:57 am
Hi
thank you for the infomation they are doing the test for the DNA this is why we have to go back on the 18th to see resultd of ct and dna test
i know the drug only gives them a short extension for there lide but a day longer is worth it to me
i will keep all posted
-
- November 30, 2012 at 11:27 pm
Does your partner's tumor have the BRAF mutation? If she does, then perhaps Zelboraf can help. Zelboraf was just approved by the National Health Service earlier this month. Here is the article in The Guardian about it ( http://www.guardian.co.uk/society/2012/nov/02/skin-cancer-drug-nhs ). Zelboraf only works on tumors that have the BRAF mutation and it takes 2 or 3 weeks to get the tumor DNA tested for this mutation. But that's the name of the game for all of us here– advocate for ourselves and then wait and wait…
Whole brain radiation followed by Zelboraf worked well for my brother. I hope your partner will be able to try it.
-
- November 30, 2012 at 11:27 pm
Does your partner's tumor have the BRAF mutation? If she does, then perhaps Zelboraf can help. Zelboraf was just approved by the National Health Service earlier this month. Here is the article in The Guardian about it ( http://www.guardian.co.uk/society/2012/nov/02/skin-cancer-drug-nhs ). Zelboraf only works on tumors that have the BRAF mutation and it takes 2 or 3 weeks to get the tumor DNA tested for this mutation. But that's the name of the game for all of us here– advocate for ourselves and then wait and wait…
Whole brain radiation followed by Zelboraf worked well for my brother. I hope your partner will be able to try it.
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- December 1, 2012 at 6:24 pm
Hi Des,
I'm sorry to hear what your partner and you are going through.
The lumps sound like 'subcutaneous metastases'. I have not had those but that's a good search term (also shortented to sub-q, etc.) to find postings on this forum.
Have they given you a count of what's they're seeing in your partner's brain besides the 3 around the brain stem?
It sounds like they're doing 'whole brain radiation' (WBR) if she's had 5 days so far. Did they talk about whether craniotomy/resection was possible for the 2.5 cm brain stem met (is that the largest?)
I had CNS (central nervous system) disease (5 brain mets, none around stem) show up during 2010-2011, but 2012 has been good so far (stable). I'm negative for the BRAF mutation and was treated with Gamma and Cyber Knife, a couple of craniotomies and ipilimumab. It's hard to know how things will go for anybody's disease. CNS disease is scary (as are pretty much all locations). That it's serious is clear, but the treatments are more powerful now than a few years ago. Best wishes for your partner and you. Keep us posted.
– Kyle
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- December 1, 2012 at 6:24 pm
Hi Des,
I'm sorry to hear what your partner and you are going through.
The lumps sound like 'subcutaneous metastases'. I have not had those but that's a good search term (also shortented to sub-q, etc.) to find postings on this forum.
Have they given you a count of what's they're seeing in your partner's brain besides the 3 around the brain stem?
It sounds like they're doing 'whole brain radiation' (WBR) if she's had 5 days so far. Did they talk about whether craniotomy/resection was possible for the 2.5 cm brain stem met (is that the largest?)
I had CNS (central nervous system) disease (5 brain mets, none around stem) show up during 2010-2011, but 2012 has been good so far (stable). I'm negative for the BRAF mutation and was treated with Gamma and Cyber Knife, a couple of craniotomies and ipilimumab. It's hard to know how things will go for anybody's disease. CNS disease is scary (as are pretty much all locations). That it's serious is clear, but the treatments are more powerful now than a few years ago. Best wishes for your partner and you. Keep us posted.
– Kyle
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- December 1, 2012 at 6:24 pm
Hi Des,
I'm sorry to hear what your partner and you are going through.
The lumps sound like 'subcutaneous metastases'. I have not had those but that's a good search term (also shortented to sub-q, etc.) to find postings on this forum.
Have they given you a count of what's they're seeing in your partner's brain besides the 3 around the brain stem?
It sounds like they're doing 'whole brain radiation' (WBR) if she's had 5 days so far. Did they talk about whether craniotomy/resection was possible for the 2.5 cm brain stem met (is that the largest?)
I had CNS (central nervous system) disease (5 brain mets, none around stem) show up during 2010-2011, but 2012 has been good so far (stable). I'm negative for the BRAF mutation and was treated with Gamma and Cyber Knife, a couple of craniotomies and ipilimumab. It's hard to know how things will go for anybody's disease. CNS disease is scary (as are pretty much all locations). That it's serious is clear, but the treatments are more powerful now than a few years ago. Best wishes for your partner and you. Keep us posted.
– Kyle
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- December 2, 2012 at 10:13 am
Hi Des
I am from UK too, my brother was diagnosed in July with stage 4 melanoma, he had extensive liver mets and two brain mets. His liver was very bad and we didn’t have time on our side, he was very unwell. He made the decision to go abroad for an aggressive treatment, his brain mets were zapped with Gamma knife and he started bio chemo. He has had four rounds and will be scanned on the 11 December. He so much better. His case is different to your partner but my advise is to research and research, there are lots of new treatments now and there are many people on this forum who have been NED for many years after being told they have months. -
- December 2, 2012 at 10:13 am
Hi Des
I am from UK too, my brother was diagnosed in July with stage 4 melanoma, he had extensive liver mets and two brain mets. His liver was very bad and we didn’t have time on our side, he was very unwell. He made the decision to go abroad for an aggressive treatment, his brain mets were zapped with Gamma knife and he started bio chemo. He has had four rounds and will be scanned on the 11 December. He so much better. His case is different to your partner but my advise is to research and research, there are lots of new treatments now and there are many people on this forum who have been NED for many years after being told they have months. -
- December 2, 2012 at 10:13 am
Hi Des
I am from UK too, my brother was diagnosed in July with stage 4 melanoma, he had extensive liver mets and two brain mets. His liver was very bad and we didn’t have time on our side, he was very unwell. He made the decision to go abroad for an aggressive treatment, his brain mets were zapped with Gamma knife and he started bio chemo. He has had four rounds and will be scanned on the 11 December. He so much better. His case is different to your partner but my advise is to research and research, there are lots of new treatments now and there are many people on this forum who have been NED for many years after being told they have months. -
- December 2, 2012 at 7:49 pm
Hi Des
I have been fighting melanoma since 2005 and recently had bad news like yourselves regarding brain mets. After a couple of years of watching small lung nodules and liver lesions on scans, I was was hospitalised to discover I had developed to brain lesions with significant swelling causing neuro-symptoms. By coincidence I have been lucky enough to test positive for the BRAF mutation a month or two ago. I am also lucky in that my Onc has been able to get me Dabrafenib on a compassionate basis – this is the GSK BRAF inhibitor that has been shown in some studies to be able to cross the blood/brain barrier and have an significant impact on brain mets. After 9 days on Dabrafenib,my mets had shrunk to half their original size in my radiotherapy planning scan. I have since also had steriotactic radiation on the 2 mets. Neurosurgery was not an option and we decided to avoid WBR for the moment. Fingers crossed that your BRAF testing turns up positive for you.
John
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- December 2, 2012 at 7:49 pm
Hi Des
I have been fighting melanoma since 2005 and recently had bad news like yourselves regarding brain mets. After a couple of years of watching small lung nodules and liver lesions on scans, I was was hospitalised to discover I had developed to brain lesions with significant swelling causing neuro-symptoms. By coincidence I have been lucky enough to test positive for the BRAF mutation a month or two ago. I am also lucky in that my Onc has been able to get me Dabrafenib on a compassionate basis – this is the GSK BRAF inhibitor that has been shown in some studies to be able to cross the blood/brain barrier and have an significant impact on brain mets. After 9 days on Dabrafenib,my mets had shrunk to half their original size in my radiotherapy planning scan. I have since also had steriotactic radiation on the 2 mets. Neurosurgery was not an option and we decided to avoid WBR for the moment. Fingers crossed that your BRAF testing turns up positive for you.
John
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- December 2, 2012 at 7:49 pm
Hi Des
I have been fighting melanoma since 2005 and recently had bad news like yourselves regarding brain mets. After a couple of years of watching small lung nodules and liver lesions on scans, I was was hospitalised to discover I had developed to brain lesions with significant swelling causing neuro-symptoms. By coincidence I have been lucky enough to test positive for the BRAF mutation a month or two ago. I am also lucky in that my Onc has been able to get me Dabrafenib on a compassionate basis – this is the GSK BRAF inhibitor that has been shown in some studies to be able to cross the blood/brain barrier and have an significant impact on brain mets. After 9 days on Dabrafenib,my mets had shrunk to half their original size in my radiotherapy planning scan. I have since also had steriotactic radiation on the 2 mets. Neurosurgery was not an option and we decided to avoid WBR for the moment. Fingers crossed that your BRAF testing turns up positive for you.
John
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Tagged: cutaneous melanoma
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