› Forums › General Melanoma Community › Leptomeningeal Disease
- This topic has 21 replies, 4 voices, and was last updated 9 years, 5 months ago by
kalisama.
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- October 30, 2014 at 7:50 pm
2 weeks ago we found out my mom's melanoma has returned to her spinal fluid and ventricle of her brain (diagnosed via two separate spinal taps and brain MRI). She has a history of one large brain met, but had that gamma knifed and then a subsequent brain surgery a little over a year ago. Her doctor said she now has leptomeningeal disease, and we're waiting on scans (Fri: PET; Mon: spine MRI, brain MRI) to see if it's elsewhere in her body. Does anybody have anyone I could reach out to for help?? I've been searching through posts and, per other posters, have seen that Dr. Papadopoulos at MD Anderson is someone we should try (since he does intrathecal IL-2 radiation to the spinal fluid). My mom is my everything, and I have never been so scared in my life. She's battled melanoma for the last 5 years and has done interferon, il-2, ipi, gamma knife…She's both Braf and CKit negative. She has completed one round of Temodar and is set to start the second round next week…WBR has also been discussed… I just don't know what to do and I feel like her oncologist has no idea what to do either! 🙁 Any help, resources, uplifting stories, etc. would be greatly appreciated!!!
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- October 31, 2014 at 1:10 am
You might try to reach out to Nancy (Snickers60) whose husband had the treatment at MD Anderson. Here is one thread where she discusses the treatment.
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- October 31, 2014 at 1:10 am
You might try to reach out to Nancy (Snickers60) whose husband had the treatment at MD Anderson. Here is one thread where she discusses the treatment.
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- October 31, 2014 at 1:10 am
You might try to reach out to Nancy (Snickers60) whose husband had the treatment at MD Anderson. Here is one thread where she discusses the treatment.
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- October 31, 2014 at 1:37 pm
I too am dealing with LMD. Here is a recent thread I started on the topic, with helpful responses. Will look more closely at your questions and see if I can be of further help to you later today.
Bless,
kali -
- October 31, 2014 at 1:37 pm
I too am dealing with LMD. Here is a recent thread I started on the topic, with helpful responses. Will look more closely at your questions and see if I can be of further help to you later today.
Bless,
kali -
- October 31, 2014 at 1:37 pm
I too am dealing with LMD. Here is a recent thread I started on the topic, with helpful responses. Will look more closely at your questions and see if I can be of further help to you later today.
Bless,
kali -
- November 1, 2014 at 12:19 am
Dr. Isabella Glitza took over Dr. Papa's patients being treated for liptomeningeal at MDAnderson. My husband has been getting treament for LMD since 2011 there have been bumps in the road but he is doing good! We are headed to Houston this weekend for scans and LMD treatment. If you have question you may email me at [email protected]
Samantha Stamps
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- November 1, 2014 at 12:19 am
Dr. Isabella Glitza took over Dr. Papa's patients being treated for liptomeningeal at MDAnderson. My husband has been getting treament for LMD since 2011 there have been bumps in the road but he is doing good! We are headed to Houston this weekend for scans and LMD treatment. If you have question you may email me at [email protected]
Samantha Stamps
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- November 1, 2014 at 12:19 am
Dr. Isabella Glitza took over Dr. Papa's patients being treated for liptomeningeal at MDAnderson. My husband has been getting treament for LMD since 2011 there have been bumps in the road but he is doing good! We are headed to Houston this weekend for scans and LMD treatment. If you have question you may email me at [email protected]
Samantha Stamps
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- November 1, 2014 at 11:47 pm
Kali
LMD is serious we lost a friend to it 6 months after her diagnosis. Mickey started in 12-2011 had to be in the hospital for a month for induction. Then after induction the treatment was once a week for four weeks then every two weeks and so on. He is now getting half the dose every five weeks. I know there is a patient that has been getting this treatment for 20 or more years also a brother and sister that have been getting the treatment for 10 or more years! Mickey has had WBR, 1 1/2 rounds of ipi , currently on Zelboraf, cryoablation on a rib and lung, 2 brain surgeries , placed an ommaya in the brain for the treatment of LMD, in April 2013 he developed hydrocephalus and converted ommaya to shunt. When this happened there was a brief moment he didn't know who I was and the Drs didn't know if the shunt would make him better but God wasn't done with him yet. Mickey short term memory isn't great but he drives and works some. This is just some of journey together we don't know when God will call him home so we just try to enjoy our moments together. Bless you and should you want more information email me:)
Samanth
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- November 1, 2014 at 11:47 pm
Kali
LMD is serious we lost a friend to it 6 months after her diagnosis. Mickey started in 12-2011 had to be in the hospital for a month for induction. Then after induction the treatment was once a week for four weeks then every two weeks and so on. He is now getting half the dose every five weeks. I know there is a patient that has been getting this treatment for 20 or more years also a brother and sister that have been getting the treatment for 10 or more years! Mickey has had WBR, 1 1/2 rounds of ipi , currently on Zelboraf, cryoablation on a rib and lung, 2 brain surgeries , placed an ommaya in the brain for the treatment of LMD, in April 2013 he developed hydrocephalus and converted ommaya to shunt. When this happened there was a brief moment he didn't know who I was and the Drs didn't know if the shunt would make him better but God wasn't done with him yet. Mickey short term memory isn't great but he drives and works some. This is just some of journey together we don't know when God will call him home so we just try to enjoy our moments together. Bless you and should you want more information email me:)
Samanth
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- November 2, 2014 at 1:14 pm
Thank you again, Samantha. I know I'm dealing with serious and unpredictable disease. I have requested a neurologist be added to my team, honestly have no earthly clue why this has not yet been done nearly 2 years into primarily brain/CNS stage IV prognosis.
While tons of MRIs have been performed, I have not even had a spinal tap, however both my onc and radiation onc have diagnosed me with LMD based on the quantity and pervasiveness of tumors in the dural layer of my brain, particularly infiltrated at the Sylvian Fissures. Symptoms include focus seizures primarily. We've upped my Keppra, to just short of hallucinating. I cannot take high doses of Dexamethasone, this last 4 +week round almost killed me. Yet we need to keep the swelling down, so I am hopeful a neurologist will have the secret recipe for me.
Unfortunately I live so far from MD Anderson, heck I'm 4 hours one way to my primary onc and radiologist and an hour one way from a blood draw!
I'm BRAF + and have gone from Zelb to Mek/Taf and am 2 weeks from 3rd Yervoy which I will be trying to change up to Keytruda. I'm in progression and it seems that all positivevYervoy aspects that would possibly impact my course of treatment, are also found in Keytruda.
Again, thank you for reaching out, I may just take you up on your generous offer when I have the energy, which is not often these days.
Blessings to you, your family and friends always,
kali
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- November 2, 2014 at 1:14 pm
Thank you again, Samantha. I know I'm dealing with serious and unpredictable disease. I have requested a neurologist be added to my team, honestly have no earthly clue why this has not yet been done nearly 2 years into primarily brain/CNS stage IV prognosis.
While tons of MRIs have been performed, I have not even had a spinal tap, however both my onc and radiation onc have diagnosed me with LMD based on the quantity and pervasiveness of tumors in the dural layer of my brain, particularly infiltrated at the Sylvian Fissures. Symptoms include focus seizures primarily. We've upped my Keppra, to just short of hallucinating. I cannot take high doses of Dexamethasone, this last 4 +week round almost killed me. Yet we need to keep the swelling down, so I am hopeful a neurologist will have the secret recipe for me.
Unfortunately I live so far from MD Anderson, heck I'm 4 hours one way to my primary onc and radiologist and an hour one way from a blood draw!
I'm BRAF + and have gone from Zelb to Mek/Taf and am 2 weeks from 3rd Yervoy which I will be trying to change up to Keytruda. I'm in progression and it seems that all positivevYervoy aspects that would possibly impact my course of treatment, are also found in Keytruda.
Again, thank you for reaching out, I may just take you up on your generous offer when I have the energy, which is not often these days.
Blessings to you, your family and friends always,
kali
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- November 2, 2014 at 1:14 pm
Thank you again, Samantha. I know I'm dealing with serious and unpredictable disease. I have requested a neurologist be added to my team, honestly have no earthly clue why this has not yet been done nearly 2 years into primarily brain/CNS stage IV prognosis.
While tons of MRIs have been performed, I have not even had a spinal tap, however both my onc and radiation onc have diagnosed me with LMD based on the quantity and pervasiveness of tumors in the dural layer of my brain, particularly infiltrated at the Sylvian Fissures. Symptoms include focus seizures primarily. We've upped my Keppra, to just short of hallucinating. I cannot take high doses of Dexamethasone, this last 4 +week round almost killed me. Yet we need to keep the swelling down, so I am hopeful a neurologist will have the secret recipe for me.
Unfortunately I live so far from MD Anderson, heck I'm 4 hours one way to my primary onc and radiologist and an hour one way from a blood draw!
I'm BRAF + and have gone from Zelb to Mek/Taf and am 2 weeks from 3rd Yervoy which I will be trying to change up to Keytruda. I'm in progression and it seems that all positivevYervoy aspects that would possibly impact my course of treatment, are also found in Keytruda.
Again, thank you for reaching out, I may just take you up on your generous offer when I have the energy, which is not often these days.
Blessings to you, your family and friends always,
kali
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- November 1, 2014 at 11:47 pm
Kali
LMD is serious we lost a friend to it 6 months after her diagnosis. Mickey started in 12-2011 had to be in the hospital for a month for induction. Then after induction the treatment was once a week for four weeks then every two weeks and so on. He is now getting half the dose every five weeks. I know there is a patient that has been getting this treatment for 20 or more years also a brother and sister that have been getting the treatment for 10 or more years! Mickey has had WBR, 1 1/2 rounds of ipi , currently on Zelboraf, cryoablation on a rib and lung, 2 brain surgeries , placed an ommaya in the brain for the treatment of LMD, in April 2013 he developed hydrocephalus and converted ommaya to shunt. When this happened there was a brief moment he didn't know who I was and the Drs didn't know if the shunt would make him better but God wasn't done with him yet. Mickey short term memory isn't great but he drives and works some. This is just some of journey together we don't know when God will call him home so we just try to enjoy our moments together. Bless you and should you want more information email me:)
Samanth
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