› Forums › General Melanoma Community › Fellow lepto warriors!
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SStamps.
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- January 17, 2013 at 8:14 pm
I've written several times regarding my husband Tye. Started with a mole on his back. Mets straight to the brain and nowhere else back in Oct of 2011. WBR and gamma knife followed. Thought we were chugging along pretty good. Started leukine last summer. Then in November a small liver tumor which we irradicated with ablation therapy. Then in Dec the MRI showed enough change for the surgeon to say "I think its necrosis but its bigger and i think we should take care of it." Low and behold…..melanoma grew back right where it
I've written several times regarding my husband Tye. Started with a mole on his back. Mets straight to the brain and nowhere else back in Oct of 2011. WBR and gamma knife followed. Thought we were chugging along pretty good. Started leukine last summer. Then in November a small liver tumor which we irradicated with ablation therapy. Then in Dec the MRI showed enough change for the surgeon to say "I think its necrosis but its bigger and i think we should take care of it." Low and behold…..melanoma grew back right where it seeded before. Yesterday we actually got to see pictures of it. We also got to see the "thin film" of black melanoma running along a vessel in the lepto menengies (sorry I know I spelled that wrong). My husband follows no standard path. Where there is LMD (leptomenengial disease) there is usally widespread tumors. He doesn't have any. Where there is LMD there are usually symptoms. He's very stable. Some "maybe" symptoms but they can be explained through other pathways, ie-hearing has been very bad since surgery. This happened last surgery and post WBR and hearing returned. Abruptly after surgery, hearing TERRIBLE. Has some back pain. Has always had some back pain and it doesn't feel different. This melanoma is so sneaky and tricky.
We are leaving next week to go to my son's Basic Military Training graduation from the Air Force. When we return we will start ipi. I feel its a good choice because we are shooting for long term effects and he has no real "measurable" disease which would be more Zel directed as he has a BRAF mutation. Plus, it will be another stepping stone to the Anti PD 1 trials. (Which I learned yesterday are coming to Mayo!) I finally feel like our whole team of doctors is on the same page as we are. Treat agressivley, goal is survival!
I did some research on LMD last nite. Not good. A lot of my good warm fuzzies got lost in the literature. One thing I have learned from this site is we are NOT statistics. We are individuals and we have to hold on to that hope. So Im hoping there are other lepto warriors out there that can share their insite with me. I thought I found some mention from some of you so thought I'd put it out there again since the posts I found were from 2011. We've got to beat this beast!
Marilynn
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- January 18, 2013 at 1:02 am
Hi Marilynn
2011 my husband diagnosed stage 4 mets in brain lung and a rib. He is a patient at MDAnderson he sees Dr Papapdopoulos he is a medical melanoma oncologist. Dr Papa said that Mickey had a met in the sulcus of his brain and that it could cause the leptomeningeal that was in May 2011 he did whole brain radiation he responded well then in November 2011 Mickey was diagnosed with a tumor on his spine with the leptomeningeal all around it. It is hard to describe what it looks like on the MRI. At the end of November he did radiation on the tumor had an ommaya port placed on the right side of his brain where the the spinal fluid flows from ( can’t think of all the proper medical words) in December of 2011 he stared induction for a treatment for leptomeningeal Dr Papa is the only one at MDA that does this treatment. Mickey also responded well to the radiation treatment on his spine. He started Zelboraf in March 2012 had to stop the Zelboraf and the the treatment for LMD (leptomeningeal ) in May 2012 because of uveitis he was able to start back both in June 2011 but the treatment for LMD was only given at half a dose. In December 2012 one of the tumors on his brain came back and he had gamma knife to that area and a week after they put him back on full dose for LMD because his CSF came back with cell suspicious of melanoma. We just got home today from MDA he had a MRI to see how gamma knife did it has decreased but not gone and had a treatment for LMD this was the first time since the induction he has gotten sick. I know I am rambling some but I am a little tired I don’t if I have said anything to encourage you but you know LMD isn’t anything you want to have to fight when you have melanoma to battle also what I can say is my husband is here over a year later being diagnosed with LMD and in March will be 2 years for his diagnoses of stage 4 melanoma he works about a half a day during the week and will say on his good days he feels 95% we feel very blessed . I read some of the stories to Mickey and we pray for you all.
Also Dr Papa has been treating a brother and sister for LMD and one of them not sure which one for 17 years!
The induction is a month in the hospital then once a week then every 2 weeks and so on working up to every 6 weeks possibly every 8 weeks the chemo is IL2 I think 1.2 ml you are in the hospital for 23 hour observation if you have any questions my email is [email protected]
God bless you and your husband
Samantha -
- January 18, 2013 at 1:02 am
Hi Marilynn
2011 my husband diagnosed stage 4 mets in brain lung and a rib. He is a patient at MDAnderson he sees Dr Papapdopoulos he is a medical melanoma oncologist. Dr Papa said that Mickey had a met in the sulcus of his brain and that it could cause the leptomeningeal that was in May 2011 he did whole brain radiation he responded well then in November 2011 Mickey was diagnosed with a tumor on his spine with the leptomeningeal all around it. It is hard to describe what it looks like on the MRI. At the end of November he did radiation on the tumor had an ommaya port placed on the right side of his brain where the the spinal fluid flows from ( can’t think of all the proper medical words) in December of 2011 he stared induction for a treatment for leptomeningeal Dr Papa is the only one at MDA that does this treatment. Mickey also responded well to the radiation treatment on his spine. He started Zelboraf in March 2012 had to stop the Zelboraf and the the treatment for LMD (leptomeningeal ) in May 2012 because of uveitis he was able to start back both in June 2011 but the treatment for LMD was only given at half a dose. In December 2012 one of the tumors on his brain came back and he had gamma knife to that area and a week after they put him back on full dose for LMD because his CSF came back with cell suspicious of melanoma. We just got home today from MDA he had a MRI to see how gamma knife did it has decreased but not gone and had a treatment for LMD this was the first time since the induction he has gotten sick. I know I am rambling some but I am a little tired I don’t if I have said anything to encourage you but you know LMD isn’t anything you want to have to fight when you have melanoma to battle also what I can say is my husband is here over a year later being diagnosed with LMD and in March will be 2 years for his diagnoses of stage 4 melanoma he works about a half a day during the week and will say on his good days he feels 95% we feel very blessed . I read some of the stories to Mickey and we pray for you all.
Also Dr Papa has been treating a brother and sister for LMD and one of them not sure which one for 17 years!
The induction is a month in the hospital then once a week then every 2 weeks and so on working up to every 6 weeks possibly every 8 weeks the chemo is IL2 I think 1.2 ml you are in the hospital for 23 hour observation if you have any questions my email is [email protected]
God bless you and your husband
Samantha -
- January 18, 2013 at 1:02 am
Hi Marilynn
2011 my husband diagnosed stage 4 mets in brain lung and a rib. He is a patient at MDAnderson he sees Dr Papapdopoulos he is a medical melanoma oncologist. Dr Papa said that Mickey had a met in the sulcus of his brain and that it could cause the leptomeningeal that was in May 2011 he did whole brain radiation he responded well then in November 2011 Mickey was diagnosed with a tumor on his spine with the leptomeningeal all around it. It is hard to describe what it looks like on the MRI. At the end of November he did radiation on the tumor had an ommaya port placed on the right side of his brain where the the spinal fluid flows from ( can’t think of all the proper medical words) in December of 2011 he stared induction for a treatment for leptomeningeal Dr Papa is the only one at MDA that does this treatment. Mickey also responded well to the radiation treatment on his spine. He started Zelboraf in March 2012 had to stop the Zelboraf and the the treatment for LMD (leptomeningeal ) in May 2012 because of uveitis he was able to start back both in June 2011 but the treatment for LMD was only given at half a dose. In December 2012 one of the tumors on his brain came back and he had gamma knife to that area and a week after they put him back on full dose for LMD because his CSF came back with cell suspicious of melanoma. We just got home today from MDA he had a MRI to see how gamma knife did it has decreased but not gone and had a treatment for LMD this was the first time since the induction he has gotten sick. I know I am rambling some but I am a little tired I don’t if I have said anything to encourage you but you know LMD isn’t anything you want to have to fight when you have melanoma to battle also what I can say is my husband is here over a year later being diagnosed with LMD and in March will be 2 years for his diagnoses of stage 4 melanoma he works about a half a day during the week and will say on his good days he feels 95% we feel very blessed . I read some of the stories to Mickey and we pray for you all.
Also Dr Papa has been treating a brother and sister for LMD and one of them not sure which one for 17 years!
The induction is a month in the hospital then once a week then every 2 weeks and so on working up to every 6 weeks possibly every 8 weeks the chemo is IL2 I think 1.2 ml you are in the hospital for 23 hour observation if you have any questions my email is [email protected]
God bless you and your husband
Samantha
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Tagged: cutaneous melanoma
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