SStamps

My husband had an ommya place two different times the original and he developed hydrocephalus and they placed a new ommya with a shunt and each time a flow test was done.

Good luck and God bless

Samantha

My husband had an ommya place two different times the original and he developed hydrocephalus and they placed a new ommya with a shunt and each time a flow test was done.

Good luck and God bless

Samantha

My husband had an ommya place two different times the original and he developed hydrocephalus and they placed a new ommya with a shunt and each time a flow test was done.

Good luck and God bless

Samantha

My husband is being treated at MDAnderson for liptomeningeal (LMD) he started treatment 12-2011 Dr Papadopoulos (Dr Papa is what we call him) started this treatment but has retired Dr Isabella Glitza was trained by Dr Papa in this treatment and has taken over Dr Papas LMD cases.  My husband had LMD in his spine he did radiation to the area and on the last radiation treatment he went to surgery to have an ommaya placed this is how they check the spinal fluid (CFS) and administer the IL2. After the ommaya was placed he had to have a flow study done to make sure the ommaya was working and that the IL2 would circulate the CSF .  When the flow test was done and showed to flow he was admitted to the hospital for a month they call this induction. He was given the IL2  serval times a week if he could take it this dose of IL2 is very small. It was not easy for him he was still a strong man when he started which probably helped him.  Some of the Drs in the melanoma department do not recommend this treatment because it is so toxic. After induction is done Mickey had to have a treatment once a week for four weeks and then every two weeks four times then three weeks four times and so on they have some people that go every 3 months. Mickey has a treatment every 8 weeks now. When he hit bumps in the road the treatment would stop and he would be moved back.  Along the way he developed hydrocephalus (which is a side effect of the treatment) a shunt had to be placed with a new ommaya and a new flow test. This is just one of many bumps in this journey. We live 8 1/2 hours from Houston and will leave this weekend for scans and Dr appointments and a treatment for the LMD with this treatment he is admitted to the hospital for observation.  When the melanoma was found it was in his brain, right lung, and his 7th left rib, he has done 1 1/2 rounds of IPI and is currently on zelboraf. He has had whole brain radiation, 2 gamma knife at two different times to brain tumors, cryoablation to his lung tumor and rib tumor, had his appendix removed, and this August his abdomen CT showed he had a mass in his small bowel that was resectioned. The CT also show two lymph node in his abdomen that were enlarged the surgeon was unable to remove because of the location. 

If you have any questions my email is [email protected] I will help you with what I know.

 Blessings from Arkansas

Samantha

My husband is being treated at MDAnderson for liptomeningeal (LMD) he started treatment 12-2011 Dr Papadopoulos (Dr Papa is what we call him) started this treatment but has retired Dr Isabella Glitza was trained by Dr Papa in this treatment and has taken over Dr Papas LMD cases.  My husband had LMD in his spine he did radiation to the area and on the last radiation treatment he went to surgery to have an ommaya placed this is how they check the spinal fluid (CFS) and administer the IL2. After the ommaya was placed he had to have a flow study done to make sure the ommaya was working and that the IL2 would circulate the CSF .  When the flow test was done and showed to flow he was admitted to the hospital for a month they call this induction. He was given the IL2  serval times a week if he could take it this dose of IL2 is very small. It was not easy for him he was still a strong man when he started which probably helped him.  Some of the Drs in the melanoma department do not recommend this treatment because it is so toxic. After induction is done Mickey had to have a treatment once a week for four weeks and then every two weeks four times then three weeks four times and so on they have some people that go every 3 months. Mickey has a treatment every 8 weeks now. When he hit bumps in the road the treatment would stop and he would be moved back.  Along the way he developed hydrocephalus (which is a side effect of the treatment) a shunt had to be placed with a new ommaya and a new flow test. This is just one of many bumps in this journey. We live 8 1/2 hours from Houston and will leave this weekend for scans and Dr appointments and a treatment for the LMD with this treatment he is admitted to the hospital for observation.  When the melanoma was found it was in his brain, right lung, and his 7th left rib, he has done 1 1/2 rounds of IPI and is currently on zelboraf. He has had whole brain radiation, 2 gamma knife at two different times to brain tumors, cryoablation to his lung tumor and rib tumor, had his appendix removed, and this August his abdomen CT showed he had a mass in his small bowel that was resectioned. The CT also show two lymph node in his abdomen that were enlarged the surgeon was unable to remove because of the location. 

If you have any questions my email is [email protected] I will help you with what I know.

 Blessings from Arkansas

Samantha

My husband is being treated at MDAnderson for liptomeningeal (LMD) he started treatment 12-2011 Dr Papadopoulos (Dr Papa is what we call him) started this treatment but has retired Dr Isabella Glitza was trained by Dr Papa in this treatment and has taken over Dr Papas LMD cases.  My husband had LMD in his spine he did radiation to the area and on the last radiation treatment he went to surgery to have an ommaya placed this is how they check the spinal fluid (CFS) and administer the IL2. After the ommaya was placed he had to have a flow study done to make sure the ommaya was working and that the IL2 would circulate the CSF .  When the flow test was done and showed to flow he was admitted to the hospital for a month they call this induction. He was given the IL2  serval times a week if he could take it this dose of IL2 is very small. It was not easy for him he was still a strong man when he started which probably helped him.  Some of the Drs in the melanoma department do not recommend this treatment because it is so toxic. After induction is done Mickey had to have a treatment once a week for four weeks and then every two weeks four times then three weeks four times and so on they have some people that go every 3 months. Mickey has a treatment every 8 weeks now. When he hit bumps in the road the treatment would stop and he would be moved back.  Along the way he developed hydrocephalus (which is a side effect of the treatment) a shunt had to be placed with a new ommaya and a new flow test. This is just one of many bumps in this journey. We live 8 1/2 hours from Houston and will leave this weekend for scans and Dr appointments and a treatment for the LMD with this treatment he is admitted to the hospital for observation.  When the melanoma was found it was in his brain, right lung, and his 7th left rib, he has done 1 1/2 rounds of IPI and is currently on zelboraf. He has had whole brain radiation, 2 gamma knife at two different times to brain tumors, cryoablation to his lung tumor and rib tumor, had his appendix removed, and this August his abdomen CT showed he had a mass in his small bowel that was resectioned. The CT also show two lymph node in his abdomen that were enlarged the surgeon was unable to remove because of the location. 

If you have any questions my email is [email protected] I will help you with what I know.

 Blessings from Arkansas

Samantha

Hi Rob 

Sadly today I will lay my sweetie to rest.  He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes.  They did a CT of the chest and abdomen on Sunday  and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.

Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times.  He did the intrathecal with the IL2  but had to stop to get on this trial.  We were going every eight weeks.  In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in.  he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired.  He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.

I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know.

Sorry for the rambling.  I did email you but may have went to junk.  My email is [email protected] I will answer any question if I can.

Good luck and God bless

Samantha 

Hi Rob 

Sadly today I will lay my sweetie to rest.  He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes.  They did a CT of the chest and abdomen on Sunday  and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.

Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times.  He did the intrathecal with the IL2  but had to stop to get on this trial.  We were going every eight weeks.  In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in.  he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired.  He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.

I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know.

Sorry for the rambling.  I did email you but may have went to junk.  My email is [email protected] I will answer any question if I can.

Good luck and God bless

Samantha 

Hi Rob 

Sadly today I will lay my sweetie to rest.  He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes.  They did a CT of the chest and abdomen on Sunday  and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.

Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times.  He did the intrathecal with the IL2  but had to stop to get on this trial.  We were going every eight weeks.  In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in.  he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired.  He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.

I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know.

Sorry for the rambling.  I did email you but may have went to junk.  My email is [email protected] I will answer any question if I can.

Good luck and God bless

Samantha 

My husband is being treated for liptomeningeal at MDAnderson. Dr Isabella Glitza is now doing the treatments since Dr Papa retired.  Mickey has been receiving treatment for the liptomeningeal  since 12-2011. 

The phone number to the melanoma department at MDAnderson is 713-792-6800.

Mickey had brain mets (also lung and rib)he did the WBR , Dr Papa showed us where one of the tumors was located and said it was possible Mickey would develop LMD. In November 2011 Mickey's back started to hurt spine MRI showed lepto tumor are(not solid just looked clustered) he had radiation to the area. The day of his last radiation treatment he went to surgery they place an ommaya in to lateral ventricle. They did a flow study then he was admitted to the hospital for induction about 20 days or more. If all goes well they do a treatment every week for 4 weeks then move up to every 2 weeks then so on. As long as CSF is clear of melanoma cells they continue to move up.  Mickey has had bumps in the road but now his 4th sixth week is 6-22-15.  

You may email me at [email protected] if you have any questions

Blessing to you and your family

Samantha

My husband is being treated for liptomeningeal at MDAnderson. Dr Isabella Glitza is now doing the treatments since Dr Papa retired.  Mickey has been receiving treatment for the liptomeningeal  since 12-2011. 

The phone number to the melanoma department at MDAnderson is 713-792-6800.

Mickey had brain mets (also lung and rib)he did the WBR , Dr Papa showed us where one of the tumors was located and said it was possible Mickey would develop LMD. In November 2011 Mickey's back started to hurt spine MRI showed lepto tumor are(not solid just looked clustered) he had radiation to the area. The day of his last radiation treatment he went to surgery they place an ommaya in to lateral ventricle. They did a flow study then he was admitted to the hospital for induction about 20 days or more. If all goes well they do a treatment every week for 4 weeks then move up to every 2 weeks then so on. As long as CSF is clear of melanoma cells they continue to move up.  Mickey has had bumps in the road but now his 4th sixth week is 6-22-15.  

You may email me at [email protected] if you have any questions

Blessing to you and your family

Samantha

My husband is being treated for liptomeningeal at MDAnderson. Dr Isabella Glitza is now doing the treatments since Dr Papa retired.  Mickey has been receiving treatment for the liptomeningeal  since 12-2011. 

The phone number to the melanoma department at MDAnderson is 713-792-6800.

Mickey had brain mets (also lung and rib)he did the WBR , Dr Papa showed us where one of the tumors was located and said it was possible Mickey would develop LMD. In November 2011 Mickey's back started to hurt spine MRI showed lepto tumor are(not solid just looked clustered) he had radiation to the area. The day of his last radiation treatment he went to surgery they place an ommaya in to lateral ventricle. They did a flow study then he was admitted to the hospital for induction about 20 days or more. If all goes well they do a treatment every week for 4 weeks then move up to every 2 weeks then so on. As long as CSF is clear of melanoma cells they continue to move up.  Mickey has had bumps in the road but now his 4th sixth week is 6-22-15.  

You may email me at [email protected] if you have any questions

Blessing to you and your family

Samantha

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

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

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