hannahcopeland1

i took 4 rounds of temodar this summer after WBR and during ipi infusions. i have an almost incurable brain disease called lepotmeningeal, but it has almost dissappeared! i dont know if it is because of the combination or one of them individually, but i think it helped. 

i took 4 rounds of temodar this summer after WBR and during ipi infusions. i have an almost incurable brain disease called lepotmeningeal, but it has almost dissappeared! i dont know if it is because of the combination or one of them individually, but i think it helped. 

i took 4 rounds of temodar this summer after WBR and during ipi infusions. i have an almost incurable brain disease called lepotmeningeal, but it has almost dissappeared! i dont know if it is because of the combination or one of them individually, but i think it helped. 

Hi! I am stage 4 as well. I was diagnosed with leptomeningeal disease in my brain in april, which has a horrible prognosis. Things i was reading said i could die within 2 weeks. I was so devastated. I ended up in the hospital after a bad spell of headaches and vomitting and was there for 10 days undergoing WBR, and i started on ipi and temodar. i took the summer recooperating, finished ipi and temodar and I am still here and feeling pretty darn good. i still have a lot of work to do, but my last MRI show the lepto disease almost gone, so i am very lucky. I still have mets in my skull, spine, liver and lungs, but im able to be myself again and be happy. i am very thankful. 

I start PD1 EAP on Monday so im looking forward to moving forward!

have you done ipi? PD1 should be coming on the market soon as well. and both supposedly work in the brain. sounds like you still have options.

hang in there. I know how hard this stuff is.

H

Hi! I am stage 4 as well. I was diagnosed with leptomeningeal disease in my brain in april, which has a horrible prognosis. Things i was reading said i could die within 2 weeks. I was so devastated. I ended up in the hospital after a bad spell of headaches and vomitting and was there for 10 days undergoing WBR, and i started on ipi and temodar. i took the summer recooperating, finished ipi and temodar and I am still here and feeling pretty darn good. i still have a lot of work to do, but my last MRI show the lepto disease almost gone, so i am very lucky. I still have mets in my skull, spine, liver and lungs, but im able to be myself again and be happy. i am very thankful. 

I start PD1 EAP on Monday so im looking forward to moving forward!

have you done ipi? PD1 should be coming on the market soon as well. and both supposedly work in the brain. sounds like you still have options.

hang in there. I know how hard this stuff is.

H

Hi! I am stage 4 as well. I was diagnosed with leptomeningeal disease in my brain in april, which has a horrible prognosis. Things i was reading said i could die within 2 weeks. I was so devastated. I ended up in the hospital after a bad spell of headaches and vomitting and was there for 10 days undergoing WBR, and i started on ipi and temodar. i took the summer recooperating, finished ipi and temodar and I am still here and feeling pretty darn good. i still have a lot of work to do, but my last MRI show the lepto disease almost gone, so i am very lucky. I still have mets in my skull, spine, liver and lungs, but im able to be myself again and be happy. i am very thankful. 

I start PD1 EAP on Monday so im looking forward to moving forward!

have you done ipi? PD1 should be coming on the market soon as well. and both supposedly work in the brain. sounds like you still have options.

hang in there. I know how hard this stuff is.

H

making the decision is the hardest part! 

i think that you can take a deep breath and feel good that youve got a good solid plan. im always panicky as well when i am in between treatment which i kind of am now. i have scans on monday to see how my 4 ipi infusions and chemo worked on my body and brain this summer. so we will be discussing whats next as well.

i hope ipi works for you! my side effects really werent bad, but like they said, tell your doctor. i always did, but then the usually would subside on there own anyways.

good luck to you sir

H

making the decision is the hardest part! 

i think that you can take a deep breath and feel good that youve got a good solid plan. im always panicky as well when i am in between treatment which i kind of am now. i have scans on monday to see how my 4 ipi infusions and chemo worked on my body and brain this summer. so we will be discussing whats next as well.

i hope ipi works for you! my side effects really werent bad, but like they said, tell your doctor. i always did, but then the usually would subside on there own anyways.

good luck to you sir

H

making the decision is the hardest part! 

i think that you can take a deep breath and feel good that youve got a good solid plan. im always panicky as well when i am in between treatment which i kind of am now. i have scans on monday to see how my 4 ipi infusions and chemo worked on my body and brain this summer. so we will be discussing whats next as well.

i hope ipi works for you! my side effects really werent bad, but like they said, tell your doctor. i always did, but then the usually would subside on there own anyways.

good luck to you sir

H

i would suggest ipi first. you really dont know in the grand scheme of things what will happen and what works in what order best. but this is my experience…

I did the opposite. zelboraf 1st and then ipi. zelboraf helped me a lot for a few months and then it stopped working and my lung mets grew right back. it was really upsetting for me, bc the side effects are harsh. i had to go down to 6 pills daily instead of 8.

ipi side effects are way more manageable. all ive experienced are a few rashes and fatigue.

if you have a side effect from a tumor bc of its size, then doing zel first is a good idea, bc it acts fast if it does work. for instance, i had a dibilitating cough that cleared up right away after starting zel. came back after stopping, but now on ipi, it is manageable again although it took a little longer. 

i am waiting for my scans next week to see how the entire cycle of ipi has affected the tumors in my body and brain. so we shall see. 

but i think it would be comforting to know i still had zelboraf as an option. who knows maybe it will be. ive heard things like if you go off zel for a while and start again it may work again… dunno if thats true!

good luck. no easy decisions. 

thants just my humble opinin!

H

i would suggest ipi first. you really dont know in the grand scheme of things what will happen and what works in what order best. but this is my experience…

I did the opposite. zelboraf 1st and then ipi. zelboraf helped me a lot for a few months and then it stopped working and my lung mets grew right back. it was really upsetting for me, bc the side effects are harsh. i had to go down to 6 pills daily instead of 8.

ipi side effects are way more manageable. all ive experienced are a few rashes and fatigue.

if you have a side effect from a tumor bc of its size, then doing zel first is a good idea, bc it acts fast if it does work. for instance, i had a dibilitating cough that cleared up right away after starting zel. came back after stopping, but now on ipi, it is manageable again although it took a little longer. 

i am waiting for my scans next week to see how the entire cycle of ipi has affected the tumors in my body and brain. so we shall see. 

but i think it would be comforting to know i still had zelboraf as an option. who knows maybe it will be. ive heard things like if you go off zel for a while and start again it may work again… dunno if thats true!

good luck. no easy decisions. 

thants just my humble opinin!

H

i would suggest ipi first. you really dont know in the grand scheme of things what will happen and what works in what order best. but this is my experience…

I did the opposite. zelboraf 1st and then ipi. zelboraf helped me a lot for a few months and then it stopped working and my lung mets grew right back. it was really upsetting for me, bc the side effects are harsh. i had to go down to 6 pills daily instead of 8.

ipi side effects are way more manageable. all ive experienced are a few rashes and fatigue.

if you have a side effect from a tumor bc of its size, then doing zel first is a good idea, bc it acts fast if it does work. for instance, i had a dibilitating cough that cleared up right away after starting zel. came back after stopping, but now on ipi, it is manageable again although it took a little longer. 

i am waiting for my scans next week to see how the entire cycle of ipi has affected the tumors in my body and brain. so we shall see. 

but i think it would be comforting to know i still had zelboraf as an option. who knows maybe it will be. ive heard things like if you go off zel for a while and start again it may work again… dunno if thats true!

good luck. no easy decisions. 

thants just my humble opinin!

H

Hi Andrew, 

Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf(VEM), mek/braf combo, then ipi(YERVOY), WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine. zelboraf helped shrink my lung tumors for about 5 months. i then switched to the mek/braf combo for the better side effects but my lung mets started to grow again. during the 1 month "wash out" period bt that and a PD1 trial i was enrolled in, i was given the devastating news that it had reached my brain and in a rare and extremely dangerous form. i was kicked out of the PD1 trial and had to start ipi immediately. a day after my diagnosis of the brain. my fiance and i went to the courthouse and got married. a week later i was in the hospital due to massive migraines and throwing up. they had to do WBR and chemo while i was there. ive just recently finished 4 rounds of ipi and 3 rounds of temodar and im feeling good. Scans on Monday will tell me where i really stand. 

So YES, i have been on Yervoy for the past few months, but have been taking chemo for the brain as well. apparently ipi can get to the brain. they are saying that pd1 can as well which is great. I wanted to share with you one of the reasons i think ive been feeling so well. So in case you do get side affects you can prepare yourself. ipi just makes me tired, and i have gotten a few full body rashes that itch but have gone away on there own. nothing like vem rashes. its the neorological symptoms that really suck…

my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

its really amazing and i truly think that it is going to help my recovery and my overall life. 

good luck to you with everything. i hope this info an help you feel better!

Hi Andrew, 

Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf(VEM), mek/braf combo, then ipi(YERVOY), WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine. zelboraf helped shrink my lung tumors for about 5 months. i then switched to the mek/braf combo for the better side effects but my lung mets started to grow again. during the 1 month "wash out" period bt that and a PD1 trial i was enrolled in, i was given the devastating news that it had reached my brain and in a rare and extremely dangerous form. i was kicked out of the PD1 trial and had to start ipi immediately. a day after my diagnosis of the brain. my fiance and i went to the courthouse and got married. a week later i was in the hospital due to massive migraines and throwing up. they had to do WBR and chemo while i was there. ive just recently finished 4 rounds of ipi and 3 rounds of temodar and im feeling good. Scans on Monday will tell me where i really stand. 

So YES, i have been on Yervoy for the past few months, but have been taking chemo for the brain as well. apparently ipi can get to the brain. they are saying that pd1 can as well which is great. I wanted to share with you one of the reasons i think ive been feeling so well. So in case you do get side affects you can prepare yourself. ipi just makes me tired, and i have gotten a few full body rashes that itch but have gone away on there own. nothing like vem rashes. its the neorological symptoms that really suck…

my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

its really amazing and i truly think that it is going to help my recovery and my overall life. 

good luck to you with everything. i hope this info an help you feel better!

Hi Andrew, 

Ive had melanoma for 3 years now. Im 27. it became stage 4 last year when it showed up in my lungs. now i have a very rare brain disease called leptomeningeal that is very hard to treat and the prognosis isnt great. But Im hanging in there. My treatments have been surgeries, zelboraf(VEM), mek/braf combo, then ipi(YERVOY), WBR, and temodar and i still have lung mets, leptomeningeal and some mets in my skull and spine. zelboraf helped shrink my lung tumors for about 5 months. i then switched to the mek/braf combo for the better side effects but my lung mets started to grow again. during the 1 month "wash out" period bt that and a PD1 trial i was enrolled in, i was given the devastating news that it had reached my brain and in a rare and extremely dangerous form. i was kicked out of the PD1 trial and had to start ipi immediately. a day after my diagnosis of the brain. my fiance and i went to the courthouse and got married. a week later i was in the hospital due to massive migraines and throwing up. they had to do WBR and chemo while i was there. ive just recently finished 4 rounds of ipi and 3 rounds of temodar and im feeling good. Scans on Monday will tell me where i really stand. 

So YES, i have been on Yervoy for the past few months, but have been taking chemo for the brain as well. apparently ipi can get to the brain. they are saying that pd1 can as well which is great. I wanted to share with you one of the reasons i think ive been feeling so well. So in case you do get side affects you can prepare yourself. ipi just makes me tired, and i have gotten a few full body rashes that itch but have gone away on there own. nothing like vem rashes. its the neorological symptoms that really suck…

my right leg has had tingling at a few different levels, and most recently has had twitching in the toes that drives me crazy. ive had back pains, upper middle lower, neck pains, headaches, dizziness, exhaustion. what has helped me the most is my chiropracter! he happens to be my husbands father, so im lucky! he comes to meet me twice and sometimes 3 times a week. he practices reiki as well and has used it with me. it has helped me IMMENSELY. Ive had lumps in my neck that have dissappeared, my toe twitch and tingle has dissappeared. my back pains have gone, which all improve my headaches and overall physical well-being. 

its really amazing and i truly think that it is going to help my recovery and my overall life. 

good luck to you with everything. i hope this info an help you feel better!