Eric’s Brain Tumor Hemorrhaged

Oh Jill, I am fairly new here without much wisdom to offer but I am looking at the beautiful picture of the 2 of you and my heart just aches for you both. Sounds like you have been thru so, so much.

I will keep you in my prayers

fliberdy

Oh Jill, I am fairly new here without much wisdom to offer but I am looking at the beautiful picture of the 2 of you and my heart just aches for you both. Sounds like you have been thru so, so much.

I will keep you in my prayers

fliberdy

I am hoping some of those that have had brain tumors chime in quickly.  All I can do is give you a little advice and that is to urge you to please get some extra help.  At this particular point don't try to take care of Eric all yourself, you'll burn out.  Even if you just get a couple hours a week to yourself it'll be a time to breath and reflect. 

If you have had a good rapport with your Onc so far, trust him.  Keep him the fight and take care of yourself.  Check with Eric's HR and see what the options are for continuing health coverage, then sit down with a Rep from SSA.

Good Luck

Mary

Stage 3

I am hoping some of those that have had brain tumors chime in quickly.  All I can do is give you a little advice and that is to urge you to please get some extra help.  At this particular point don't try to take care of Eric all yourself, you'll burn out.  Even if you just get a couple hours a week to yourself it'll be a time to breath and reflect. 

If you have had a good rapport with your Onc so far, trust him.  Keep him the fight and take care of yourself.  Check with Eric's HR and see what the options are for continuing health coverage, then sit down with a Rep from SSA.

Good Luck

Mary

Stage 3

I am pretty new to this but I do know I have read a lot of stories/profiles about people succeeding with multiple gamma knife procedures. I know that brain mets sound frightening but they can definitley be defeated. With him having someone like you in his corner I feel like you guys have as good a chance as anyone. 

-pat on long island

I am pretty new to this but I do know I have read a lot of stories/profiles about people succeeding with multiple gamma knife procedures. I know that brain mets sound frightening but they can definitley be defeated. With him having someone like you in his corner I feel like you guys have as good a chance as anyone. 

-pat on long island

Hi Jill

Sometimes anti seizure Meds are given post Craniotomy this may help with Eric's confusion. Temador is  the only Chemo that crosses the blood brain barrier. Maybe enquire about the Trial that combines Ippilimumab and Temador. It is relatively new and i remember seeing some MPIP folk on it, hopefully they can chime in and let you know about it.

best wishes

James

Hi Jill

Sometimes anti seizure Meds are given post Craniotomy this may help with Eric's confusion. Temador is  the only Chemo that crosses the blood brain barrier. Maybe enquire about the Trial that combines Ippilimumab and Temador. It is relatively new and i remember seeing some MPIP folk on it, hopefully they can chime in and let you know about it.

best wishes

James

Jill first off let me say how very sorry for what you are going through.  Sometimes it seems so unfair as you say, to sit back and watch your heart being ripped out of your chest and NOTHING you can do about it.  I know when my husband feels bad I feel bad when he feels decent I feel decent.  This is why I ask him numerous times during the day "how you doing"

Second thing is that after nearly a year after being diagnosed with melanoma I finally filed for disbility for my husband.  He had retired from his job 4 months before diagnosis.  The reason for delay was (thank you Jesus we have been blessed financially) to not worry about it at the present.  We were more concerned with tx.  The first time I went a few months ago to check it out the girl said that it usually takes about 5 months and I about lost it right there.  I looked at her with tears in my eyes and said "I'm no sure he has 5 months"  Anyway a week ago last Sun. I finally filled out the form online and went to our local SS office on the following Tues. with initial diagnosis pathology report and a few scan, mri reports including the last one in Oct. The girl helping me must have been a Godsend because that was last Tuesday and today there was a check in our bank account for back pay for 6 months.  Yes there is a 5 month waiting period after diagnosis but YES they do back pay you and I got this done in 1 weeks time.  Tell me the Lord isn't working here~~~

I hope you have as much success as I did.  The sooner you get started the quicker you will get it.  Lots of luck with Eric's treatment also.

Linda/Kentucky

Jill first off let me say how very sorry for what you are going through.  Sometimes it seems so unfair as you say, to sit back and watch your heart being ripped out of your chest and NOTHING you can do about it.  I know when my husband feels bad I feel bad when he feels decent I feel decent.  This is why I ask him numerous times during the day "how you doing"

Second thing is that after nearly a year after being diagnosed with melanoma I finally filed for disbility for my husband.  He had retired from his job 4 months before diagnosis.  The reason for delay was (thank you Jesus we have been blessed financially) to not worry about it at the present.  We were more concerned with tx.  The first time I went a few months ago to check it out the girl said that it usually takes about 5 months and I about lost it right there.  I looked at her with tears in my eyes and said "I'm no sure he has 5 months"  Anyway a week ago last Sun. I finally filled out the form online and went to our local SS office on the following Tues. with initial diagnosis pathology report and a few scan, mri reports including the last one in Oct. The girl helping me must have been a Godsend because that was last Tuesday and today there was a check in our bank account for back pay for 6 months.  Yes there is a 5 month waiting period after diagnosis but YES they do back pay you and I got this done in 1 weeks time.  Tell me the Lord isn't working here~~~

I hope you have as much success as I did.  The sooner you get started the quicker you will get it.  Lots of luck with Eric's treatment also.

Linda/Kentucky

Hi Jill – I had the same thing happen in June. A 2×3 cm tumor that had not shown on my previous scan began bleeding into my brain. I was alone at the time and if I hadn't realized something was terribly wrong and called a neighbor I'm not sure what would have happened.

I too was airlifted to a neurological ICU where I had a craniotomy to relieve the bleed. A month later I had Gamma Knife to treat the large tumor that bled plus a tiny one that showed up when they were doing the mapping MRI.

So here is the rest of my experience. I temporarily lost all vision in my left eye but it came back! I had trouble with focusing my eyes, shape recognition, sensitivity to light and bright colors. Also, my peripheral vision was mostly gone and my hearing comprehension for words was affected. My short term memory was shot as was some of my cognitive skills. I joke now that I'm just 'normal' instead of highly intelligent!

If you go to my blog and use the tag 'brain tumor' (and 'brain tumer' which is how I spelled it right after I came home from the hospital, it might help to read how quickly I came back from all of those things! http://black-horse-design.blogspot.com/ Also, I described the whole Gamma Knife process that I experienced.

The thing is, I have come back from almost all of them! My peripheral vision is about 30% of what it used to be and there are still days I have trouble focusing my eyes but that could be from currently being on carbo taxol and temodar as part of a drug trial. I got photogray glasses to help with the light and color sensitivity. My brain still gets very tired as the day progresses and I have to plan to take it easy from mid-afternoon on.  But the really good news is the brain MRI done three months after Gamma Knife showed the large tumor had shrunk by 50% and the tiny one has remained stable. My onc feels that little one is now only scar tissue.

A fantastic book that I had read before this happend is Jill Taylor-Bolte's book, 'My Stroke of Insight'. It helped me to understand what had happened to me and how I could actively work to heal my brean and restore or create new neural pathways. I highly recommend it!

Most of all, don't be afraid and feel free to email me if you think I can help in any way. Carmon in NM

Hi Jill – I had the same thing happen in June. A 2×3 cm tumor that had not shown on my previous scan began bleeding into my brain. I was alone at the time and if I hadn't realized something was terribly wrong and called a neighbor I'm not sure what would have happened.

I too was airlifted to a neurological ICU where I had a craniotomy to relieve the bleed. A month later I had Gamma Knife to treat the large tumor that bled plus a tiny one that showed up when they were doing the mapping MRI.

So here is the rest of my experience. I temporarily lost all vision in my left eye but it came back! I had trouble with focusing my eyes, shape recognition, sensitivity to light and bright colors. Also, my peripheral vision was mostly gone and my hearing comprehension for words was affected. My short term memory was shot as was some of my cognitive skills. I joke now that I'm just 'normal' instead of highly intelligent!

If you go to my blog and use the tag 'brain tumor' (and 'brain tumer' which is how I spelled it right after I came home from the hospital, it might help to read how quickly I came back from all of those things! http://black-horse-design.blogspot.com/ Also, I described the whole Gamma Knife process that I experienced.

The thing is, I have come back from almost all of them! My peripheral vision is about 30% of what it used to be and there are still days I have trouble focusing my eyes but that could be from currently being on carbo taxol and temodar as part of a drug trial. I got photogray glasses to help with the light and color sensitivity. My brain still gets very tired as the day progresses and I have to plan to take it easy from mid-afternoon on.  But the really good news is the brain MRI done three months after Gamma Knife showed the large tumor had shrunk by 50% and the tiny one has remained stable. My onc feels that little one is now only scar tissue.

A fantastic book that I had read before this happend is Jill Taylor-Bolte's book, 'My Stroke of Insight'. It helped me to understand what had happened to me and how I could actively work to heal my brean and restore or create new neural pathways. I highly recommend it!

Most of all, don't be afraid and feel free to email me if you think I can help in any way. Carmon in NM

Sending prayers for you and Eric.

Jule

Sending prayers for you and Eric.

Jule

Hi Jill,

Sorry about all the challenges you have both been faced with recently.  As far as the 6 month SSDI waiting period, Stage IV Melanoma is an automatic qualifier.  If you get all your tests and records etc. and go in organized, you can push to have your 6 month waiting period start from the time Eric was initially diagnosed as having stage IV disease.

In my case I had my lung tumor show up 6 months prior to my deciding it needed to come out, even if it wasn't growing and looked bengin.  Sure enough I went from stage 2A directly to stage IV after my lung tumor was removed and diagnosed as metastatic mel.

When applying for SSDI my case worker petitioned to have my waiting period be pushed back to when we first found the tumor 6 months prior.  As a result, 3 weeks after my lung surgery I was recieving SSDI benefits.  I had the documentation to show I had stage IV disease for at least 6 months prior.  It didn't matter that I didn't have any symptoms and was still working.

I just finished up my 9 months of unrestricted benefits and am now stopping my SSDI.  After 9 months of unlimited income, you cannot earn over $1000 gross per month or risk loosing most of your benefits.

I hope that helps.  Eric should be several months into his waiting period, or perhaps even past it.  With stage IV disease they tend to expidite things since our diagnosis for survival 6 months out or longer is pretty poor.  Look into it.  Dr.'s notes, lab reports, anything that documents his disease, especially when you found out about how advanced things were should be the start date of your 6 months waiting period, not when you file.

Gest of luck with everything,

Kim

Hi Jill,

Sorry about all the challenges you have both been faced with recently.  As far as the 6 month SSDI waiting period, Stage IV Melanoma is an automatic qualifier.  If you get all your tests and records etc. and go in organized, you can push to have your 6 month waiting period start from the time Eric was initially diagnosed as having stage IV disease.

In my case I had my lung tumor show up 6 months prior to my deciding it needed to come out, even if it wasn't growing and looked bengin.  Sure enough I went from stage 2A directly to stage IV after my lung tumor was removed and diagnosed as metastatic mel.

When applying for SSDI my case worker petitioned to have my waiting period be pushed back to when we first found the tumor 6 months prior.  As a result, 3 weeks after my lung surgery I was recieving SSDI benefits.  I had the documentation to show I had stage IV disease for at least 6 months prior.  It didn't matter that I didn't have any symptoms and was still working.

I just finished up my 9 months of unrestricted benefits and am now stopping my SSDI.  After 9 months of unlimited income, you cannot earn over $1000 gross per month or risk loosing most of your benefits.

I hope that helps.  Eric should be several months into his waiting period, or perhaps even past it.  With stage IV disease they tend to expidite things since our diagnosis for survival 6 months out or longer is pretty poor.  Look into it.  Dr.'s notes, lab reports, anything that documents his disease, especially when you found out about how advanced things were should be the start date of your 6 months waiting period, not when you file.

Gest of luck with everything,

Kim

Jill – I am so sorry.  This is very difficult for both of you.  My husband had two rounds of gamma knife for his brain lesions and what you are describing sounds similiar to what happened with Bob.  I wanted to share a website with you that was my bible during the last months of Bob's illness – that and hospice.  I called hospice in early and they were wonderful.  The website is Brain Hospice and it is a wealth of information.  Blessings to you and Eric.

Jill – I am so sorry.  This is very difficult for both of you.  My husband had two rounds of gamma knife for his brain lesions and what you are describing sounds similiar to what happened with Bob.  I wanted to share a website with you that was my bible during the last months of Bob's illness – that and hospice.  I called hospice in early and they were wonderful.  The website is Brain Hospice and it is a wealth of information.  Blessings to you and Eric.

Hi Jill,

I am so sorry that you and Eric are having to deal with these brain mets.  I know it is scary and I also know how hard it is to deal with as a caregiver, since my husband is the melanoma patient.  You feel helpless watching this happen to someone you love.  You suffer from melanoma right along with Eric, as I do with my husband.

My husband is on SSD.  We filled out the forms online and then went into the Social Security office.  My husband was approved within a couple of days….shockingly fast!  His start date was backdated to his date of diagnosis and a deposit appeared in our checking account.  I hope that this helps.

Pat

Hi Jill,

I am so sorry that you and Eric are having to deal with these brain mets.  I know it is scary and I also know how hard it is to deal with as a caregiver, since my husband is the melanoma patient.  You feel helpless watching this happen to someone you love.  You suffer from melanoma right along with Eric, as I do with my husband.

My husband is on SSD.  We filled out the forms online and then went into the Social Security office.  My husband was approved within a couple of days….shockingly fast!  His start date was backdated to his date of diagnosis and a deposit appeared in our checking account.  I hope that this helps.

Pat

I am very sorry about Eric's brain tumors. I remember that you said that Eric is BRAF-positive and I am wondering whether it would be possible to get rid of his brain tumors via surgery or gamm-knife and then start BRAF? Would it be an option?

I am very sorry about Eric's brain tumors. I remember that you said that Eric is BRAF-positive and I am wondering whether it would be possible to get rid of his brain tumors via surgery or gamm-knife and then start BRAF? Would it be an option?

I have not done gamma knife but I did do WBR and temodar.  It was a breeze.  I took zofran 20 min. before bed and the tem. at bedtime.  No side effects.  The first day of rad. it gave me some headache / naseua trouble.  But the other days were fine, although it did really increase my fatigue.

I am so sorry you guys are having such a hard time.

As far as soc. sec. disability, when I got on it was a 6 mo. waiting period from the date of disability.  I put my date of disability as my first surgery since from then on my ability to go to work / class was limited and then finally not at all able to go.  So I'd date it as far back as when he first started treatments.  That 6 month period is not counted toward back pay.  But say he started all this 8 months ago, you'd be eligible now and also get 2 months backpay.  Just spitball'n numbers here.  After a person is on disability for 2 years they can get medicare.

I think there are expediated programs for those with a prognosis of less than a year to live.  That I don't know about.   I've been on SSD for a long time.

hope that helps!

love,

Amy

I have not done gamma knife but I did do WBR and temodar.  It was a breeze.  I took zofran 20 min. before bed and the tem. at bedtime.  No side effects.  The first day of rad. it gave me some headache / naseua trouble.  But the other days were fine, although it did really increase my fatigue.

I am so sorry you guys are having such a hard time.

As far as soc. sec. disability, when I got on it was a 6 mo. waiting period from the date of disability.  I put my date of disability as my first surgery since from then on my ability to go to work / class was limited and then finally not at all able to go.  So I'd date it as far back as when he first started treatments.  That 6 month period is not counted toward back pay.  But say he started all this 8 months ago, you'd be eligible now and also get 2 months backpay.  Just spitball'n numbers here.  After a person is on disability for 2 years they can get medicare.

I think there are expediated programs for those with a prognosis of less than a year to live.  That I don't know about.   I've been on SSD for a long time.

hope that helps!

love,

Amy

I have not done gamma knife but I did do WBR and temodar.  It was a breeze.  I took zofran 20 min. before bed and the tem. at bedtime.  No side effects.  The first day of rad. it gave me some headache / naseua trouble.  But the other days were fine, although it did really increase my fatigue.

I am so sorry you guys are having such a hard time.

As far as soc. sec. disability, when I got on it was a 6 mo. waiting period from the date of disability.  I put my date of disability as my first surgery since from then on my ability to go to work / class was limited and then finally not at all able to go.  So I'd date it as far back as when he first started treatments.  That 6 month period is not counted toward back pay.  But say he started all this 8 months ago, you'd be eligible now and also get 2 months backpay.  Just spitball'n numbers here.  After a person is on disability for 2 years they can get medicare.

I think there are expediated programs for those with a prognosis of less than a year to live.  That I don't know about.   I've been on SSD for a long time.

hope that helps!

love,

Amy

I have not done gamma knife but I did do WBR and temodar.  It was a breeze.  I took zofran 20 min. before bed and the tem. at bedtime.  No side effects.  The first day of rad. it gave me some headache / naseua trouble.  But the other days were fine, although it did really increase my fatigue.

I am so sorry you guys are having such a hard time.

As far as soc. sec. disability, when I got on it was a 6 mo. waiting period from the date of disability.  I put my date of disability as my first surgery since from then on my ability to go to work / class was limited and then finally not at all able to go.  So I'd date it as far back as when he first started treatments.  That 6 month period is not counted toward back pay.  But say he started all this 8 months ago, you'd be eligible now and also get 2 months backpay.  Just spitball'n numbers here.  After a person is on disability for 2 years they can get medicare.

I think there are expediated programs for those with a prognosis of less than a year to live.  That I don't know about.   I've been on SSD for a long time.

hope that helps!

love,

Amy