› Forums › General Melanoma Community › Want to be done with this!!!
- This topic has 22 replies, 10 voices, and was last updated 12 years, 11 months ago by
nicoli.
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- May 24, 2011 at 10:51 pm
After a year and three months of nothing but bad news, and treatments that have caused worse side effects than anything the cancer has done with no success, I just want our lives to be normal again. We have been through two surgeries, Ipi clinical trial, IL2, BRAF testing only to find out he doesn't qualify, Ipi compassionate which has swelled his pituitary gland so it is no longer functioning. I know people have dealt with this for longer than we have, but our lives are constantly being turned upside down. We have a 13yo daughter we have to leave home to deal with thi
After a year and three months of nothing but bad news, and treatments that have caused worse side effects than anything the cancer has done with no success, I just want our lives to be normal again. We have been through two surgeries, Ipi clinical trial, IL2, BRAF testing only to find out he doesn't qualify, Ipi compassionate which has swelled his pituitary gland so it is no longer functioning. I know people have dealt with this for longer than we have, but our lives are constantly being turned upside down. We have a 13yo daughter we have to leave home to deal with this on her own, while we trek to Boston for treatments or he ends up in the hospital unexpectedly. If we had just a glimmer of good news, I might feel differently, but now we are looking at going to NIH for three weeks for TIL treatments with even less hope of success than anything else we've tried. His disability is almost out, his fmla time is up. In less than three months we will be without income and without health insurance unless we pay exorbitantly for it. Social Security/Disability has a six month waiting period and you have to prove that the condition will end in your death. Just needed to vent. I would never say any of this to my husband. I would encourage him to fly to mars if it might make a difference, just feeling overwhelmed with the news that yet another treatment has failed him.
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- May 24, 2011 at 11:09 pm
Venting is an important part of the journey……I do know that, even though I am a newbie here.
Even though I do not know you, my heart, as well as my prayers, go out ot you and your family during this journey. I have no other words of comfort/encouragement other than to say, "Trust in the Heavenly Father above."
~Sharon in GA~
stage III and new to the journey with melanoma
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- May 24, 2011 at 11:50 pm
Thanks Sharon. I do believe that God has a plan, and I'm normally the first one to tell everyone else not to get down or give up. It's just been a crazy ride and the man with the controls won't stop it so we can get off!
I hope for you, that your journey leads you down a different path and that your faith helps you through it.
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- May 24, 2011 at 11:50 pm
Thanks Sharon. I do believe that God has a plan, and I'm normally the first one to tell everyone else not to get down or give up. It's just been a crazy ride and the man with the controls won't stop it so we can get off!
I hope for you, that your journey leads you down a different path and that your faith helps you through it.
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- May 24, 2011 at 11:09 pm
Venting is an important part of the journey……I do know that, even though I am a newbie here.
Even though I do not know you, my heart, as well as my prayers, go out ot you and your family during this journey. I have no other words of comfort/encouragement other than to say, "Trust in the Heavenly Father above."
~Sharon in GA~
stage III and new to the journey with melanoma
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- May 24, 2011 at 11:52 pm
Oh, I am so sorry! Yes, please…feel free to vent here anytime. People are so great here…and they really understand where you're coming from.
I will keep you in my thoughts and prayers and hope the TIL will work for him!
We have a 13 yo daughter and a 14 yo son, and I can understand the challenges. We are very fortunate to have parents of their friends that understand what is going on and are willing to help out at a moment's notice.
You said your husband is being seen in Boston. Is he going to Dana Farber or MGH?
Michelle, wife of Don, Stage IV
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- May 24, 2011 at 11:52 pm
Oh, I am so sorry! Yes, please…feel free to vent here anytime. People are so great here…and they really understand where you're coming from.
I will keep you in my thoughts and prayers and hope the TIL will work for him!
We have a 13 yo daughter and a 14 yo son, and I can understand the challenges. We are very fortunate to have parents of their friends that understand what is going on and are willing to help out at a moment's notice.
You said your husband is being seen in Boston. Is he going to Dana Farber or MGH?
Michelle, wife of Don, Stage IV
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- May 24, 2011 at 11:55 pm
I'm so sorry all of you are going through all of this! I don't know the SS system, but is there any way his dr can get some kind of medical emergency gap SS/D help for you? That's a stab in the dark, I know. This is another long shot, but you might try contacting your state rep from your district and see if there's something he qualifies for.
You vent anytime you need to. You've got a lot to feel overwhelmed by! Hang tough, this really won't last forever, there is a light at the end of the tunnel…even if you can't see it right now. Praying it comes into view soon, friend.
Lord, in Your mercy, extent abundant help to this family. All she wants is a glimmer of goos news. Surely that's possible! Grant peace to this family, hope in their trials, Your walk with them in the storm. Thank You. Amen and Amen.
Grace and peace,
Carol
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- May 24, 2011 at 11:55 pm
I'm so sorry all of you are going through all of this! I don't know the SS system, but is there any way his dr can get some kind of medical emergency gap SS/D help for you? That's a stab in the dark, I know. This is another long shot, but you might try contacting your state rep from your district and see if there's something he qualifies for.
You vent anytime you need to. You've got a lot to feel overwhelmed by! Hang tough, this really won't last forever, there is a light at the end of the tunnel…even if you can't see it right now. Praying it comes into view soon, friend.
Lord, in Your mercy, extent abundant help to this family. All she wants is a glimmer of goos news. Surely that's possible! Grant peace to this family, hope in their trials, Your walk with them in the storm. Thank You. Amen and Amen.
Grace and peace,
Carol
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- May 25, 2011 at 4:03 am
social security HAS to approve your husband's disability-no ifs and or buts…period…if you filled out paperwork and it's been denied…get an atty…my social worker at the hospital dogs the ssi and fast tracked my application…whatever hospital you go to should have a social worker who will get the ball rolling on applications. they also schedule calls and hound the ssi office for you…heh, heh…got to like that!
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- May 25, 2011 at 4:03 am
social security HAS to approve your husband's disability-no ifs and or buts…period…if you filled out paperwork and it's been denied…get an atty…my social worker at the hospital dogs the ssi and fast tracked my application…whatever hospital you go to should have a social worker who will get the ball rolling on applications. they also schedule calls and hound the ssi office for you…heh, heh…got to like that!
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- May 25, 2011 at 4:23 am
For social security you don't have to prove that the condition will end in death. You have to prove that you (or in your case your husband) is unable to work. A stage IV diagnosis is usually not questioned. Mine was accepted within 11 days of receipt of application. However, all of us have had the 6 month from diagnosis date. That's diagnosis of advance melanoma not the original mole.
If you qualify there is a different form of ss that will help if you have very little income and have less than $2,000 in the bank. In that one I beliver medicaid kicks in without the wait.
If your husband has been out on fmla then he hasn't been able to work. Please contact the social security office for help. I did the paperwork myself online.
I totally get the need to vent. This is so rough on the patient and entire family.
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- May 25, 2011 at 4:23 am
For social security you don't have to prove that the condition will end in death. You have to prove that you (or in your case your husband) is unable to work. A stage IV diagnosis is usually not questioned. Mine was accepted within 11 days of receipt of application. However, all of us have had the 6 month from diagnosis date. That's diagnosis of advance melanoma not the original mole.
If you qualify there is a different form of ss that will help if you have very little income and have less than $2,000 in the bank. In that one I beliver medicaid kicks in without the wait.
If your husband has been out on fmla then he hasn't been able to work. Please contact the social security office for help. I did the paperwork myself online.
I totally get the need to vent. This is so rough on the patient and entire family.
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- May 25, 2011 at 4:43 am
Its good to vent, the good people here would listen to me when i aired my thoughts and fears a couple of years ago.
Good luck with TIL there were results from Trials of 93 people that Rosenberg from NIH released which looked promising as far as giving a Complete Response. If you get a chance ask about E7080 its another Inhibitor taken via tablet that looks promising, hopefully TIL will do the trick but its good to line up other treatments as back up.
best wishes
James
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- May 25, 2011 at 4:43 am
Its good to vent, the good people here would listen to me when i aired my thoughts and fears a couple of years ago.
Good luck with TIL there were results from Trials of 93 people that Rosenberg from NIH released which looked promising as far as giving a Complete Response. If you get a chance ask about E7080 its another Inhibitor taken via tablet that looks promising, hopefully TIL will do the trick but its good to line up other treatments as back up.
best wishes
James
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- May 25, 2011 at 9:42 am
I can really relate to what you are feeling. It feels like we are trapped. I have just lost my job and I don't know for how long my husband will be able to work. He has been diagnosed with stage IV melanoma on 22 December 2010, with mets to his lymph nodes and both lungs. Got the results from the MRI last week and we were told there is a spot. I can't find a permanent job because who will take care of him when he needs it. Our children are 13 and 6 years old and it has been really hard financially and now it will be even harder.
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- May 25, 2011 at 11:47 am
You can work from home? It's not much, but it's something. Good luck.
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- May 25, 2011 at 11:47 am
You can work from home? It's not much, but it's something. Good luck.
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- May 25, 2011 at 9:42 am
I can really relate to what you are feeling. It feels like we are trapped. I have just lost my job and I don't know for how long my husband will be able to work. He has been diagnosed with stage IV melanoma on 22 December 2010, with mets to his lymph nodes and both lungs. Got the results from the MRI last week and we were told there is a spot. I can't find a permanent job because who will take care of him when he needs it. Our children are 13 and 6 years old and it has been really hard financially and now it will be even harder.
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- May 25, 2011 at 12:43 pm
Thanks to everyone for your advice and empathy. My husband is a stubborn, tough guy and although he should not work, he is determined to where he can(just went back today after two weeks in bed, throwing up all morning before he left). He worries about the finances ten times more than I do. Most days, I'm a "take it as it comes" kinda girl. This disease can just push you to your limit. We did apply for ss/dis back in December (my husband recurred at stage IV in October) on my sister's advice. If you can believe it, her husband died of pancreatic cancer only months before mine was diagnosed. She advised us that once we were in the system things would go faster when we hit the point at which we qualified. On the job front, I do work, and my job is very flexible and my boss is great, but there have been times where a trip to the hospital left everyone in the lurch and I can't count the days I've missed, so I completely understand the dilemma of needing income but also needing to take care of my family. I also think you just come to the point where your brain can't think about anything else. I know I do. I appreciate you all giving me a safe place to "whine". I can put on a brave face everywhere else if I have one place to commiserate.
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- May 25, 2011 at 12:43 pm
Thanks to everyone for your advice and empathy. My husband is a stubborn, tough guy and although he should not work, he is determined to where he can(just went back today after two weeks in bed, throwing up all morning before he left). He worries about the finances ten times more than I do. Most days, I'm a "take it as it comes" kinda girl. This disease can just push you to your limit. We did apply for ss/dis back in December (my husband recurred at stage IV in October) on my sister's advice. If you can believe it, her husband died of pancreatic cancer only months before mine was diagnosed. She advised us that once we were in the system things would go faster when we hit the point at which we qualified. On the job front, I do work, and my job is very flexible and my boss is great, but there have been times where a trip to the hospital left everyone in the lurch and I can't count the days I've missed, so I completely understand the dilemma of needing income but also needing to take care of my family. I also think you just come to the point where your brain can't think about anything else. I know I do. I appreciate you all giving me a safe place to "whine". I can put on a brave face everywhere else if I have one place to commiserate.
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- May 25, 2011 at 1:43 pm
I applied for Supplemental Security Income, a form of Social Security, in March of 2010 and received my first check in July of 2010. A whopping $594 per month. They quickly said they had overpaid me and reduced the payment to $440 per month. Not much help but I believe it is based on your prior incomes and I chose to be a stay at home mother for many years.
But for me SSI was not the goal, the real prize was Medicaid. Without health insurance, I badly needed Medicaid to pay for cancer costs. Medicaid is for families with minor children and our children are grown so they said I had to qualify for SSI before they would give me Medicaid. To qualify for SSI you have to be extremely poor. More than about $1,400 per month for two people is too much income to qualify.
Bottom line: medical costs and unemployement due to illness are brutal. Many, many people have to turn to bankruptcy, etc. There has got to be a better way.
NIcki, Stage 3b, scalp
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- May 25, 2011 at 1:43 pm
I applied for Supplemental Security Income, a form of Social Security, in March of 2010 and received my first check in July of 2010. A whopping $594 per month. They quickly said they had overpaid me and reduced the payment to $440 per month. Not much help but I believe it is based on your prior incomes and I chose to be a stay at home mother for many years.
But for me SSI was not the goal, the real prize was Medicaid. Without health insurance, I badly needed Medicaid to pay for cancer costs. Medicaid is for families with minor children and our children are grown so they said I had to qualify for SSI before they would give me Medicaid. To qualify for SSI you have to be extremely poor. More than about $1,400 per month for two people is too much income to qualify.
Bottom line: medical costs and unemployement due to illness are brutal. Many, many people have to turn to bankruptcy, etc. There has got to be a better way.
NIcki, Stage 3b, scalp
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