› Forums › General Melanoma Community › Update on myself. IL-2… Yervoy… now Clinical Trial???
- This topic has 36 replies, 8 voices, and was last updated 13 years ago by chet.
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- October 24, 2011 at 4:20 am
Hello everyone! It's been a while since I've last posted. Not too much has been going on in my life, just trying to live and appreciate each day given to me. Okay, so here's my update.I finished all 4 infusions of Yervoy this summer, my last one being either in late July or early August. My oncologist ordered me a PET Scan and had me tested to see if I was BRAF+ the first week of September because my health insurance was about to end on September 25 and she wanted to get all that work in before it expired. Turns out that I am not B-RAF + (DAMN!). The PET Scan was done way prematurely, only a month after the last infusion, so I'm not too focused on the results I got back from it because I know it can take up to 6 months to get an immune response from Yervoy. I was really confused on how to feel after the 4th infusion because I could feel the tumor above my left clavicle getting bigger and bigger. I kept in mind that a lot of you said the tumors will inflame before it gets better. Well it seems that I'm a late responder, a few weeks ago I started to finally feel the tumor go down drastically and it still seems to be shrinking a lot and getting softer, thank God! I hope it's still continuing to work.
Now that I no longer have health insurance since I turned 26 years-old last month, my oncologist gave me a list of 4 different places to enter a clinical trial.Osman,Brendan D. Curti, MD — (his title says GU but he does melanoma too)Director, Genitourinary Oncology Research and Biotherapy Clinical ProgramPortland Providence Medical CenterPortland, ORDr. Gregory DanielsCancer Immune Therapy Working GroupUniversity of California San DiegoRebecca and John Moores Cancer CenterLa Jolla, CAMichael Wong, MD, PH.DUniversity of Southern CaliforniaHealth Sciences CampusLos Angelas, CADr. Rene GonzalesMelanoma Program — University of ColoradoAurora, COI need help in choosing which one is best for me to go to and ASAP. Supposedly she tells me that they're the best of the best. So far, the only treatmeants I've done are IL-2 at the beginning of this year and the Yervoy(IPI) this summer. I'm kind of freaking out because I just read a post where you guys were saying that they only provide the drug and all other expenses are on your own. I'm just wondering if any of this is even possible because I would have to be flying out from Texas everytime and I'm not even sure how frequent, but I imagine a lot. Yikes. Sometimes I want to be mad at the universe for giving me this horrible disease so young, but I have faith that I'm going to be okay and that things could always be worse. I will find a way. We will find a way. Linda, I'm praying for you to have a speedy recovery! And CarolB, I hope you're doing fine. Anyway, any advice/input is greatly appreciated as always. The strength and warrior attitude you guys have is inspiring and I continue to hold on to the hope that we will find a cure. Always praying for everyone here and those fighting this cancer!
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- October 24, 2011 at 7:43 am
Some people have posted (check the archives to) about the Angel Network helping with free flightshttp://community.melanoma.org/cgi-bin/mpip/dbforum.pl?header=search&db=main_bb&post=98611
Posted by Alli at 12:17 on Wed, Feb 06, 2002 [Show other posts by Alli]
I ran across this ad and thought it sounded like a great idea. The Corporate Angel Network uses corporate jets to fly cancer patients to their out of state appointments. Has anyone tried it? I have listed the information below. Their web-site is corpangelnetwork.org. Needing to travel for treatment, consultation, or check-up. Able to walk up the stairs of a private jet without assistance. Requiring no form of life support or medical help on board. Save the expense of commercial tickets. Travel in comfort and ease. Avoid large crowds in terminals and on planes. Fly with an adult companion; a child patient may travel with both parents. Travel as often as necessary. Patient calls CAN at 914.328.1313 to register when there is a specific travel date; requests can be taken up to three weeks in advance. Supplies name, address, and telephone number of current physician. Makes back-up travel arrangements.
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Since you mention flyiing out from Texas, Have you checked what MD Anderson can provide for in-state residents that do not have medical insurance? As a state supported institution, you should check what help they can provide.
Good luck on the continuing reduction and elimination of your tumors.
.
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- October 24, 2011 at 10:41 am
Chet,
What a mixed bag. It does sound like your responding so that is great!!!!! Now deal with the financial. Get yourself signed up for social security. Not sure if you have enough quarters because you are so young. There are different things they can offer and thier is medicade. Not the best out there but something that can be offered.
My son was also out of a job a few years ago and his wife was pregnant. He actually enrolled for a masters degree course and they offered health care through the college. It wasn't a great health care but at the same time (this was at Univ of Alabama – birmingham) if there was a need outside of the college care they provided! At the same time one of his friends husbands wife was also dealing with melanoma. They sent her to MDA where she was treated. I don't remember exactly how it was dealt with (unfortunately it was not successful) but I do know that good health care was provided. Don't let them just push you aside. Ask and have your family also be advocates to find help.
I do like hearing that you are being a late responder.
hugs,
Linda
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- October 26, 2011 at 1:13 am
Right now I'm receiving disability which is getting me by, but it's not enough. I want to go back to work because I feel absolutely fine, but I'm scared that if I find a job and have to constantly leave for treatments and checkups, they'll get rid of me and I'll lose my disability. To my understanding, if you go back to work and can work straight for 9 months, they'll do a review then eventually drop you from disability. I don't want to risk it. Good to hear from you Linda! Hope all is well.
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- October 26, 2011 at 1:13 am
Right now I'm receiving disability which is getting me by, but it's not enough. I want to go back to work because I feel absolutely fine, but I'm scared that if I find a job and have to constantly leave for treatments and checkups, they'll get rid of me and I'll lose my disability. To my understanding, if you go back to work and can work straight for 9 months, they'll do a review then eventually drop you from disability. I don't want to risk it. Good to hear from you Linda! Hope all is well.
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- October 26, 2011 at 1:13 am
Right now I'm receiving disability which is getting me by, but it's not enough. I want to go back to work because I feel absolutely fine, but I'm scared that if I find a job and have to constantly leave for treatments and checkups, they'll get rid of me and I'll lose my disability. To my understanding, if you go back to work and can work straight for 9 months, they'll do a review then eventually drop you from disability. I don't want to risk it. Good to hear from you Linda! Hope all is well.
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- October 24, 2011 at 10:41 am
Chet,
What a mixed bag. It does sound like your responding so that is great!!!!! Now deal with the financial. Get yourself signed up for social security. Not sure if you have enough quarters because you are so young. There are different things they can offer and thier is medicade. Not the best out there but something that can be offered.
My son was also out of a job a few years ago and his wife was pregnant. He actually enrolled for a masters degree course and they offered health care through the college. It wasn't a great health care but at the same time (this was at Univ of Alabama – birmingham) if there was a need outside of the college care they provided! At the same time one of his friends husbands wife was also dealing with melanoma. They sent her to MDA where she was treated. I don't remember exactly how it was dealt with (unfortunately it was not successful) but I do know that good health care was provided. Don't let them just push you aside. Ask and have your family also be advocates to find help.
I do like hearing that you are being a late responder.
hugs,
Linda
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- October 24, 2011 at 10:41 am
Chet,
What a mixed bag. It does sound like your responding so that is great!!!!! Now deal with the financial. Get yourself signed up for social security. Not sure if you have enough quarters because you are so young. There are different things they can offer and thier is medicade. Not the best out there but something that can be offered.
My son was also out of a job a few years ago and his wife was pregnant. He actually enrolled for a masters degree course and they offered health care through the college. It wasn't a great health care but at the same time (this was at Univ of Alabama – birmingham) if there was a need outside of the college care they provided! At the same time one of his friends husbands wife was also dealing with melanoma. They sent her to MDA where she was treated. I don't remember exactly how it was dealt with (unfortunately it was not successful) but I do know that good health care was provided. Don't let them just push you aside. Ask and have your family also be advocates to find help.
I do like hearing that you are being a late responder.
hugs,
Linda
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- October 26, 2011 at 1:08 am
Thanks for info on The Angel Network! Much appreciated. I was thinking about MD Anderson since I'm only 3 hours away from them but my oncologist told me she gave me the list of those 4 places because they specialize in melanoma and they're the best of the best. I would go to MD Anderson but I just want the best treatment possible. Which would you choose???
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- October 26, 2011 at 1:08 am
Thanks for info on The Angel Network! Much appreciated. I was thinking about MD Anderson since I'm only 3 hours away from them but my oncologist told me she gave me the list of those 4 places because they specialize in melanoma and they're the best of the best. I would go to MD Anderson but I just want the best treatment possible. Which would you choose???
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- October 26, 2011 at 1:08 am
Thanks for info on The Angel Network! Much appreciated. I was thinking about MD Anderson since I'm only 3 hours away from them but my oncologist told me she gave me the list of those 4 places because they specialize in melanoma and they're the best of the best. I would go to MD Anderson but I just want the best treatment possible. Which would you choose???
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- October 24, 2011 at 7:43 am
Some people have posted (check the archives to) about the Angel Network helping with free flightshttp://community.melanoma.org/cgi-bin/mpip/dbforum.pl?header=search&db=main_bb&post=98611
Posted by Alli at 12:17 on Wed, Feb 06, 2002 [Show other posts by Alli]
I ran across this ad and thought it sounded like a great idea. The Corporate Angel Network uses corporate jets to fly cancer patients to their out of state appointments. Has anyone tried it? I have listed the information below. Their web-site is corpangelnetwork.org. Needing to travel for treatment, consultation, or check-up. Able to walk up the stairs of a private jet without assistance. Requiring no form of life support or medical help on board. Save the expense of commercial tickets. Travel in comfort and ease. Avoid large crowds in terminals and on planes. Fly with an adult companion; a child patient may travel with both parents. Travel as often as necessary. Patient calls CAN at 914.328.1313 to register when there is a specific travel date; requests can be taken up to three weeks in advance. Supplies name, address, and telephone number of current physician. Makes back-up travel arrangements.
**********************************
Since you mention flyiing out from Texas, Have you checked what MD Anderson can provide for in-state residents that do not have medical insurance? As a state supported institution, you should check what help they can provide.
Good luck on the continuing reduction and elimination of your tumors.
.
-
- October 24, 2011 at 7:43 am
Some people have posted (check the archives to) about the Angel Network helping with free flightshttp://community.melanoma.org/cgi-bin/mpip/dbforum.pl?header=search&db=main_bb&post=98611
Posted by Alli at 12:17 on Wed, Feb 06, 2002 [Show other posts by Alli]
I ran across this ad and thought it sounded like a great idea. The Corporate Angel Network uses corporate jets to fly cancer patients to their out of state appointments. Has anyone tried it? I have listed the information below. Their web-site is corpangelnetwork.org. Needing to travel for treatment, consultation, or check-up. Able to walk up the stairs of a private jet without assistance. Requiring no form of life support or medical help on board. Save the expense of commercial tickets. Travel in comfort and ease. Avoid large crowds in terminals and on planes. Fly with an adult companion; a child patient may travel with both parents. Travel as often as necessary. Patient calls CAN at 914.328.1313 to register when there is a specific travel date; requests can be taken up to three weeks in advance. Supplies name, address, and telephone number of current physician. Makes back-up travel arrangements.
**********************************
Since you mention flyiing out from Texas, Have you checked what MD Anderson can provide for in-state residents that do not have medical insurance? As a state supported institution, you should check what help they can provide.
Good luck on the continuing reduction and elimination of your tumors.
.
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- October 24, 2011 at 11:08 am
Chet,
I am glad to hear that you may be a late responder to the Yervoy. With clinical trials, it varies from hospital to hospital what they will cover. I think that your participation in one should be based not only on what they will pay for, but also the treatment plan. Some drug companies will help cover the cost of drugs regardless of where you go. A patient advocate can help you with this. Also, sometimes you can coordinate with your local oncologist so travel time is less (ie, seeing your local onc for checkups). We have contacted Angel Flight in the past. As long as you know when you have to travel they are very accomodating. It is in the rush situations that you may have a problem – they need some advance notice. You can also look into trials at NIH – they reimburse you for travel and will pay for your flights. No insurance is needed there, and the cost of all tests/drugs are covered. However, all followup has to be done there too and may require alot of travel depending on what trial you get into.
On a side note, I have heard wonderful things about Dr. Curti. We are on the east coast, so getting into his trials wasn't reasonable for Dave. But I do know they are doing one with steriotactic radiation prior to IL-2 which is what Dave wanted to do. I spoke with a gentleman by the name of Scott Fountain there. Really easy to get ahold of and answered every question I had. We also worked with Dr. Wong when he was at Roswell (he left about 18 months ago). My husband really liked him and he had a great relationship with him. We were sad to see him leave. Dave seen him while doing Interferon and still stage III.
Do you know which trials are offered here? I would think that an anti-pd-1 would be your next step. Is that what your oncologist is looking into?
If you need info on NIH, you can email me. Others on this board have been treated there (ValinMtl is one). Dave wasn't accepted into anything at that time (he is HLA negative, which is what they were looking for at that time).
Best wishes to you and I hope others can give you more info.
Maria
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- October 24, 2011 at 11:08 am
Chet,
I am glad to hear that you may be a late responder to the Yervoy. With clinical trials, it varies from hospital to hospital what they will cover. I think that your participation in one should be based not only on what they will pay for, but also the treatment plan. Some drug companies will help cover the cost of drugs regardless of where you go. A patient advocate can help you with this. Also, sometimes you can coordinate with your local oncologist so travel time is less (ie, seeing your local onc for checkups). We have contacted Angel Flight in the past. As long as you know when you have to travel they are very accomodating. It is in the rush situations that you may have a problem – they need some advance notice. You can also look into trials at NIH – they reimburse you for travel and will pay for your flights. No insurance is needed there, and the cost of all tests/drugs are covered. However, all followup has to be done there too and may require alot of travel depending on what trial you get into.
On a side note, I have heard wonderful things about Dr. Curti. We are on the east coast, so getting into his trials wasn't reasonable for Dave. But I do know they are doing one with steriotactic radiation prior to IL-2 which is what Dave wanted to do. I spoke with a gentleman by the name of Scott Fountain there. Really easy to get ahold of and answered every question I had. We also worked with Dr. Wong when he was at Roswell (he left about 18 months ago). My husband really liked him and he had a great relationship with him. We were sad to see him leave. Dave seen him while doing Interferon and still stage III.
Do you know which trials are offered here? I would think that an anti-pd-1 would be your next step. Is that what your oncologist is looking into?
If you need info on NIH, you can email me. Others on this board have been treated there (ValinMtl is one). Dave wasn't accepted into anything at that time (he is HLA negative, which is what they were looking for at that time).
Best wishes to you and I hope others can give you more info.
Maria
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- October 24, 2011 at 11:08 am
Chet,
I am glad to hear that you may be a late responder to the Yervoy. With clinical trials, it varies from hospital to hospital what they will cover. I think that your participation in one should be based not only on what they will pay for, but also the treatment plan. Some drug companies will help cover the cost of drugs regardless of where you go. A patient advocate can help you with this. Also, sometimes you can coordinate with your local oncologist so travel time is less (ie, seeing your local onc for checkups). We have contacted Angel Flight in the past. As long as you know when you have to travel they are very accomodating. It is in the rush situations that you may have a problem – they need some advance notice. You can also look into trials at NIH – they reimburse you for travel and will pay for your flights. No insurance is needed there, and the cost of all tests/drugs are covered. However, all followup has to be done there too and may require alot of travel depending on what trial you get into.
On a side note, I have heard wonderful things about Dr. Curti. We are on the east coast, so getting into his trials wasn't reasonable for Dave. But I do know they are doing one with steriotactic radiation prior to IL-2 which is what Dave wanted to do. I spoke with a gentleman by the name of Scott Fountain there. Really easy to get ahold of and answered every question I had. We also worked with Dr. Wong when he was at Roswell (he left about 18 months ago). My husband really liked him and he had a great relationship with him. We were sad to see him leave. Dave seen him while doing Interferon and still stage III.
Do you know which trials are offered here? I would think that an anti-pd-1 would be your next step. Is that what your oncologist is looking into?
If you need info on NIH, you can email me. Others on this board have been treated there (ValinMtl is one). Dave wasn't accepted into anything at that time (he is HLA negative, which is what they were looking for at that time).
Best wishes to you and I hope others can give you more info.
Maria
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- October 24, 2011 at 4:53 pm
Chet, that is great news that you can feel your tumour getting smaller and smaller! I hope it continues! My husband finished ipi on Aug 10 and his most recent scans showed he was a late responder from about 2-3 weeks ago.
Are you looking into another clinical trial just to be ready in case it isn't or stops working? And also are going to be given maintenance doses at all?
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- October 24, 2011 at 4:53 pm
Chet, that is great news that you can feel your tumour getting smaller and smaller! I hope it continues! My husband finished ipi on Aug 10 and his most recent scans showed he was a late responder from about 2-3 weeks ago.
Are you looking into another clinical trial just to be ready in case it isn't or stops working? And also are going to be given maintenance doses at all?
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- October 26, 2011 at 1:26 am
I have to choose between those 4 places I listed to enter into a clinical trial. I wish I could still be given maintenance doses but I'm not insured anymore so clinical trials are my only option as of right now. I hope that your husband continues to respond to Yervoy!
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- October 26, 2011 at 1:26 am
I have to choose between those 4 places I listed to enter into a clinical trial. I wish I could still be given maintenance doses but I'm not insured anymore so clinical trials are my only option as of right now. I hope that your husband continues to respond to Yervoy!
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- October 26, 2011 at 1:26 am
I have to choose between those 4 places I listed to enter into a clinical trial. I wish I could still be given maintenance doses but I'm not insured anymore so clinical trials are my only option as of right now. I hope that your husband continues to respond to Yervoy!
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- October 24, 2011 at 4:53 pm
Chet, that is great news that you can feel your tumour getting smaller and smaller! I hope it continues! My husband finished ipi on Aug 10 and his most recent scans showed he was a late responder from about 2-3 weeks ago.
Are you looking into another clinical trial just to be ready in case it isn't or stops working? And also are going to be given maintenance doses at all?
-
- October 25, 2011 at 12:22 am
I assume your Onc is associated with a hospital. Call that hospital, ask to speak with a social worker. Tell her/him your insurance situation and ask for a consultation. They may be able to help! You'd be amazed what can happen if you get to the right person and that person WANTS to help you.
Mary
Stage 3
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- October 25, 2011 at 12:22 am
I assume your Onc is associated with a hospital. Call that hospital, ask to speak with a social worker. Tell her/him your insurance situation and ask for a consultation. They may be able to help! You'd be amazed what can happen if you get to the right person and that person WANTS to help you.
Mary
Stage 3
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- October 25, 2011 at 12:22 am
I assume your Onc is associated with a hospital. Call that hospital, ask to speak with a social worker. Tell her/him your insurance situation and ask for a consultation. They may be able to help! You'd be amazed what can happen if you get to the right person and that person WANTS to help you.
Mary
Stage 3
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- October 25, 2011 at 3:41 am
When I was diagnosed in June 2011 (Stage IV), I did NOT have insurance when Pennsylvania's governor got rid of it a few months earlier because they wre out of $$. Immediately they assigned a social worker to me that got me started on filing out all the paperwork, etc to help get approved by the hospital/treatment center for their program to help uninsured patients.
Then a month later, we got a call from our local branch that handles the Medicaid, etc for families (which my kids have been on since we're low income), and said that I qualified for Medicaid, and they'd pay all my outstanding bills back to June 1st, and for the future, including any bills that my future insurance (which started July 2011) wouldn't cover.
I HAD NO IDEA I even qualified for Medicaid, they called me when they found out about my case from somewhere, no idea how they found out, but they did!
If you can, just find someone at the treatment center, or call your local office that handles Medicaid/Disability , etc, and go thru them! They had me sign up for Disability (saying I couldn't work again), and it cleared me for the insurance (I don't get payments or anything like that), it's simply for insurance.
I hope the Yervoy works for you! I too, am young as well, 31 years old, and I am just hoping that Yervoy works for me (get my 4th injection Nov.4th!)
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- October 25, 2011 at 3:41 am
When I was diagnosed in June 2011 (Stage IV), I did NOT have insurance when Pennsylvania's governor got rid of it a few months earlier because they wre out of $$. Immediately they assigned a social worker to me that got me started on filing out all the paperwork, etc to help get approved by the hospital/treatment center for their program to help uninsured patients.
Then a month later, we got a call from our local branch that handles the Medicaid, etc for families (which my kids have been on since we're low income), and said that I qualified for Medicaid, and they'd pay all my outstanding bills back to June 1st, and for the future, including any bills that my future insurance (which started July 2011) wouldn't cover.
I HAD NO IDEA I even qualified for Medicaid, they called me when they found out about my case from somewhere, no idea how they found out, but they did!
If you can, just find someone at the treatment center, or call your local office that handles Medicaid/Disability , etc, and go thru them! They had me sign up for Disability (saying I couldn't work again), and it cleared me for the insurance (I don't get payments or anything like that), it's simply for insurance.
I hope the Yervoy works for you! I too, am young as well, 31 years old, and I am just hoping that Yervoy works for me (get my 4th injection Nov.4th!)
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- October 25, 2011 at 12:27 pm
Chet, So glad to see your post, we have been wondering how you were doing! I am always so amazed at the strength and fighting spirit of the young people that post here and are in the midst of the battle. Please know that we are with you along the way, and hope and pray that whatever clinical trial/treatment you tackle next will be your magic bullet! God bless, Valerie (Phil’s wife) -
- October 25, 2011 at 12:27 pm
Chet, So glad to see your post, we have been wondering how you were doing! I am always so amazed at the strength and fighting spirit of the young people that post here and are in the midst of the battle. Please know that we are with you along the way, and hope and pray that whatever clinical trial/treatment you tackle next will be your magic bullet! God bless, Valerie (Phil’s wife) -
- October 25, 2011 at 12:27 pm
Chet, So glad to see your post, we have been wondering how you were doing! I am always so amazed at the strength and fighting spirit of the young people that post here and are in the midst of the battle. Please know that we are with you along the way, and hope and pray that whatever clinical trial/treatment you tackle next will be your magic bullet! God bless, Valerie (Phil’s wife) -
- October 26, 2011 at 1:23 am
I'm receiving disability right now, but I'm really going back and forth on whether I want to go back into the job force or not. I hate depending on people for money and the money that I'm getting is not enough. And what did you mean by it clearing you for the insurance? I'll pray that you're a complete responder to Yervoy!!!
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- October 26, 2011 at 1:23 am
I'm receiving disability right now, but I'm really going back and forth on whether I want to go back into the job force or not. I hate depending on people for money and the money that I'm getting is not enough. And what did you mean by it clearing you for the insurance? I'll pray that you're a complete responder to Yervoy!!!
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- October 26, 2011 at 1:23 am
I'm receiving disability right now, but I'm really going back and forth on whether I want to go back into the job force or not. I hate depending on people for money and the money that I'm getting is not enough. And what did you mean by it clearing you for the insurance? I'll pray that you're a complete responder to Yervoy!!!
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- October 25, 2011 at 3:41 am
When I was diagnosed in June 2011 (Stage IV), I did NOT have insurance when Pennsylvania's governor got rid of it a few months earlier because they wre out of $$. Immediately they assigned a social worker to me that got me started on filing out all the paperwork, etc to help get approved by the hospital/treatment center for their program to help uninsured patients.
Then a month later, we got a call from our local branch that handles the Medicaid, etc for families (which my kids have been on since we're low income), and said that I qualified for Medicaid, and they'd pay all my outstanding bills back to June 1st, and for the future, including any bills that my future insurance (which started July 2011) wouldn't cover.
I HAD NO IDEA I even qualified for Medicaid, they called me when they found out about my case from somewhere, no idea how they found out, but they did!
If you can, just find someone at the treatment center, or call your local office that handles Medicaid/Disability , etc, and go thru them! They had me sign up for Disability (saying I couldn't work again), and it cleared me for the insurance (I don't get payments or anything like that), it's simply for insurance.
I hope the Yervoy works for you! I too, am young as well, 31 years old, and I am just hoping that Yervoy works for me (get my 4th injection Nov.4th!)
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