Pancreatic Cancer - Please help us!

ohiojen

I really hope someone out there can give me and my family some much needed help and advice. On August 24th, my 56 year old father was diagnosed with pancreatic cancer. It came as a complete shock to my entire family. We thought he was going into surgery to have a cyst in his pancreas drained and that after that all would be well. Obviously, to our horrifying shock, it was not a cyst, it was a tumor. My dad is now enrolled in a clinical study at the Ohio State University James Cancer Hospital under going daily treatments. The hope is to have surgery mid November. Treatments seem to be going well but there are other hurdles that we cannot seem to cross. One, my dad is so sad and sick that it is breaking my heart. My parents are staying in Columbus with us while his treatments are going on. He is barely talking and eating even less. I know this time is difficult for him so I feel selfish in saying that I am struggling with how he is acting. It is to the point where yesterday I actually felt anger towards him. I know it is wrong but I cannot help it. I am having difficutly seeing him this way because it is not "my dad." We have tried everything to lift his spirits but nothing seems to really be working. Can anyone please give me advice on how or what I should do to try to make this ugly situation somewhat better for him, my mom, and the rest of the family. My next question has to do with getting social security disability. The doctor advised my mom that she should apply for this and she did but was denied. She was told that in order to get the benefits that they would first have to deplete their IRA's as well as retirement. I do not know how this is fair. If they do that how are they (or my mom) supposed to ever retire if they delete their funds at 56? It is frustrating to think that they work hard to earn a living, pay their taxes, and support his country but when they need help they are denied. Can anyone please point us in the right direction to get them approved?
Fianlly, I am looking for any thread of hope that my dad can beat this. As with every cancer patient, he has so much to live for. I am one of six kids, he has 8 grandchildren(3 of which are 4 months old or less) and my first baby on the way. We all need my dad more than ever. I do not want all of these kids growing up without the honor of knowing how amazing he really is. Please send me any stories or successes you or your loved ones have had at beating this ugly disease. I need reassurance that together we can beat this!

nancyj_pa

your dad
I am so sorry your family has to go through this nightmare. Contact PANCAN and the Johns Hopkins pancreatic cancer discussion board for help. Just Google and you should find the link. They have been very helpful to me. My husband was diagnosed with PC earlier this year. He went to our primary care physician for a cough, tests were run, and his liver enzymes were high. He had a lot of testing done but nothing definitely showed a tumor. But the experts were sure it was PC, and a Whipple was performed April 29 for adenocarcinoma of the head of the pancreas. There are different kinds of PC. You have to find out the exact kind for the right treatment and see if it has spread. My husband's did not spread, it was only 1.3 cm in size, and the doctors think they got it all with the surgery. He is following up with chemo and radiation to prevent a recurrence. His prognosis seems good at this time. He got through the surgery O.K. It was extremely difficult. Depression is common in PC patients - his doctor should be told so he can be prescribed something to help. Also, if you check the Johns Hopkins site and do some searching, you can find others who are receiving SS disability. I myself never heard of having to deplete IRA's, etc. in order to qualify. I heard you can submit an application online at the SSA website. It takes about 6 months for approval. If your dad qualifies for the surgery, there is a chance of a cure. If not, chemo can prolong his life and his quality of life. Do not give up hope. Things seem bleak, but hopefully they will improve for your family soon. Nancy

Tim_PM

disability Social security
I had chronic pancreatitis, and took a disability retirement from my federal job. I also applied for and was granted disability social security. This was several years before I was diagnosed with pancreatic cancer. It seems like your father can probably apply for and get disability social security right now. That is a pretty good deal, because the payment isn't reduced due to being underage. You mother can apply on her own, and your dad's social security eligible wages, but she is not disabled if I read this right, so she would have to take the benefit reduction on her social security benefit. My wife chose to delay taking her benefit because the reduction was so substantial (she would have been collecting about 7 years prematurely.) Now we are in a little different situation. I have been retired under a disability for about 7 years now, collecting my full benefit as if I was 66. My wife is now 64, and the penalty for early collection of SSN is considerably less. My wife will get a benefit based on her SSN eligible earnings, and an additional benefit by applying against my SSN earnings. She gets additional Soc Sec benefits based on my earnings because I have been the primary wage earner throughout our married life. All 40 wonderful years of it. There was never any suggestion that we had to spend down our retirement accounts in order to apply for SSN. I think that is very bad information, and if it came from a SSN agent, I would investigate what they were telling you, and if it is truly false information as I suspect it is, you should let someone know about this misinformation. I can't give you much encouragement about beating this horrid disease. I was diagnosed with Stage IV pan can, and have about a year to live (on a statistical basis). I expect to squeak a little more out of it since I am in pretty good health other than for the pancreas problems. It does sound like you father's tumor is operable, and that can add additional years to his life expectancy. that is some hope to hang on to.
But I know that I had a big problem with people trying to offer me encouragement that had no foundation. I have been told by the doctors that are in the know, that I shouldn't be looking for a miracle cure, and since I have accepted that, it is much easier to plan for the future or what is left of it. I know I have a limited time to make memories for my wife and friends, but I will do the best I can.
For a more positive outlook in living with pan can, read the pages from the people that have operable cancer. They have a much better idea and likely more possitive idea of what your father can expect than I do.
Best wishes, and prayers to yourself, your father and your family.
Sincerely,
Tim

ohiojen

nancyj_pa said:

your dad
I am so sorry your family has to go through this nightmare. Contact PANCAN and the Johns Hopkins pancreatic cancer discussion board for help. Just Google and you should find the link. They have been very helpful to me. My husband was diagnosed with PC earlier this year. He went to our primary care physician for a cough, tests were run, and his liver enzymes were high. He had a lot of testing done but nothing definitely showed a tumor. But the experts were sure it was PC, and a Whipple was performed April 29 for adenocarcinoma of the head of the pancreas. There are different kinds of PC. You have to find out the exact kind for the right treatment and see if it has spread. My husband's did not spread, it was only 1.3 cm in size, and the doctors think they got it all with the surgery. He is following up with chemo and radiation to prevent a recurrence. His prognosis seems good at this time. He got through the surgery O.K. It was extremely difficult. Depression is common in PC patients - his doctor should be told so he can be prescribed something to help. Also, if you check the Johns Hopkins site and do some searching, you can find others who are receiving SS disability. I myself never heard of having to deplete IRA's, etc. in order to qualify. I heard you can submit an application online at the SSA website. It takes about 6 months for approval. If your dad qualifies for the surgery, there is a chance of a cure. If not, chemo can prolong his life and his quality of life. Do not give up hope. Things seem bleak, but hopefully they will improve for your family soon. Nancy

Thank You Nancy!
Nancy,
Thank you so much for your insight. I will be sure to share this with my family. I will also be sure to look into the pancreatic cancer discussion board at Johns Hopkins. The more input I can get from others who have dealt with this the better. I wish you and your husband the best!
Jen

ohiojen

Tim_PM said:

disability Social security
I had chronic pancreatitis, and took a disability retirement from my federal job. I also applied for and was granted disability social security. This was several years before I was diagnosed with pancreatic cancer. It seems like your father can probably apply for and get disability social security right now. That is a pretty good deal, because the payment isn't reduced due to being underage. You mother can apply on her own, and your dad's social security eligible wages, but she is not disabled if I read this right, so she would have to take the benefit reduction on her social security benefit. My wife chose to delay taking her benefit because the reduction was so substantial (she would have been collecting about 7 years prematurely.) Now we are in a little different situation. I have been retired under a disability for about 7 years now, collecting my full benefit as if I was 66. My wife is now 64, and the penalty for early collection of SSN is considerably less. My wife will get a benefit based on her SSN eligible earnings, and an additional benefit by applying against my SSN earnings. She gets additional Soc Sec benefits based on my earnings because I have been the primary wage earner throughout our married life. All 40 wonderful years of it. There was never any suggestion that we had to spend down our retirement accounts in order to apply for SSN. I think that is very bad information, and if it came from a SSN agent, I would investigate what they were telling you, and if it is truly false information as I suspect it is, you should let someone know about this misinformation. I can't give you much encouragement about beating this horrid disease. I was diagnosed with Stage IV pan can, and have about a year to live (on a statistical basis). I expect to squeak a little more out of it since I am in pretty good health other than for the pancreas problems. It does sound like you father's tumor is operable, and that can add additional years to his life expectancy. that is some hope to hang on to.
But I know that I had a big problem with people trying to offer me encouragement that had no foundation. I have been told by the doctors that are in the know, that I shouldn't be looking for a miracle cure, and since I have accepted that, it is much easier to plan for the future or what is left of it. I know I have a limited time to make memories for my wife and friends, but I will do the best I can.
For a more positive outlook in living with pan can, read the pages from the people that have operable cancer. They have a much better idea and likely more possitive idea of what your father can expect than I do.
Best wishes, and prayers to yourself, your father and your family.
Sincerely,
Tim

SS Disability Advice
Tim,
First I want to congratulate you and your wife on 40 years of marriage. I love hearing that there are people out there that really are happily ever after. My hat goes off to you both.
I also would like to thank you for your advice. I will definitely look into this more. I am encouraging my mother to get an attorney that specializes is social security disability because is appears that most of them will only charge a minimal fee if they are not successful in helping you win. I am happy to hear that you think the information about first using the retirement savings is false. It did not seem right to me either. Afterall, if my father does not beat this, my mother will still need to be taken care of.
Finally, I wanted to tell you that although I do not know you, you seem like a very strong man. I respect you for the fact that you are able to take this for what it is and make the most of what you have left. If it happens that my dad has no chance of making it, I can only hope that he and the rest of my family can be as strong as you and take advantage of every remaining minute and memory that we will have together.
I will be sure you think of you and your family in my prayers.
Warmest Regards,
Jen

Bartrip_Devon

ohiojen said:

SS Disability Advice
Tim,
First I want to congratulate you and your wife on 40 years of marriage. I love hearing that there are people out there that really are happily ever after. My hat goes off to you both.
I also would like to thank you for your advice. I will definitely look into this more. I am encouraging my mother to get an attorney that specializes is social security disability because is appears that most of them will only charge a minimal fee if they are not successful in helping you win. I am happy to hear that you think the information about first using the retirement savings is false. It did not seem right to me either. Afterall, if my father does not beat this, my mother will still need to be taken care of.
Finally, I wanted to tell you that although I do not know you, you seem like a very strong man. I respect you for the fact that you are able to take this for what it is and make the most of what you have left. If it happens that my dad has no chance of making it, I can only hope that he and the rest of my family can be as strong as you and take advantage of every remaining minute and memory that we will have together.
I will be sure you think of you and your family in my prayers.
Warmest Regards,
Jen

Pancreatic Cancer
Hiya
I been logging on the to pancreatic cancer survivors bit for a while, but thought this may be a bit more helpful in getting advice etc.

My husband was diagnosed with PC in Feb earlier this year, had major surgery in March to re-plumb his insides to avoid the tumour in his bile duct/pancreas and to ease the jaundice. He has been on chemo for nearly 6 months now to which he has no side effects, apart from being a bit tired. He has one more session next week and then he will see the Consultant, probably have a CT scan, see the consultant again with a view to having more chemo, if he wants it. He is on IV chemo once a week and also tablet form at home.

The only advice I can offer to you others out there is to be strong and get all your affairs in order. I know it is hard because I have sort of done it. It was difficult in the early stages because we were in limbo, and although my husband (48) has been told of his diagnosis, he has chosen not to really talk about it or tell his family. He has decided to get on with his life, the way he wants to, and spend valued time with out daughter (6). I personally feel that with him being like this and being bloody minded, he will hopefully enjoy what life he has left and hopefully out-do the consultant/surgeon's original diagnosis (6-12m).

I had help filling out some Disability Living Allowance forms from a family friend, which was really valuable. The worst thing was not knowing where to go to get help in the first place - nobody was really saying where to start etc.