Has anyone gotten SSDI with a dx of CML? I've read that CML in the blast phase is a automatic approval. But not in the 1st phase. I know people receiving disability for chronic fatigue and CML is what I would say "the worst chronic fatique" Being an oral chemo the rest of my life isn't exactly like taking a daily vitamin....just saying!
Posted 04 May 2011 - 09:20 PM
I was finally approved for SSDI and I am in the chronic phase. I was denied (everyone did tell me you are never approved the first time ) the first time I applied but then I tried again... I took it a step further the second time around and had written letters to my state senators and a congress woman too. I did feel that that helped my case as I didn't have any help from an attorney. They wouldn't even take my case. I can't remember all the details of why they wouldn't but regardless...all I knew was I wasn't going to take "no" for an answer. I was determined to get approved. I also have Chronic Hep B and have to be on medication for that in order for my liver to function properly. Anyway... don't give up and be relentless. Make sure you document all of whats interfering with your quality of life and how it's preventing you from working. There will be interviews and letters from your doctor that you'll need supporting your case. I hope that helps a bit... Good Luck!
Posted 19 May 2011 - 05:40 PM
I was diagnosised in April 2006 (just had turned 50 in December) and quit working for myself within 2 months. I wasn't mentally able to continue with the stress of self-employment. I went to work for a friend of mine and within a year had to quit because of all of the constant and severe side effects I had on Gleevec: fatigue, heartburn, stomach pain, nausea, body cramps, depression. I applied for SSD June 2007 and was denied, the first time everyone is. I notified SSA that I was going to move to the next step with an appeal and then hired a lawyer, one who does nothing but disability claims. Almost a year later after the hearing, I was approved. I'm still in the chronic phase. SSD is back paid to six months after you stopped working, in other words, you are eligible for SSD for the first 6 months after stopping work. Your SSD payments are based on how much a person has contributed into SS during their working life.
I worked my entire life and it was difficult to stop working even though I wasn't very productive anymore. I feel guilty every once in a while, usually when I am having a "good day." But then I remembered and experienced another 'bad day" and I knew I did the right thing. When Gleevec stopped working for me last May I was put on Sprycel and most of the severe side effects were gone. I still have fatigue, but it isn't 24/7 nor as severe, and I figure after 4 years of not doing anything, I am just out of shape. However, I know that I cannot go back to the stress of work, I'm mentally not capable, and physically have no endurance.
I know there was a discussion on the use of the word "cancer" with regards to CML. At first I thought CML was a cancer, but after researching it thoroughly I have come to believe that it is not a cancer. It is a genetic mutation caused by radionactivity; our DNA has been skewed. Chromosones 9 and 22 have swapped their tails, the mutation, and because of that our body produces a protein that causes an over-production of white blood cells. The daily "chemo" we take stops that protein from being created, thus our white blood cells are controlled. Cancer is a group of diseases characterized by uncontrolled cell division leading to growth of abnormal tissue. It is believed that cancers arise from both genetic and environmental factors that lead to aberrant growth regulation of a stem cell population, or by the dedifferentiation of more mature cell types. The uncontrolled and often rapid proliferation of cells can lead to either a benign tumor or a maligant tumor (cancer). Benign tumors do not spread to other parts of the body or invade other tissues, and they are rarely a threat to life. Malignant tumors can invade other organs, spread to distant locations (metastasize) and become life threatening. You can see there is a great difference between CML and a Cancer.
I hope this helps. Take Care!
Posted 20 May 2011 - 07:54 AM
Thank you so much Denise! Everything that you said about feeling guilty for not working is so me. I have been working 2 jobs for many years. I did apply for disability this week and pretty much expect to be denied but I have spoken with an attorney. I too am 50 yrs old. It has been 3 months since DX. I am a Realtor which is a very legal process that I cannot or should not be handling. My memory is so bad now. I was also working for my husbands and I's electrical business that we have recently shut down. I could not handle the stress of that either.
The scary part of this is not working and gambling that I will get the disability. Then if I don't, I've got to start over as a Realtor (in a bad economy) or get a new line of employment at 51 yrs old. I am praying that I am making the right decission. I also feel guilty not bringing in the bacon and dumping all of this on my husband. I just pray that the system of disability doesn't fail me. I know people on it that have no business collecting. Thanks again!
Posted 20 May 2011 - 10:59 AM
I was diagnosed in March of 2009 and forced to resign as a part time secretary the end of 2009 so I waited couple months then applied. One kind I didn't have enough credits and the other my husband makes to much money. I called a lawyer and he wouldn't take my case cause he said here in PA it's true. I was a secretary in a school so I had summers off with no pay and I lost credits cause of that. He said he has clients that actually seperated and then the sick one got everything. I know people in my small town that get it for things like bad knees but they walk all over town cause they don't have a car. It really doesn't make sense to me and I also feel guilty not being able to work. My first year was awful with a bad oncologist and now i have anxiety really bad and the Gleevec has always affected my legs really bad and the fatigue. My insides feel like they are shaking and have to take xanax now. I now have a wonderful onc. who I started seeing in April of last year and by July he had me in remission and been that way ever since, it's just he side effects. He said I might have to be on xanax for the rest of my life which I don't like!!!! But if any one has any suggestions on getting any financial help I would appreciate to hear it also cause going from 2 incomes to 1 is hard with more money going out for co-pays. I just don't get the disability stuff, it's not fair!!!!
Posted 30 May 2011 - 08:59 PM
Hello, I beg to differ with Denny, as CML as well as Myeloproliferative diseases are "Blood Cancers" If you look at the NIH, LLS, and Cancer.gov sites under CML or myeloproliferative diseases it gives a clear definition that what we have is Blood Cancer. The differences are that these cancers dont usually create tumors or metastisize like other cancers do. CML is cancer of the white blood cells. Some don't like to use the word, so they say it's a hemotological malignancy, witch is blood cancer. Sorry, but it is what it is.
As far as recieving SSD , I was denied once then found a SS lawyer group that takes nothing till you get approved. If you send the lawyers copies of the groups page that states we have a blood cancer they then got me approved in only 5 months. The fatigue and all the infusions/ transfusions, and tests made it impossible to keep working my job. I had worked for 45 years and had never been ill till this happened, so I do understand how your feeling. Pat, Oregon 58 , diagnosed 2007
Posted 31 May 2011 - 09:25 AM
What do you mean by "groups pages"? I totally agree with you that leukemia is a cancer. I don't get why it wouldn't be. Saying that it isn't doesn't change the disease. I have applied at my local level and have already heard from the state. They are gathering information. I was told that since I am going to MD Anderson, that they are very fast in returning records. I am only 4 months into this and haven't had any blood transfussions. But I can't imagine having to work on a daily basis. I've been in bed for 3 days with fever. I too have always worked. I'm not looking for a easy ride or a easy way out. It's not like SSI income makes us rich....right? Thanks Patti!
Posted 31 May 2011 - 03:34 PM
Teresa: What I mean by group pages, is go to the LLS, NIH, and Cancer.gov, sites and type in myeloproliferative disease or CMl, and it gives you the description of each as blood cancers. That's what I sent to my lawyer and with a cancer diagnosis social security can be awarded. I will try and e-mail you those. Patti
Posted 31 May 2011 - 03:39 PM
Those who have been approved for disability, I am curious -- how are you handling health insurance. Are you covered by a spouse's employer's plan? I am single and am scared to death that I won't be able to work and keep my insurance.
Posted 31 May 2011 - 04:22 PM
Nathaliece: When I was first diagnosed I had "No Insurance" no onc/hem would even see me. I was really scared. I contacted the patient financial help in the busness dept. at a major cancer center, and they sent me papers to fill out and return. Our income was low enough to qualify, so I was able to get help. The paperwork is daunting, but take your time filling it out and then you will have to call every 6 months to re-apply. So keep copies for your own records so you'll know what they will ask for the next time. Also if you are going to a major cancer center, you can ask the nurse or social worker if they have "An American Cancer Society Patient navigator. They can be a huge help to us too. Hope this helps some? Patti Oregon 58 Et now PV
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