22 replies to this topic

[teb]

I haven't been able to find any recent conversations about this topic! How are people handling working and gleevec?

[car-guy]

I am on Tasigna,also have degenerative disc disease, combination of both caused me to early retirement also applying for disability. I was a 30+ year auto mechanic, both side affects and pain issues made it  impossible to complete a full day of work,tried to go part-time and was not recieved well.. started application process 7-8 month's ago. process is ongoing. i just turned 50 in september. i sure hope others check in about this issue. would like to hear  how things were settled.

[teb]

Thanks for responding to me, I do hope all goes well with  your disability application. I did apply a few months back and I am in waiting mode. I hope others do check in about this issue, it is so unsettling and I would like to hear how others are handling work issues.

[Susan61]

Hi:  Disability can be a long drawn out process.  The best thing to do is use a lawyer to apply.  One that only gets paid if he wins your case, and then he gets a percentage of what he wins for you in your claim.  In most cases people get refused the first time they apply.  I do not know why, but it seems everyone you talk to gets denied first time around.

When I was diagnosed with my CML, I was not on a TKI drug yet and the treatment was wiping me out.  I could not perform my job the way I should, and my Oncologist actually told me if I felt that I could not work to apply for Disability.  He said nobody can tell you how you feel.  I was denied the first time.  I also have Degenerative Disc Disease, and it has gotten really bad as I get older.  I know that feeling also.  I had to go to a Social Security Doctor for examination, and that was a mess without going into detail, and I was refused.  Then once I obtained a SS Lawyer it finally went through.  It took me over 2 years, and they had to pay me al back money from the day I first applied.

     Now that is just my case.  Everyone is different.  If you cannot function on a job, and suffering with numerous side effects etc. then you might get approved quicker.  Just follow through once you apply, or you just get mixed into the shuffle of everyone else who applied.  I hope this helps somewhat.

Susan

[Antilogical]

I have been taking Gleevec since March.  Here's my experience:  The first couple of weeks weren't bad; then the side effects quickly ramped up.  I had joint pain on top of the already severe arthritis pain in my knees and hands.  I had a lot of edema.  Because of the swelling, I had trouble wearing shoes, could not wear compression hose (arthritis in my hands prevented me from pulling them up), and my glasses squeezed my pudgy face!  GI issues, nausea, fatigue, & rashes also had me feeling incredibly lousy.  I felt great when I was walking around oblivious to the fact that I had a fatal disease!  Now that I was in treatment, I could hardly function.

I discussed the situation with 3 people:

     (1) ONCOLOGIST:  He was really pleased with my labs, & did not want to change the dosage of Gleevec.  He did offer a prescription for the nausea, however.

     (2) FAMILY DOCTOR:  He reviewed my prescriptions, & changed the dosages of some, particularly for blood pressure meds.  Once they were lowered, the edema decreased dramatically, among other things.  Now I don't feel nearly as bad.  Shoes fit, I can move around better, I can breathe.  A lot of other side effects have greatly reduced over time, too.

     (3) THE BOSS:  I let him know about my situation, & he was more than willing to accommodate me.  He gave the green light to working from home when I needed to, & working a more conservative schedule, as well.

Discussing my issues with the family doctor was by far the best thing I did.  Within about 2 weeks, I was feeling better.  Not great, but better.  Good luck to you.  I hope you, too can get a little relief while you're awaiting consideration for disability.

[pammartin]

Hi Susan & All,

Just a quick note, I cannot confirm this but a few people have told me that if you go for disability, they no longer pay back from the date you apply.  I would research that concept, in the past a person who was approved received a nice chunk of money when the claim finally was approved, now you recieve benefits from approval.  FYI

Pam

[SunNsand]

I take Gleevec and am on disability also. It took me two yrs and an attorney. I was dx with CML Jan. 2009. I stopped working July 2009. My plan was to take several mths., up to a year to adjust to the new me, and additional health problems, then go back to work. During 2010 it was clear I wasn't going to make it back to work so I applied for disability by myself. I was denied, I appealed by myself and was turned down again. I retained a lawyer that wouldn't charge me unless I won. I won my case last summer 2012. The judge decided I became disabled when I left my job in 2009, so I did get a check for back pay that covered those years. My lawyer got a chunk out of that check. If you apply and get denied, don't stop pushing your case. I was told that once you apply for disability, you can never apply again for that same reason.

[Susan61]

HI:  Your story is very similar to mine, and that is good information regarding that If you do not keep pushing for the Disability and let it just drop that you cannot re-apply for the same Diagnosis.  I hope a lot of people read your post.

They change their rules all the time.  I did try to work when first diagnosed, but the job was just too stressful and I was on my feet all day running from 2 buildings that we had.  I was running a fever, and felt like I had weights in my legs when I was doing the shots of Interferon and Ara-C.  Plus working in the medical field, I was near sick people all day long.  Thats great if anyone can work from home, and schedule their own pace to get the work done.  I wish I had that opportunity back then.

     We all have to do whatever we need to do, because like I said nobody can tell you how you feel or what is going on in your body.

    You have to list every single thing that is going on that keeps you from being able to perform your job, because I know with me they picked everything apart.  The guy who did my exam was a total jerk.  He never even wrote down that I had CML.  He stressed the fact that I had bad Arthritis, but being I did not need a cane to walk he denied my claim.  He had me doing exercises in the office to test my mobility.

   The other thing was that I wrote up the whole report on myself and gave it to the lawyer so he could get the information he needed before he submitted his letter to Disability.  Thinking he would write it, and just add what I gave him to his report. He submitted word for word what I wrote on his letterhead, and I was accepted for Disability based on that.  They gave me a copy when I was approved, and I was shocked.  Then this lawyer got a percentage of my claim.  Make sure you do everything in detail, and keep copies of everything you submit also.

   Good Luck

Susan

[WoofWoof]

I applied for and got disability approved within a month. Just called the local SS office, filled out the forms, had a phone interview and got the approval notice two weeks later.

[Susan61]

Hi:  How long ago did you do your application?  Mine was back in 1998, where I went on Temporary State disability first, then it went into applying for the SS Disability.  Things change, and it all depends on who handles your case.  That was great that you got it through so quick. 

Susan

[felursus]

I have AML not CML, and I was 66 when I was diagnosed, so I could get Social Security - no need to apply for Disabilty for myself (although I was still working until shortly before my diagnosis.  However, I'm a PT, and I've filled out the application on behalf of a friend.  The friend's issue was back pain - for which she's had several surgeries/procedures.  Back pain is one of the harder things to "prove", because MRIs are unreliable "proof" of pain/disability,  Some people have disabling pain with negative MRIs and others, the reverse.  What matters is how well you document how your illness and the effects of medications have  impaired your ability to do your particular job.  Wriiting good, consise essays (they don't give you too much room/number of words).  If you aren't good at writing, get help.  Know what the requirements of your particular job are: they ask how much time you spend sitting, kneeling, crawling, stooping.  Meds may also affect your ability to concentrate, cause visual problems - and obviously, both the disease and the meds can affect your abilty to concentrate and your endurance - amongst other issues.  Some issues may fluctuate and cause uneven performance ability. 

It stinks for someone to have to pay out for legal assistance..  It may be fair to pay a fee to someone who is skilled at filling out the form (I spent HOURS doing it for my friend - whose application was successful, btw), but excessive charges are just immoral.  The whole thing can be done online.  They used to give only 2 days to complete your part of the application (your MD(s) need to complete a portion as well), but now you have more time.  It helps to have all your meds around - you have to list them - and dates for diagnosis/diagnoses and procedures, etc.

Good luck to all of you in the application process. 

Karen

[teb]

Hi  how long ago did you did your application? Did yiunhave any other issues besides begin diagnosed with CML?

[sarahboxley]

I was just diagnosed 9/1/12 with CML, and I applied for disability this fall. I found out last week that I was denied. My husband is a financial advisor and employs with someone who used to work in the SS office to help clients navigate Social Security, potential disability, etc. That employee told me to expect to be denied. Definitely the first time and potentially forever. Because we have "chronic" in the disease name, we are not considered "sick enough". I am planning to appeal and will keep you posted. We have started to explore a SS attorney, so I am glad to hear that some have had success in that avenue!

[teb]

I'm sorry you were denied. This info is so disturbing. How someone can make the decision that we aren't sick enough   This really is unbelievable. Let them walk in our shoes for a few days then maybe they would change there minds.  Good luck going forward. I did apply for ss disability and I did hire a  lawyer. It's been few months I haven't heard back yet.

[Susan61]

Hi:  They always deny the first application in most cases.  You have to be sure to let them know of all the side effects that you have that keeps you from being able to perform your job.  Its not the disease as much as what we take to keep us stable.  I do not think they understand what people go through with these drugs.  In some cases, it can cause loss of memory, joint pain, bad edema etc.  In most cases getting a lawyer who deals with SS Disability all the time can help you.  Its worth the fee they get which is taken from your first check if you win the case.

    Some people suffer with a lot of serious things, and others feel fine.  Nobody can tell you how you feel.  My own Oncologist told me that when I had to stop work.

Susan

[Badger]

I have been a quadriplegic for thirty years and have had cml since August of 2009. I was approved for long tem disability in December--for two months! They want to review my situation after two months. Their reasoning is that, since I was able to work fulltime even in this conditiion, there isn't any reason I shoudn't be able to continue doing so . I always thought if I applied for disability that no one had a better argument th.an me. WRONG!

[felursus]

Around 1990 (so before home computers were common) I had a patient with a genetic disease that causes joints to "disolve".  She had bilateral ankle fusions and knee fusions, multiple spinal level fusions, and hip replacements - 3x's on one side and 2x's on the other.  She came into the hospital where I was working with a swallowing problem, and had to have the first two cervical vertebrae fused, but she had already suffered enough nerve damage to require a permanent feeding tube - but fortunately not a ventilator as well..  She was able to transfer independently from a hospital bed to a motorized wheelchair and v.v,, and she could walk about 20 feet with a walker - which gave her bathroom access - but not alone, because her balance was poor, and if she fell, she'd go over like a tree and would never be able to get up.  The most functional things she could do was transfer in/out of bed  and sit (her legs were straight out because of the knee and ankle fusions).  Today, one might say she could be trained to do some kind of computer work, but not then.  She required a 24-hour home attendant for safety.  She was up for re-certification when she came into the hospital, and they denied her.  Without the disability she couldn't go home safely, so we had to file an appeal.  It took a whole month - and Medicare was going to have to pick up the hospital tab.  Ridiculous!!!!!  But they are ALWAYS ridiculous!

I think the key is very good documentation and essay writing from both the applicant (or whoever is helping) and from the MD who fills out that portion of the application.  The drug(s) you take should also come with and insert that lists the potential side-effects which would make it impossible for an applicant to continue to perform his/her job, and the MD note should confirm that the applicant is, indeed, suffering from those side-effects.  The MD must back up the side-effect complaint, because not every patient develps every listed potential side-effect and because the ability to perform different jobs will vary from patient to patient.

Karen

[felursus]

Found this website.  Maybe they offer some useful advice/help.

https://www.disabili...galresource.cfm

Karen

[JaniePoo2U]

I have been on 300mg of Gleevec since my diagnosis in April of 2010.  I haven't had any side effects thus far and I have been in remission since December of 2010.  Just went yesterday for my 4 mos. PCR test and will get results for it next week.  Staying positive and hoping for negative results - 0% leukemia cells.

[jagladysk8]

I have plasma cell leukemia,diagnosed in June 2012 and applied for disability back in July 2012 and got approved in Dec. 2012. They have a 5 month waiting period before you can receive benefits, you receive first check on the 6th month from approval. You do not receive back pay anylonger, so you are correct about that. You also have tobe on disability for 2 years before you can get on Medicare.