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Can anyone give me any advice please?

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  • Can anyone give me any advice please?

    Steve is 2 1/2 months post chemo but still does not feel well.
    First off, Steve has not worked this entire year. We applied for Social Security Disability as soon as he was diagnosed. We finally recieved a letter in the mail this week saying he was denied. Steve has been so stressed about having to go back to work knowing it's phyiscally not possible right now. I told him not to worry about that, it will all work out like it has been. But he still was happy. So we decided to make an appeal. I meet with an Attorney today and will start the process next week.
    It really bothers me that there are people out there who are on disabilty and don't really need it. Steve wants to go back to work, but physically can't, and yet hes denied. They only look at the medical reports and see that cancer wise, he is getting better. But they don't seem to care about his current physical abilities.
    Can anyone please tell me what side effects can come from BEP? I have done some research, but someitmes I can't understand all the medical wording.
    Steve thinks maybe he had major nerve damage or something along the lines of that. He still feels horrible. He trys to explain what he feels to me. He tells me all of his joints hurt, as though he aged 50 yrs. He gets major pain behind his knees. His feet hurt so bad as though he just walked across the state. Sometimes when he gets out of bed he almost falls because they hurt so bad. He tells me that his body feels as though its about to give out. He aways twitches, especially when he sleeps. He hasn't had one night where he has slept the whole night through since before he was diagnosed. He has lost some hearing but not much.
    He still has no strength. He gets so tired easily. He tries to do normal daily activities, but gets warn out very quickly.
    We try to explan to our Dr. that Steve still feels week and his body hurts. Our dr. always just says,"well it's because your body isn't used to the activities. You have to rebuild your muscles slowly." But Steve's activities have not changed. He has been doing the same things for months. Nothing has changed.

    I am just getting fustrated with everything

  • #2
    I can't offer any advice in the disability or post-chemo arena, but I am glad you are appealing the denial of benefits. You have been, and continue to be, a rock and a source of strength for Steve.
    Cyber-hug,
    Karen
    Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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    • #3
      I am so sorry you have this added burden. It has been hard with my son also. He had no insurance and no job due to his TC.

      I have to tell you that my son was approved for Social Security Disability within 12 weeks. They actually put a rush on my son because he was so sick when he was diagnosed. I dont understand how Steve was disaproved unless his doctors believe that his treatment will last less than a year or he isnt terminal. I wonder since he is having possible side effects from the chemo you could get him approved now??

      I asked how they decided and they told me that was the way. If someones treatment is expected to last less than a year or they are not terminal they will not qualify for disability.

      I will pray that this burden is relieved for you. God will provide a way for him. If I can help any way please just send a message.

      Pam
      Live Laugh Love
      Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08

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      • #4
        Thank you guys so much.

        After reading through some threads I came across some people talking about neuropathy. What is exactly is that. Does anyone think it's possible Steve has that?

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        • #5
          Peripheral neuropathy is one of the unfortunate side effects of chemotherapy. It is usually caused by cisplatin and vinblastine. Nerve endings get damaged, and it's usually results in pain on the limbs. Peripheral neuropathy can also manifest itself in "ototoxicity", which causes ringing in the ears and possible hearing loss. The extent of neuropathy correlates with the number of cycles of platinum taken, and the effects are usually cumulative. They may take a while to resolve, as well. There are some drugs available that help (lyrica is the only one that comes to mind right now), but they don't always work.
          "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
          11.22.06 -Dx the day before Thanksgiving
          12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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          • #6
            It certainly sounds like neuropathy. My son had it on his feet and fingers. It started about 3 months post chemo. His went away, many others are plagued with it. There are some medicines out there that may help. Steve needs to mention it to his doctor. He also needs some professional help getting his SSI. He should call his local congressman to get the ball rolling (and usually it rolls pretty fast once they are involved). Either that or see a lawyer that specializes in it. It is ridiculous to think you need to get a lawyer involved in something that was developed for people in Steve's situation but, unfortunately, the social security people tend to make you fight for it and most people are denied on the first application. My cousin is blind and he was denied! Needless to say it was sorted out and they ended up paying years in back benefits. Steve can't wait that long. Be persistent and do not accept this denial of benefits. Dianne
            Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
            Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

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            • #7
              Thanks Fed and Dianne.
              The more I read about neurpathy the more I think Steve might have it. We have an appt. this coming week with his Dr. so I am going to mention it to him.
              Steve tell me I shouldn't straight out tell the Dr. I think he has neurpathy and that we should just explain in details everything Steve feels and we don't believe it's just his body recovery. Steve thinks it will sound foolish if we diagnose him ourselves from things I have just read on the internet??

              As for the Disability, I meet with an attorney Friday. We are they are filing an appeal on Monday. Like you said Dianne, it a shame that someone like Steve that needs has to fight for it. But I wouldn't fight if he really didn't need it.
              It makes me so mad when I hear about people abusing medi-cal or disability and yet the people who are trying to use it for the right reasons are denied!

              Comment


              • #8
                Originally posted by Fed
                Peripheral neuropathy is one of the unfortunate side effects of chemotherapy. It is usually caused by cisplatin and vinblastine. Nerve endings get damaged, and it's usually results in pain on the limbs. Peripheral neuropathy can also manifest itself in "ototoxicity", which causes ringing in the ears and possible hearing loss. The extent of neuropathy correlates with the number of cycles of platinum taken, and the effects are usually cumulative. They may take a while to resolve, as well. There are some drugs available that help (lyrica is the only one that comes to mind right now), but they don't always work.
                Cymbalta might help as well.
                I Love My Pack!

                sigpic

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                • #9
                  Originally posted by Mom
                  He also needs some professional help getting his SSI. He should call his local congressman to get the ball rolling (and usually it rolls pretty fast once they are involved).
                  Mom's idea is really good. Part of the job description of a congressman is to assist their constituents with legal matters, and this case is a no-brainer. You can also try to gain momentum if you can enlist your senators to help out. To find out who your rep is, you can go to http://www.house.gov. Call their offices and write a letter through their website (and make sure you give them details to guarantee a prompt response).
                  "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                  11.22.06 -Dx the day before Thanksgiving
                  12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                  Comment


                  • #10
                    Good idea on the congressman and senator contacts! Some of these folks fall over themselves to help (and gain supporters).
                    Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                    • #11
                      Steve is right about being carful with internet information but I see no harm in mentioning it to the doctor. Research on the net is perfectly reasonable as long as you verify the information with a professional.
                      Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                      Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

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                      • #12
                        Russell was denied SS. I was shocked. He is just now starting back to work. He started with school, but was not ready for both. Some are given SS and others are not...seems to be at the whim of who you are sitting in front of. Right now I am working two jobs to keep him going until he is back full steam ahead. Wish I had a magic wand!! Take care, Sharon
                        Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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                        • #13
                          Thanks everyone.
                          I didn't know I was able to get represenative help. I am for sure going to do that in just a bit. I am willing to do anything I can.

                          Sharon thank you for that info in the PM. My Aunt actually recently gave me that book you mentioned. It's pretty good. I haven't gone through it all yet, but I will.

                          Dadmo, you are right. I'm writing down all the pain and discomfort Steve feels so I don't forget to mention anything to the Oncologist this week. After I tell him everything I am going to mention Neurpathy.

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                          • #14
                            Does anyone happen to know if any tests are done to see if in fact you have neurpathy? or do they just guess from the symptons?
                            I would like to know for sure by tests being done or something.

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                            • #15
                              Originally posted by dollfin1204
                              Does anyone happen to know if any tests are done to see if in fact you have neurpathy? or do they just guess from the symptons?
                              I would like to know for sure by tests being done or something.
                              I had no tests done to determine neuropathy. I guess given the small amount of time between 4EP and TIP, when I started to complain, they just went, OK we're pretty sure we know what this is. If you find out about any tests, I'd be interested, although, I'm pretty sure that's what it is in my case. I'm sorry I couldn't help you.
                              I Love My Pack!

                              sigpic

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