My update

just4Brooks
just4Brooks Member Posts: 980 Member
My update, I know I don’t post here very often anymore so I thought I’d give all of you an update on what’s going on. As of 1 ½ years out from my last chemo treatment the cancer has not returned and my CEA count looks great. But I’m still having a very hard time with the nerve damage caused by the Oxaliplatin in my hips, legs, feet, and hands. I also have a bad time with my pooping and going many times a day. But the good news is I did get my disability the first time through and got back pay wired into my account 3 days before Christmas. YA!!! Kind of funny though. We never get a awards letter or anything as of yet just a the funds forwarded into our account. Now I need to file on my 3 kids and have a phone interview on Jan 10th. So it looks like things are going as good as they can get.

Brooks

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Update
    Thanks for the update and it sounds like you are doing relatively well. I'm also having problems with neuropathy and probably always will according to my oncologist. My pooping schedule is another story, one that is rewritten new everyday. I'm never ever sure what to expect. Glad to see your post.

    Kim
  • just4Brooks
    just4Brooks Member Posts: 980 Member

    Update
    Thanks for the update and it sounds like you are doing relatively well. I'm also having problems with neuropathy and probably always will according to my oncologist. My pooping schedule is another story, one that is rewritten new everyday. I'm never ever sure what to expect. Glad to see your post.

    Kim

    Kim
    My pooping schedule is somewhat like your's. Some day's I go 10 times then somedays I cant get off of the toilet. Thank gosh we have 2 bathrooms!!
  • geotina
    geotina Member Posts: 2,111 Member
    Brooks:
    About time you checked in, been wondering about you. Don't say away so long, our newer members need your wisdom and knowledge.

    Good job getting the disability. If you can get the kids covered that should ease up the finances a bit.

    Take care - Tina
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Hey Hey
    You know it's funny...this is a true story...I can't remember how many times I'll think about someone and say they have not checked in for a long time...wonder what has happened or if they just left the building.

    That day or the next day, I'll see a post from them. Too weird....

    I remember you were in Timbuktoo last time you updated....I was just down the road from you in the quaint village of Fukmetoo:)

    It's a small world, isn't it?

    LOL! Brooks:)

    Good seeing you - sorry you're still having so much trouble, but the disabled plan sounds like the plan for you now. Great!

    -Craig
  • steveandnat
    steveandnat Member Posts: 886
    Happy things going good
    I'm really happy that things are going good for you. I know the pooping problems, I try to go to stores where I know where the bathrooms are for you never know when the quick need will arise!! I'm praying everything goes well with you and your family.
    Jeff
  • Mchapp
    Mchapp Member Posts: 95
    Congrats!!
    Brooks,
    We finished up about the same time - and I also just "checked" in this week - I am all thumbs up too -
    Just wanted to find out how you got thru disability....I have the neuropathy in the feet, hand are bothered by the cold - and my hips/back are stiff after a long day....I would love to find out more - and who to begin this process with - any info would be appreciated!

    Glad you are A-OKAY!!!!
    Happy Holidays and Happy 2012~
    Michelle
  • Eltina21
    Eltina21 Member Posts: 173 Member
    Update
    Great news regarding your update. It is an inspiration. This site provides so much information. I thought that I was the only one going through neuropathy. The feelings in my hands returned somewhat, however, my grandchildren now button for me. I can button but it takes a lot longer. As for my feet, I still have the numbness and tingling. I make sure that I wear shoes with good soles (just in case I walk on something and not feel it right away.)I am also glad that you got your disability, the first time trying. The real reason many people are turned down for Social Security Disability, is not because they aren't disabled, all of the necessary medical information is not sent in from the medical sources, that we need. I say "we" because I have been a disability examiner for the last 31 years. When I received my diagnosis it was kind of hard because I knew exactly what the doctors were saying to me. The good news is I have been cancer free for a year and two months. I pray to stay that way. By the way, you can call your local Social Security field office and they can make sure that you receive a copy of your award letter for it is kept in your file. As for the poop situation, my son is helping me to change my diet and eat more natural foods. He's a vegetarian. I am hoping that it helps. Have a blessed, healthy and wonderful new year.

    Peace and Blessings,
    Karen
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Good!
    I love it when things go well for you, Brooks!

    *hugs*
    Gail
  • iluvmms
    iluvmms Member Posts: 134 Member
    tootsie1 said:

    Good!
    I love it when things go well for you, Brooks!

    *hugs*
    Gail

    Brooks
    I am also experincing alot of pain from the OXI. Mine is feet, hip and shoulders and neck. Is there anything you are doing to help it. I cant seem to get under control. Especially in my neck and shoulders. Feet are bad too, but I can't seem to get my GP to acknowlegde anything about the OXI. Any suggestions?
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    Glad to hear
    Glad to hear from you and that disability went through w/out a problem! And ofc no cancer is great too!
    As for the pooping. I had problems too. Now me and my ileostomy are living happily very after. I was so miserable. I have a life now. Here is to hoping you get more of your life back and giving less to the ceramic throne.
  • westie66
    westie66 Member Posts: 642

    Glad to hear
    Glad to hear from you and that disability went through w/out a problem! And ofc no cancer is great too!
    As for the pooping. I had problems too. Now me and my ileostomy are living happily very after. I was so miserable. I have a life now. Here is to hoping you get more of your life back and giving less to the ceramic throne.

    Neuropathy and Oxaliplatin
    Hi Brooks: There have been lots of discussions about neuropathy caused by oxaliplatin on this board. I had 12 treatments of oxaliplatin and never really had any problems. I think because I daily took the following: alpha lipoic acid tablets (good quality) 3 times a day, 5 grams L-Glutamine Fermented in juice once per day, Vit B6 once a day, and calcium/magnesium once a day. These are things recommended for fibromyelgia, another "nerve" disease.
    Cheryl
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    geotina said:

    Brooks:
    About time you checked in, been wondering about you. Don't say away so long, our newer members need your wisdom and knowledge.

    Good job getting the disability. If you can get the kids covered that should ease up the finances a bit.

    Take care - Tina

    Tina
    LOL@ my wisdom and knowledge
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    Mchapp said:

    Congrats!!
    Brooks,
    We finished up about the same time - and I also just "checked" in this week - I am all thumbs up too -
    Just wanted to find out how you got thru disability....I have the neuropathy in the feet, hand are bothered by the cold - and my hips/back are stiff after a long day....I would love to find out more - and who to begin this process with - any info would be appreciated!

    Glad you are A-OKAY!!!!
    Happy Holidays and Happy 2012~
    Michelle

    Michelle
    I was waiting to get better so I can go back to work but it never came. My neuropathy and pain is really bad and I have the pooping thing going. I just went on line and filled it out with the my wife. I also kept records of all my surg's, hospital stays and doctor visits sence my dx in 2009 so having all the dates was a big help.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    iluvmms said:

    Brooks
    I am also experincing alot of pain from the OXI. Mine is feet, hip and shoulders and neck. Is there anything you are doing to help it. I cant seem to get under control. Especially in my neck and shoulders. Feet are bad too, but I can't seem to get my GP to acknowlegde anything about the OXI. Any suggestions?

    iluvmms
    I'm on a pain patch and pain meds. The patch seems to keep the pain under a 5 or 6 then I take the oxy's when it really gets bad. Sometimes I hurt so bad I could just jump out a window!!
    Copy information from on line and bring it to him and tell him it's not right for you to live in 24 hr pain and it that doesnt work get a new doc and go see a pain doctor too.
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    brooks
    it's been a while ;-) bout time you posted mr! great news on your disability. hope you find something that can help with the damage oxy has caused :-(