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My update

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

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

Annabelle41415's picture
Annabelle41415
Posts: 6151
Joined: Feb 2009

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's picture
just4Brooks
Posts: 988
Joined: Jun 2009

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's picture
geotina
Posts: 2117
Joined: Oct 2009

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

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

LOL@ my wisdom and knowledge

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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's picture
steveandnat
Posts: 887
Joined: Sep 2011

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's picture
Mchapp
Posts: 96
Joined: Jul 2009

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

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

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.

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

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's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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

*hugs*
Gail

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

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?

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

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.

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

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's picture
westie66
Posts: 642
Joined: Jun 2010

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

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

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 :-(

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