I am stage IV Colon Cancer patient and on SS Disability since October 2012. I have just received a letter from them in December that my disability is under review on continuing or not. I thought stage IV is automatically disability. Has anyone been through this? They need a list of all my Drs and problems. I am currently NED, butt we all know the continuing problems even being NED. HELP!
Sandy
SS Disability
SS Disability
4/11/2012-Colonoscopy-Adenocarcinoma
4/12/2012 CT Scan-1 Liver Met-Stage IV
4/17/2012 Port In -5FU & 5 Weeks Radiation
6/17/2012 Surgery - Removed Rectal,Liver Tumor, & Gallbladder
7/17/2012 CEA <0.5
12/16/2013 PET Clear CEA <0.5
4/12/2012 CT Scan-1 Liver Met-Stage IV
4/17/2012 Port In -5FU & 5 Weeks Radiation
6/17/2012 Surgery - Removed Rectal,Liver Tumor, & Gallbladder
7/17/2012 CEA <0.5
12/16/2013 PET Clear CEA <0.5
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midlifemom
- Posts: 1358
- Joined: Wed Jan 15, 2014 10:58 am
- Location: NJ
Re: SS Disability
I am also on disability, but not as long as you.
What I recall is they said there would be a review every few years. I haven't been through the review yet. Hopefully someone who has Will jump in.
I presume if you list any bathroom, fatigue, neuropathy, etc issues that should suffice.
Good luck, let us know how it goes.
What I recall is they said there would be a review every few years. I haven't been through the review yet. Hopefully someone who has Will jump in.
I presume if you list any bathroom, fatigue, neuropathy, etc issues that should suffice.
Good luck, let us know how it goes.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?
Re: SS Disability
I am also on SSD due to my side effects. I recently had to fill out paper for a review and have not heard back from them. It is a very tedious process filling out the paperwork, butt I would go ahead and do it if they send you the paperwork. I suspect you will get reapproved. I think it's a formality that all people on SSD need to go through.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!
Re: SS Disability
Thanks for your reply Teachpdx, I was just surprised getting it in the mail. I just got another statement last week saying they will be contacting all my medical providers. What will they say?? She is NED, will that change things? NED doesn't mean forever as we all know!
Sandy
Sandy
4/11/2012-Colonoscopy-Adenocarcinoma
4/12/2012 CT Scan-1 Liver Met-Stage IV
4/17/2012 Port In -5FU & 5 Weeks Radiation
6/17/2012 Surgery - Removed Rectal,Liver Tumor, & Gallbladder
7/17/2012 CEA <0.5
12/16/2013 PET Clear CEA <0.5
4/12/2012 CT Scan-1 Liver Met-Stage IV
4/17/2012 Port In -5FU & 5 Weeks Radiation
6/17/2012 Surgery - Removed Rectal,Liver Tumor, & Gallbladder
7/17/2012 CEA <0.5
12/16/2013 PET Clear CEA <0.5
Re: SS Disability
Sandy, you can PM if you'd like. When you fill out the paperwork make sure you emphasize the things that you CAN'T do anymore. This is not when to "tough it out". You want to communicate how having cancer has effected your life and why you can't work, etc. It's pretty much a formality, but make sure you don't soft pedal anything. Just make sure you don't miss deadlines, although they can be forgiving.
Peace
Kristi
Peace
Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!
-
OrchardWriting
- Posts: 53
- Joined: Wed Nov 18, 2015 9:10 am
Re: SS Disability
Hi,
I am actually doing everything I can to get off disability, but have had issues with fatigue, etc. so getting the work I need to move off has been challenging.
At any rate, it's always been explained to me that a big component of a re-determination is the hours you are able to work and the income you make from that work. I don't know about stage IV being a continual qualifier. It should, in my opinion, because we all know what NED means when stage IV and there are more side effects, damage from surgery and chemo and so on.
Please keep us up to date with what you learn. Worried for us both.
J.
I am actually doing everything I can to get off disability, but have had issues with fatigue, etc. so getting the work I need to move off has been challenging.
At any rate, it's always been explained to me that a big component of a re-determination is the hours you are able to work and the income you make from that work. I don't know about stage IV being a continual qualifier. It should, in my opinion, because we all know what NED means when stage IV and there are more side effects, damage from surgery and chemo and so on.
Please keep us up to date with what you learn. Worried for us both.
J.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.
-
midlifemom
- Posts: 1358
- Joined: Wed Jan 15, 2014 10:58 am
- Location: NJ
Re: SS Disability
OrchardWriting wrote:Hi,
I am actually doing everything I can to get off disability, but have had issues with fatigue, etc. so getting the work I need to move off has been challenging.
At any rate, it's always been explained to me that a big component of a re-determination is the hours you are able to work and the income you make from that work. I don't know about stage IV being a continual qualifier. It should, in my opinion, because we all know what NED means when stage IV and there are more side effects, damage from surgery and chemo and so on.
Please keep us up to date with what you learn. Worried for us both.
J.
J,
Have you used the SS Back to Work program?
I would love to find part time work, work around chemo and fatigue. I contacted two of the SS centers and no-one ever called me back!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?
-
OrchardWriting
- Posts: 53
- Joined: Wed Nov 18, 2015 9:10 am
Re: SS Disability
I looked into one of the private companies offering this, but when I called there was no way to speak to a person, just a list of prerecorded information options. Seemed sketchy.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Ooops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13.
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