From the top of the Mountain to the bottom

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

From the top of the Mountain to the bottom

Postby Nik Colon » Fri May 27, 2016 2:13 am

My life. I started working around 16, got a job later at a Bank, then Credit Union. Later promoted to office, then applied for position in accounting, which I actually got! With the company for about 4 yrs b4 I decided my health was affecting my ability too much and quit to find work closer. Found out I was preg. Worked pt after for yrs, but still had physical issues. Mixed with all this did file for disability (won't go into it) turned down, so I was like, whatever. Then found out about my cancer, now they have to believe me...not, so it's a big issue right not and not fun. If they ultimately say FU to me, not much I can do as I have done what I can. They didn't believe me then, why would they now (even with all the evidence) so, I'm fine with it, just hope they pull their heads out of there ass as we do need this, but will find a way without. If I had alot of money, I would be spreading it around to all of you! I love you all and know how hard it is, especially financially. If only I could be rich for a moment, none of you would have to worry about any costs. That is my wish. Love you all
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

Tanya
Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

Re: From the top of the Mountain to the bottom

Postby Tanya » Fri May 27, 2016 6:25 am

I has almost same situation and a lot of things what we don't know. I was applied for Short time disability in August 2015 and on same time I applied for SSD , in Decembey my SSD was declined. But I thing maybe I don't need anymore( I come back to work in November and work up to middle January) . After was recurrence, APR surgery and after I applied again for Short time disability and SSD but this time I hire SS advocate ( everything was done by phone and few mail) and I don't know was they did but SS send me a letter I am approved from May.( the company takes 30 procent from the first check.
We don't know a lot of things for what we eligible ( Medicaid, free transportation, few organization can give you a 100$ per year)
If you need more information you can pm me.
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

AppleTree
Posts: 248
Joined: Fri Mar 18, 2016 8:16 am

Re: From the top of the Mountain to the bottom

Postby AppleTree » Fri May 27, 2016 7:42 am

It is very standard for the first, and even 2nd claim to be denied. Immediately re-apply!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Joannerogers
Posts: 259
Joined: Tue Jun 16, 2015 4:50 pm

Re: From the top of the Mountain to the bottom

Postby Joannerogers » Fri May 27, 2016 11:39 am

Nik, sorry to hear this. I went to ss department with pics and the diagnosis and I was put on the "fast track" for review and a little while later (not long) I was approved. I don't know why they would not approve you as you are also stage 4. I would be outraged! I am outraged actually because someone there is obviously not doing their job! You don't need that extra worry...shame on them!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: From the top of the Mountain to the bottom

Postby jhocno197 » Fri May 27, 2016 12:28 pm

Sometimes you do have to fight for it, unfortunately. My husband was approved in a few weeks. My cousin who ultimately died of brain cancer had to fight for a while & hire a lawyer.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: From the top of the Mountain to the bottom

Postby Nik Colon » Fri May 27, 2016 12:40 pm

It's because I don't have the current credits, but they are trying to backtrack a couple yrs to my original application when I had health issues but was undiagnosed with cancer at that time (even though now I know I had it then, just didn't know then what it was). So mainly I have to prove I had cancer then and that my issues were real and connected to my cancer (which all the issues I had then are symptoms of crc)

I stopped working a few yrs ago because my health, but was undiagnosed with cancer then. I knew I wasn't crazy and my issues were real, but they never thought cancer, not to mention crc (I was too young of course) so that's why I went undiagnosed for years.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

AppleTree
Posts: 248
Joined: Fri Mar 18, 2016 8:16 am

Re: From the top of the Mountain to the bottom

Postby AppleTree » Fri May 27, 2016 1:35 pm

Stay with it. If they deny you again, you need a good as disability lawyer. Good that you already have a denied application on record. It could be possible that a good attorney could even get you back pay, but not sure. Someone in my family is a disability lawyer and that is how I know a little bit about how often legitimate claims are denied. I can tell you though, that those who are persistent usually will get their claim recognized... as long as they don't go posting endless photos on social media doing very active things! Believe it or not, some people are their own worst enemies when it comes to claims! But, I realize, endless paperwork is the last thing you want to, or are even able to handle when you are sick. If you are not up to it I really think it is in your best interest to turn it over to a SS disability attorney.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: From the top of the Mountain to the bottom

Postby Nik Colon » Fri May 27, 2016 1:40 pm

AppleTree wrote:Stay with it. If they deny you again, you need a good as disability lawyer. Good that you already have a denied application on record. It could be possible that a good attorney could even get you back pay, but not sure. Someone in my family is a disability lawyer and that is how I know a little bit about how often legitimate claims are denied. I can tell you though, that those who are persistent usually will get their claim recognized... as long as they don't go posting endless photos on social media doing very active things! Believe it or not, some people are their own worst enemies when it comes to claims! But, I realize, endless paperwork is the last thing you want to, or are even able to handle when you are sick. If you are not up to it I really think it is in your best interest to turn it over to a SS disability attorney.

I actually have a lawyer, the one reason they took my case was they were my original and had all my past info (that's why I called them, even tho not fond of my lawyer) and because of my dx. If I wasn't stage 4 and hadn't applied previously they wouldn't have cuz the work credit issue. That is what is mainly causing the issue as I had credits then but currently dont, so it's a fight to get them to reconsider my original app.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
HopeForJesse
Posts: 245
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: From the top of the Mountain to the bottom

Postby HopeForJesse » Fri May 27, 2016 6:13 pm

Prayers for your financial relief. Hugs too. I stopped playing the Powerball when DH was diagnosed. Seemed not to matter anymore but agree with your sentiments to share any windfalls here. Hope you can enjoy the holiday weekend.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
4/18 CEA 87 :( 5/18 5 days SBRT radiation to sternum CEA declining again 6/13/18 21.1 10/22/18 surgery to remove zyphoid process met
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: From the top of the Mountain to the bottom

Postby Nik Colon » Fri May 27, 2016 6:22 pm

HopeForJesse wrote:Prayers for your financial relief. Hugs too. I stopped playing the Powerball when DH was diagnosed. Seemed not to matter anymore but agree with your sentiments to share any windfalls here. Hope you can enjoy the holiday weekend.


I just noticed this double posted. Oops.

Thanks HFJ for the comment, maybe it will be moved to the other one and this double post of mine deleted :roll:
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: From the top of the Mountain to the bottom

Postby Cowgirl918 » Fri May 27, 2016 8:35 pm

So sorry Nik.That's when I knew I was really sick. Mine went through in 6 weeks with just me and daughter filling out forms :shock:
I would be in real trouble without it. Still the remaining medical bills are impossible. I just pay what I can when I can and leave the rest to Medicare. Hang in there.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: From the top of the Mountain to the bottom

Postby Nik Colon » Fri May 27, 2016 8:45 pm

Cowgirl918 wrote:So sorry Nik.That's when I knew I was really sick. Mine went through in 6 weeks with just me and daughter filling out forms :shock:
I would be in real trouble without it. Still the remaining medical bills are impossible. I just pay what I can when I can and leave the rest to Medicare. Hang in there.

That is kinda where I am now, pay when I can. Thank you
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

AussieAssCancer
Posts: 248
Joined: Sat May 21, 2016 10:16 am

Re: From the top of the Mountain to the bottom

Postby AussieAssCancer » Sat May 28, 2016 12:05 am

I'm so sorry that you guys have to worry about medical bills on top of dealing with the rest of the shit tha comes along with being unwell, as if being mainlined with toxins, being carved up and stitched back together and continually poked and prodded isn't enough to deal with.

That's why I am so thankful for the medical system in Australia. My only out of pockets (thus far) have been to see my surgeon and meds (which are heavily subsidized by the gvt). The rest is covered by the gvt, from my taxes.
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)
Feb ‘18: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: From the top of the Mountain to the bottom

Postby Nik Colon » Sat May 28, 2016 12:33 am

AussieAssCancer wrote:I'm so sorry that you guys have to worry about medical bills on top of dealing with the rest of the shit tha comes along with being unwell, as if being mainlined with toxins, being carved up and stitched back together and continually poked and prodded isn't enough to deal with.

That's why I am so thankful for the medical system in Australia. My only out of pockets (thus far) have been to see my surgeon and meds (which are heavily subsidized by the gvt). The rest is covered by the gvt, from my taxes.

Yeah, in the US it's different. Don't get me wrong, I have pretty good ins, and now some backup at some places. Bue still have some out of pocket. That's hard when you only have one source of income which pretty much only pays to get by. But, we are doing out best, if we pay late, oh well, not much we can do. So I try to now schedule around what ins covers more. It's a pain, but worth it imo. Most people in our situation pay way too much and it's hard. It's not fair, imo., but for now, it is what it is, and they will still help, but so hopefully it won't get to the FU point. So many things, the deductible, the other things depending on ins (copays, etc) every yr starting from square one on owing. And raising the tax deduction from 7.5 to 10. I swear! Anyway, end of rant
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: From the top of the Mountain to the bottom

Postby Nik Colon » Sat May 28, 2016 12:40 am

At this point, I don't care about back pay or amt, anything would make me happy

It's more about proving a point atm
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc


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