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Stage 4 Metastatic Colon Cancer

renthead621
Posts: 2
Joined: Sep 2016

My husband was diagnosed with stage 4 metastatic colon cancer that spread to his liver and abdominal lymph nodes. A week later he began chemo therapy. Oxaliplatin ever 3 weeks and Xaloda for 2 weeks on and one week off. After a few days, he had a horrible reaction to the Xaloda. He was having severe chest pains, so they took him off to undergo cardiac tests, which came back negative and he was put back on but a lower dose. 3 cycles later, he was given cetuximeb and another CT scan. That scan showed that he has legions on his lungs now. Surgery does not seem to be an option right now, but he is scheduled to see the surgeon in Feb. He is being seen in a VA facility in New York and, the fact that he was admitted to the hospital on a tuesday night and diagnosed less than 2 days later and that they started treatment right away, I'm not sure they're doing what is best. The problem is that, VA insurance is the only insurance we have and the fact that I'm working is preventing him from being eligible for Medicaid so he could go to Sloan Kettering Cancer hospital, but not enough to get him real medical insurance. The big problem with living in New York City. I am a Home Health Aide by trade, so I don't make much at all. I know his prognosis is not good and I'm scared to death of losing him. I'm depressed and anxious and I don't know what to do. I have a lot of friends and family, but I feel so alone. 

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Welcome to the board! I'm very sorry to hear about your husband's diagnosis. It's definitely a scary thing to face, but this diagnosis doesn't necessarily mean the end. There are several of us who've survived many years passed the expected expiration date, and you'll find other caregivers on here who can offer support and advise. 

Many hugs, and best wishes!

Krista

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Sorry you find your hubby and yourself in this situation, but you have found a very supportive group here.  They are willing to share their experiences, make suggestions and be there to support you and him emotionally.

Your concerns about the VA are a bit different than most, who are found waiting and waiting for things to happen.  The fact that they have been quick to diagnose is good.  The fact that they have started a treatment plan is good.  Are you worried that they have misdiagnosed him or that he should be receiving a different treatment?

It seems that his care is pretty much tied to the VA for the reasons you mention.  I don't know, but perhaps you could get at least a second opinion from Sloan.  They may have other options to suggest or recommend.  Of course that would be out of pocket expense.

Have you asked if the lesions in the lung was tied to the chemo or the disease?

I didn't have chemo so cannot comment on the treatment plan, but there are others who might chime in on that.  The best you can do for him is to ask questions and monitor his treatment and results.  We all have to either be our own advocate or an advocate for our loved one.

Wishing hubby good results.  Please keep coming back for our support.  You are not alone, now that you found us.

Marie who loves kitties

nateswife's picture
nateswife
Posts: 65
Joined: Sep 2016

Hello Renthead,

I'm sorry to hear that you feel anxious and alone. Being the spouse and primary care giver for someone with cancer must be really difficult, and anxiety very real. I am on the other side, but I know that my husband feels helpless. Know that just being there for your husband, supporting him, is the best thing that you can do. 

Finding a support community online is a big help. Also, the VA hospital may have a support group for cancer patients and / or caregivers. Ask to speak with a hospital counselor or social worker. The social workers at my hospital have been great. They know of a lot of resources that are available. They have made calls to insurance companies for me and offered to file for benefits that I didn't know about.

Do you know about SSDI? Social Security Disability Insurance. It's a federal program that allows people to receive their SS payout early. Determination is based on whether someone has worked enough years to pay into SS, and their health condition. Applications of people with life-threatening illnesses are fast tracked. It also has a provision for people receiving SSDI to enroll in Medicaid. I don't know a lot about how it works, but it's worth looking into. 

Best,

Amy

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

This makes me feel sad about your medcial insurance coverage in the states. I live in Canada and there's no concern about what's covered and if we can afford something, we just get it down. I can't imagine being in the position of having to choose my treatment based on costs or what my insurance company will cover. My husband and I figure between my cancer and the blood clot it would have been around the quarter of a million mark as to my treatment costs. He'd like to retire somewhere else but because of my health we have no choice but to stay here. I feel a bit guilty about it but it's not like I had a choice or did something to bring this on.

Anyway, I hope you'll have the opportunity to have your husband looked after as well as can be hoped for. And I hope he responds well to treatment. Good luck.

Jan

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

When my wife was diagnosed I got her on SSDI right away, but we had no insurance. Medicaid assigned a $5000 per month co-pay which drained our savings fairly quickly. I finally found a cancer foundation here in Cali, that would help cover the co-pay. Once you're on disability[SSDI] you wait 2 years for Medicare to start[with few exceptions]. A year into that, I moved to my mother's and had Cindy tell them I left her. Even after Medicare was granted, they wanted a 20% co-pay for out-treatment and chemo, so I let it ride until the ACA took effect. I knew they wouldn't investigate a woman with a grade4 Glioma, they'd just move the paperwork. I've been a straight shooter all my life, I don't like deception or cheating, but when you and/or your spouse's life depends on prompt treatment and getting the best help, I have no problem with gaming the system. Take that for what it's worth and good luck to you and your hubby.................Dave

nateswife's picture
nateswife
Posts: 65
Joined: Sep 2016

Thanks for this information, Dave. I didnt know that there's a high deductible or copay for Medicaid. It's something Id better look into. My insurance company told me that Medicaid would offer better coverage than they do which is one of the reasons why I'm applying for SSDI and after two years, Medicaid. But obviously they're not impartial. 

Do you knew if the copay/ deductible is income based? Also, is enrollment in Medicaid automatic when someone has SSDI for 2 years, or is it elective? I wonder if I would have the option of keeping my current insurance.

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

alowance for living expenses when they calculate it. They'll send a letter when you hit the two year mark for Medicare, not Medicaid. It is optional, but everyone takes the Part A of Medicare as it involves inhospital care. Part B has a cost and is for outpatient care and things like chemo, with an upto 20% co-pay. When you get the handbook it will give you your options....................................................Dave

vtspa6
Posts: 172
Joined: Aug 2015

Since my husband went on disability a year ago he lost his insurance and went back to using the VA.  The VA now has a program that allows for you to go to another dr that is not va, but the va will pay for it.  It is called choice program.  Since my husband was already using a nonva dr they let him keep the same dr., however, he does get his scans done at the va.  Just keep in mind, if another facility does the scans, the radiologist will not look at them if they are not part of the facility. We have to pay a small fee for meds, dr visit ect. but it is by far a cheaper way. 

I also want to add that my husband is stage 4 too and has been on chemo for a yr now.  Chemo has been holding the cancer at bay (few spots still in lungs & lymphnodes) but nothing like it was.  Surgery is not an option for him, just chemo.

 

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

I am Stage IIIC, but only because the initial spots in my lung were not biopsied.  Turns out at least one was a CRC met (just had surgery last week.).  So would be IVA, but try not to get too bogged down in numbers and stats.  During my chemo this particular spot decreased.  About 6 months out of chemo it seemed to grow. 9 Months out of chemo it was clearly larger and doubled in size.

I cannot say enough good things about MSK, particuartly the surgeons who get things out.  Even on just a consult.  Get all the tests done at the VA and contact MSK.  What vtspa6 mentioned seems to be exactly what you need.  (That is great info vtspa6)

On this part:

Just keep in mind, if another facility does the scans, the radiologist will not look at them if they are not part of the facility.

I did have scans done outside Sloan that were then read at Sloan.  The tests were done as part of the initial work-up prior to going to Sloan and maybe things would have changed for me if I had subsequent tests outside of Sloan.  I would hope that would not be the case if someone explains the siutation.  I would gather all materials (scans, bloodwork, colooscopy reports, pathology reports - you can get scans/MRIS on disc) contact MSK and get the second even if a bit out-of-pocket for the review.  Would help put your mind at ease a bit.  And at that point you can figure out which way to go.  It may very well be something where MSK says VA is fine.  Or tweak plan.  Or figure out finances as you go along, including having things filled outside.  Perhaps even having a oncologist (for example) at MSK write the prescirptions, but the infusion and drugs through the VA.  I am not sure if it will work or not.  But there is no downside to asking.

Best of luck and sorry to see you here, but welcome.  Good people here - both patients and caregivers.  Has helped me a ton since this all fell in my lap in late 2014.

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