Surviving

Hi, my name is Dave and I've been battling stage 4 rectal cancer for about 11/2 now after diagnosis in May 2015. Chemo is all I've been given so far. Started out with the Cisplatin regiment with an antibody agent for about 6 or so months. Things went as well as they could I suppose but the regiment stopped working and I started on irinotecan which proved to be very effective. The problems started about 14 - 15 months into the chemo treatments as I begin to exdperience one set back after another, heart palpitaitions, jaw infection from dental work, arthritis in my shoulders and hands. My onc put me on maintenance and this allowed the cancer to start growing again The onc wasn't sure if the 5fu was the cause of my heart problems as most people who do react to it do so while being given the chemo. We were all set to return the 5fu irinotecan regiment when the insurance company decided not to approve the 5fu citing it to be not medically necessary which caused me to think there was no hope for me. I started a new regiment about 10 days ago with an antibody agent and some other drug not sure of name right now. Any advice or thoughts would be greatly appreciated, I need friends now who know what I'm going through first hand.

Thanks, Dave

 

 

Comments

  • Joan M
    Joan M Member Posts: 409 Member
    edited January 2017 #2
    Hi Dave, Sorry to hear about

    Hi Dave, Sorry to hear about your problems with chemo. I don't understand how your insurance can deny coverage for chemotherapy that your doctor ordered.  There must be an appeal you can file on that. 

    I have a similar situation as yours in that I am on chemo only.  I had 8 rounds of all out chemo with Oxaliplatin and 5fu plus Avastin, and have been on maintainence chemo since July.  I get Avastin infusions every 3 weeks and take 2500 mg of Xeloda for 14 days and then have 7 days off.  So far, my tumors have been either shrinking or stable.  I have  seen about 5 different doctors - 4 at my regular clinic and one at Mayo.  The doctor at Mayo told me the tumors were dead.  Another doctor at my regular clinic said they were just dormant.  My doctor told me that with stage 4 it always comes back.  He said I shouuld go to MD Anderson for targeted tretment when it comes back.

    I am very happy to be alive! Yet live with the fear of the cancer starting to grow again.  It is hard to deal with emotionally.  Joining this site has helped me to see how others have managed with their treatments.  It has given me hope to see all those who have survived for years with stage 4 cancer.  I posted my treatments on my page.  You can read my story be clicking on my name, as well as any other persons personal stories.  Some have blogs that can also be helpful. 

    Hope they can figure out the 5fu and you have good success with the new treatment they put you on. 

    Joan

  • Trubrit
    Trubrit Member Posts: 5,754 Member
    Push for it

    Welcome to the forum, Dave. 

    I am very sorry tho hear that your insurance is refusing to cover your 5FU treatments. I think you need to get more aggresive with the insurance, and get your Oncologist behind you also. When I went for my liver Ablation, my insurance refused to cover it. My Surgeon's staff talked to them personally, and then, my surgeon talked to them. In fact, he threatened them, telling them he would complain (not sure if thats the right word) to some state board. Its been a few years, and I can barely remember my name, so I can't remember who it was that he said he would report them too, but as soon as the insurance heard that, my ablation was covered. 

    Sometimes these people need a smack upside the head.  I know its hard, especially when you are not feeling your best, but I really would try to push the issue and get your Onc to push them as well. If a professional Oncologist says you need 5FU, then some pencil pusher behind the desk at your insurance should not be denying it. 

    Good luck as you move forward. Stick around here on the forum, plenty of folks who are willing to help and support you. 

    TRU

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Wow, I live in Canada and I

    Wow, I live in Canada and I can't imagine being told that my treatments wasn't covered. All mecical procedures are covered here unless they're elective like plastic surgery or things like that. We have enough to worry about without worrying about things like that. I hope you get it sorted out!

    Jan

  • joeys416
    joeys416 Member Posts: 7
    Joan M said:

    Hi Dave, Sorry to hear about

    Hi Dave, Sorry to hear about your problems with chemo. I don't understand how your insurance can deny coverage for chemotherapy that your doctor ordered.  There must be an appeal you can file on that. 

    I have a similar situation as yours in that I am on chemo only.  I had 8 rounds of all out chemo with Oxaliplatin and 5fu plus Avastin, and have been on maintainence chemo since July.  I get Avastin infusions every 3 weeks and take 2500 mg of Xeloda for 14 days and then have 7 days off.  So far, my tumors have been either shrinking or stable.  I have  seen about 5 different doctors - 4 at my regular clinic and one at Mayo.  The doctor at Mayo told me the tumors were dead.  Another doctor at my regular clinic said they were just dormant.  My doctor told me that with stage 4 it always comes back.  He said I shouuld go to MD Anderson for targeted tretment when it comes back.

    I am very happy to be alive! Yet live with the fear of the cancer starting to grow again.  It is hard to deal with emotionally.  Joining this site has helped me to see how others have managed with their treatments.  It has given me hope to see all those who have survived for years with stage 4 cancer.  I posted my treatments on my page.  You can read my story be clicking on my name, as well as any other persons personal stories.  Some have blogs that can also be helpful. 

    Hope they can figure out the 5fu and you have good success with the new treatment they put you on. 

    Joan

    Thanks Joan, and please stay

    Thanks Joan, and please stay in touch. I go for Chemo on Friday and will let you know what my onc has to say.

  • joeys416
    joeys416 Member Posts: 7
    Trubrit said:

    Push for it

    Welcome to the forum, Dave. 

    I am very sorry tho hear that your insurance is refusing to cover your 5FU treatments. I think you need to get more aggresive with the insurance, and get your Oncologist behind you also. When I went for my liver Ablation, my insurance refused to cover it. My Surgeon's staff talked to them personally, and then, my surgeon talked to them. In fact, he threatened them, telling them he would complain (not sure if thats the right word) to some state board. Its been a few years, and I can barely remember my name, so I can't remember who it was that he said he would report them too, but as soon as the insurance heard that, my ablation was covered. 

    Sometimes these people need a smack upside the head.  I know its hard, especially when you are not feeling your best, but I really would try to push the issue and get your Onc to push them as well. If a professional Oncologist says you need 5FU, then some pencil pusher behind the desk at your insurance should not be denying it. 

    Good luck as you move forward. Stick around here on the forum, plenty of folks who are willing to help and support you. 

    TRU

    Thanks Tru

    Thanks Tru

  • joeys416
    joeys416 Member Posts: 7
    Thanks Jan

    Thanks Jan

  • nateswife
    nateswife Member Posts: 65
    Hi Dave,

    Hi Dave,

    Its sad to hear about the side effects that the chemo is causing you. As if the cancer itself weren't bad enough... I get what you're going through. I thought at first that I was imagining things, because how the heck could chemo cause arthiritis?! And tooth / gum pain and a lot of other symptoms. Thank goodness for the Internet and sites like this that connect us. I learned about other people who were having arthritic pain (it started in the shoulders for me), dental pain and the other things. When I went home with the 5FU pump it would keep me awake- I'd be up in the early morning hours alone, listening to my heartbeat make weird patterns, then slow, theN beat so hard that I figured it was about to seize up like an engine. 

    The (kind of ) good news is that most of the bad side effects have gone away now that I'm off chemo. I still have shoulder pain but the other pains are gone. 

    About your insurance denying 5FU- maybe there other ones that your onc recommends that the insurance would cover? There are a number of drugs that are known to be effective for colorectal cancer. Oxilaplatin, Xeloda, and Lonsurf are some. 

    Best wishes,

    Amy

  • joeys416
    joeys416 Member Posts: 7
    edited January 2017 #9
    nateswife said:

    Hi Dave,

    Hi Dave,

    Its sad to hear about the side effects that the chemo is causing you. As if the cancer itself weren't bad enough... I get what you're going through. I thought at first that I was imagining things, because how the heck could chemo cause arthiritis?! And tooth / gum pain and a lot of other symptoms. Thank goodness for the Internet and sites like this that connect us. I learned about other people who were having arthritic pain (it started in the shoulders for me), dental pain and the other things. When I went home with the 5FU pump it would keep me awake- I'd be up in the early morning hours alone, listening to my heartbeat make weird patterns, then slow, theN beat so hard that I figured it was about to seize up like an engine. 

    The (kind of ) good news is that most of the bad side effects have gone away now that I'm off chemo. I still have shoulder pain but the other pains are gone. 

    About your insurance denying 5FU- maybe there other ones that your onc recommends that the insurance would cover? There are a number of drugs that are known to be effective for colorectal cancer. Oxilaplatin, Xeloda, and Lonsurf are some. 

    Best wishes,

    Amy

    I know it sounds terrible but

    I know it sounds terrible but it's good to know that there are others who've had similar experiences. I've had people that thought i was making this stuff up. Been many times I thought my heart would explode. I've done the Oxilaplatin but not the others so it's good I still have options. Right now I'm on the cetuximab and irinotecan and go for 2nd infusion tomorrow. Have a rash and some rectal pain but I guess that'a a sign the drugs are working. Start with a new insurance carrier this year so maybe can get back on the 5fu. I'm not ready to give up yet, I know this can be beaten if I can hang around long enough.