I'm poor and my doctor has talked about surgery, but as in "It is expensive, you know, and you don't

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netteguru
netteguru Member Posts: 1
in Colorectal Cancer #1
I sometimes feel that I am not getting the best treatment. I don't have insurance and I am overweight and I get comments about how if I lose weight and get my counts down, he will tweak my spots on my liver. Also, at first the internal medicine guy said that I would get a colon resection after I got some chemo, but once I was passed on to the oncologist, he just kept adding rounds of chemo because he said my cea counts were looking so good. They started out at 181 and got down to 6.5. The oncl then gave me a 2 month break of chemo because I had been on it for over a year. I was glad to not get it...but am still wondering what happened to all this "we can cut it" attitude once the count gets low?

So then I took the 2 month break and my count went up to 25.1. I had a treatment and the count was 42.3 and then after the next chemo it is 52 pt something. It is really worrying me. And in the meantime the docs are all talking about how great I look, how I still have my hair and all. But I am sick 8 to 12 days out of every 14. I just want to hurl all the time and nothing helps that the doctor has given me (Ativan/Zofran/Phenergan even medical marijuana which I quit because it absolutely did zero good). All this and I have constant diarrhea and pain in my bottom area. Does anyone out there have any suggestions? I am pretty desperate and would try about anything. I have been sick since July 2010....it is getting real old. I know I might sound like a whining brat but the long haul of this is getting me just...well...just getting me wore down.

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  • John23
    John23 Member Posts: 2,122 Member
    #2
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    netteguru -
    Is there any reason why, after being sent on a wild-goose chase
    by your present physicians, that you have remained with them
    for so long?

    You are entitled to have second (and more) opinions from
    physicians that are not of the same group or organization.

    Have you checked into the possibility of getting Medicaid?

    If you desire to continue western medicine for cancer, there
    are "cancer trials" that you take advantage of, for free care!

    As far as your CEA count rising after chemo treatments?
    You should be made aware that the simultaneous death of any
    large number of cancer cells can cause the CEA to rise. The
    "CEA" marker is only one of a vast number of markers to
    consider for a total diagnostic appraisal; taking one marker
    alone, is of very, very little diagnostic value.

    Please try to get other physician's opinions. A good colorectal
    surgeon can be a much better option than an oncologist.

    Stay well; think "healthy".

    John
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #3
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    What state are you in?
    It sounds like you have metastatic disease, and if you do you automatically qualify for Social Security Disability, and possibly for SSI for income assistance. Once you have SSDI, and if you meet your states income guidelines, you can get Medicaid, which would solve your insurance problems. Every state is a little different, which is why I ask about your location.
  • farmgirl500
    farmgirl500 Member Posts: 8
    #4
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    Something for Nausea
    Sorry to hear about all that you have been through. I just wanted to pass along a weird food item that really helped me with my nausea. I started 5FU/CPT-11 and Avastin this past weekend. Nauseated all the time and could hurl with merely thinking about it. Yesterday I ate a kosher dill pickle in the afternoon and within about 30 mins. no more nausea. Ate one at every meal today and again...no nausea. A girl I work with was a nurse in the Navy and said it might be the PH in the vinegar of pickles that is helping. I'd eat a bug if it helped at this point. ha ah ha. No diarrhea either so far. I was told the CPT-11 might make my blood pressure go up but on Sunday it was 121/60 so I figure I can afford the salt in a few pickles.

    Take care.

    cindy
  • steveandnat
    steveandnat Member Posts: 886
    #5
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    Ask the onc for Emend
    I get an anti nausea premed before my chemo...emend which seems to help me some with the nausea. I don't have much of an appetite but don't feel like hurling too often. The only thing with emend is the cost. it drives me crazy whether you have insurance or not the insurance companies dictate what you can get. at the beginning i was given a pill prescription for emend to take at home after chemo treatment. the insurance company won't pay anymore because its too expensive. definatly try for social security disability and medicaid. Wishing you the best.
    Jeff
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #6
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    I am so sorry that you feel
    I am so sorry that you feel that you are not getting the best of care because of insurance. I would hate to think that anyone gets treatment based on their ability to pay but there are some creeps out there.

    Do you have someone that goes with you to your appointments that you trust? Someone that can listen to everything and maybe ask some "whys and why nots". I go to my husbands appointments and ask all kinds of questions (I am sure the docs despise this board sometimes. lol) I have asked why they are we planning this route, why aren't we trying this? I am no doctor but this site has given me all kinds of ideas and it's nice to hear why they want to try this and why they don't that.

    I am wondering if you need to move on to another doctor or doctors. If you don't feel like yours is fighting for your life then you need to find one that will. My husband's first onc wanted us to "enjoy the time we have" (he got his pink slip soon after). We went looking for someone that wants to beat it and we found them. I hope you go searching for your fighters now. If you want to share your area maybe someone here will suggest someone in your area.

    GOD bless you.
    Brenda

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