medical records / curcumin

colleen B
colleen B Member Posts: 25
edited March 2014 in Esophageal Cancer #1
My husband was diagnosed with a stage 4 esophageal adenocarcinoma and it had also appeared in the liver with a one centimeter area that was biopsied. He was diagnosed in late February 2010

He has been receiving treatment at Sloan Kettering in NYC. He now has a mediport and every two weeks he gets oxyplatin and 5FU. He has had very few reactions to the chemo besides sensitivity to cold and some irritation of the toe nails...and fatigue. The original esophageal tumor was 10 centimeters long.

He just had a cat scan last Monday and this Monday we will get the results from the cat scan. Also On Tuesday we will meet with Dr Brown at Thomas Jefferson Hospital in Philadelphia to see if he can have theraspheres to stop the cancer from progressing in the liver.

He is still able to eat normal foods...although he eats small amounts...which encourages us to think the original tumor has shrunk

He drinks juice from broccoli and carrots and from various fruits. Also he drinks milk with whey protein and when I can I buy organic foods including organic chicken. I put some flax seed oil into the drinks.

He is also taking curcumin pills and I encourage (nag) him to eat berries...

A problem that we have is that we do not have his records of the blood work etc. Patients are allowed to keep copies of their own records? is that true? It seems like that would be a good idea...

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I always ask for copies of my test results
    Colleen,

    I always request a copy of tests that have been completed as part of my cancer treatment. This includes blood work, pathology reports, and scan results. I have found that in many cases the test results do not get sent to the other doctors that are a part of my medical treatment team. For example the last report from my CT scan ordered by my oncologist did not get sent to my primary care provider nor my surgeon.

    You can request a copy of all of your medical records (they may charge you a fee for copying the records but I would suggest that cost is well worth having the information should you need to change doctors or treatment facility.


    Paul Adams
    AKA "paul61"
    McCormcik, South Carolina
  • K_ann1015
    K_ann1015 Member Posts: 500
    #3
    Go ahead and ASK for a COPY of blood work results
    Colleen,

    I admire you for the nutrition you can supply and your husband will agree too! My situation is different--my dad has the EC and my mom is the caregiver and he will/would not do mush of what you have done! SO the reason I am writing is that he DOES ask for a coy of his blood work EACH time they do it...He goes to DUKE in NC. I don't think they can refuse you, but it may take more EFFORT at other facilities. I don't think they can deny you when you ask for a copy of a medical record. Guaranteed --you are not the first to do so.

    Best of luck, prayers for success in treatment.

    Kim
  • Ellie_E
    Ellie_E Member Posts: 50
    #4
    Hi Colleen,
    My husband, Jim,
    Hi Colleen,
    My husband, Jim, was dx last September with Stage IVb EC. He had epirubicin, oxalyplatin, and xeloda for his first few rounds, then went to cisplatin and irinotecan. He also was very sensitive to the cold and had neuropathy in his feet and fingers. Next Thursday, he will start a new cocktail, Taxotere. You have an absolute right to all his records! I keep all of Jim's in a folder that I can grab in a hurry--which we have had to do a few times when he was in the emergency room. I also keep a listing of dates for each test, chemo treatment, blood transfusion, medications, etc. It makes it easier to be able to read off the information instead of trying to memorize everything. Welcome to this site. It has been a godsend. Even though I don't write often, I find it comforting and informative to read other posts.

    Ellen

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