• Hilkei's Avatar

    Hilkei wrote on BuckeyeShelby's wall

    Hi Buckeye Shelby! I just checked in for the first time in months and am so sad to hear of Greg’s passing. I am very happy to see you and wish you all the best of everything.

    1 Comment
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Thank you. I had some challenges over the summer, but I'm almost back to baseline. Hope all is happy in your world. And yeah, we all miss Greg so much. It wasn't completely unexpected, but boy did that hurt.

      10 months ago
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    Hilkei asked a questionNon-Hodgkin Lymphoma (NHL)

    I could use some advice ...

    5 answers
    • po18guy's Avatar
      po18guy

      It is very late in the game, but is there another doctor available for a second consult/opinion? Mantle cell is nothing to mess around with, as you well know. A doctor who is, ummmm, "experienced" enough to still use handwriting "may" not be at the top of his game. A younger doctor would be trained in computerized records and that is what insurance companies (whether government or private) thrive on.

      As well, hoping that you are done with lymphoma, but....there has been a ton of research and new drugs and combos available since you were diagnosed, and more data just released over the weekend at the national hematologists meeting (ASH). Besides drugs, monitoring guidelines may have been modified to some degree.

      A younger and more aggressive doctor will get more results for you - you should NOT have to push for this! IMO, I would much rather have an arrogant but aggressive doctor who could place me in remission than a friendly, slap on the back doctor who would gladly cancel appointments to attend my funeral!

      I would check into another doctor.

      almost 2 years ago
    • andreacha's Avatar
      andreacha

      Hilkei - In today's society I am sorry to say you MUST advocate for yourself. I agree completely with the above 3 answers. Someone's file in the doctor's handwriting is unheard of today. I personally know of no other doctor (and I have 10) that does this now. And, actually I don't know how he is getting away with it with Medicare. They require computerized files today. We have one person in our community who works in insurance so she may be able to chime in. Please, please, get yourself another doctor if you value your life and it's obvious that you do, or you wouldn't have asked for opinions. I can only hope and pray that you will look for one. Don't even tell him you are leaving if you decide to. Find one and they will automatically request your records. When your new doctor takes a look at that mess he will want tests to be done on you. Your new doctor will fight your insurance company for coverage for those tests. All he would have to do is send them your doctor's chicken scratch to prove how necessary the tests are. Good luck and let us know the outcome. Good luck.

      almost 2 years ago
    • Carool's Avatar
      Carool

      I’m adding to these great responses by saying that even if your doctor can’t use a computer — a definite handicap these days, especially for any medical professional — his office staff should be able to transcribe his notes. I, too, would find a more modern, up-to-date oncologist. As po18guy said, your present doctor may well not be informed of new treatments available to you should you ever need them. Good luck with this.

      almost 2 years ago
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    Hilkei started following

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    Hilkei asked a questionNon-Hodgkin Lymphoma (NHL)

    Mantle Cell Lymphoma survivors?

    • GregP_WN's Avatar
      GregP_WN

      I did a little search for mantle cell lymphoma on the diagnoses tab and it looks like there are 425 people registered on the site with MCL here is a link to my search

      http://bit.ly/2mhzMhf

      about 2 years ago
    • Cookie48's Avatar
      Cookie48

      Hilkei my PET scan and bloodwork is good! one year and 3 months since finished a course of rituxin/benemussin for aggressive mantle cell--thanks for asking cookie

      about 2 years ago
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