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i would be interested in other’s experience particualry new paitents
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i would be interested in other’s experience particualry new paitents

› Forums › General Melanoma Community › i would be interested in other’s experience particualry new paitents

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    • September 13, 2020 at 8:12 pm
    tkoss
    Participant
      as i read MPIP BB and refer to AIM and other melanoma and cancer websites and blogs i got to thinking.

      there is no reference material in my docs offices. no pamphlets ,no handouts, no website recomendations , no nothing for resources. This is true of my hospital based infusion clinic nor the big 400 Doc Onc practice I was first referred too.

      in the initial stages i had no info and could not really ask any intelligent questions of my docs. It was only after SLNB that i realized i needed more info from other sources.

      there is more literature on Weed Eaters at the Home Depot than cancer info in my Onc’s office.

      I found AIM and MPIP on my own. One onc did get me a photocopay of the NCCM guideline pertaining to my stage of cancer. 1 sheet. From then on it was’ ‘standard of care’ and ‘trust us:”

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        • September 14, 2020 at 2:07 am
        T.C.
        Participant
          I find that odd that not much information was provided to you. Th number of Oncologists and Dermatologists that I have seen always had plenty of literature for my wife and I to review. I also found way more information than I needed on the WEB. American Cancer Sopciety has plenty of information for you to absorb.

          Good luck

            • September 14, 2020 at 3:29 am
            tkoss
            Participant
              honest to gosh , there wasn’t one piece of literature from American Cancer Society of SGC. My infusion clinic sees 50-100 people a day, Nothing. Same with the big Onc practice. Nice waiting room, no literature whatsoever.
              i got to thinking maybe they are concerned about poor information being disseminated. Certainly my docs NEVER suggested I should get most of my info from the web,
              • September 24, 2020 at 2:54 am
              MelMel
              Participant
                Tkoss, honestly it is because they do not want to scare patients and their caregivers. I was hospitalized twice and the doctors including my melanoma specialists were super elusive with information. It was literally like pulling teeth. I was relentless and I researched drug related liver injury on the internet and finally met a young Chinese liver specialist who had the answers and no nonsense approach. He explained in detail the difference between the liver numbers, etc. It took a month to get accustomed to the side effects from the steroids. I completely agree that obtaining correct and relevant information is the key.
                Melanie
                • September 24, 2020 at 3:03 am
                MelMel
                Participant
                  “Accustomed” meaning that the doctors have a lets wait and see what happens with the side effects approach. I have sort of side stepped that once I saw how tight lipped they are. Instead, I went to my local pharmacy, explained my situation and luckily the pharmacist was super sympathetic being that she has a friend who has uveal melanoma. She printed me 17 pages of side effects and percentages for Yervoy and 14 pages for Opdivo directly from what the pharmacists only have access to.
                  Melanie
                  • September 24, 2020 at 3:07 am
                  MelMel
                  Participant
                    “Accustomed” meaning that the doctors have a lets wait and see what happens with the side effects approach. I have sort of side stepped that once I saw how tight lipped they are. Instead, I went to my local pharmacy, explained my situation and luckily the pharmacist was super sympathetic being that she has a friend who has uveal melanoma. She printed me 17 pages of side effects and percentages for Yervoy and 14 pages for Opdivo directly from what the pharmacists only have access to.
                    Doctors also do not know a whole lot about this disease so getting a simple answer when we want is not exactly easy.
                    Melanie
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