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A Little Down
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A Little Down

› Forums › General Melanoma Community › A Little Down

  • Post
    • February 21, 2019 at 12:34 am
    mrsaxde
    Participant

      Hi Everybody,

      I just had a talk on the phone with my radiation oncologist. The bottom line is that my latest brain MRI revealed a questionable new spot that she said she wasn't sure what to make of. It's very tiny, but it definitely wasn't there on the scan I had pre-radiation just over a month ago. She said that she would defer to the radiologist's opinion on it since they are trained to spot things like that. In addition, one other treated area on my cerebellum is quetionable, and may be showing new activity.

      I haven't talked to Dr. Sharfman yet, and I need to get the pictures sent to him, as the local cancer center only sent him the report. But I'm afraid this is going to disqualify me from the anti IL-8 trial I was hoping to get into. That leaves more radiation and Temodar as my only treatment options at the moment.

      I've been dealing with this for six years now, and for the first time I'm feeling pessimistic about the future. I'm sorry about whining on here but I needed to vent. I wouldn't call my mood "devastated" but this is a major hit. Thanks for listening.

      -Bill

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    • Replies
        • February 21, 2019 at 2:48 am
        Bubbles
        Participant

          Well, shit fire, Bill!  You can be down with this one and I wouldn't blame you!  BUT!!!!  I'm going to hope that you can zap the bugger and carry on with your plans.  Researchers have come to realize that we can't keep blocking access to folks with brain mets!!!!!  And of course, you know me, I've been yelling about this for forever:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/03/should-melanoma-brain-met-patients-be.html  

          I'm going to keep all fingers and toes crossed for you.  Keep us posted.  Hang tough.  Celeste

          • February 21, 2019 at 3:16 am
          lkb
          Participant

            Bill, I don't claim to understand the timing issues with trials. However, I'm hoping to cheer you with the news that I was slated to begin this an IL-12 trial https://www.ncbi.nlm.nih.gov/pubmed/29064334 when a brain met was discovered. I had one radiation treatment for it and one month later, after a confirmatory MRI, I'm on the trial. Wishing you luck, luck, luck!

              • February 21, 2019 at 3:47 am
              Mark_DC
              Participant

                Hi Bill, I am hoping too that Celeste and lkb are right. That if it is a problem then you can try radiation again and then back on the trial. Will be thinking of you and hoping that you will soon overcome this

                best wishes Mark

              • February 21, 2019 at 4:32 pm
              Linny
              Participant

                So sorry to hear about this. As of this moment, these developments are still questionable. 

                The sooner you talk to Dr. Sharfman, the better. As a fellow patient, the one thing I appreciate about him is his calm bedside manner.

                Keeping my fingers crossed for you.  

                • February 21, 2019 at 5:04 pm
                mrsaxde
                Participant

                  Thanks for the words of encouragement everybody! I'm feeling a little better about things today. Waiting on Dr. Sharfman to return my call. We'll get this figured out!

                  -Bill

                  • February 21, 2019 at 7:50 pm
                  sing123
                  Participant

                    Hi Bill, so sorry for the less than stellar news. Glad to read that you are feeling a bit better and will be hoping you get news soon that makes you feel a lot better!

                    • February 22, 2019 at 8:42 pm
                    Hukill
                    Participant

                      Ok, since you're down I am going to try to make you laugh with the story I tell the healthcare people I deal with. (This is meant to be funny) My 2 primary spots were on my head with 1 being stage 2b and left a tennis ball size hole in my head. So you would think the brain would be the first place melanoma went but all my MRIs and PET scans have been clean with nothing even to watch. I tell them that I know melanoma went there but looked around and said "oh hell no, we ain't staying up in here, to much crazy stuff going on. We're going somewhere where it is quite." So it went to my lungs and made 7 tumors. And yes, I really tell that story, gets a laugh every time. Hope it made you at least smile.

                        • February 23, 2019 at 3:42 pm
                        mrsaxde
                        Participant

                          Yes, I did smile at that one. Thanks! 😀

                          -Bill

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