November 17 results…..BRAF MEK continues to work

› Forums › General Melanoma Community › November 17 results…..BRAF MEK continues to work

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    • December 12, 2015 at 5:04 am
    Rita and Charles
    Participant
      Its so hard to dissect the radiologist reports, but I google and wikpedia and hope that I am hitting the mark.  We got our physical copy of the CT results and news is good, no new progression, some stayed unchanged and some had slight decreases. The report also had intel that maybe we just didn't have in the last CT as it was done with out contrast and only of the Lung area.  This CT did the abdomen, lung, chest…and with contrast. So more info………..log it away until the next one to compare it to again.  If you are reading this Colleen and have any medical input – chime in.  I am a self taught reader of CTs.  Dr. Kosty reviewed with Charles on the phone, but without a report to ask about every sentence…..it was just high level. I read sentences like "mural nodularity in the gallbladder which could be gallstones or polyps…….and polyps can turn to other things..so scary, right? but much of the report isn't explained by the doctor….just the good news of no change or decreases, but the rest I fear could contain hidden future worry. I think that doctors forget that what they see daily is confusing or frighting for a layman.  A report that speaks of nodules unchanged  in areas we didn't realize there were nodules has us going "what"?  But below is the good news, enough of the worry bead list. 
       
      Lymph Nodes: first diagnosed 3×4 combined – below breaks them down individually-
      Paratracheal/precarinal lymph node affected is now 1.8 cm x1.3 cm slightly decreased from 2.1 cm x 1.4cm
      Subcarinal lymph node is now 2.3 cm x 1 from 2.9cm x 1.2cm……slow and sure.
       
      Right Mid Lobe Lung:
      The right mid lobe tumor is now .5cm x .4cm x .5 cm from last CT of .6cm x .6cm x .5cm
       
      .7 cm hypodense nodule in the left thryroid lobe but then states no axillary lymphadenopathy….so no swelling of lymph nodes adjacent…..or so google explains the definition to me.  So part of our cloudiness of medicine, all previous reports don't touch on any mention of the thyroid lobe. So….since they say no scary progression in the full report, was it there before and just not a cause for their concern?  It concerns me…..I am going to watch that sucker.
       
      Other tidbits a 1 cm nodule in the left adrenal gland……but this isn't worry them, again I am watching that sucker.
       
      Unchanged as well is a 2.4 x 1.1 cm portacaval lymph node……. did we not even see that before?
       
      Again, Dr. Kosty says good news – moving forward in the right way.  With this report there seems to be more of a list of lymph node involvement….from thyroid to adrenal to trachea….again, going to watch these suckers!
       
      So now we keep moving, 2 more months until the next scan, 2 more months of the current medicine. I try not to worry that we still aren't pros at navigating this all yet, it has only been 5 months and life still has a suspension quality to it……..happy but worried all at the same time.
       
      *we just did blood work today, 12/11 and meet with Oncologist for monthly visit on Monday 12/14, Back MRI scheduled on 12/17
       
       
       
       
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    • Replies
        • December 13, 2015 at 1:51 pm
        Momofjake
        Participant

          Rita,

          Hi again. I am with you! I am waiting for our electronic written report as well right now. Our dr simply said disease is stable with 2 new tumors. One on the neck and one in the rectum….ugh. We really couldn't much more out of him. Well, my 18 yr old patient never says a word actually!! He did mention his right rib cage being a problem…and he said we just simply stay with our same treatment of keytruda. I am dreading the detective decoding required for me to make any sense of his written scan reports. But I will have to do this. I may send these off to other dr this time for an opinion. At 18 Jake will quit if the rectum becomes an issue. For now he seriously looks amazing, feels good and is going w the possibility that the mass could be inflammation. For now I want him to live his life as carefree as possible:) I will do the homework!!

          hope your decoding goes well!! Hope there is healing in your future!!

          kerri

           

          • December 13, 2015 at 1:51 pm
          Momofjake
          Participant

            Rita,

            Hi again. I am with you! I am waiting for our electronic written report as well right now. Our dr simply said disease is stable with 2 new tumors. One on the neck and one in the rectum….ugh. We really couldn't much more out of him. Well, my 18 yr old patient never says a word actually!! He did mention his right rib cage being a problem…and he said we just simply stay with our same treatment of keytruda. I am dreading the detective decoding required for me to make any sense of his written scan reports. But I will have to do this. I may send these off to other dr this time for an opinion. At 18 Jake will quit if the rectum becomes an issue. For now he seriously looks amazing, feels good and is going w the possibility that the mass could be inflammation. For now I want him to live his life as carefree as possible:) I will do the homework!!

            hope your decoding goes well!! Hope there is healing in your future!!

            kerri

             

            • December 13, 2015 at 1:51 pm
            Momofjake
            Participant

              Rita,

              Hi again. I am with you! I am waiting for our electronic written report as well right now. Our dr simply said disease is stable with 2 new tumors. One on the neck and one in the rectum….ugh. We really couldn't much more out of him. Well, my 18 yr old patient never says a word actually!! He did mention his right rib cage being a problem…and he said we just simply stay with our same treatment of keytruda. I am dreading the detective decoding required for me to make any sense of his written scan reports. But I will have to do this. I may send these off to other dr this time for an opinion. At 18 Jake will quit if the rectum becomes an issue. For now he seriously looks amazing, feels good and is going w the possibility that the mass could be inflammation. For now I want him to live his life as carefree as possible:) I will do the homework!!

              hope your decoding goes well!! Hope there is healing in your future!!

              kerri

               

                • December 13, 2015 at 2:08 pm
                Rita and Charles
                Participant

                  Kerri – good luck with your decoding too!  I take my "notes" to each appointment and grill the Dr. on what he didn't cover, going through it with him to ask " and what does this mean" and what does this mean?  Especially with lymph nodes…….

                  My thoughts are with you and your son, I can't imagine an 18 year old having to walk through this – take care and if you feel you need it, get more opnions too………..this disease is too much for any one Dr. or Person to handle!

                  Take care, 

                  Rita

                  • December 13, 2015 at 2:08 pm
                  Rita and Charles
                  Participant

                    Kerri – good luck with your decoding too!  I take my "notes" to each appointment and grill the Dr. on what he didn't cover, going through it with him to ask " and what does this mean" and what does this mean?  Especially with lymph nodes…….

                    My thoughts are with you and your son, I can't imagine an 18 year old having to walk through this – take care and if you feel you need it, get more opnions too………..this disease is too much for any one Dr. or Person to handle!

                    Take care, 

                    Rita

                    • December 13, 2015 at 2:08 pm
                    Rita and Charles
                    Participant

                      Kerri – good luck with your decoding too!  I take my "notes" to each appointment and grill the Dr. on what he didn't cover, going through it with him to ask " and what does this mean" and what does this mean?  Especially with lymph nodes…….

                      My thoughts are with you and your son, I can't imagine an 18 year old having to walk through this – take care and if you feel you need it, get more opnions too………..this disease is too much for any one Dr. or Person to handle!

                      Take care, 

                      Rita

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