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Where does it end?
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Where does it end?

› Forums › General Melanoma Community › Where does it end?

  • Post
    • March 27, 2018 at 1:58 pm
    jagstter
    Participant

      I feel guilty posting, as I haven't been very consistent on the forum & would rather be encouraging others, instead of relating my own woes … frankly, I don't know where else to go. Nobody seems to understand.

      Recap: MDA in December, '17 … lungs are resolved, yay! However, prostate (180 grams) & right kidney (4 cm complex tumor) likely both have cancer. See you, in June???

      As I am experiencing hematuria, flank pain & other urological "fun," I knew I couldn't wait. Discussion w/ my local Urologist (and more importantly, my wife!) led to January trip to Mayo, Phoenix. Dr. Mitchell Humphreys, highly regarded, says, "kidney has to go, now!" Schedules prostate surgery for April, after nephrectomy recovery. Then, things get wacky & the radiologists quibble for a week or 2 … finally, senior radiologist says, yep – cancer & take the kidney. Unfortunately, now the window is passed & I have to wait 🙁

      So, April 10 starts the year of the knife & I am so tired of it all. MDA wants another brain MRI (plus, the other usual stuff) to check on a small sub-centimeter mass found, last year. Trying not to blow that one out of proportion, especially knowing it will be July or August, before I go back to Mayo for the kidney. I don't need any more complications!

      Finally, my mind keeps going back to the genetic testing results from MDA. BRAF positive & TP53 mutations. The latter (based on my own research) seemed to have some import but was quickly dismissed @ MDA as commonplace in many cancers. Now, in a little over 2 years' time, I'm looking at multiple, simultaneous cancers? I just can't see that as a coincidence … my brain just doesn't seem to be able to reconcile.

      Sorry for my ramblings. You are such lovely people & incredibly courageous … I am humbled & embarrassed, when I think of the hardships & losses many here have endured. I pray this year holds much good in store for you all!

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        • March 28, 2018 at 12:36 am
        Bubbles
        Participant

          Jagstter,

          I am really sorry for all that you are going through.  I am not sure what to tell you.  I really don't understand why, if two different institutions have told you to have the kidney removed they are putting it off!  But….be that as it may…  It is sadly possible for a person with melanoma to have a different simultaneous cancer.  Check out posts from "Julie in SoCal" – she has certainly been through more than her fair share!

          However, I was taught in school "not to look for zebras"!!!!  Meaning…don't look for the crazy until you've ruled out the obvious.  So…I guess if I were in your shoes, I would be asking…why not start me on BRAF/MEK??  Since you are BRAF positive and the most obvious conclusion would be that these are melanoma mets and see what happens while you await surgery?  Is a biopsy possible? 

          It is good to get a second opinion when things get crazy, but sometimes you have to plow through with one doc/institution to avoid getting the run-around.

          Don't know that this helps you much.  Hang in there.  I wish you my best.  Ask questions or just yell and scream as you need.   Yours, celeste

            • March 28, 2018 at 1:15 pm
            jagstter
            Participant

              Hi Celeste,

              I really appreciate your encouragement! You bring up a good point re: BRAF/MEK … I'll definitely discuss w/ the folks @ Mayo. I'd been wondering, too but sometimes, hearing someone you respect echo the same questions makes them ring a little more true 😉

              Because Dr. Humphreys is in such high demand & had already scheduled me for prostate surgery in April, I think the concern was there wouldn't be enough time for kidney surgery by February / March to allow for a full recovery from the nephrectomy. Perhaps, they'll take everything into account from new imaging / labs, genetics, etc. & reconsider looking @ targeted therapy, instead?

              I haven't yet discussed all of this w/ MDA but plan to get their input after I meet w/ Mayo in the next several days. Ideally, I would have just gone to MDA for the urological needs but Mayo offered better prostate options. I agree w/ you that having to deal w/ multiple docs / institutions can get tricky – in more ways than one!

              Thanks again, Celeste!

            • March 28, 2018 at 2:59 pm
            TexMelanomex
            Participant

              Sorry Jagstter! None of us know what the future holds but I do know this…you have already proven that you are a warrior and you are in the fight. Stay in that fight until the battle is won. I'm not sure, outside of ourselves and families, that people really understand how tough this fight can be. The sugeries, the scans and waiting for results, the treatments and drugs, the background anxiety even when we are winning the fight…all take a toll. I chose MDA to simplify treatment and communication (not to mention their stellar reputation), and although the travel back and forth is a drag there is something to be said for consolidating treatment and having a treatment team on the "same page". Give that you might have a few different things going on it makes complete sense that you are looking for the best docs and teams for each aspect of your healthcare and I think you are wise in doing so! 

              I have to agree with Celeste here, start with the low hanging fruit and work your way up the tree as needed. Occam's razor so to speak. Most importantly, no matter how drained or disappointing this battle can be, you can only win it if you stay in the fight. In my line of work, we frequently talk about controlling the things you can control when everything starts to seem beyond your control. Grab one thing out of the whirlwhind and control it, then grab another, and so on. 

              Warrior On Jagstter!!!

               

                • March 29, 2018 at 1:48 pm
                jagstter
                Participant

                  Thanks, Tex! Like Celeste, your encouragement is truly appreciated 😉

                  BTW, you hit the nail on the head re: all the "stuff" that goes w/ this new reality. I tend to be a bit Charlie Brown-esque in my thinking, sometimes. Keeping one's head in the game is tiring but critical. That said, I'm grateful for Warriors like you, Tex, who spur me to take this day on & keep fighting. I hope you continue to see ground regained in your own battle! 

                • March 30, 2018 at 7:06 am
                CindyJ
                Participant

                  Hi, hoping I’m being helpful… in Australia, they are testing Bortezomib or Palbociclib against the mutation TP53.

                  https://clinicaltrials.gov/ct2/show/NCT02645149?term=Palbociclib&cntry=AU

                  Not sure if the similar trial in the U.S. is too, as they don’t list all the mutations they are working with.

                  https://clinicaltrials.gov/ct2/show/NCT02693535?term=Targeted+agent+and+profiling+utilization+registry&cntry=US&rank=1

                  Info to keep in your back pocket. Best wishes!

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