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10th primary . ..still counting
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10th primary . ..still counting

› Forums › General Melanoma Community › 10th primary . ..still counting

  • Post
    • March 4, 2017 at 12:28 pm
    Bobman
    Participant

      I think  I  finally  got  someone's  attention . 

      It's  taken a pound of flesh, and some changes  in providers  to get here, but I  am more confident  now than at any other  time on this wild ride. Getting  the biopsies  I  knew  needed  to be done has been like pulling  teeth  with a couple  of  previous  dermatologists ,causing  me to venture  into stroke territory  by resisting  the urge  to choke  the s#&!  out of them. But the 3rd one may be the charm. He calls me a "special  " case. Isn't  that special ?  Like music  to my ears. With hundreds  of lesions  on my body , I  do realize  that they're  looking   for that ugly  duck, but on me it's  not ugly enough  to catch the eye of the average  dermatologist . This guy trusts my judgment .  I assured  him I am not a masochist , and  if I  say it's  changing , it needs to go away. Of course  I  have all the pathology  to back me up,and I   have found  8 out the currently  10 melanomas . He wasn't  a believer  at first , but after his full body examination  last week , which was thorough , he said everything  looks "okay  ". I pointed  to my belly  and said how about taking this guy off right here. He said it didn't  look worthy , but would if it made me feel  better .  That was number  10. He called  me yesterday , picked my brain ,and was definitely  now intrigued . How sweet it is.

      Epidermatropic  metastatic  melanoma . Word's  I  would  have  never  heard this life were it not for  this  forum .  A thoughtful  reply to one of my posts  awhile  back brought  it up ,when I was freaking  out about my 6th,or 7th,or 8th primary .  Known as the "InSitu mimicker " ,epidermatropic  metastatic  melanoma  is a very rare for of melanoma . Well  documented , I  started throwing  this big word around  trying  to get someone  to at least rule it out,since it's  criteria  is fitting  me like a glove these days . I finally  found  a pair of ears. Although  my dermatologist  has not heard of it,nor would  I  have  expected  he had…but now he's  curious . Since it is something  that can be tested , and ruled out. Toss in a couple  hot pet scans , a hot MRI from the past year,and I'm  off to the races!

      What a relief ! 

      Aloha , 

      Bob

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    • Replies
        • March 4, 2017 at 4:49 pm
        casagrayson
        Participant

          Honestly, Bob, I don't know whether to say 'congratulations' or 'bless your heart'!  TEN primaries!  Although the way I am reading this those lesions would not be considered primaries but metastatic systemic disease? What are the treatment protocols?  How is this staged?  

          As an aside, it is *never* a good thing to be 'interesting' to the medical community.  wink

            • March 4, 2017 at 8:15 pm
            Bobman
            Participant

              Hey Susan…I wrote  that post with  a heaping spoonful  of sarcasm . If I  would  have wrote  the books worth of information  of how difficult  it has been here to get a simple  biopsy  , it would  read as a sad comedy . From being  told by my first oncologist  that the only treatment,  if I  ever metastasized  would  be interferon , to literally  taking 8 months to get an appointment  with my current  oncologist  after a second pet scan jumped from a previous  suv value of 6.3,to a now 8.3 in the same region. My understanding  is that is starting  to get kinda high! There's  not a melanoma  specialist  in this entire state. I'm  just winging  it here. If I   could  ever  get just the biopsies  alone,that I  still need,my primary  count would rise.I go into these appointments  armed only with what I've  learned  here,and any other research  I  have done. To date,no one I've  met knows squat out here about melanoma . I'm  remain  optimistic  that's  about  to change…..but I'm  about  to inquire  on this board  about pointing me  in the right  direction  on the mainland  of someone  who could  give me a consult at least.

              Bob

               

               

              • March 4, 2017 at 9:53 pm
              jennunicorn
              Participant

                Hey Bob, wow, you've definitely got something unique happening. Gary (Polymath) is also in the Aloha state but flies over here to San Francisco to UCSF for his melanoma specialist. I also go to UCSF. I would highly recommend flying on over and seeing one of our excellent melanoma oncologists. 

                Here is their site with phone numbers and info: https://www.ucsfhealth.org/clinics/melanoma_center/

                Dr. Daud and Dr. Algazi are the big names there and have been in this world for a very long time. My oncologist Dr. Tsai is newer but also deep in the research and very knowledgeable. They all work as a great team. You definitely need to see someone who has actually heard of this rare form of mel and get their advice on what to do. 

                All the best,

                • March 4, 2017 at 10:05 pm
                Bobman
                Participant

                  Thank you kindly  Jenn. Yeah  it's  time to get going on this outside  of this state. I've  gone as far as I  can here,and am just spinning  my wheels  now as the disease  trudges on. It took awhile  to exhaust  the resources  here, such as they are,but my eyes  are wide open now. I will get in touch with that group  first thing  Monday morning .  I have read everything  from you and Gary ,as well as everyone  else over the year's . I've  been in a rut, but am motivated  to get some intelligent  answers.

                  Mahalo ! 

                  • March 9, 2017 at 2:51 am
                  BillMFl
                  Participant

                    I  knew Dr Daud when he was here at Moffit Cancer in Tampa Fl. He was kind enough to agree to make a presentation at a MRF symposium in Orlando a few years back when I explained how helpful this group is for patients around the country. At the time I had recently been treated for my first primary at Moffit and had earned volunteer of the year award for conseling new patients at the clinic. Dr Daud is a very kind and gentle person. UCSF is lucky to have him.

                  • March 5, 2017 at 3:01 am
                  Polymath
                  Participant

                    Hey Howzit Bobman,

                    Yup, not a specialist in the state, and although my care in Honolulu has been several notches better than your's on the Big Isle, the knowledge base here is in the shallow end of the pool.  I was in a similar place upon an orginal Stage III diagnosis but before I could even decide not to do interferon, I was declared Stage IV, unresectable, so many more more treatment options opened up.  But it was not until I made that trip to UCSF that my care got into the right hands and now in 5th year of the fight, I'm still here, and actually doing quite well for now.  Make the trip.  It's your life we are talking about.

                    Gary

                      • March 5, 2017 at 4:20 am
                      Bobman
                      Participant

                        Hey Gary,

                        Man I appreciate  more than I can say about  your  words. Reading  the replies  affirms what I've  known  for sometime  now. I've  lost precious  time navigating  the uphill  climb here. Right about  the time I  was first diagnosed , I  also went on SSI, and Medicaid  for medical . After what I think is about 7 years now trying to find anyone  who even takes my insurance ,has been a major  obstacle . In the beginning  a simple biopsy  was three flights  to Oahu .  One for the skin eval. One for the biopsy . One for suture removal. Unreal. Now I  do have a local surgeon  who can save me trips for wide excisions. I was in Honolulu  last week for the biopsy . Not sure how to get to the mainland  given my situation  with the medicaid , and living hand to mouth in the jungle  here in Puna district . Not feeling well  lately at all. The trip to Honolulu  wiped me out. If anyone  has suggestions,I will  investigate  to my ability  how to proceed .  I am doubtful  now that I  am even dealing with primary  disease . 

                        Many thanks  brother

                        • March 6, 2017 at 11:33 pm
                        Kim K
                        Participant

                          Try Dr. McElroy in Kona.  She is a dermatologist that is agressive with her melanoma patients.  None of this shave Bx baloney.  She did one of the better derm exams right up there with when I saw a derm in Atlanta in thier melanoma clinic.

                          Dr. Shane Morita on Oahu is very knowlegeable about mel.  I met him at my tumor board meeting where he chastised me for not following up with my stage 2A after moving back home to Hilo.  I had been NED over 3 years by then.

                          Anyay, I found him to be on top of the cutting edge treatments and has a strong research and interest background in mel., especially in different ethinc groups.

                          If anything I think the DOE needs educating here as my school bans the use of hats and sunglasses.  WTF?  Oh and sunscreen can only be applied at home.  My daughter painfully learned today that reapplication is mandatory.  It makes me sick to see her burnt neck and arms.  At least her face didn't get it too bad.  I also reminded her to reapply often.  I asked her this AM if she learned anything from this experience as I don't want her to burn again – ever!

                          Yeah, the travel to Oahu is a PITA.  Dr. Morita is from Hilo and occasionally has clinics here.

                          Mahalo,

                          Kim

                        • March 5, 2017 at 6:38 pm
                        dmturner
                        Participant

                          So would this be similar to what I am experiencing?  I have acral lintiginous melanoma.  Primary on bottom of right heel.  Right before 4th 10 mg-Yervoy notice a couple spot close to primary.  They called them satellite tumors/cells.  Had it cut out WLE.  Stopped Yervoy.  Then in Dec.  did PET scan lit up pelvic, abdomen, collar bone, heel.  Now I have 10-15 lesions close to the I guess the secondary (look like blisters but positive for melanoma).  They said no more cutting.  I started Opdivo/Yervoy combo and it seem to be like a fertilzer.  But they said I might be a slow responder and to see if they go down.  Not yet.  I have 3 treatments thus far.

                          Donna

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