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  • Post
    • June 21, 2018 at 1:50 pm
    happyfeet123
    Participant

      Hi Everyone:

      i have been reading the posts for awhile but never posted.  The information and responses have been very helpful in navigating and understanding melanoma.  My question is…..My last two pet scans has shown metabolic activiy in the opposite leg (thigh) of my primary leg tumors. The energy it is taking up has doubled.  My oncologist does not think it is melanoma because it usually does not go from leg to leg.  She stated she is going to keep the treatment the same.  I am currently stage 4 and receiving keytruda  for about the last year.  I was ok with this in the beginning because it didn't matter if it was or not the treatment was going to be the same.  But after the second pet scan showed it was gettin bigger I started to change my thought process.  I would think you would want to confirm if it was or wasn't melanoma.  This way you would know you have developed other lesions while on keytruda.  You could wait until the next pet scan to see if keytruda took care of it or decided to cut it out. I would think if it was melanoma the sooner you cut it out the better.  Though have it deep in your intermuscular muscle could be a long recovery. If not melanoma, what could it possibly be?  If anyone has ever experienced this or has input I would greatly appreciate your replies.  

      Thanks

      Happyfeet

       

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    • Replies
        • June 22, 2018 at 3:00 am
        BillB
        Participant

          I wish I could help but this s a decision you have to make. If your oncologist has a good sound reason for not doing it (experience, seen before ……….) and you trust her/him don’t do anything. But, you can get a second opinion, ask for an ultrasound or biopsy for more clarification unless they can’t be competed…..

          You have to be your own advocate and get th answers you need. 

          Bill

            • June 22, 2018 at 3:01 am
            BillB
            Participant

              are you NED, other tumors stable, lots of unanswered questions.

              • June 22, 2018 at 3:03 am
              BillB
              Participant

                Sorry, meant to ask f you have been NED and these areas are just lighting up over the past month, year, etc

                • June 22, 2018 at 4:59 am
                happyfeet123
                Participant

                  Hi Bill:

                   

                  Thanks for responding to my post.  No, I am not NED.  I currently have 2 tumors in the right leg that have shrunk significantly from the beginning, but not completely. I also had 5-6  mets in the lungs and the keytruda has melted all but one. The one has stayed  stable since the beginning. 3 mm.   I am not comfortable with my doctors decison regarding the other leg so I am heading to MD Anderson for a second opinion.  It showed up in my pet scan in Feb and we took the wait and see approach because she stated she did not believe it was melanoma. In May it double in size.  Again, she stated she does not believe it is melanoma.  Just wants to wait and see what happens.  During my June visit for every 3 week infusion I saw the nurse practiioner.  She agreed a should do a fine needle biospy to confirm yeah or ney.  I knew I would be going to MDA at the end of the month for a second opiniion so i waited.  My oncologist stated I could go ahead in July with the biopsy before or after my infusion. Of course, this is after I brought it up againt to the nurse navigator.  For me, I think my oncologist is very hard to communicate with.  I learned more about melanoma from this post and my daughter than my doctor.  I live 5 hours one way from the closes melanoma facility.  It ranks very high for melanoma treatment on the west coast. I am waiting to see what MD Anderson thinks and proceed from there.   So far, I am very impressed.  

                  • June 22, 2018 at 8:36 am
                  BillB
                  Participant

                    Hi, I too am n Keytruda and travel 5 hours each way for my infusions andmyoncologist at MSK in NYC. I just feel comfortable being there and everyone from the surgeons to oncologist.are great. Hopefully your local oncologist is correct but having peace of mind is extremely important for me.

                    good luck

                    bill

                    • June 22, 2018 at 12:56 pm
                    happyfeet123
                    Participant

                      Hi Bill

                      Thanks for the response.  We are on a very similar timelines.  Different locations for primary tumors, except mine never went into the lymph nodes straight into the blood system.  I have no real side effects except hypo thryoid which took awhile to get under control but it is finally back in the normal range and the norm fatigue/joint pains.  I think my body has adjusted to the fatigue and it's the new norm.  Though. on days I have a ton of energy and no pain.  Others, I am just pooped out.  Especially, if I over did it.  It may take a couple of days to recup.  Forunately, I was able to medically retire from my job and concentrate on my health and livin large.  My employer was not to accomodating, and it was putting to much additional stress on me.  My husband told me I have one life, I can always get another job.  Right now I am focusing on my health and family.  It does seem the every 3 weeks gets closer and closer together.  Sometimes, I feel like I just finished the infusion and it is time for another one.  Did your doctor discuss with you the overall survive rate for stage IV?  Mine kind of skirts around the issue.  Sometimes, I feel like I am on this ride with no clear destination or direction.  Also, another reason I am going to MD Anderson.  The nurses and the nurse navitgator provides me alot of answers to my questions.  Wishing you all the best in this journey.  

                      Happyfeet123

                      • June 23, 2018 at 3:35 pm
                      BillB
                      Participant

                        Hi, my doctors really didn’t address the survival rates except to say they are changing based on the anti pd-l1 immunotherapies. I know what the survival rates are if immunotherapy doesn’t work. They’re not uplifting at all. Yes, the three week period seems to get shorter and shorter every three weeks. I head back to NYC this upcoming week for Keytruda infusion #16. I consider myself extremely fortunate as I had a complete response to the Keytruda after 9 weeks. Side effects continue to build with fatigue and joint pain the most significant but nothing I can’t “ LIVE” with, right. My biggest fear right now is stopping treatment and recurrence. Just a new new normal for us. Good luck.

                        Bill

                        • June 23, 2018 at 3:39 pm
                        BillB
                        Participant

                          I forgot to add, going to Anderson is the smartest decision you will ever make. I chose to go to MSK, but would also go to Anderson in a heartbeat if it was closer. My doctors at MSK have been fantastic.

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