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JuTMSY4

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      JuTMSY4
      Participant

        I mean, I can say that I had Plantar Fasciatis after a number of Keytruda infusions, but I can't provide a causal link.  There is some supporting research on joint pain and PD-L1, but probably not for that.

        The general treatment is what you're doing (dunno about acupuncture) and lots of rest.  I had to really slow down my exercise regimen until it went away.  It's gone now (about a year later) and I can run normally again.  YMMV

        JuTMSY4
        Participant

          I have an experience to offer, but no real advice:

          I allegedly have liver mets when I was first DXed stage 4.  That is now somewhat inconclusive.  What originally showed up on that PET (and later CTs) were 3-4 small lesions along with a slew of bone mets (making my treatment decision much easier).

          After treatment, the bone mets responded nearly instantly, but the liver mets remained and changed a little. After years of treatment, off treatment, recurrence elsewhere, etc., the liver mets remained.  We're now shifting to determining whether it's actually focal fatty sparing.  None of my liver panel has ever come back poorly. 

          So, it's really hard to say.  Keep in mind, a PET scan will be read in combination with a CT and MRI to give them the best views possible.  Ask to see them too!  It's really neat and the first time a doctor offered it was incredibly informative. 

          If you're asking if it's possible for the melanoma to go from your lymph nodes to liver – yes.  Stage 4 melanoma often progresses to the trunk in some fashion.  If you're asking whether this is cancer, I certainly don't know and your doctors are likely working hard to figure that out too.  Give them a chance to get as much info as possible.

          JuTMSY4
          Participant

            I had this.  All advice is good.  I'd set up an appointment now.  My podiatrist said that the odds of seeing one are pretty tiny, but he was very persistant in getting it checked out (he was right!).  

            However, most cases will prove to be a bruise or freckle or something else.  Appointments take a while, so get one on the schedule now and get in there.  Best case is peace of mind, worst case is a headstart or taking care of it!

            JuTMSY4
            Participant

              I would get a second opinion.  Bone and spine mets are miserable and you'd probably like to seek some sort of treatment regardless, as soon as you can.  My experience has been that most oncologists err towards it being disease because of your proximity in time to melanoma recurrence (and stage IV recurrence at that).  I can see how an oncologist might be suspicious of a melanoma recurrence some 15 years later, but 1-2 years seems far more plausible (but always impossible to tell).

              Still, it doesn't mean it's melanoma, but certainly, there's a decent chance it could be and is probably anyone's first guest as to how you developed lesions on your back.  Plus, your next treatment option (Pembro or Nivo most likely) is more benign than Ipi, so you might not have quite the wild ride you had before.  Speaking as someone who did Ipi and then Pembro.  

              Good luck and I wish you the best!

              JuTMSY4
              Participant

                oh this is fun:

                From surgery:  I can't feel the top of my left thigh.  I have (and continue to) keep my cell phone in my left pocket and I never feel it vibrate haha.

                From immunotherapy:  I have dealt with various dry skin/exzema conditions on my hands for years.  Somehow Keytruda made it go wild (and move to my feet) before entirely clearing it up on my hands.  Like, my hands became super dry and calous-y and now it's all but clear – no major dry spots, cracking, spliting, etc.  From my doc "Well, I guess that's just another thing it can do.

                JuTMSY4
                Participant

                  A whole day?!  One of the benefits I've had with Pembro is that I can get to my doc's office by 2 and i'm out the door by 5 or 5:30.  I guess they do labs and mixing on site and…strategically, but it seems crazy that it takes 2 hours to process the labs or 1.5 hours to mix the pd1/L1.  

                  JuTMSY4
                  Participant

                    Yes – you'll learn it's a far more imperfect science (radiology) that you want it to be:

                     

                    1) my bone tumors which are very likely dead and rebuilt(ish) still show on CTs

                    2) My liver tumors are a big ???  Might be some sort of NAFL – I've been losing weight (on purpose) to see if I can clear that up.  

                    3) Certain nodes are always sorta slightly popping – hard to say, but lymph nodes do that.  

                    4) It took a long time for everything to get close to a level where the doctor felt the cancer was dying (2 years)?  People react differently – it's just hard to know even with several years of treatment experience in clinical settings.  

                    JuTMSY4
                    Participant

                      Are you saying you've had (I assume) surgery to remove melanoma from your lymph nodes and now you're experience chest pain with cold-like symptoms?

                      I had a lymphadectamy to remove nodes in my groin and even follow up in my kidney before a scan revealed that the chestpain I suffered from was cancer spreading to my rib cage (bones), sternum, etc.  I did not have any cold-like symptoms.  My pain was similar to the tightness you get after lifting weights (especially if you just started).  However, I encourage you to do two things: 1) Talk to your doctor and perhaps be persistant about scans and 2) Relax – ymmv and it's really hard to predict similar symptoms.  

                      JuTMSY4
                      Participant

                        Probably fair to say your mileage will vary.  Some folks have significant reactions and probably need some serious time off, some (like in here) have friday treaments and can handle work by monday and some, like me, have very limited reactions/side effects and go back to work the next day (or into work if I have it in the AM).

                        You best bet is to hope for the best but plan for the worst to the extent you can. I believe the percentages bear out that it's more likely than not you will be able to, but it's somewhat hard to predict.  good luck!

                        JuTMSY4
                        Participant

                          I had a subungual melanoma on my left big toe as well.  There was no possible margin control without (partial) amputation.  The short answer is, you can't or at least not covered by any insurance, get any form of immunotherapy.  Not sure a doctor would prescribe it either as standard of care for stages I and II are surgical mostly.  

                          My follow up question is…why?  Surgery at early stage melanoma is highly effective or at least a great tool in the toolkit that includes later use of immunotherapy (hopefully you won't have to find out!).  Immunotherapy has made MASSIVE advances but pales in comparison to surgery at your early stage.  I know it sucks to lose a toe (really, half a toe!), but it's far better than the alternatives.  Left between a choice of surgery/amputation and immunotherapy, with their relative results, I would take surgery/amputation 10/10 times.  

                          I'm a relatively young person, but I will say that I run, bike and play rec sports w/o issue (and without half my left big toe!).  If your concern is activity, you likely won't have a problem.  If your concern is looks, that's fair, but it's far better than the alternative.  

                          JuTMSY4
                          Participant

                            pics of?  If you're going to post a picture of your skin and ask if it's melanoma, you're going to get several posts telling you to go to your doctor/derm.  I will preemptively say that.

                            Anything else and the advice below is correct.  Links work best!

                            JuTMSY4
                            Participant
                              Hey, thanks Ed.  Glad to know I’m not alone.  I thought it would be pretty smooth sailing.  Oh well, as I’ve continued to say, if this is the worst of it, it is what it is.

                              I’ve heard about the side effects, but right now, the colitis is hard to control and has made the rest of my life very…interrupted!  Hopefully the prednisone knocks it out as we’re trying it today.  Thanks for your info – it actually makes me feel a lot less alone!

                              Cheers, Justin

                              JuTMSY4
                              Participant

                                "How folks react to immunotherapy and a melanoma diagnosis varies considerably mentally and physically."

                                Basically this.  I live in work in a major metro and I actually bike to my infusion and then either bike back or home depending on the time.  Others have had some pretty debilitating effects including severe weakness and a variety of other ailments making that pretty rough.  Hope for the best, plan for the worst.  

                                JuTMSY4
                                Participant

                                  I have and it's basically this.  It wasn't that bad.  

                                  Ultimately they removed most of my toenail (it was damaged anyway) to perform a more complete excision.  In the long run, that wasn't that bad all things considered.  

                                  JuTMSY4
                                  Participant

                                    After they found cancer elsewhere in my body, I received 4 infusions of Yervoy (Ipilumumab) as immunotherapy and Xgeva (denosomab) for bone growth/assistance.  That greatly reduced my physical symptoms (my bone mets caused tremendous pain in my back, shoulder and chest).  At the time, yervoy was the frontline stage 4 treatment and Keytruda/Opdivo were secondary.

                                    After that, scans still showed the cancer in my body, so we moved onto about 2 years of Keytruda (pembrolizumab).  About halfway through that, I was declared NED.  We stopped treatment about a year after NED.  

                                    I had a recurrence in my right adrenal gland earlier this year and I'm back on Keytruda for probably a year (we're talking about doing a clinical trial vaccine though).  However, I had scans about 1 month after surgery and just got some new ones back yesterday.  I'm NED again.  

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