The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

mrsaxde

Forum Replies Created

Viewing 9 reply threads
  • Replies
      mrsaxde
      Participant
        Good luck to you! The TIL treatment can be a little rough in places, but when it works, it really works!

        -Bill

        mrsaxde
        Participant

          That sounds great! If I may ask, what trial are you in?

          -Bill

          mrsaxde
          Participant

            I did the TIL trial at NIH last year. Not counting the few days I was in hospital for the surgery, it was about 4 weeks from beginning to end. Week 1 was scans and such. Week 2 was chemo. Week 3 was getting my cells back along with IL-2. And the rest of the time was recovery and waiting until my blood counts returned to something close to normal. There were some rough parts, mainly the nausea and vomiting from the Cytoxan, and the fluid build up from the IL-2. But overall it was tolerable.

            I don't know if there has been any change in response rates as they tweak things, but I was told I had about a 50-50 chance. It didn't last long for me. I was sent home on April 14, 2018 and by November 29 I was removed from the trial because of progression.

            I received high dose IL-2. I haven't met or talked with anyone who has participated in a low dose trial. I do know that the docs told me that they had not found any correlation between the number of doses of IL-2 you receive and response rate. I was supposed to have 12. I could only tolerate 4.

            I hope that info is of some help.

            -Bill

            mrsaxde
            Participant

              Here's the best one I've found that isn't written mainly for medical professionals:

              https://www.verywellhealth.com/guide-to-the-ldh-test-for-melanoma-3010749

              Don't panic over your LDH level. I've heard people say theirs was over 1,000 and they were doing fine. It's just one of many markers your doctor can use to evaluate your condition.

              -Bill

              mrsaxde
              Participant

                That's good to know! If you live in a medical marijuana state, you might also want to see what you can find in the way of THC/CBD infused salves. I get a 1:1 THC/CBD salve at my local dispensary that takes away pain in a very short time.

                -Bill

                mrsaxde
                Participant

                  I understand your concern and confusion. I'm a retired teacher. In education progression is good and regression is bad. In medicine it's just the opposite. It took me months to get my head around that.

                  Good luck to you!

                  -Bill

                  mrsaxde
                  Participant

                    A PET detects radioactive decay from the radioactive sugar they inject you with. Cancer cells use sugar at a much greater rate than regular cells, and the scanner picks that up. A CT is at the basic level a very detailed x-ray.

                    PETs are good at identifying areas of increased metabolic activity. Many times that will be cancer, but there are also false positives from PET scans, in the case of things like infections and injuries, where metabolism is also increased. PETs are also not so good at picking out very small areas of concern — there's simply not enough metabolic activity there for them to pick up.

                    CTs don't identify hypermetabolic activity but they provide very detailed images. In my experience I got PETs early on, but once my cancer was definitely diagnosed I have gotten mostly CT scans, as well as MRIs.

                    I hope that helps.

                    -Bill

                    mrsaxde
                    Participant

                      Hi Sarah,

                      I see Dr. Sharfman at Johns Hopkins and he is great. I also hear good things about Dr. Lipson at Johns Hopkins.

                      Bill

                      mrsaxde
                      Participant

                        Hi Wayne,

                        I did the TIL trial at NIH last year. It got me to stable for about 8 months, then things started growing again. Here are some of my experiences.

                        As far as preparation, I'd say the best you can do is make sure you eat to keep your weight up. Your weight will likely increase, then decrease during the trial.

                        Out of the approximately four weeks, there's going to be a little more than a week of pure hell. Cyclophosphamide is not fun in and of itself — have an emesis basin handy. But for 48 hours while you get it, you're going to have to get up to pee every two hours, even through the night. The other three days of chemo, where you will only get fludarabine, won't be as bad.

                        After a little rest from that, you'll get your cells and IL-2. I only managed 4 doses of IL-2 before they stopped. My lungs were accumulating fluid and my doc was afraid I'd wind up in the ICU. I was on supplemental oxygen for most of the time I received IL-2.

                        When the IL-2 is done, things get better rapidly. At that point it's rest and recovery until your blood counts come back up. Then you get to go home and hope it works!

                        Let me know if there's anything I've touched on, or something I haven't mentioned, that you want to know more about. Good luck!

                        -Bill

                        mrsaxde
                        Participant

                          Hi Tony,

                          I'm sorry to hear you didn't make the trial. Although from what I've read, it's a double edged sword because elevated IL-8 corresponds to poor prognosis. Hopefully you can get into the other trial you mentioned.

                          I haven't even gotten to the screening process yet because my brain won't behave. So my doc put me on Temodar for at least a couple of cycles until I can get more radiation and hopefully get things stabilized in my tĂȘte.

                          Good luck man. I'll be thinking of you!

                          -Bill

                          mrsaxde
                          Participant

                            Hi again Erin, 

                            The pembro following the TIL treatment was another treatment arm. I was not put in that one because I had previously progressed on pembro and the docs at NIH didn't think I'd get any benefit from it.

                            I am BRAF negative. In a nutshell, here is my journey to the TIL trial:

                            I was diagnosed in January 2013. Went through the usual surgical procedures. After 23 lymph nodes were removed I was declared cancer free. That lasted a little more than a year. Had another wide area excision in Sept. 2014. More skin spots were found almost immediately afterward.

                            I started ipi in November 2014. It stopped growth while I was receiving it, but then things started growing again. At that point I had several small spots in my right lung as well as the visible skin spots. Because some people have a delayed response to ipi both my local oncologist and Dr. Sharfman at Johns Hopkins recommended a little patience. When new spots kept popping up I started pembro.

                            I received pembro for almost a year and a half. At first the results were remarkable. Three spots on my back, and several nodules in one lung began to slowly dissolve after only one pembro infusion. Then, in April of 2017 a CT showed a small spot on my right hilum. My local oncologist didn't think it was anything of concern, but to be on the safe side she ordered a PET. Several lymph nodes in my chest lit up.

                            The initial plan was to do radiation plus more pembro. I went back to Dr. Sharfman and he thought I stood a better chance in a trial. He enrolled me in the LAG-3 trial at Johns Hopkins. I was in it for 6 months and it did nothing (or at least very little) for me. That was when he told me that my only choices at that point were to try to get into the TIL trial at NIH or to take temodar. I opted for the TIL trial.

                            So that's what got me to TILs. Feel free to ask me anything else you'd like to know.

                            -Bill

                            mrsaxde
                            Participant

                              Thanks Ed! It's my background as an educator. I'm just programmed to explain things and to tell the truth. Gets me into trouble on Facebook sometimes. LOL

                              -Bill

                              mrsaxde
                              Participant

                                Thanks! I guess I should have also said that several skin spots that had appeared over the past couple of months appear to be stable and nothing new is growing on my skin. I know Temodar is a short term fix, but at this point I'll go with anything that improves my quality of life.

                                -Bill

                                mrsaxde
                                Participant

                                  So glad you're feeling better! I hope your scans bring good news. You're a beacon of hope for all of us.

                                  -Bill

                                  mrsaxde
                                  Participant

                                    Thanks for the link! Temodar is an old treatment now, but as someone observed, if it didn't help at least some people, it wouldn't be an approved treatment. Maybe this time I'll be one of the lucky ones!

                                    -Bill

                                Viewing 9 reply threads