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Crazy Progression

Forums Cutaneous Melanoma Community Crazy Progression

  • Post
    Summer S.
    Participant
      What is going on!

      I really donnow how possibly a cancer can be growing so freaking fast sometimes overnight and I am not even exaggerating!

      My mom has most her melanoma Mets visible in skin and lymph nodes, ever since targeted therapy stopped working and it has just been crazy growth.

      We started a heavy chemo therapy (DTIC+Cesplatin+ vinplastin) last week (cause we already tried immunotherapy and we also need a fast acting agent to control progression)

      However, nothing happened, absolutely nothing growth rates are still insanely the same, the lump on her groin lone progressed from a bing pong ball size to an orange size over 3 weeks.

      I am super scared, I donnow if that means chemo did not work as well or what has triggered this insanity.

      Any thoughts on that?

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    • Replies
        Bubbles
        Participant
          I am so sorry for what you and your mom are dealing with Summer. I don’t think that the chemo caused increased growth. Data shows that old school platin based chemo rarely attains a response in melanoma and only occasionally can something of a response be gained with DTIC. So, I fear the growth you see is simply what melanoma can do un-checked. Have you attained any clinical trial options for your mom since your last post on that topic? Hang in there. Your support is more beneficial to your mom than it may seem. celeste
            Summer S.
            Participant
              Hi Bubbles,

              Yes, I have shortlisted about 8 interesting trials across EU and US with our oncologist and am starting to reach out today — wish us luck

              Love,
              S.

              Summer S.
              Participant
                Meanwhile, we are increasing chemo dose, hoping to buy sometimes till we sort out the whole trials/Travelling arrangements
              jbronicki
              Participant
                So sorry on the progression Summer. Just to say again, every study coordinator, director and PI I talked to, they all agreed that calling the department at the Institution that the Principal Investigator is at for any trial you are interested in, is the quickest way. Even if you get a gatekeeper like the operator, just say your mom is interested in screening for the clinical trial (NAME). They should be able to get you to the PI or to the study coordinator in charge of recruiting for the study and working with the patients. Also, many times these institutions have a clinical research page, just as an example, here is the example from my institution: https://umhealthresearch.org/ For pages like these, you can search on Melanoma, etc and then if you click on the link to each specific study, you will also get a contact us button that you can use which most likely goes to the study coordinating team. I think Ed sent you the links for the highly regarded institutions closest to you that are doing TIL, ACT, etc. Many hugs, good luck, thinking of your mom.
                  Bubbles
                  Participant
                    I absolutely agree. I always tell folks – if you give a trial a passing thought – even though you feel as though you may not meet the criteria or may not even want to do it – if you are remotely interested in a trial – CALL!!! You have nothing to lose and possibly everything to gain. I’ve never found it that difficult to get to the coordinator. And perhaps more importantly, I gained entry into the nivo trial that saved my life when my husband called the institution about a different trial entirely!!! Hoping you and your mom find a workable treatment option soon! Celeste
                    jbronicki
                    Participant
                      That’s a really good point Celeste! I hadn’t even thought of that benefit of making contact, but you are right (and I’ve witnessed this several time myself) that most, if not all, of these Investigators all know each other, are familiar with who is doing what research, and travel in the same circles and professional realms and will point patients to other trials even if they don’t meet criteria for their own trial.! I just thank the research gods that you were in the NIVO trial!!!! Hugs to you too! and Summer you are really doing everything right for your mom, Hugs as the caregiver to such an important lady.

                      jbronicki
                      Participant
                        That’s a really good point Celeste! I hadn’t even thought of that benefit of making contact, but you are right (and I’ve witnessed this several time myself) that most, if not all, of these Investigators all know each other, are familiar with who is doing what research, and travel in the same circles and professional realms and will point patients to other trials even if they don’t meet criteria for their own trial.! I just thank the research gods that you were in the NIVO trial!!!! Hugs to you too! and Summer you are really doing everything right for your mom, Hugs as the caregiver to such an important lady.

                        Summer S.
                        Participant
                          Jackie —
                          Yes thanks for taking the time to write everything so precisely for me,
                          I took notes of all your comments, I am initiating my calls/emails campaign today – will keep you updated :))

                          Love,
                          S.

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