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Has anyone received intrathecal topotecan for LMD

Forums General Melanoma Community Has anyone received intrathecal topotecan for LMD

  • Post
    Mk517
    Participant
      So about 16 months after brain mets, craniotomy, Srs, opdivo/yervoy x 4 and opdivo alone x 4, getting to NED, I now officially have LMD.

      I have 2 obvious, visible tumors in my spinal canal. One has been “debulked” by my neurosurgeon because the pain was so severe. Now going to be treating both the tumor targets with radiation.

      I am Braf + (I attempted taf/mek when I was first diagnoses stage 3 in 2028 but didn’t tolerate Mek at all and did a lower dose of tafinlar for a year) so I am being started on braftovi/mektovi.

      My neurological symptoms currently are mostly manageable. I was hospitalized about a month ago with severe headache, dizziness, leg weakness, nausea — at the time they couldn’t find anything but now more clearly symptoms of the LMD.

      My neuro-oncologist in NJ did his fellowship at MD Anderson and is suggesting IT topotecan. I can’t find much data on it used in melanoma (although it is documented that it has been used) but it’s well documented that it’s effective for LMD from breast cancer. My primary melanoma specialist does not like this idea and has put the idea in my head of a trial they are doing at MD Anderson with IT opdivo. It’s only a phase 1 and has less than 50 people in the study so there’s really no information about what is the “best option”.

      I am 37 years old and have a 6 and 4 year old and will do EVERYTHING that I possibly can to be around as long as possible. I know LMD is so rare and I am very lucky that it was caught while I am functional and able to fight. Any personal experiences in this area are welcome!!!

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        Bubbles
        Participant
          I am so sorry for what you have gone through and what you are facing. Here is the best data I can provide re IT and LMD in melanoma;

          Here is a report on Topotecan used as IT therapy for LMD in multiple cancers – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2613823/

          Points that stood out to me – “Topotecan is a water-soluble semisynthetic topoisomerase I inhibitor approved for systemic use in small-cell lung cancer and ovarian cancer. It has a broad spectrum of anticancer activity against many cancer cell lines, including hematological malignancies, colorectal, breast, non–small-cell lung, and ovarian cancer, and childhood solid tumors.” (Melanoma is not listed.)

          “Patients with primary CNS lymphoma and ocular lymphoma did well, with TTPs of 70, 78, and 68 weeks for the two primary CNS lymphomas and ocular lymphoma, respectively. These favorable outcomes may be related to the underlying biology of these tumors.”

          “The lack of improvement of outcomes using IVent [IT] topotecan over other therapies is disappointing…”

          My take ~ Only 3 patients in the study had melanoma. This report does not break down how they did. Follow-up was minimal on any patients. This report was published in 2008. I have to believe that if this were promising more would have been done with it by now. So – unless your tumor was tested for some mutation that was responsive to topotecan, this is not the route I would go.

          Here is a 2019 report I put on my blog regarding data on LMD with links to prior post within: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/03/leptomeningeal-disease-and-melanoma.html

          The literature has a fair number of case reports of individual patients who delayed LMD progression through the use of immunotherapy or targeted therapy in conjunction with radiation. Noting this because the radiation you have already had may serve you well whatever treatment route you choose.

          Here is a rather detailed report of LMD in melanoma – https://onlinelibrary.wiley.com/doi/full/10.1111/pcmr.12861

          Here is part of an article regarding the use of IT nivo in LMD for melanoma – https://ascopubs.org/doi/full/10.1200/OP.20.00146

          For what it is worth – I would look for IT therapy using an agent known to work on melanoma. In the states, perhaps the globe, MDA has done the most work for the longest on IT therapy with LMD in melanoma. In medicine (and most things) the best results come when you use the folks who do what is needed most often. 10,000 hours and all that! I also think that combining systemic therapy with IT therapy is not a bad idea. Not an expert., but someone who has been swimming in melanoma infested waters for a long time. I wish you my best with whatever you decide. Yours, celeste

            Mk517
            Participant
              Thank you so much for replying. I am not a big poster on this board but I have followed a lot when I needed to since my diagnosis and your insight is always appreciated. And as an RN myself, I always appreciate the help combing through the “real” literature!
            adriana cooper
            Participant
              I have been out of the loop for a while. Please take my advice only as my reaction to my past. Adriana’s Neuro-oncologist recommended IT DepoCyte as it had been effective and he had used it in trial. Both true for LMD breast cancer. I inquired about the fact that melanoma is chemo resistant. He assured us it was the route to go and that he had been in contact with her regular melanoma specialist. After ommya surgery, one treatment and weeks of chemical meningitis symptoms her melanoma specialist said stop the treatment as it is ineffective for melanoma. I barely could contain my anger. Near the end I inquired about the use of IT Anti-pd1 (keytruda/Opdivo) but was told that it likely wouldn’t be tried as it would be too strong. Months after Adiana’s death MDA announced just such a trial.
              What Bubbles says.
              I would get to MDA and talk to Dr. Glitza ASAP
              Missing you Adriana.
              Happy Thanksgiving
              Rob
                Bubbles
                Participant
                  Don’t know if you will see this Rob, but I think of you and dear Adriana often. I hope most memories are sweet. I am thankful to have had you both in my life. Always, les
                  adriana cooper
                  Participant
                    I think about you and all of your vast knowledge, kindness and how much you give to this community. I am grateful to have had you in our lives and do my best to honor you by paying it forward as best I can. You set a high standard.
                    I have been blessed in my life and consider myself very fortunate. I have many wonderful memories and am grateful for the time I got to spend with Adriana and all the experiences I have had because of her including sharing with folks on this board.
                    Best wishes to all of the patients, caregivers and family members on this board.
                    Rob
                    Rob
                  doxiemomsister
                  Participant
                    My sister, Carrie, whose posts you can find here as doxiemom, was diagnosed Stage 4 in early May 2017, three months later she had LMD, and she lived until October 2018. Although that may not seem like a lot of time, it felt like a windfall compared to the pre-immunotherapy timeline, and I’m sure there have been treatment advances in the last two years.

                    You can read her description of her treatment, up until she started IT IL-2 with Dr Glitza at MDA in July 2018. She might have had a better outcome if she went to MDA sooner, or if she received something other than IL-2. She wasn’t a good candidate for IT IL-2 in the first place, but she had exhausted other options due to their toxicity.

                    The Ommaya port was the best thing about the IT treatment because it relieved her headaches from hydrocephalus. The induction period at MDA can be 6 weeks+ or more. My sister didn’t have kids, and we were with her, but she regretted going to Houston (from NJ) because she missed home and friends.

                    I am so sorry for what you and your family are going through. My sister really valued this forum, and was especially grateful for Celeste’s and Rob’s knowledge and encouragement. I think they have given you the best advice. If it would be helpful for you to have more information about Carrie’s experience, I know she would want me to share it.

                      adriana cooper
                      Participant
                        Please know how much it means that Adriana’s story has helped you, your sister and any other family. Even though time passes and treatments change I hope that it continues to help others. I spent much time reading the stories  of others and reaching out to make contact. Communicating with others on a personal level (Artie’s mom, Cindy and Cindyco, Paul, Maperny- Maria her son and her husband, Mickey and Samantha Stamps, Connie, Mikhail and Anna and other helped immensely.

                        Best wishes and Happy Holidays to all here

                        Rob

                      SOLE
                      Participant
                        To all who have lost a dear one on this forum,

                         

                        Words are futile but they are one of the few tools we have to say something.

                        To Adriana’s husband; my humble prayers and respect to you.

                        I came here in 2016 and read your story as it unfolded.

                        Respect to all of you.

                         

                        M

                         

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