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Update and Question
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Update and Question

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  • Post
    • February 21, 2022 at 1:43 pm
    Grace
    Participant
      Hi All,
      I posted several months ago… I am 34 with high tumor burden. Started on 2 rounds of Ipi/Nivo, then 8 weeks of BRAF/MEK inhibitors and then back to
      2 more rounds of Ipi/Nivo. I had a great response to BRAF/MEK and also a really good response switching back to Ipi/Nivo. In mid-December I had scans (8 weeks after the switch back to Ipi/Nivo), which showed that my tumor burden was continuing to decrease and all of my larger tumors were smaller. On December 17th, I started the maintenance dose of Nivo and I have now had 3 rounds of just Nivo. Last week (Feb 14th), I went for another round of imaging that showed that tumors in my body are continuing to respond really well! Tumors are completely resolved from my pancreas and soft tissues and larger tumors in my lungs and liver are decreased by 30%. The brain MRI was not as encouraging.. I have 3 new spots in my brain that will be treated with radiation next week.

      My question is, has anyone else encountered having a great response in the body but not in the brain? My oncologist says it happens, but not super common. I will have imaging again in 6 weeks and depending on what we see I will either start on the soon-to-be approved anti LAG3 or perhaps a clinical trial. I am of course disappointed by the new spots in my brain, but so grateful that the rest of my tumors are responding well and I have been feeling great!! I am having very minimal side effects and hopeful that the new rounds of radiation or LAG3 will be the answer for the brain mets 🙂

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        • February 21, 2022 at 10:21 pm
        Daisy2018
        Participant
          Hi Grace,
          I was following your posts. Thanks for an update.
          I can not answer your question but sounds like you have a great attitude and pretty good news. Despite minor hick up with brain Mets. Bran radiation or SRS is generally tolerated pretty well. You will sail it trough. Sounds like you have a good team of doctors too.
          I didn’t notice much of my SRS. They make a face mask or mold of your head, part of neck. It felt like a S&M play gotten wrong. I was offered to take a mask home and I politely declined.
          It’s nice you are feeling great. Do you mind me asking how’s your LDH levels look like?
          I have quite a few Mets liver, bones, couple things have visibly grown recently. Scary to look at the mirror. I can see them. After starting ipi/nivo I have been hurting pretty much everywhere. Hurting a lot. Taking lots of pain meds. My LDH is pretty decent though around 250. I wonder how does it work Mets, pain, LDH. Is there any correlation.
          Hugs and well wishes your way!
          Daisy..
            • February 25, 2022 at 8:28 pm
            Grace
            Participant
              Thank you for the encouragement! My oncologist has never once measured my LDH levels and I have not asked about it. I hope your pain decreases soon!
            • February 23, 2022 at 12:33 am
            JudiAU
            Participant
              I can’t answer your other questions but I can say that brain met radiation was not as bad as I fearGoogled. Both for my non-cancer brain tumor and my melanoma met.
              • February 23, 2022 at 8:36 am
              Threefitty
              Participant
                One year ago, I was awash in tumors in my body and brain. Tx w/Nivo has caused that to fade with no new growth as to body.

                My brain received wide area radiation in March and SRS in October. My recent scan of the October response shows one mm growth in one tumor and 4mm in another that went from 16-20. The larger growth is also described as a “possible flair”, as 2 doctors disagree about the amount of hyperfusion in the area.

                I’m on wait and see for a couple months. Still on monthly Nivo. We have spoken about LAG trials, but as of now, it is hard to say that I am progressing and therefore have exhausted current treatment.

                Side comment; I’ve been stable on nivo for almost a year. But the moment “possible” growth in the brain occurred, the insurance doctor was jonny on the spot to cancel treatment due to progression (which was a minority opinion among oncologists). Fortunately my doctor has some gravitas in these matters. Be watchful.

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