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Another punch in the gut

Forums General Melanoma Community Another punch in the gut

  • Post
    anxietyalldaylong
    Participant
      Hello everyone ! I am stage 4 under keytruda. My recent ct showed a substantial increase in size of one of my rib/chest wall mass with a linear ground glass opacity on its lower part and multiple new bilateral nodules in my lungs. Most of them are ground glass.

      My onc doesn’t want to switch treatments so I will be getting another scan in 2 months to see how things go. I have some questions to ask if you have any knowledge:

      1. Can the increase in size be pseudoprogression ? How could I know ? Also I don’t understand what the linear ground glass around the lower part is.
      2. What are ground glass nodules ? They are on both lungs mostly in the upper parts of them.
      3. If it’s not pseudoprogression won’t the delay of treatment make it worse ?

      Thank you in advance and I wish everyone to be healthy.

    Viewing 7 reply threads
    • Replies
        Daisy2018
        Participant
          Hi there,
          If I may make a little joke?!
          Your radiologist perhaps went to an art school before going to medical school?!
          None of my PETs/CATs the radiologists mentioned the terms of ground glass.
          When you goggle it this is what it says.

          Ground-glass nodules (GGNs) in the lung are lesions that appear hazy on computed tomography (CT), without obscuring underlying bronchial structures or pulmonary vessels. Both benign lesions including inflammation, hemorrhage, or focal interstitial fibrosis, and malignancies can present as GGNs.

          Sounds like yours are not dense/solid?! You can see through?!
          I think it sounds optimistic that your doctor hopes it is not a progression.
          You are not saying how many infusions have you had already?! This is an important information.
          If you had at least 4 or just 2?
          In your situation I would make an appointment for second opinion.

          Giving up on treatment is a serious decision. There are not many treatment options for possible cure available. In a blink of an eye it’s very easy to run out of options, although continuing treatment which doesn’t work is a waste of valuable time. Can he still have you get another infusion or two meantime?! Stoping treatment sounds pretty scary. I would disagree on taking two months break, I think.
          What was his rational for taking a break? If it’s working you should get more, if it’s not working 2 more infusions won’t make more harm I would think.
          Hugs and positive vibes to you!

          Bubbles
          Participant
            Hi anxiety,

            Wish I didn’t have to call you that!!! Not the biggest believer in “manifestation” creating reality but still!!!

            When lesions or areas are described as having a “ground glass appearance” on radiology reports – the radiologists are usually describing a hazy appearing area of inflammation. It can indicate many things. However, the history of the patient is what usually determines what the condition really is. For folks on immunotherapy it is fairly commonly found as a side effect of that therapy. It can be the first sign of or confirmation of lung inflammation related to the diagnosis of pneumonitis. It showed up many times on my films while I was being treated with Opdivo. If you are not having any shortness of breath, cough or wheeze – it probably just bears watching as your onc has planned. If you are having any of those symptoms – or they develop – you should reach out to your doc, because in that case, you may need additional treatment. My “ground glass reports” were accompanied by wheeze and cough. I also happen to have asthma. I was treated with inhalers I typically use for an asthma flare and managed it that way. If pneumonitis is severe patients are sometimes treated with steroids and may have to stop treatment. From what you have indicated, it doesn’t seem that you are anywhere near that point – but knowledge is power. In my clinical trial – and in many patients since – nodules can also develop in the lungs of patients on immunotherapy. That is of course concerning for any melanoma patient, but especially so when you have lung mets as you – and I – did!

            Here is a report – albeit old – that may interest you: Immunotherapy and pneumonitis

            Here is a post I made when I (and other patients in my trial) were dealing with “weird” lesions in our lungs on scans: Clear enough….

            As to pseudoprogression – without a biopsy it is very difficult to tell what a lesion is doing when it increases in size on scans. There are some radiologic studies that can show the difference in “hot” and “cold” tumors – meaning tumors that are actively growing vs those that are filled with debris, t-cells and dying melanoma. I wish that ctDNA (circulating DNA) from a blood draw were used more frequently in melanoma patients. [You can use the search bubble of my blog if you’d like to read more about ctDNA or pseudoprogression.] But, when used – especially sequentially – it can show if levels of tumor is increasing or decreasing in a patient and questions like those you have – Is this an increase in tumor burden? Should I change my treatment?
            Can be answered more accurately and more quickly than with scans. However, we are not quite there yet – so hang in there.

            Finally, though it is hard when you are the patient – Melanoma Big Dogs have long contended with immunotherapy –
            “Be patient with the patient!” It is known that immunotherapy takes time to work. However, when it is your own life on the line it is not easy to wait around.

            Hang in there. Hope this info helps at least a bit. celeste

            soonerjenn14
            Participant
              Hi there,

              I also had a “ground glass nodule” show up in one of my CT scans last year. My oncologist said it could be related to some type of respiratory infection or something like that. It was gone by my next CT scan. However, I have not had any lung mets so I can understand your worry. I was scared too until it was gone.

              I don’t know if this helps but wanted to share my experience. Hang in there and best wishes!!
              Jenn

              Daisy2018
              Participant
                Hi there,
                I wanted to add something since I m kind of in the same boat waiting and praying for immunotherapy to kick in, hopefully.
                I plan to have biopsies done to two spots I have grown since last scan. The lymph node and the bone in my sternum.
                I do have a history of growing sarcoidosis tissues as a response to immunotherapy which is quite rare side effect. It does look like cancer lesions on scans.
                We will do genetic testing of the tumor, if it’s a tumor again. We did it in the beginning of the treatments. Timors can change their genetic profile after several treatments have been done. Maybe we will find some other treatment option.
                The other reason is to see if is cancer or sarcoidosis. By doing biopsy they can see if there is a chance my body is responding to treatment. That’s my hope!
                You can ask your doctor to have biopsy done to see what’s going on.
                It’s unpleasant but it’s not a big surgery. They do it under local. Results are ready in couple days.
                It may save time and anxiety. Knowing is a power.
                anxietyalldaylong
                Participant
                  Thank you so much everyone for your kind replies ! I really hope that it’s not true progression but my gut feeling is telling me otherwise…

                  Does anyone know about ctDNA tests ? I was given the option of trying it. Do you have any experience with this ?

                    anxietyalldaylong
                    Participant
                      Sorry I have seen that Celeste has already recommended this. Celeste do you know how often I can do this to see the trend on the levels, since I don’t have a baseline value yet ?
                    Bubbles
                    Participant
                      Here are lots of reports on ctDNA: Circulating tumor DNA (ctDNA) the little bits of tumor floating in our blood and how they can impact melanoma patients

                      There are no clear standards for using ctDNA just yet. However, the more data points you have – the clearer and more accurate the predictive value. Generally, I would think that doing them on a schedule much like follow-up scans ~ every 3 months, then every 6, then annually. Something like that.

                      c

                      Sdmotorcop
                      Participant
                        I had Covid in February of 2000 (before testing was available). All of my CT scans from 2/2020 to around 10/2020 showed ground glass opacities. I went from stage 3C to stage 4 in June 2020 with lung Mets. All of my CT reports said the GG appeared to be viral in nature. It took a while for my lungs to heal up. If you’ve had covid, it might be worth looking into..
                        anxietyalldaylong
                        Participant
                          Thank you everyone again for your kind replies, you don’t know how much strength you’re giving me !!!!

                          The ctDNA analysis came back negative. Is this a good sign ?

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