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Scan results at 6 months

Forums General Melanoma Community Scan results at 6 months

  • This topic has 3 replies, 3 voices, and was last updated 7 years ago by SOLE.
  • Post
    SOLE
    Participant

      Hi everyone,

      I wanted to share and ask your opinion on my PET/CT results. 

      Increased uptake at my original primary site compared to pre surgery. (SUV max 2.4 compared to 2.0). I believe it is due to inflammation of the scar still under my foot. It is slowly healing but takes a lot of time to ressemble to the rest of the skin. That was a complete skin graft and its still sore and a bit swollen at the end of each day. 

      One new hypermetabolic spot found in my knee just above at the sartotius muscle (no SUV reported). Evidently, I don't walk straight with my right foot and my body is off balance. Nurse said it can be that or many other things. Non specific at the moment. 

      One very small groin lymph node has enlarged and went from 3x2mm to 5x4mm. At that level, its not picking up any glucose and is not lighting up. 

      Everywhere else seems fine at the moment  

      Will see my oncologist when I return from my bussiness trip mid April. 

      My questions/advice to you

      1) What do you make of the single node that has doubled in size? I am finally considering having the CLND when I come back home. Even more if it can get me in a BMS trial… (not sure with my blood condition but I'm trying hard to get in somewhere.)

      2) Can only strain put on a knee allow it to light up? When its reported non specific with no uptake value, what does it mean? Would you worry? Why?

      3) Since I declined the only solution offered to me as adjuvant, interferon, and not having access to anything else (trials due to my blood condition or ipi because not available in Canada), does anyone know if buying myself a year worth of Pembro 9 months after dx can still be effective despite the "protocol" of the pharma trials of often 3 months? I will likely sell much of my assets in the coming months to try to get some systemic treatment in my body. I don't think there is any other way. 

      Thank you all. 

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        cancersnewnormal
        Participant

          That sounds like a pretty solid report! : ) To respond to 1 & 2…. I personally had a knee strain light up a spot on my left knee during a PET. It was not melanoma. I know this, because this was before Keytruda was started, and it never grew into a palpable nodule… yet I developed subQ's elsewhere on my body. This is what I found online for folks answering the question as to what "lights up" and the how or why ——-

          "It's not the cancerous tumor/cells per se that light up.

          Rather it's the contrast medium (radiotracer) that the patient takes.
          For cancer PET scans, the tracer solution is drawn to cells of any kind that have significant metabolic activity (blood flow, oxygen use, and sugar (glucose) metabolism):
          * Cancer cells have such, because that's what they do.
          * So do other cells that are working hard at the moment of scan: Always the heart muscle, the pancreas and other endocrine glands depending on the body's digestion, etc.
          The skill of the radiologists is necessary to interpret the results.

          PET scanning can give false results if chemical balances within the body are not normal. Specifically, test results of diabetic patients or patients who have eaten within a few hours prior to the examination can be adversely affected because of altered blood sugar or blood insulin levels. PET scans are used with CT scans (and possibly MRI's) to help determine extent of cancer activity. They aren't the end-all/be-all of diagnosis, but every oncologist should be happy to use them at appropriate times."

          "Lets see what I can come up with off the top of my had. Inflammation of any sort, as the result of any process, colitis, chrohns, any muscles that are injured, organs like rix mentioned (don't forget the bladder ;)), any form of infection of any organ, including lymphatic vessels, enflamed lymph vessels as a result of damage to any nearby tissues, any area disturbed by surgical operations for at least 3 months but up to 9 depending on the operation and ability of the patient to heal, lots of issues with diabetics that rix mentioned, ovarian cysts, uterine fibroids, damaged liver tissue via a whole variety of things that are not-cancer, is that enough? I'm sure there are more but yes, there are plenty of non-cancer things that PET scans will "light up" on"

          ——————————–

          As for #3… I don't believe I'd have opted for interferon either. That's just a personal thing. Buying Pembro… I don't know what they're going to charge you for that, but after seeing what came through on my billing and insurance paperwork… YIKES! You could be looking at over 1/2 million dollars in cost for roughly 12 months worth of infusions… and that's JUST for the drug itself, not including infusion materials, facility costs, doctor/nurse costs. Then you have to consider, that selling your goods and paying out that kind of money, is for what? A "maybe"? Maybe it will stop any potential future spread? What if maybe, you never have any further issue? What if maybe, Pembro is ineffective for your particular mutation? What if maybe, you end up with a debilitating autoimmune adverse side effect that costs you even more money to treat? From an outsider perspective, I would personally prefer to spend my money on counseling to help with my potential recurrance fears, than to put it into a drug that may cause additional physical problems… and may be completely ineffective anyway. If you sell much of what you have worked for in life, before there is solid evidence of a need to… you are giving your life to melanoma, rather than making it try to take it from you. Will taking Pembro ease your anxiety? Are you sure? Look at how many patients still have anxiety at EVERY scan, even years beyond NED status. I can tell you, that I'm not prone to worry much, which may make it difficult for me to fully understand what you are going through mentally……. However… I can also tell you… that as one who isn't prone to worry, I still get anxious every 2 months when brain MRI's come around. I still wonder every single time I get an odd pain or a headache, a muscle cramp, hell… I worry when I have gas pains in my intestines! HA! I did take some comfort once we had proof that Pembro was working for me. SOME comfort. There was always the concern of "What if it stops working? How long do I need to take this?"… and then the BIG kick… "I'm not getting infusions anymore. Is my body capable of handling this on its own?". It has been 8 months since my infusions stopped. I STILL have scan anxiety. I still get jumpy when something feels "off" with me. Take some time to think looooong and hard about whether or not taking this med will really help ease your mind. I understand you would like to "DO SOMETHING" and feel more proactive in taking on the mela-beast……… but, unfortunately, there are no guarantees. If these immuno drugs were 100% or even 90% effective for all patients, I'd pounce on it. But they're not. And how long you need to be on them, is still uncertain. What happens when your paid for supply is up? Be honest with yourself… are you going to feel better? Really? 

          You've made it this far. A six month scan that looks really good! You're tougher than you think. : )

            SOLE
            Participant

              Thank you Nikki for your words of wisdom. I have discussed ways with my oncologist to get the drugs from the Pharmas. It's a real possibility if I wanted to. The thing that makes me really uncomfortable is that canadian standard of care is light years behind the US. Even at stage 4. We don't have much leaway: either your scans show some response after 4 months max of injection or it doesn't and you are pretty much left with nothing else if it doesn't. So I guess the context of my last point is a bit more intricate. But I hear your point. My perpective comes from a patient who has a blood condition preventing him to do any trials, with no proper adjuvant therapy treatment and with very limited ways of having a real fighting chance if comes stage 4. 

            jennunicorn
            Participant

              That is a great scan! I would not worry about the knee situation or the enlarged lymph node. Lymph nodes, as we know, grow and shrink due to all sorts of reasons. If it had an SUV uptake, then I would further investigate with needle biopsy, but since there is no uptake there is no reason to suspect cancer.

              I agree with what Niki said about spending all your money on a drug with no promise of a result. That is a HUGE gamble… literally a million dollar gamble. Plus.. is that even possible? I have never heard of a patient being able to go directly to a pharmeceutical company and buy a drug, with no prescription or any doctor behind them.. I really don't think that is possible. Honestly, enjoy this GOOD scan. Soak up the fact that you are still NED! That is such great news! I don't ever want you to progress to stage 4, but if that happens in the future, then you'll have SO many good drugs to throw at active cancer instead of wasting money throwing drugs into a healthy body with no cancer. 

              My heart goes out to you. I want you to have peace in your life. We all deal with this struggle in our own way, and as much as I wish everyone could be in this with a positive attitude and gratitude for their current good place, I know it's not that easy for everyone. Do the CLND, I think that may bring you a little more closure. But, definitely seek some counseling or try and find a local cancer support group. It really helps to talk face to face with someone and work through the fear of recurrence.. something every cancer patient deals with.

              All the best,

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