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Linny

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      Linny
      Participant
        Sorry to hear you’re going through a scary time. First off I am not a medical professional, but it is my understanding that melanoma cells will travel down to the nearest lymph node basin. If you had a melanoma removed from your stomach, then the cancer would most likely travel down toward the groin area rather than up to the armpit area.

        But, with your history of melanoma, getting the ultra sound done was a smart move. The lump that I had in my arm pit was moveable and didn’t really hurt. It also kept increasing in size. One doctor was able to hold it in her hand. Yeah, it was about the size of a chicken egg. ┬áThe ultra sound should tell the doctors what they need to know. Lymph nodes do get larger when they’re trying to fight off an infection, but then they shrink back down again.

        I hope that whatever they find is benign.

        Linny
        Participant
          I am so saddened to hear of Mike’s passing. He was a fighter to the end. He was quite ill last January and I wasn’t sure he was going to make to Easter. But he fought this thing tooth and nail and got in some precious time with his loved ones through Thanksgiving. Rest in peace, Mike.
          Linny
          Participant
            Sorry to have to welcome you here. Learning you have a melanoma diagnosis sucks and it feels like the rug has been pulled out from under you. Whenever I had fear and negative thoughts creep in, I’d try to remind myself that my scan results and skin exam results were normal. I was also seeing doctors on a routine basis. So, I was being frequently monitored and if there was something suspicious going on it was going to get caught early. But getting to that frame of mine while you’re still in shock is not easy.

            I was Stage III right out of the gate because I didn’t have a mole. At one point I did and my body’s immune system zapped the melanoma cells from it but a few managed to escape into a lymph node. This was in 2010. Yep — in November this year it will be 10 years for me. I opted to take part in a clinical trial for a melanoma vaccine that eventually was canceled because the placebo and vaccine groups were doing well, so the drug didn’t have as much benefit as was thought. But, the additional scrutiny was worth it.

            You probably will continue seeing a dermatologist at least twice a year for now. In additional to that, I am also assuming you will be seeing an oncologist. For the first year, oncologist visits will be every 3 months, 2nd year every 4 months, 3rd year – 5th year every 6 months. At those visits you will also be having scans and bloodwork done. If you opt for the clinical trial, they will watch you like a hawk and there may be even more frequent visits/followups.

            Best advice I can offer you is to resist the urge to research melanoma on line. There’s still a lot of scary stuff about melanoma on line that’s outdated. A lot, and I mean a LOT, has changed in 10 years in terms of treatment options. The fact that someone with Stage II melanoma has a clinical trial option for Opdivo is wonderful to hear.

              Linny
              Participant
                Definitely stop scoring the Internet for info. But, do have a read of the links that Bubbles provided from her blog. She has good stuff in her blog and it’s the best resource you can read that won’t freak you out.

                As scared as you feel right now, I was much worse off that you. I was afraid to even come here to ask questions. My diagnosis was confirmed in the month of December 2010. I had the WORST Christmas, New Year’s, and birthday that year. I sat on my couch for nearly a month and was the Queen of the “But What Ifs”. When I found I was sleeping only an hour or two at night I knew I had to do something so I asked my primary care doctor for help. She prescribed Xanax initially and when that wasn’t enough, she added an antidepressant. Those, along with some good friends helped me get back on track again. By February I had ditched both drugs.

                Bottom line is that if you’re so freaked out that you are not able to sleep, don’t be embarrassed to ask your primary care doc for some help. Your body and mind need rest.

                Once you have a treatment plan in place and you get used to that routine, the dust will begin to settle. The Opdivo trial sounds like a wonderful option. I wish it had been available when I was diagnosed. All I was offered was Interferon, Observation, and Clinical Trial. And, I was lucky that there even was a trial offered for Stage III patients. At that time, if you were Stage I or Stage II A/ B you had Observation only.

              Linny
              Participant
                Good to hear that you have just two more treatments left to go! Sorry to hear you’re feeling cooped up.

                I’m not sure where you live or in what state. I think that in areas of CA, TX, FL, GA, you need to be really careful. Also, in and around any urban areas you need to be careful, and even in the suburbs, where local parks can be crowded. If you’re in a space that’s well-ventilated and not crowded you should be fine. Maybe your local park is less crowded at a different time of day? Are you able to take walks around your block? Or sit outdoors? Even that’s better than nothing

                When Covid starting rearing its head in my county I was afraid to go out anywhere and I live in a rural area of PA. But I did take drives just to get out of the house and felt better for it.

                Linny
                Participant
                  Exquisite! It’s not often one gets to hear a piece for solo viola.
                  Linny
                  Participant
                    Thank you so much for the update! June 3rd will be here before you know it. Take those pain meds if you need them, especially if you can’t sleep at night because of Ziggy.
                    Linny
                    Participant
                      Yes. I was 3B from the get-go with an unknown primary. Diagnosed in November 2010 and still 3B.
                      Linny
                      Participant
                        Glad to hear the tumors are shrinking. Hope the docs can find a way to zap the Sigmoid tumor. Sending prayers and hugs to Mike and Hillary.
                        Linny
                        Participant
                          Thank you so much for this! For me, the timing could not have been better. I was just at Johns Hopkins yesterday for bloodwork, CT scan, and a visit with Dr Sharfmann. I’m in the 10th year of my journey and according to Dr Sharfmann, my scan looked good. I usually take that to mean, “no changes from the previous one(s).” So there’s some “double relief” here.

                          As far as the situation at Hopkins goes, I go to the their campus at Green Spring Station in Lutherville, MD. This was my experience yesterday:

                          My bloodwork is done in Pavilion II and when I walked into there, a man was handing out disposable face masks to anyone who requested them. The building, which is normally bustling with people seemed empty. The waiting room in the lab is normally packed with people and there’s always been a wait. Yesterday, the lab waiting room was empty and I got right in. There was hand sanitizer available EVERYWHERE. I was thankful for all the hand sanitizer and the lack of a crowd.

                          The rest of my day was spent at Pavilion III. The waiting room in the imaging area was full but not packed. Hand sanitizer was found everywhere. People were keeping a respectful distance from each other. The oncology waiting room had people in it, but it was not packed and you could easily settle into a “personal space”. There was more personal space to be had there than in the imaging area. Hand sanitizer was readily available. Dr Sharfmann normally shakes my hand at each visit, but this time offered me an elbow bump.

                          Linny
                          Participant
                            So sorry to hear about the double vision. The good thing is that it can resolve on its own. Vision therapy can help and there are eye doctors who specialize in that sort of thing. Since you’re already going to MD Anderson, I’d start by asking around over there. There are prescription glasses that can correct it, as well. Double vision can have any number of causes and it sounds like the most serious one has already been ruled out.
                            Linny
                            Participant
                              Boy, talk about a mixed bag of news! So happy to hear that the zombie-tumor is gone and that you’re no longer dealing with it. But that Sigmoid fella certainly is a pain in the butt — LITERALLY! Glad to hear that surgery is still an option for that thing. I was so happy to see your posts this morning. Been thinking about you daily and hoping that the surgery went well for you.
                              Linny
                              Participant
                                Sorry to hear that you’re in this situation. While this can indicate further metastasis, there are other things that can cause elevated LDH levels, such as strenuous exercise and muscle injury. Results can also vary, depending on which lab did the testing. Your doctor will be able to provide a better answer for you than I can.
                                Linny
                                Participant
                                  I was diagnosed in December 2010 after and enlarged lymph node was removed from my left arm pit. After my surgeon was given the results he gave me a skin exam and found nothing. On my second visit back, it was clear that he had consulted someone about my case because he took a look at my hands and finger nails and found nothing. He was just a general surgeon and referred me to Johns Hopkins in Baltimore, which then took over. I had a CT scan with contrast done at my local hospital that showed there was no suspected melanoma anywhere else in my body. At my visit to the melanoma department at Johns Hopkins I was seen by their melanoma dermatologist and a melanoma surgeon. At the visit with the dermatologist there, I was told that they were going to go over every square inch of my body and if a suspicious lesion was found, they were going to remove it. Not only did the doctor look me over, so did several of his students. Having medical students look me over seemed a bit over the top, but in retrospect, they were all looking to score points with the doctor so they were very thorough, which is a good thing with a suspected unknown primary. No suspicious lesions were found. The next step was seeing the surgeon, who told me they were going to remove the rest of the lymph nodes in my left arm pit after she gave me another skin exam.

                                  Bottom line is finding what may be a primary on your skin is done visually. It’s all the more reason to be seen at a medical facility with a department and doctors dedicated to melanoma. They deal with this stuff on a daily basis and know what to look for.

                                  .

                                  Linny
                                  Participant
                                    Oops! I made a mistake — Lucygoose was treated in Atlanta, not MD Anderson
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