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aldrichdesigner

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      aldrichdesigner
      Participant
        Wendi,

        I’ve been stage 4 for almost 2 years now and dealing with Mel for 10, and let me tell you what. This Bitch don’t play, so if you have any chances of getting out in front of this then you should. The shave biopsy should have been enough to detect Mel. If not then they need to just go in and do a WLE on the thing.

        Please believe me when I say this is bad bad idea to ignore. Get a second opinion, they should be able to WLE with only local anastetic. You do not want to give a malignant mole 9 full months to spread further throughout your body and cause irreparable damage. My melanoma has spread past the point of return and modern treatment so now I just sit back and wait knowing it could be any day.

        Good luck in whatever you decide.

        aldrichdesigner
        Participant
          I second what John stated above …

          You are a survivor the moment you are DX whether you are stage 1 or stage 4. Assuming you are still alive, I believe that to be the only requirement. Melanoma is so sneaky and pesky that they won’t even give those lucky ones a “cured” tag. We are only allowed to be NED at best.

          That being said, congratulations to you on becoming free of disease and remaining stable. That is quite the accomplishment. Unfortunately, we don’t all get a positive result from ipi/nivo which sucks. Melanoma is a bitch.

          aldrichdesigner
          Participant
            Pump installed!!!

            It’s working but needs to be dialed in better over the next couple weeks. Plus my incisions need to heal which are causing their own source of pain but it’s different.

            I’ll let everyone know if it was worth it once that is complete.

            Until then, warrior on all!!

            aldrichdesigner
            Participant
              Ann,

              Can you explain when you say 2nd Keytruda attempt?

              I’m currently out of options after only getting a partial response from Keytruda and went thru ipi/nivo as well already.

              aldrichdesigner
              Participant
                Unfortunately, I would say anything is possible with this beast so its a good thing that its scan time for you. Fingers crossed its just a giant bruise or one of Dr pimple poppers lypomas (fatty benign tissue).

                But I wouldn’t rule anything out and make sure your doctor knows right away. My melanoma has gone almost everywhere at this point so could really show up wherever it wants. Not trying to worry you just saying to be cautious.

                aldrichdesigner
                Participant
                  Obviously bring this up to your Onc in case they want to check for mets, as they are certainly possible and they aren’t fun. I have them all through my spine and in my hip and shoulder. It’s all very painful, I’m on a lot of drugs.

                  Anyway that’s not what you asked. 10mg of prednisone signoficantly reduced my bone pain caused by pembro on top of the opioids that I already take. She should be have at least some kind of drug stronger than a few motrin available to her whenever she needs it. So talk to the onc right away and get some new meds and a possible ct scan.

                  aldrichdesigner
                  Participant
                    @cjm22 I too have been paralyzed recently from bone mets. How high up does your husband’s parallisis run? Mine goes from feet to about 5 inches above my belly button.
                    aldrichdesigner
                    Participant
                      It definitely needs to be dialed in and adjusted, I’m pretty much hurting all over right now since I’m on the entry dose that the doctor thought would match my fentanyl.

                      But I’m at the office now for them to titrate me up and make it work better.

                      aldrichdesigner
                      Participant
                        Thanks Celeste! I’m a little nervous just because it’s surgery but I’m so excited to have some daily relief from all the pain.

                        I just want to live out the rest of this year in as little pain as possible so I can enjoy the remaining time left even if it is way too short.

                        aldrichdesigner
                        Participant
                          Thank you Celeste,

                          I’ve always appreciated what you bring to this forum and the attentiveness that you grant every post on this site.

                          I am planning on using the Temadar after I heal from the pain pump operation. Until then, they are going to keep me on Opdivo just in case it’s still working to a degree.

                          As for T-Vec, I spoke to my Mel Doc at UofM and she explained that while we could probably do T-Vec for the subcutaneous tumors but that T-Vec is a singular treatment and so it wouldn’t affect the rest of the disease in my body. So for now, I’m not considering T-Vec an option. Not to mention it would need to be pre-approved by insurance and from the way I was hearing it, odds aren’t good in that department.

                          I looked into the right to try law stuff but didn’t come up with much in the way of melanoma drugs. Most research right now is all focused on combos to get PD-1 to work.

                          So, I’m going to focus on getting my pain in check again as well as give me a way to go up from where I’m at. The pain is only going to get worse and if I’m already at Max opioids then I need a new delivery method so that I can get the same effect with less drug.

                          aldrichdesigner
                          Participant
                            I’m planning to get the pump as soon as possible….

                            I was basically given my death sentence on Friday. Went to UofM for my second opinion and was told that I don’t qualify for any clinical trials nearby because of A. How advanced my melanoma is and B. I’m bed bound more than 50% of the day.

                            They have already exhausted all current effective treatments on me and my melanoma keeps finding a way around it. I’ve done 16 rounds of pembro, and all 4 ipi/nivos. They have told me that I can take temadar to try to slow progression and gain a little more time with my family but I need to get the pump first because they don’t want me having surgery after I start chemo for obvious reasons.

                            She forcasted that “without a crystal ball”, this is very likely my last year. That she was surprised I had fought as hard as I have and did this well based on how bad my Mel is/was.

                            So, I’m sorry Melanie, diet might be enough for some people but when you are missing chunks of bone because the cancer has literally disintegrated your spinal column and hip then come to me about diet. If I’m dying this year, it’s definitely not going to be in pain if I can help it.

                            aldrichdesigner
                            Participant
                              Erica,

                              Thank you so much for sharing Vince’s story with me. I had already decided last night that I’m going through with the pain pump as long as my clinical trial doc says it’s okay and won’t disqualify me. However, this story would have put me over the top if the pain last night hadn’t.

                              I’m only 35 and having to be on this much med for what’s looking like years to come. (Assuming I fight it off for that long) There is no doubt it’s going to start causing damage to my liver. The pain is only ever gonna get worse, I don’t need more and more meds. The pump is suppose to significantly reduce the dose but use it more effectively.

                              Also, you are the first and only one to respond to me about this which tells me that the scale of Vince and I’s bone disease must be kinda rare, at least I hope so because I know how terrible it is. So, I’m sorry for what you and your husband have had to endure. I know how strong my wife has had to be for me and my girls and there is no way I would have survive the last 2 years without her. So thank you for being you, your a strong woman and I hold nothing but respect for that.

                              aldrichdesigner
                              Participant
                                Celeste,

                                You are a miracle worker for this forum. I only wish they would update the tech on this site to be more inline with the latest forum tools and spam guards. Anyway, thanks so much for the additional info.

                                Scans did come back with progression so I’m going to be meeting with my doc up at U of M. She putting a packet together for me to discuss available options through clinical trials etc and Im sure we will discuss the SD-101 trial. Thanks again, I’ll keep you all updated on what I hear.

                                aldrichdesigner
                                Participant
                                  Yes, I read your blog about this, seems really intriguing and with some serious potential. Only issue is not only are there not any active trials that I can find but there definitely aren’t any near me. I’m in northwest Ohio so my only hope really is UofM, I could travel to penn or NY or something but I could never afford a trial in TX or FL. It would just cost too much to do the back and forth.

                                  I had my CT today so now I just sit back with fingers crossed and hope a good idea pops up soon.

                                  aldrichdesigner
                                  Participant
                                    PET scans are a lot harder to get approved by insurance. CT scans still offer enough insight without the need for a full body scan.

                                    At least, that’s what I’ve been told.

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