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› Forums › General Melanoma Community › Hi Family

  • Post
    • August 26, 2020 at 7:37 am
    MelanomaMike
    Participant
      Hi Family, im here, not as much as i said i would but, i just need to shut up and write when i can Haha…
      Well, where do i begin, as you all know its NEVER a dull moment in my world, the word “Pain” is used in my vocabulary probably more then anyother word these days, starting about the end of July, i began to have pains down in my “anal” area, literally the “sphincter” (the “Gates of Hell” as i call it!) and a bit more inside, but definitely the sphincter, inflammation, very sore, its not hemorrhoids my surgeon said, hes thinking its traumatized  “nerves”  that are healing and reattaching itself. I tell you all, my 9cm Sigmoid Tumor pain was the WORST pain ever but, this pain is different for one, but excruciating almost like pain i endured then. Scans doesnt show any abnormalities, a little constipation but nothing that would cause this amount of pain,(no abdominal pains) so, were doing the ol’  Watch & Wait game plan and see if it heals, if not, the ol’ Sigmoid Scope will team up with Jacques Cousteau and take a dive for a look see… Im taking Lyrica (good on nerves apparently) plus im taking Oxycodone and a low dose Methadone (5mg) also good on nerves unlike most typical opioids..
      Anyways, thats how bad it is, hot baths take a away the pain COMPLETELY can you believe that!? Water is basicly free, theres a slight abundance of it “AND” its not a drug or drug alternative snake oil or homeopathic boiled root broth, nope,  just good ol’ hot water on my ass (i just fill the tub up to my bum! Lol)  i told the wife to order me a plastic hospital pillow cuz the tub may be my new temp bed….I mean comon’ thats nuts huh? Hot water, who knew! My heating pad or pack doesnt do what a submerged butt in hot water can do!….I start my “newest” trial next Tuesday Sept. 1st,  Protocol #20193525 by Rubius Therapeutics, my med is RTX-240 a Monotherapy that co-expresses 4-BBL & IL-15TP  i guess its a fusion of IL15 and IL15 receptor alpha that could help me to improve anti tumor activity and whatever else it can do ill appreciate!!..ya guys, i hate to report to you but, i now have 2 new lesions, both in my Liver, one is 1.2cm the other is 1.7cm,  the 1.2cm one is in the region of the Hepatic Dome, the other, the 1.7cm is in the right Hepatic Lobe. So, so yah, it never fails, we kill one bastard in a place that caused terrible pain & then another Mel Monster pops up like what? a month later? Now my Liver? It sure does love to travel, it travels more then i do that lucky piece of feces!! You know its taken me about 3 days to write this, it hurts so bad, so i write bits at a time on my Samsung Notes app, pretty cool app then i just paste it to MRF! Im sure alotta of you do this…..oh, mind you, the pain i have isnt caused by my liver lesions apparently, (per Dr. Hamid) sounds about right, i know our bodies “can” be weird like that though, like having a tumor in your left foot but feel it in your right jaw area haha…
      Anyways my peoples, i dearly hope your not in pain as i am 80% of the time, i hope your all stable and kicking ass, and please, PLEASE excuse me for not being around like i use to, my life is different now in a lot of areas, a new chapter has started and im not liking this book at all…I love you all with all my heart…
               The one, but not the only,
                         Melanoma Mike!
    Viewing 4 reply threads
    • Replies
        • August 26, 2020 at 2:33 pm
        ed williams
        Participant
          Hi Mike, I have heard Dr. Hamid talk about 4-1BB (CD-137) for a few years now on his presentation series of future melanoma treatments. I wish you the best of luck on the trial and if it is ok with you I will put up two links, one to the trial and a second one from 2020 talking about 4-1BB. Take Care!!! Ed https://clinicaltrials.gov/ct2/show/NCT04372706 https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(20)30022-0/fulltext#%20
          • August 26, 2020 at 3:51 pm
          MelMel
          Participant
            Mike, it is always so unbelievably terrific to hear from you!!! I feel helpless and very sorry about the incredible amount of pain you are undergoing. Personally, I find pain to be the absolute worst. Fortunately, I consider myself extremely lucky because my severe pain was of relatively short duration. I had my hysterectomy and I remember the pain well. You said that hot baths help and this made me recall using a top toilet seat bath filled with epsom salts. I do not know if this is something your doctor would approve of but it is definitely worth asking since it speeds healing and helps with inflammation and swelling as well as bruising. Also, remember that nerves take the longest to heal and often up to a year or more. Unfortunately, that area is inundated with nerves as you well know and feel.
            On the liver front, maybe see if your oncologists recommends a liver biopsy. Liver is the main filtration organ and one can have cysts and hemangiomas which are benign and maybe even resolve themselves. I have these in addition to my melanoma tumors.
            “Simple asymptomatic cysts require no treatment as they can regress spontaneously [14], especially if their diameter ranges from 2 cm to 4 cm. Larger cysts (4 cm and above) can be monitored with repeated imaging, but if the cyst remains unchanged for two years, then the monitoring may be stopped [9].”
            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821393/
            The good news is that the liver can easily regenerate itself and personally, larger tumors (my initial was almost 7 cm plus multiple smaller ones) cause symptoms. Liver pain usually presents itself in the upper right back area and may spread to the right shoulder. At one point prior to starting immunotherapy, I was unable to move my entire right arm. Now that they are approximately the size of your growths, there is little to no direct discomfort.
            The key is to better manage your pain and help you heal mentally and physically. We miss you and your great sense of humor and friendly demeanor. I know that it is extremely difficult for you to write but even occasional short blurbs would be most welcome and those hopefully would not be so exhausting for you.
            I wish you the best on the new trial.
            Melanie
            • August 27, 2020 at 10:46 am
            tedtell1
            Participant
              Mike;
              Dang dude, sounds like the pain has really ratcheted up. So sorry to hear that. Hopefully you get some relief from that soon. It sure is good to hear from you. Hoping that the trial keeps everything shrinking! God bless and keep up the good fight!
              Ted
              • August 27, 2020 at 3:13 pm
              Bubbles
              Participant
                So good to hear from you, Mike!!!! Very sorry to hear that pain has become your companion AGAIN!!!! Hoping it is only the re-innervation of your nerves. That can certainly cause all sorts of weird and unpleasant sensations. Still I am so sorry!!! I am glad the warm baths help!!! Just hang out in the tub till pruney – rinse and repeat!!!! Ha!!! I hope you feel much better soon. Wishing my best with your upcoming therapy!! Love and hugs! celeste
                • August 27, 2020 at 10:59 pm
                jbronicki
                Participant
                  Hey Brother Mike, let me just say it speaks to your spirit and character, that you still manage to make me smile amid all that is happening to you. I wish more people would reference Jacques Cousteau and I’m old enough to get the reference 🙂 It is amazing that you put this out in the world, it does NOT go unappreciated. The pain, I don’t know what to say to that, if we could take it away and distribute it across us we would. I’m so sorry Mike. Like Bubbles, I’m hoping this is re-nerving going on. The nerves are so powerful and unfortunately also create really powerful pain. And traumatized nerves recovering are no joke. I’m keeping my fingers crossed for the trial, just started reading about RTX-240 trial. Hope to hear all about from you soon and more importantly hoping it works. You are SO important to our group and now you are even more important to SCIENCE as well. THANK YOU MIKE! HUGS!
                    • August 28, 2020 at 1:29 am
                    Mark_DC
                    Participant
                      Dear Mike

                      Thanks for writing – had wondered how you were doing (like most of us here!). I am sorry about the pain and wish it will soon vanish, I dont know anything about nerve damage or nerves re-growing but I hope they will recover and the pain go away. I also hope that you can conquer the new lesions – you are in a new world now w Dr. Hamid it seems, much better than before and this gives me hope, that he will try for you.

                      Hope you will soon feel better
                      Mark

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