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Carlsbad317

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      Carlsbad317
      Participant
        My dad’s scan cycle after original petscan was every three months. Then after his last surgery it was changed up to CT scans and brain MRI every 8 weeks.
        Originally, we were confused because he went from pet to CT/MRI, but after a bit of research from blogs like this those are standard more than Pet.
        W
        Carlsbad317
        Participant
          My dad’s scan cycle after original petscan was every three months. Then after his last surgery it was changed up to CT scans and brain MRI every 8 weeks.
          Originally, we were confused because he went from pet to CT/MRI, but after a bit of research from blogs like this those are standard more than Pet.
          W
          Carlsbad317
          Participant
            Wishing you peace and comfort. Your family is in our thoughts and prayers.
            Carlsbad317
            Participant
              My dad has severe colitis from the Ipi/Nivo combo. Huntsman In Utah called it severe toxicity. His diarrhea most the time is of a water consistency and we cheer when it’ looks like pudding! He has been hospitalized twice and the only thing that has really helped control it is high doses of steroids- typically 80mg. Then a slow weaning process – and we have not found a balance. He has had 9 treatments of
              Remecade and entivio – which are like inflixmaub- they run about every two weeks to three weeks.. But again the steroids are what keep it somewhat in control.
              The downside is the swelling and water retention makes moving damn near impossible- this last he got weeping edema from the laying in the hospital for 13 days while the house doctors tried to fix the diarrhea- they did not want to take immunotherapy as the reason. They love to say c diff..
              good luck to you- I know not much help- but understand!
              Carlsbad317
              Participant
                Our oncologist said no to probiotics. For the reasons that your stated. It was shocking due to all the GI issues he was having.
                Carlsbad317
                Participant
                  Good Morning.
                  We live in Las Vegas and my dad has stage 4 metastatic melanoma.
                  He sees the onco at Comprehensive Cancer Center, there is one doctor that specializes in melanoma at the Sunset location- Dr. Wolfram. My dad has received great care, all doctors and staff are very compassionate and generally care.
                  We have traveled for second opinions to Huntsman Cancer Institute in Salt Lake City and the doctors have been fabulous with communicating as Huntsman has more specialists. At the urging of the Vegas onco, my dad will be undergoing surgery to remove his mass that was unsuccessful back in Feb 2019. Surgeons in Cegas did not agree with the risk, but Huntsman surgical onco Dr Hyngstrom is very confident with his ability to remove it.
                  Long story short, consider Huntsman, flights are $25 dollars each way and have discounts at near by hotels with shuttle services. Huntsman has offered excellent expertise and work well with all concerning local drs.
                  My email is [email protected].
                  Carlsbad317
                  Participant
                    Thank you! Your post this morning was awesome! This forum needs you!
                    Carlsbad317
                    Participant
                      Melanoma just sucks and that is coming from the daughter! A tough damn road and it all takes place so fast and out of nowhere.
                      Praying for you- don’t let to much time go by before you get the booty checked- being septic is no fun for the patient or caregivers!
                      Take care – praying for you – keep us posted!
                      Btw, when I first made this account the threads were looking for you- you had taken a small break from posting. From reading your responses to others and to me- can see why people missed you.
                      It’s nice to have people such as Ed and Celeste and yourself that make this site what it is for the new and not so new.
                      Carlsbad317
                      Participant
                        Good Morning Makes Mike! I am the daughter of the Carlsbad 317, when sharing information on the site it is a retell with his input. I try to keep in general, but when he wants to include something specific I do – and incidently in his voice as I write what he says.
                        To sum it up-
                        Two trips to the ER back to back- first was bleeding from the booty- nothing could be found wrong so discharged.
                        Following day another visit because an overall sick feeling.
                        He was septic with booty abscess right inside the booty cheek with surgical removal. Worst place due to liquid diarrhea and the challenge of keeping it bandaged.
                        Sever Toxicity due to Ipi/Nivo stopped after 3, with 20 day radiation. Been off Ipi/Nivo since June but the liquid diarrhea has not stopped.
                        Staycation in hospital extended due to in house docs treating chronic side effects
                        Of immunotherapy and not just the abscess wound.
                        Due to chronic issues from Ipi/nivo had to fight as a family for discharge home instead of LTC.
                        Finally made it out and adding to the above post learned getting home care is challenging due to the many docs from the hospital sending orders or lack of.
                        Currently on 80 mg of steroids a day to help control diarrhea until wound heals.
                        Hope this clarifies-!
                        Enjoy your stay with you brothers.
                        Carlsbad317
                        Participant
                          Thank you!!
                          Carlsbad317
                          Participant
                            Thank you!!
                            Carlsbad317
                            Participant
                              Thank you!!
                              Carlsbad317
                              Participant
                                That’s the plan! Looking forward to just the one, for sure!!
                                Carlsbad317
                                Participant
                                  Thank you for replying! All makes me feel better,. Wow, just the Nivo did all that to you? Starting the maintenance once the diarrhea subsides of Nivo, they made it sound so much easier on the body than the combo…… that does not sound easier! I really appreciate your sharing. I know none of this is easy but this website is the best resource.
                                  Carlsbad317
                                  Participant
                                    About 7 days after almost like clock work for my dad the show would drop.
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