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Can someone please help me here ??
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Can someone please help me here ??

› Forums › General Melanoma Community › Can someone please help me here ??

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    • December 3, 2019 at 9:19 pm
    sks2019
    Participant
      Refraining from posting this everyday as i undersand people are fighting much harder fights here and this might be people have posted many times here.
      My mom recieved her ipi/nivo 3 rd dose on Nov 9 . she had been to the ER 3 times,. Just came back from hospital after 4 days for fever,chills, nauseau ,vomiting and diarrhea.
      Its been 5 weeks and she lost 20 pounds in these 5 weeks. She is taking 60 mg prednisone, 3x day reglan, imodium for diarrhea , pantaprazole for acid reflex, probiotics, 2 types of antibiotics /9 flagyl and one more) and started marilon yesterday ( makes her dizzy) . She is still vomiting and and having diarrhea. Onc nurses just keep telling me to take her to ER and ER people tell me she has cancer and sends her home after giving some IV.

      I am just tired and frustrated how to control this and make her feel better. She isnt eating much except rice. how long does this lasts. Any other ideas here on how to control this better ? . i am out of words now just because I am so tired of seeing her miserable.

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        • December 3, 2019 at 10:14 pm
        ed williams
        Participant
          I put a link up last week for “Research to Practice” and will give you the link again. You have to sign up “Free” and once you have signed up go to “dermatological Oncology” find the link that has Dr. Mario Sznol listed, I think it is the 3rd one listed. He goes into great depth of how he manages side effects like diarrhea. By the sounds of things you really should have your mom’s team managing things and when it goes on like this, the need for IV steroids is probably needed since pills aren’t stopping the diarrhea “just my opinion, not a doctor” IV steroid tend to be absorbed better and at this point a discussion about inflixamab is probably not a bad idea depending on how often diarrhea is happening. https://researchtopractice.com/DOU119/Video/1?playlistIndex=2#t=11m57s
          • December 4, 2019 at 4:11 am
          Canadian melanoma wife
          Participant
            My husband received the ipi/nivo combo and after 8 doses we had to stop. We had the same trouble, though maybe a more sympathetic ER. He would vomit/diarrhea/not eat. Lost 60 lbs in 8 weeks. We would stay in the ER for a week so they could get him rehydrated and then we would go home and it would start again. Steroids. More steroids were the only thing that helped. I would like to impart that Jan 2018 was his stage 4 diagnosis and he is currently NED. Our oncologist theorizes that these types of events mean that the body is responsive to the treatment. I know I haven’t provided much in the way of suggestions but I hope I have imparted a little hope.
              • December 4, 2019 at 5:16 pm
              sks2019
              Participant
                8 doses ? wow ! , my mom could only tolerate 3 so far. Glad that he is NED and I wish him continued NED status. Do you mind sharing where is he being treated in Canada ? We are thinking of moving mom back to Canada ( Calgary ) but not sure about the treatment availability there so reluctant to do that as of now.
                • December 4, 2019 at 10:04 pm
                DoubleTT
                Participant
                  Hi there I am Canadian. I am a patient at Princess Margaret Cancer Centre in Toronto. My doctor is Marcus Butler. He is amazing and the hospital is in the top 5 in te world for research. But they also work closely with the The Skin Cancer Centre in Calgary. It is an excellent facility. Only three provinces in Canada are getting the top Melanoma specialists= Alberta, Ontario and Quebec. Go to their site and get an appt if you are moving there. Good luck
                  • December 4, 2019 at 10:19 pm
                  DoubleTT
                  Participant
                    Also meant to include that in Calgary the actual treatment centre would be The Tom Baker Centre…good luck
                    • December 6, 2019 at 1:36 am
                    sks2019
                    Participant
                      Thanks alot ! i have been looking at Tom baker centre. Mom is in the hospital today possibly for a colitis after her third ipi/nivo on nov 9. Going for an endoscopy and colonoscopy tomorrow.
                      She wants to quit the drugs. thanks for getting back. I always needs to vent for some reason.
                      • December 12, 2019 at 5:17 am
                      Canadian melanoma wife
                      Participant
                        We are in BC and his primary treatment takes place at the Abbotsford Cancer center. The lower mainland has a network of cancer centers that have different specialists and resources. Sometimes we have to travel to Surrey and Vancouver or Surrey for tests or appointments. We do have a shortage of doctors here though. We are fortunate to have a really great Oncologist. I can’t imagine being in a place without free healthcare. The added stress of medical costs must be terrible. I wish you so much luck and good health on your journey. Chin up, it is beatable.
                      • December 8, 2019 at 11:33 am
                      Tsvetochka
                      Participant
                        I see that you mentioned colonoscopy and endoscopy, does that mean you have a gastroenterologist on your team? I just started going to one myself, and it’s making all the difference! It was so nice to hear her attitude of colitis? No big deal. We’ll treat it and whatever other problems you’re having. She started me on a bunch of supplements and a few meds, but nothing big like steroids, and I’m feeling really good. Before I was also eating not much other than rice. Oatmeal was good, too.

                        So, I really suggest finding a good dr who will listen to you.

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