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Odd Topic
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Odd Topic

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    • March 24, 2017 at 12:16 pm
    Hukill
    Participant

      I will speak with my pharmacist next week but I was wondering if anyone had any info on this. Before starting the ipi/nivo combo my wife and I were specifficaly told that we could not risk exchanging body fluids due to risk of transfering ipi/nivo to her. We were told to not even share bites of food or use the same spoon ect. We were also told to use condoms. Did anyone else on the combo receive this information when you started treatment? If so where you given a time frame after stopping treatment when you no longer had to worry about transfering body fluids?

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        • March 24, 2017 at 1:01 pm
        cancersnewnormal
        Participant

          Huh. That is interesting. Kind of funny… because my hubs and I would always joke about me giving him cancer… like passing along a virus… but then, I would always tell him that it was ok, because I was giving him Ipi too (and a year later Keytruda). HA! I don't recall ever having this chat with my oncologist. I know when I've had PET scans, I've been asked if I'd be near small children for the rest of the day. Yikes… ummmmm… nooooo… but I did have a teacup poodle at that time… soooooo.

          I could possibly see getting something infectious. But now I'm curious too!

            • March 24, 2017 at 2:50 pm
            Hukill
            Participant

              She was very direct and actually said think of it as if I had HIV and take precautions to not infect my wife. My wife had her tubes tied after our daughter in1986. It just seems funny when my wife and I, age 57 are standing at the condom section in the store and people are giving us strange looks. My wifes puts them in the little basket in the cart where they are on top. I am wondering since I have stopped the ipi if the nivo makes a difference as far as transferring in body fluids and creating an immune reaction in my wife.

              • March 24, 2017 at 3:35 pm
              Casitas1
              Participant

                Condoms yes… The rest no.

                Best, Paul

              • March 24, 2017 at 4:28 pm
              jennunicorn
              Participant

                With a patient going through traditional chemotherapy, this would be true for a few days after a chemo infusion, since those drugs excrete through bodily fluids. If your doc wasn't super familiar with immunotherapy, then they might give the same instructions they give to all of their patients. Just like the first onc I had who was a general onc and not mel specialist, told me not to eat sushi or raw steak while on Ipi… yeah, not so true for immunotherapy.. but good precaution for those on chemo. I eat sushi once a week.. 

                I was never ever told not to exhange bodily fluid with my significant other.. and we don't use condoms. Not sure if it may be a little different with males on the drugs and sperm.. but the only instruction I have been given is to not get pregnant.. otherwise, have at it! Hah.

                I am curious as to what my onc would say on this matter, so I'm going to ask her next time I see her. She's been working soley with immunotherapy since the beginning of her career, so she would certainly know if I wasn't suppose to give my immune boosted cooties to anyone 🙂

                • March 24, 2017 at 4:52 pm
                Gene_S
                Participant

                  My husband took Ipi and GM-CSF from Mar 2011 to Dec. 2013 and he was never told to not exchange bodily fluids.

                  • March 24, 2017 at 9:23 pm
                  Hriggenbach
                  Participant

                    In my ipi paperwork packed they hand u before starting there was a section in there if a man was given ipi to wear a condom but nothing in there about sharing foods cups anything like that

                    • March 25, 2017 at 7:15 pm
                    debwray
                    Participant

                      Been on the ipi nivo combo …no such advice.. Only not too get pregnant. By using reliable. Contraception including condoms.no advice re bodily fluidsat all.

                      Deb

                       

                      • March 25, 2017 at 7:15 pm
                      debwray
                      Participant

                        Been on the ipi nivo combo …no such advice.. Only not too get pregnant. By using reliable. Contraception including condoms.no advice re bodily fluidsat all.

                        Deb

                         

                        • March 26, 2017 at 2:33 pm
                        Bubbles
                        Participant

                          I have been following all things melanoma since 2003 and all things immunotherapy related since around 2007 or so when early, early trials began.  I feel certain that any "body fluid" concerns are solely related to pregnancy prevention.  Nothing more, nothing less.  Women on therapy are advised to NOT get pregnant and men on therapy are advised NOT TO GET anyone pregnant.  celeste

                          • March 27, 2017 at 7:52 pm
                          debwray
                          Participant

                            Strangely was looking at trial instructions re a trial involving T-Vec, trade named Imlygic… and the bodily fluids instructions were part of the criteria. I guess here it is to prevent passing on the herpes virus on which the treatment is based…..so perhaps instructions would apply to very limited melanoma treatments but only for a few days following  injection of lesions.

                              • January 9, 2018 at 6:58 pm
                              aaron_oakes
                              Participant

                                I agree, I am on the trial with imlygic and I was told to use condoms.  I also thought this was to prevent pregnancy and when I told them my wife had a tubal ligation they insisted as nature is strong.  I still can't get a striaght answer out of them if this is to prevent passing the virus or pregnancy but I really think it's both.  They are terrified of a pregnancy happening while a patient is receiving this drug so I'm not taking any chances.  

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