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Home from Hospital Ippi induced diarrhea
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Home from Hospital Ippi induced diarrhea

› Forums › General Melanoma Community › Home from Hospital Ippi induced diarrhea

  • Post
    • March 21, 2012 at 4:10 pm
    Maxximom
    Participant

      I was admitted to OSU James Cancer Center Friday night to start IV Steroids for severe Diarrhea. I started to have diarrhea about 5 days before I was due to have my second Ippi infusion. I did have the second infusion last Thursday and then the next day, the diarrhea really accelerated and I was started on 20mg prednisone..it didn't help very much and they upped the dose to 20mg in the am and 10mg at night and still it was bad.I had to stay home all this time as I needed to be near the bathroom. I was hoping that Dr Kendra would get me onto Endocort..

      I was admitted to OSU James Cancer Center Friday night to start IV Steroids for severe Diarrhea. I started to have diarrhea about 5 days before I was due to have my second Ippi infusion. I did have the second infusion last Thursday and then the next day, the diarrhea really accelerated and I was started on 20mg prednisone..it didn't help very much and they upped the dose to 20mg in the am and 10mg at night and still it was bad.I had to stay home all this time as I needed to be near the bathroom. I was hoping that Dr Kendra would get me onto Endocort.. but that didn't happen. Friday I got the call to be directly admitted to the hospital to start the IV steroids.Things slowed down..but I still have diarrhea even with the IV steroids.Yesterday they let me go home after things got down to 7 movements a day..and started me on 1200mg of Prednisone.I am due to have Ippi #3 next Thursday..but of course that isn't going to happen with such a high dose of Pred.I believe that you need to be on 7mg or less to get the Ippi..I will take a long time to get weaned off such a high dose and I fear that I will have to discontinue the Ippi. I am BRAF negative and that doesn't leave many options open to me.I would hope to get into a anti PD1 trial..but there is  nothing near by to me.I really want to continue the Ippi..if they will let me..I can deal with the diarrhea  as unpleasant as it is.I know that many of you have gone through this..any advise or encouragment to very welcome..I am starting to think that contsipation is a beautiful word..LOL

      Joan

    Viewing 5 reply threads
    • Replies
        • March 21, 2012 at 4:27 pm
        Mandi0280
        Participant

          Hello Joan! My husband went through the same thing w/ IPI. I was put in the hospital for 6 days due to severe diarrhea and vomiting. He was put on steroids and eventually he got alot better. It took several weeks for him to get back to some kind of normal. He was on ipi as a study drug…i don't know if you are on study or taking it as a stage 4 drug as I forgot to look at your profile. The study would not allow my husband to continue the ipi due to having colitis in his stomach, They done and endo and colonoscopy while in the hopsital and it showed colitis which can be very dangerous. Dr said that if he took another treatment it would just happen again and it can cause holes in the colon and lots of diff things. I don't know if you were checked for this or not but i'm guessing you were not since you didn't mention it. Seems like they would have checked if they put you on such a high dose of steroids. He will now have the choice to start interferon in about a month if the colitis is cleared up. I'm not sure I like the interferon as i wanted him to hopefully continue the ipi but that is out of the question now. Hope things work out for you!

          Mandi

          • March 21, 2012 at 4:27 pm
          Mandi0280
          Participant

            Hello Joan! My husband went through the same thing w/ IPI. I was put in the hospital for 6 days due to severe diarrhea and vomiting. He was put on steroids and eventually he got alot better. It took several weeks for him to get back to some kind of normal. He was on ipi as a study drug…i don't know if you are on study or taking it as a stage 4 drug as I forgot to look at your profile. The study would not allow my husband to continue the ipi due to having colitis in his stomach, They done and endo and colonoscopy while in the hopsital and it showed colitis which can be very dangerous. Dr said that if he took another treatment it would just happen again and it can cause holes in the colon and lots of diff things. I don't know if you were checked for this or not but i'm guessing you were not since you didn't mention it. Seems like they would have checked if they put you on such a high dose of steroids. He will now have the choice to start interferon in about a month if the colitis is cleared up. I'm not sure I like the interferon as i wanted him to hopefully continue the ipi but that is out of the question now. Hope things work out for you!

            Mandi

            • March 21, 2012 at 4:27 pm
            Mandi0280
            Participant

              Hello Joan! My husband went through the same thing w/ IPI. I was put in the hospital for 6 days due to severe diarrhea and vomiting. He was put on steroids and eventually he got alot better. It took several weeks for him to get back to some kind of normal. He was on ipi as a study drug…i don't know if you are on study or taking it as a stage 4 drug as I forgot to look at your profile. The study would not allow my husband to continue the ipi due to having colitis in his stomach, They done and endo and colonoscopy while in the hopsital and it showed colitis which can be very dangerous. Dr said that if he took another treatment it would just happen again and it can cause holes in the colon and lots of diff things. I don't know if you were checked for this or not but i'm guessing you were not since you didn't mention it. Seems like they would have checked if they put you on such a high dose of steroids. He will now have the choice to start interferon in about a month if the colitis is cleared up. I'm not sure I like the interferon as i wanted him to hopefully continue the ipi but that is out of the question now. Hope things work out for you!

              Mandi

              • March 21, 2012 at 8:07 pm
              yoopergirl
              Participant

                Sounds like you had it worse then I did, the prednison pretty much stopped mine the second day I was home and I have been fine since, am tapering off now, down to 10 mg morning and 5 mg evening until SUnday and then 5mg twice a day. They never tested me for colitis either but since it has affected my eyes with the Uveitis they say no more ipi. I am hoping that you can continue with it I think they would have continues mine if it wasn't for my eyes. Contsipation is NOT a good word because that is what happened to me but am back on the Benefiber and that helps. I also am BRAF negative. I only wish you the best.

                  • March 22, 2012 at 3:27 pm
                  Maxximom
                  Participant

                    thanks Mandi and yooergirl for your replies.No I did not have a colonoscopy or a Endo while in the hospital. The week before I started my first Ippy I was due for my 6 year colonoscopy check up (my Father had Colon Cancer) and Dr Kendra wanted me to check things out BEFORE I started on the Ippy to make sure that all was OK..thanks goodness there were no problems.I continued to have the Diarrhea while on the IV steroids although it was much less than before.. but although it slowed down.. it did not stop. When I came home on Tuesday afternoon and started the oral Prednisone it was at the equivalent dose of the IV Steroid..1200 mg once a day.I was concerned on Tuesday night because I thought that the Diarrhea had accelerated again..but I had no issues sleeping and yesterday(Wednesday) thing settled down nicely and I only went about 4 times..which was a first for me in 2 1/2 weeks.I hope that this is the case today as well.Things are still liquid.. but at least not so often.I think that it will take a long time to wean me off such a high dose.. although I hear that they can accelerate the weaning process a bit.My blood sugars are out of wack for me and since I am still on such a bland and (for me) high carb diet.. I have to very carefully watch my blood sugars. I am getting bored with plain white bread,chicken and potatoes..I love salad and veggies.. but I don't dare right now.Thanks for the good wishes

                    Joan

                    • March 22, 2012 at 3:27 pm
                    Maxximom
                    Participant

                      thanks Mandi and yooergirl for your replies.No I did not have a colonoscopy or a Endo while in the hospital. The week before I started my first Ippy I was due for my 6 year colonoscopy check up (my Father had Colon Cancer) and Dr Kendra wanted me to check things out BEFORE I started on the Ippy to make sure that all was OK..thanks goodness there were no problems.I continued to have the Diarrhea while on the IV steroids although it was much less than before.. but although it slowed down.. it did not stop. When I came home on Tuesday afternoon and started the oral Prednisone it was at the equivalent dose of the IV Steroid..1200 mg once a day.I was concerned on Tuesday night because I thought that the Diarrhea had accelerated again..but I had no issues sleeping and yesterday(Wednesday) thing settled down nicely and I only went about 4 times..which was a first for me in 2 1/2 weeks.I hope that this is the case today as well.Things are still liquid.. but at least not so often.I think that it will take a long time to wean me off such a high dose.. although I hear that they can accelerate the weaning process a bit.My blood sugars are out of wack for me and since I am still on such a bland and (for me) high carb diet.. I have to very carefully watch my blood sugars. I am getting bored with plain white bread,chicken and potatoes..I love salad and veggies.. but I don't dare right now.Thanks for the good wishes

                      Joan

                      • March 22, 2012 at 7:20 pm
                      Gene_S
                      Participant

                        You can have bananas and blueberries for your fruit.  Both help control the diarrhea.  Boiled chicken and rice or I would make chicken rice soup with it myself.

                        Hope you get to feeling better soon.  Wow be careful with those high prednison and report it any  illness or bad feelings.  I had a terrible reaction to prednisone like the feeling of a heart attack which I reported immediately.

                        Also please be careful of those blood sugars.  I will be praying for you and hope you get to feeling better soon.

                        Judy (loving wife and caregiver of Gene Stage IV and on IPPI with GMCSF clinical trial for just over a year now)

                        • March 22, 2012 at 7:20 pm
                        Gene_S
                        Participant

                          You can have bananas and blueberries for your fruit.  Both help control the diarrhea.  Boiled chicken and rice or I would make chicken rice soup with it myself.

                          Hope you get to feeling better soon.  Wow be careful with those high prednison and report it any  illness or bad feelings.  I had a terrible reaction to prednisone like the feeling of a heart attack which I reported immediately.

                          Also please be careful of those blood sugars.  I will be praying for you and hope you get to feeling better soon.

                          Judy (loving wife and caregiver of Gene Stage IV and on IPPI with GMCSF clinical trial for just over a year now)

                          • March 22, 2012 at 8:52 pm
                          Maxximom
                          Participant

                            thanks Judy.. I am eating Bananas..the blueberries..I am a bit nervous about as things are still "liquid" at this point. I haven't used anything with much sodium in it for years as my husband was on Dialysis.. but since having the big"D" my sodium has been low so for the first time in ages I have been buying Campbell chicken and rice soup and actually using salt on my baked potato..I sure am not used to doing that.If I can take a chance and get to the supermarket (I need to find out where the bathroom is there first..just in case) I am going to buy a rotisserie chicken (skin off..when I eat it)

                            So far I have not had any reaction to the Prednisone..but I watch myself very carefully. I monitor my blood sugars  which were under excellent control before the steroids and adjust my insulin dose carefully..but it is really a learning curve because I am eating more carbs than usual.I hate being on such a high dose of prednisone..in fact I hate being on any meds if I can help it..but watcha gonna do? Thanks for responding hope that you and Gene are doing well

                            Joan

                            • March 22, 2012 at 8:52 pm
                            Maxximom
                            Participant

                              thanks Judy.. I am eating Bananas..the blueberries..I am a bit nervous about as things are still "liquid" at this point. I haven't used anything with much sodium in it for years as my husband was on Dialysis.. but since having the big"D" my sodium has been low so for the first time in ages I have been buying Campbell chicken and rice soup and actually using salt on my baked potato..I sure am not used to doing that.If I can take a chance and get to the supermarket (I need to find out where the bathroom is there first..just in case) I am going to buy a rotisserie chicken (skin off..when I eat it)

                              So far I have not had any reaction to the Prednisone..but I watch myself very carefully. I monitor my blood sugars  which were under excellent control before the steroids and adjust my insulin dose carefully..but it is really a learning curve because I am eating more carbs than usual.I hate being on such a high dose of prednisone..in fact I hate being on any meds if I can help it..but watcha gonna do? Thanks for responding hope that you and Gene are doing well

                              Joan

                              • March 23, 2012 at 2:55 am
                              NYKaren
                              Participant
                                Dear Joan,
                                I am so sorry that you’re going through this.
                                I really hope your docs can get a handle on it soon. Do they know how much you’re still going?
                                I have to start the bland diet–no diarrhea yet, just some pain, not terrible. I never knew about blueberries, so thanks for that info. Do you just eat them plain?
                                You’re in my thoughts.
                                take care,
                                karen
                                • March 23, 2012 at 2:55 am
                                NYKaren
                                Participant
                                  Dear Joan,
                                  I am so sorry that you’re going through this.
                                  I really hope your docs can get a handle on it soon. Do they know how much you’re still going?
                                  I have to start the bland diet–no diarrhea yet, just some pain, not terrible. I never knew about blueberries, so thanks for that info. Do you just eat them plain?
                                  You’re in my thoughts.
                                  take care,
                                  karen
                                  • March 23, 2012 at 2:55 am
                                  NYKaren
                                  Participant
                                    Dear Joan,
                                    I am so sorry that you’re going through this.
                                    I really hope your docs can get a handle on it soon. Do they know how much you’re still going?
                                    I have to start the bland diet–no diarrhea yet, just some pain, not terrible. I never knew about blueberries, so thanks for that info. Do you just eat them plain?
                                    You’re in my thoughts.
                                    take care,
                                    karen
                                    • March 23, 2012 at 12:55 pm
                                    Gene_S
                                    Participant

                                      Hello,

                                      You can eat plain or in anything like muffins.  They usually help slow.  Maybe in some yogurt even.

                                      • March 23, 2012 at 12:55 pm
                                      Gene_S
                                      Participant

                                        Hello,

                                        You can eat plain or in anything like muffins.  They usually help slow.  Maybe in some yogurt even.

                                        • March 23, 2012 at 12:55 pm
                                        Gene_S
                                        Participant

                                          Hello,

                                          You can eat plain or in anything like muffins.  They usually help slow.  Maybe in some yogurt even.

                                          • March 24, 2012 at 4:30 pm
                                          Maxximom
                                          Participant

                                            Karen..sorry to hear that you are getting some pain..but at least the diarrhea hasn't kicked in for you.If it does I assume that you will start the endocort..I really wish that Dr Kendra had at least tried it for me before the high doses of IV Steroids..maybe she never was able to speak with Dr Wolchock.The 1200 mg of prednisone I am taking have slowed things down during they day to about 4-5X but when I do go..it is pure water..there are no signs of any firming up at all.Once I take the Prednisone at about 5pm..I am fine until the next morning..I seem to have a little routine of my own.I see Dr Kendra on Thursday..but of course I will now be able to get the scheduled Ippy in fusion..I wonder if I ever will..and since I am BRAF negative..I worry About what will happen..I do want to get into a anti PD1 trial..but I can't afford to travel and live somewhere to get one.I haven't tried blueberries..but I did read someplace on line that a old Swedish remedy for diarrhea is DRIED blueberries brewed into a tea..works..I just can't get out to shop for dried blueberries right now as I can't leave my house (bathroom) for very long//maybe I can get my daughter to look around for me. The fresh ones..well I fear they will go out the way they came in..so I will not chance them right now. Hope that your pain goes away quickly.

                                            Love

                                            Joan

                                            • March 24, 2012 at 4:30 pm
                                            Maxximom
                                            Participant

                                              Karen..sorry to hear that you are getting some pain..but at least the diarrhea hasn't kicked in for you.If it does I assume that you will start the endocort..I really wish that Dr Kendra had at least tried it for me before the high doses of IV Steroids..maybe she never was able to speak with Dr Wolchock.The 1200 mg of prednisone I am taking have slowed things down during they day to about 4-5X but when I do go..it is pure water..there are no signs of any firming up at all.Once I take the Prednisone at about 5pm..I am fine until the next morning..I seem to have a little routine of my own.I see Dr Kendra on Thursday..but of course I will now be able to get the scheduled Ippy in fusion..I wonder if I ever will..and since I am BRAF negative..I worry About what will happen..I do want to get into a anti PD1 trial..but I can't afford to travel and live somewhere to get one.I haven't tried blueberries..but I did read someplace on line that a old Swedish remedy for diarrhea is DRIED blueberries brewed into a tea..works..I just can't get out to shop for dried blueberries right now as I can't leave my house (bathroom) for very long//maybe I can get my daughter to look around for me. The fresh ones..well I fear they will go out the way they came in..so I will not chance them right now. Hope that your pain goes away quickly.

                                              Love

                                              Joan

                                              • March 25, 2012 at 12:37 am
                                              NYKaren
                                              Participant
                                                Joan, did you alert Dr K. that you are still going so much & that it is liquid? I’m worried that you are/becoming dehydrated. Maybe there’s something you can take in the morning like Lomotil??
                                                Try not to look back at what might have been–I have to stop wondering what might have been if I had gone to Sloan first–would I have had almost immediate recurrence? I’ll never know.
                                                I am not a doctor but I really don’t think that you should be going this much–did Dr. Kendra say it’s normal? Please don’t wait till Thursday to ask. I know it’s the weekend, but they usually have emergency #’s.

                                                I’m pretty much sticking to a bland diet and taking Omeprazole and Pepcid and the pain is almost gone. Thanks for asking.
                                                Let us know how you are.
                                                karen

                                                • March 25, 2012 at 12:37 am
                                                NYKaren
                                                Participant
                                                  Joan, did you alert Dr K. that you are still going so much & that it is liquid? I’m worried that you are/becoming dehydrated. Maybe there’s something you can take in the morning like Lomotil??
                                                  Try not to look back at what might have been–I have to stop wondering what might have been if I had gone to Sloan first–would I have had almost immediate recurrence? I’ll never know.
                                                  I am not a doctor but I really don’t think that you should be going this much–did Dr. Kendra say it’s normal? Please don’t wait till Thursday to ask. I know it’s the weekend, but they usually have emergency #’s.

                                                  I’m pretty much sticking to a bland diet and taking Omeprazole and Pepcid and the pain is almost gone. Thanks for asking.
                                                  Let us know how you are.
                                                  karen

                                                  • March 26, 2012 at 6:05 pm
                                                  Maxximom
                                                  Participant

                                                    KAREN.. THANKS FOR YOUR REPLY AND CONCERN FOR ME.i APPRECIATE THIS SO VERY MUCH. i DID NOT CALL Dr kENDRA'S OFFICE OVER THE WEEKEND.. IN FACT i HAVE NOT SPOKEN TO ANYONE SINCE LEAVING THE HOSPITAL LAST Tuesday..NO CONTACT AT ALL.nO FOLLOWUP..i HAVE NOT BEEN HAPPY WITH THAT. i DID CALL FIRST THIS THIS MORNING (MONDAY) THEY CALLED BACK..i TOLD THEM i WAS STILL HAVING PURE WATERY DIARRHEA 3-6 TIMES A DAY..BUT ONCE TAKING THE prednisone AT PM..i WAS FINE UNTIL THE AM. they SAID THAT THEY(sorry I just saw the caps were on..I am such a bad typist) were going to UP the Prednisone another 20mg on top of the 1200mg I am already taking, until they see me on Thursday..but would get back to me later today to confirm this.I had a Endocrinology appointment this morning..I need to get some better control over my blood sugars.. they have been wonderful..until I started the Prednisose and now they are totally out of control for me..so I need some help to cope with better control while I am on the damm Prednisone. This Diarrhea shows no sign of leaving and it has been a month.I did get them to do blood work this morning to check my electrolytes.. I will get the results later today. I am staying well hydrated..but still my electrolyte levels have not been checked since I left the hospital on Tuesday..so I felt it needed to be done..thank goodness I can still run the show a little with my very lax endocrinologist..LOL…I love having some control!! Glad that you have stopped having pain..Bland diests are the pits..I miss veggies and salad so much.

                                                    Love and stay well

                                                    Joan

                                                    • March 26, 2012 at 6:05 pm
                                                    Maxximom
                                                    Participant

                                                      KAREN.. THANKS FOR YOUR REPLY AND CONCERN FOR ME.i APPRECIATE THIS SO VERY MUCH. i DID NOT CALL Dr kENDRA'S OFFICE OVER THE WEEKEND.. IN FACT i HAVE NOT SPOKEN TO ANYONE SINCE LEAVING THE HOSPITAL LAST Tuesday..NO CONTACT AT ALL.nO FOLLOWUP..i HAVE NOT BEEN HAPPY WITH THAT. i DID CALL FIRST THIS THIS MORNING (MONDAY) THEY CALLED BACK..i TOLD THEM i WAS STILL HAVING PURE WATERY DIARRHEA 3-6 TIMES A DAY..BUT ONCE TAKING THE prednisone AT PM..i WAS FINE UNTIL THE AM. they SAID THAT THEY(sorry I just saw the caps were on..I am such a bad typist) were going to UP the Prednisone another 20mg on top of the 1200mg I am already taking, until they see me on Thursday..but would get back to me later today to confirm this.I had a Endocrinology appointment this morning..I need to get some better control over my blood sugars.. they have been wonderful..until I started the Prednisose and now they are totally out of control for me..so I need some help to cope with better control while I am on the damm Prednisone. This Diarrhea shows no sign of leaving and it has been a month.I did get them to do blood work this morning to check my electrolytes.. I will get the results later today. I am staying well hydrated..but still my electrolyte levels have not been checked since I left the hospital on Tuesday..so I felt it needed to be done..thank goodness I can still run the show a little with my very lax endocrinologist..LOL…I love having some control!! Glad that you have stopped having pain..Bland diests are the pits..I miss veggies and salad so much.

                                                      Love and stay well

                                                      Joan

                                                      • March 28, 2012 at 6:18 pm
                                                      yoopergirl
                                                      Participant

                                                        How are you doing Joan? little worried about you still having the loose movements. Mine pretty stopped the second day home and have been fine since.

                                                        • March 28, 2012 at 6:18 pm
                                                        yoopergirl
                                                        Participant

                                                          How are you doing Joan? little worried about you still having the loose movements. Mine pretty stopped the second day home and have been fine since.

                                                          • March 28, 2012 at 6:18 pm
                                                          yoopergirl
                                                          Participant

                                                            How are you doing Joan? little worried about you still having the loose movements. Mine pretty stopped the second day home and have been fine since.

                                                            • March 26, 2012 at 6:05 pm
                                                            Maxximom
                                                            Participant

                                                              KAREN.. THANKS FOR YOUR REPLY AND CONCERN FOR ME.i APPRECIATE THIS SO VERY MUCH. i DID NOT CALL Dr kENDRA'S OFFICE OVER THE WEEKEND.. IN FACT i HAVE NOT SPOKEN TO ANYONE SINCE LEAVING THE HOSPITAL LAST Tuesday..NO CONTACT AT ALL.nO FOLLOWUP..i HAVE NOT BEEN HAPPY WITH THAT. i DID CALL FIRST THIS THIS MORNING (MONDAY) THEY CALLED BACK..i TOLD THEM i WAS STILL HAVING PURE WATERY DIARRHEA 3-6 TIMES A DAY..BUT ONCE TAKING THE prednisone AT PM..i WAS FINE UNTIL THE AM. they SAID THAT THEY(sorry I just saw the caps were on..I am such a bad typist) were going to UP the Prednisone another 20mg on top of the 1200mg I am already taking, until they see me on Thursday..but would get back to me later today to confirm this.I had a Endocrinology appointment this morning..I need to get some better control over my blood sugars.. they have been wonderful..until I started the Prednisose and now they are totally out of control for me..so I need some help to cope with better control while I am on the damm Prednisone. This Diarrhea shows no sign of leaving and it has been a month.I did get them to do blood work this morning to check my electrolytes.. I will get the results later today. I am staying well hydrated..but still my electrolyte levels have not been checked since I left the hospital on Tuesday..so I felt it needed to be done..thank goodness I can still run the show a little with my very lax endocrinologist..LOL…I love having some control!! Glad that you have stopped having pain..Bland diests are the pits..I miss veggies and salad so much.

                                                              Love and stay well

                                                              Joan

                                                              • March 25, 2012 at 12:37 am
                                                              NYKaren
                                                              Participant
                                                                Joan, did you alert Dr K. that you are still going so much & that it is liquid? I’m worried that you are/becoming dehydrated. Maybe there’s something you can take in the morning like Lomotil??
                                                                Try not to look back at what might have been–I have to stop wondering what might have been if I had gone to Sloan first–would I have had almost immediate recurrence? I’ll never know.
                                                                I am not a doctor but I really don’t think that you should be going this much–did Dr. Kendra say it’s normal? Please don’t wait till Thursday to ask. I know it’s the weekend, but they usually have emergency #’s.

                                                                I’m pretty much sticking to a bland diet and taking Omeprazole and Pepcid and the pain is almost gone. Thanks for asking.
                                                                Let us know how you are.
                                                                karen

                                                                • March 24, 2012 at 4:30 pm
                                                                Maxximom
                                                                Participant

                                                                  Karen..sorry to hear that you are getting some pain..but at least the diarrhea hasn't kicked in for you.If it does I assume that you will start the endocort..I really wish that Dr Kendra had at least tried it for me before the high doses of IV Steroids..maybe she never was able to speak with Dr Wolchock.The 1200 mg of prednisone I am taking have slowed things down during they day to about 4-5X but when I do go..it is pure water..there are no signs of any firming up at all.Once I take the Prednisone at about 5pm..I am fine until the next morning..I seem to have a little routine of my own.I see Dr Kendra on Thursday..but of course I will now be able to get the scheduled Ippy in fusion..I wonder if I ever will..and since I am BRAF negative..I worry About what will happen..I do want to get into a anti PD1 trial..but I can't afford to travel and live somewhere to get one.I haven't tried blueberries..but I did read someplace on line that a old Swedish remedy for diarrhea is DRIED blueberries brewed into a tea..works..I just can't get out to shop for dried blueberries right now as I can't leave my house (bathroom) for very long//maybe I can get my daughter to look around for me. The fresh ones..well I fear they will go out the way they came in..so I will not chance them right now. Hope that your pain goes away quickly.

                                                                  Love

                                                                  Joan

                                                                  • March 22, 2012 at 8:52 pm
                                                                  Maxximom
                                                                  Participant

                                                                    thanks Judy.. I am eating Bananas..the blueberries..I am a bit nervous about as things are still "liquid" at this point. I haven't used anything with much sodium in it for years as my husband was on Dialysis.. but since having the big"D" my sodium has been low so for the first time in ages I have been buying Campbell chicken and rice soup and actually using salt on my baked potato..I sure am not used to doing that.If I can take a chance and get to the supermarket (I need to find out where the bathroom is there first..just in case) I am going to buy a rotisserie chicken (skin off..when I eat it)

                                                                    So far I have not had any reaction to the Prednisone..but I watch myself very carefully. I monitor my blood sugars  which were under excellent control before the steroids and adjust my insulin dose carefully..but it is really a learning curve because I am eating more carbs than usual.I hate being on such a high dose of prednisone..in fact I hate being on any meds if I can help it..but watcha gonna do? Thanks for responding hope that you and Gene are doing well

                                                                    Joan

                                                                    • March 22, 2012 at 7:20 pm
                                                                    Gene_S
                                                                    Participant

                                                                      You can have bananas and blueberries for your fruit.  Both help control the diarrhea.  Boiled chicken and rice or I would make chicken rice soup with it myself.

                                                                      Hope you get to feeling better soon.  Wow be careful with those high prednison and report it any  illness or bad feelings.  I had a terrible reaction to prednisone like the feeling of a heart attack which I reported immediately.

                                                                      Also please be careful of those blood sugars.  I will be praying for you and hope you get to feeling better soon.

                                                                      Judy (loving wife and caregiver of Gene Stage IV and on IPPI with GMCSF clinical trial for just over a year now)

                                                                      • March 22, 2012 at 3:27 pm
                                                                      Maxximom
                                                                      Participant

                                                                        thanks Mandi and yooergirl for your replies.No I did not have a colonoscopy or a Endo while in the hospital. The week before I started my first Ippy I was due for my 6 year colonoscopy check up (my Father had Colon Cancer) and Dr Kendra wanted me to check things out BEFORE I started on the Ippy to make sure that all was OK..thanks goodness there were no problems.I continued to have the Diarrhea while on the IV steroids although it was much less than before.. but although it slowed down.. it did not stop. When I came home on Tuesday afternoon and started the oral Prednisone it was at the equivalent dose of the IV Steroid..1200 mg once a day.I was concerned on Tuesday night because I thought that the Diarrhea had accelerated again..but I had no issues sleeping and yesterday(Wednesday) thing settled down nicely and I only went about 4 times..which was a first for me in 2 1/2 weeks.I hope that this is the case today as well.Things are still liquid.. but at least not so often.I think that it will take a long time to wean me off such a high dose.. although I hear that they can accelerate the weaning process a bit.My blood sugars are out of wack for me and since I am still on such a bland and (for me) high carb diet.. I have to very carefully watch my blood sugars. I am getting bored with plain white bread,chicken and potatoes..I love salad and veggies.. but I don't dare right now.Thanks for the good wishes

                                                                        Joan

                                                                      • March 21, 2012 at 8:07 pm
                                                                      yoopergirl
                                                                      Participant

                                                                        Sounds like you had it worse then I did, the prednison pretty much stopped mine the second day I was home and I have been fine since, am tapering off now, down to 10 mg morning and 5 mg evening until SUnday and then 5mg twice a day. They never tested me for colitis either but since it has affected my eyes with the Uveitis they say no more ipi. I am hoping that you can continue with it I think they would have continues mine if it wasn't for my eyes. Contsipation is NOT a good word because that is what happened to me but am back on the Benefiber and that helps. I also am BRAF negative. I only wish you the best.

                                                                        • March 21, 2012 at 8:07 pm
                                                                        yoopergirl
                                                                        Participant

                                                                          Sounds like you had it worse then I did, the prednison pretty much stopped mine the second day I was home and I have been fine since, am tapering off now, down to 10 mg morning and 5 mg evening until SUnday and then 5mg twice a day. They never tested me for colitis either but since it has affected my eyes with the Uveitis they say no more ipi. I am hoping that you can continue with it I think they would have continues mine if it wasn't for my eyes. Contsipation is NOT a good word because that is what happened to me but am back on the Benefiber and that helps. I also am BRAF negative. I only wish you the best.

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