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Just Need to Feel Heard…
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Just Need to Feel Heard…

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  • Post
    • August 20, 2016 at 11:10 pm
    Christine.P
    Participant

      I finished my 3rd dose of the ipi/nivo combo 2-1/2 weeks ago and for the first week there was no change in my side effects. Then, a week in, I was clobbered – really severe nausea, loss of apetite to the point I can barely eat (I've lost 6 pounds in the last 2 weeks without trying), nearly continual stomach cramps in the diaphragm area, increased fatigue, and increased heartburn. The past couple of days I have noticed that I have been sneezing a lot and have a lot of mucus in my throat (a cold, perhaps?). 

      I know that I need to eat and I sometimes feel hungry – until I acutally try to put food in my mouth. Most times I have to choke food down and can only manage about 5-6 bites at a time. I try to stay hydrated, but all beverages (water, juice, vitamin water, ginger ale, etc.) also make me feel like gagging. 

      I emailed my doctor the full description so I wouldn't forget anyting or get distracted by quesitons or comments and they called and told me to come in that day (last Monday). So I did. I met with my nurse pracitioner who did not listen to anything I said and offered platitudes like, "Yep. This is what it's like!" and "These don't mean your cancer has spread." Um. Yes, I know that. I am not an idiot. When I told her that I had to choke food down, she told me what to do if I start choking! 

      Needless to say, the whole visit was not just a waste of my time and completely disheartening, but I got no help. My 4th dose of the combo is this coming Wednesday and I am terriified of what might happen next. I know lots of other people have way worse sitiuations than I do, but I am mainly fighting this alone. I live in Rhode Island and my family is in Iowa. I have a couple of friends who help when I need them, but for the most part, I am alone. And this is just a lot to deal with alone. 

      I guess I don't even now why I posted this. I just didn't want to feel alone, I guess. I know all the advice – chin up! keep fighting! etc., but sometimes an understanding ear is all I really need. So, thanks for listening. And if anyone has any advice for any of these symptoms, I would welcome any and all ideas. I just can't imagine feeling this crappy for multiple months without some kind of help. 

    Viewing 20 reply threads
    • Replies
        • August 20, 2016 at 11:13 pm
        Christine.P
        Participant

          I should mention that I do take Zofran for the nausea and it used to help but now has very little effect. 

          • August 20, 2016 at 11:13 pm
          Christine.P
          Participant

            I should mention that I do take Zofran for the nausea and it used to help but now has very little effect. 

            • August 20, 2016 at 11:13 pm
            Christine.P
            Participant

              I should mention that I do take Zofran for the nausea and it used to help but now has very little effect. 

              • August 20, 2016 at 11:25 pm
              Patina
              Participant
                Hi Christine,

                Sounds like you’ve had it rough this week. It happens, but I wish it didn’t. It will get better.

                From some of the things you said I wonder if you have thrush. My Mom had it and she says that was what was going to kill her, not the cancer 🙂

                Thrush can make things taste strange or your tongue might burn. A sign of it is a white coating in your mouth.

                Your doctor can write a Rx for a mouthwash, but adding probiotic yogurts and taking sugar and carbs out of your diet help.- Use hydrogen peroxide on your toothbrush too.

                Good Luck!

                  • August 21, 2016 at 8:36 pm
                  Christine.P
                  Participant

                    Thanks, Patina. I don't have any white coating but will definitely keep an eye out for that. I appreciate your reply. 

                     

                    Christine

                    • August 21, 2016 at 8:36 pm
                    Christine.P
                    Participant

                      Thanks, Patina. I don't have any white coating but will definitely keep an eye out for that. I appreciate your reply. 

                       

                      Christine

                      • August 21, 2016 at 8:36 pm
                      Christine.P
                      Participant

                        Thanks, Patina. I don't have any white coating but will definitely keep an eye out for that. I appreciate your reply. 

                         

                        Christine

                      • August 20, 2016 at 11:25 pm
                      Patina
                      Participant
                        Hi Christine,

                        Sounds like you’ve had it rough this week. It happens, but I wish it didn’t. It will get better.

                        From some of the things you said I wonder if you have thrush. My Mom had it and she says that was what was going to kill her, not the cancer 🙂

                        Thrush can make things taste strange or your tongue might burn. A sign of it is a white coating in your mouth.

                        Your doctor can write a Rx for a mouthwash, but adding probiotic yogurts and taking sugar and carbs out of your diet help.- Use hydrogen peroxide on your toothbrush too.

                        Good Luck!

                        • August 20, 2016 at 11:25 pm
                        Patina
                        Participant
                          Hi Christine,

                          Sounds like you’ve had it rough this week. It happens, but I wish it didn’t. It will get better.

                          From some of the things you said I wonder if you have thrush. My Mom had it and she says that was what was going to kill her, not the cancer 🙂

                          Thrush can make things taste strange or your tongue might burn. A sign of it is a white coating in your mouth.

                          Your doctor can write a Rx for a mouthwash, but adding probiotic yogurts and taking sugar and carbs out of your diet help.- Use hydrogen peroxide on your toothbrush too.

                          Good Luck!

                          • August 20, 2016 at 11:42 pm
                          jennunicorn
                          Participant

                            I developed really bad GERD (gastroesophageal reflux disease) which made it hard to eat, felt like vomiting all the time, bad heart burn. My onc prescribed Pantoprazole and since I started taking that all of those symptoms are gone. I did test when I ran low on pills whether I still needed them or not so I stopped taking them and within a few days all the symptoms were back, so I might need to take this pill for a long time, maybe forever, but it's definitely worth it. My boyfriend is also on a medication for GERD, he's had it a long time, and he takes Omeprazole (Prilosec) and that helps him as well. Just something you might want to run by your doc and see if they think it could be something like that. There is over the counter Prilosec, could always test it out yourself to see if it helps at all.

                            So sorry you had such a crap experience with the nurse, I would be just as frusterated and disheartened. 

                            Hope you start feeling better soon.

                            • August 20, 2016 at 11:42 pm
                            jennunicorn
                            Participant

                              I developed really bad GERD (gastroesophageal reflux disease) which made it hard to eat, felt like vomiting all the time, bad heart burn. My onc prescribed Pantoprazole and since I started taking that all of those symptoms are gone. I did test when I ran low on pills whether I still needed them or not so I stopped taking them and within a few days all the symptoms were back, so I might need to take this pill for a long time, maybe forever, but it's definitely worth it. My boyfriend is also on a medication for GERD, he's had it a long time, and he takes Omeprazole (Prilosec) and that helps him as well. Just something you might want to run by your doc and see if they think it could be something like that. There is over the counter Prilosec, could always test it out yourself to see if it helps at all.

                              So sorry you had such a crap experience with the nurse, I would be just as frusterated and disheartened. 

                              Hope you start feeling better soon.

                              • August 20, 2016 at 11:42 pm
                              jennunicorn
                              Participant

                                I developed really bad GERD (gastroesophageal reflux disease) which made it hard to eat, felt like vomiting all the time, bad heart burn. My onc prescribed Pantoprazole and since I started taking that all of those symptoms are gone. I did test when I ran low on pills whether I still needed them or not so I stopped taking them and within a few days all the symptoms were back, so I might need to take this pill for a long time, maybe forever, but it's definitely worth it. My boyfriend is also on a medication for GERD, he's had it a long time, and he takes Omeprazole (Prilosec) and that helps him as well. Just something you might want to run by your doc and see if they think it could be something like that. There is over the counter Prilosec, could always test it out yourself to see if it helps at all.

                                So sorry you had such a crap experience with the nurse, I would be just as frusterated and disheartened. 

                                Hope you start feeling better soon.

                                  • August 21, 2016 at 8:37 pm
                                  Christine.P
                                  Participant

                                    Thank you, Jenn. Your empathy and advice help a lot. I already take Nexium (for pre-existing reflux) but will ask my doctor about the Pantropazole or something stronger than OTC to see if that helps. 

                                    • August 21, 2016 at 8:37 pm
                                    Christine.P
                                    Participant

                                      Thank you, Jenn. Your empathy and advice help a lot. I already take Nexium (for pre-existing reflux) but will ask my doctor about the Pantropazole or something stronger than OTC to see if that helps. 

                                      • August 21, 2016 at 8:37 pm
                                      Christine.P
                                      Participant

                                        Thank you, Jenn. Your empathy and advice help a lot. I already take Nexium (for pre-existing reflux) but will ask my doctor about the Pantropazole or something stronger than OTC to see if that helps. 

                                      • August 21, 2016 at 12:04 am
                                      ed williams
                                      Participant

                                        Hi Christine, Omeprazole can really help if you are getting acid reflux type symptoms. There is another drug that I uses for some time and then stopped is Domperidone 10mg, which helps relax the Esophagus to help with movement of food. I am sorry that the nurse was not helpfull, I usally hold my discussion of symptoms for my Oncologist since they specialize in what I am dealing with. Some times the nurse that you will see might also work for several different oncologists that deal with many different types of treatments and side effects. Best Wishes!!!!Ed

                                        • August 21, 2016 at 12:04 am
                                        ed williams
                                        Participant

                                          Hi Christine, Omeprazole can really help if you are getting acid reflux type symptoms. There is another drug that I uses for some time and then stopped is Domperidone 10mg, which helps relax the Esophagus to help with movement of food. I am sorry that the nurse was not helpfull, I usally hold my discussion of symptoms for my Oncologist since they specialize in what I am dealing with. Some times the nurse that you will see might also work for several different oncologists that deal with many different types of treatments and side effects. Best Wishes!!!!Ed

                                            • August 21, 2016 at 8:39 pm
                                            Christine.P
                                            Participant

                                              Thank you, Ed. I would have preferred to meet with my doctor, but was really hoping to get some help ASAP and she was out of the office for the last part of last week. I will definitely bring these all up again with her in my appt on Wednesday. I'll definitely keep this experience in mind next time. 

                                              • August 21, 2016 at 8:39 pm
                                              Christine.P
                                              Participant

                                                Thank you, Ed. I would have preferred to meet with my doctor, but was really hoping to get some help ASAP and she was out of the office for the last part of last week. I will definitely bring these all up again with her in my appt on Wednesday. I'll definitely keep this experience in mind next time. 

                                                • August 21, 2016 at 8:39 pm
                                                Christine.P
                                                Participant

                                                  Thank you, Ed. I would have preferred to meet with my doctor, but was really hoping to get some help ASAP and she was out of the office for the last part of last week. I will definitely bring these all up again with her in my appt on Wednesday. I'll definitely keep this experience in mind next time. 

                                                • August 21, 2016 at 12:04 am
                                                ed williams
                                                Participant

                                                  Hi Christine, Omeprazole can really help if you are getting acid reflux type symptoms. There is another drug that I uses for some time and then stopped is Domperidone 10mg, which helps relax the Esophagus to help with movement of food. I am sorry that the nurse was not helpfull, I usally hold my discussion of symptoms for my Oncologist since they specialize in what I am dealing with. Some times the nurse that you will see might also work for several different oncologists that deal with many different types of treatments and side effects. Best Wishes!!!!Ed

                                                  • August 21, 2016 at 12:18 am
                                                  Scottw
                                                  Participant

                                                    Hi Christine,

                                                    Your hanging in there pretty good side effects aside. I made it through all 4 ipi/nivo infusions but not at all pretty. Not to alarm you but after the 4th, (tough decision to do it but I did) is when it got the hardest for me. You will make it, just may have to put up a fight or maybe not!!! Everyone is different how they react. Sounds like its coming up soon. Best of luck Wednesday.

                                                    • August 21, 2016 at 12:18 am
                                                    Scottw
                                                    Participant

                                                      Hi Christine,

                                                      Your hanging in there pretty good side effects aside. I made it through all 4 ipi/nivo infusions but not at all pretty. Not to alarm you but after the 4th, (tough decision to do it but I did) is when it got the hardest for me. You will make it, just may have to put up a fight or maybe not!!! Everyone is different how they react. Sounds like its coming up soon. Best of luck Wednesday.

                                                        • August 21, 2016 at 8:41 pm
                                                        Christine.P
                                                        Participant

                                                          Thank you, Scott. I am actually really dreading this last dose but am hoping to have some better support and medicine in place to make things more bearable that these two weeks have been. I had read and expected more side effects starting with the 3rd dose – but was hoping my team would be more proactive in helping me deal with them. 

                                                          • August 21, 2016 at 8:41 pm
                                                          Christine.P
                                                          Participant

                                                            Thank you, Scott. I am actually really dreading this last dose but am hoping to have some better support and medicine in place to make things more bearable that these two weeks have been. I had read and expected more side effects starting with the 3rd dose – but was hoping my team would be more proactive in helping me deal with them. 

                                                            • August 21, 2016 at 8:41 pm
                                                            Christine.P
                                                            Participant

                                                              Thank you, Scott. I am actually really dreading this last dose but am hoping to have some better support and medicine in place to make things more bearable that these two weeks have been. I had read and expected more side effects starting with the 3rd dose – but was hoping my team would be more proactive in helping me deal with them. 

                                                            • August 21, 2016 at 12:18 am
                                                            Scottw
                                                            Participant

                                                              Hi Christine,

                                                              Your hanging in there pretty good side effects aside. I made it through all 4 ipi/nivo infusions but not at all pretty. Not to alarm you but after the 4th, (tough decision to do it but I did) is when it got the hardest for me. You will make it, just may have to put up a fight or maybe not!!! Everyone is different how they react. Sounds like its coming up soon. Best of luck Wednesday.

                                                              • August 22, 2016 at 5:20 pm
                                                              btcedarr
                                                              Participant

                                                                Christine, I am also in RI. Would you mind sharing who your team is?

                                                                • August 22, 2016 at 5:20 pm
                                                                btcedarr
                                                                Participant

                                                                  Christine, I am also in RI. Would you mind sharing who your team is?

                                                                  • August 22, 2016 at 5:20 pm
                                                                  btcedarr
                                                                  Participant

                                                                    Christine, I am also in RI. Would you mind sharing who your team is?

                                                                      • August 22, 2016 at 7:05 pm
                                                                      Christine.P
                                                                      Participant

                                                                        My oncologist is Maria Constatinou and her NP is Liz Lambert. They are at Rhode Island Hospital. The irony is I switched to them after having my initial surgeries and first 3 treatments at Roger Williams because they were so bad at responding to my concerns and side effects, etc. at RW. 

                                                                        What team do you have? Where in RI do you live, if you don't mind sharing? I'm in Cranston.

                                                                        • August 22, 2016 at 7:05 pm
                                                                        Christine.P
                                                                        Participant

                                                                          My oncologist is Maria Constatinou and her NP is Liz Lambert. They are at Rhode Island Hospital. The irony is I switched to them after having my initial surgeries and first 3 treatments at Roger Williams because they were so bad at responding to my concerns and side effects, etc. at RW. 

                                                                          What team do you have? Where in RI do you live, if you don't mind sharing? I'm in Cranston.

                                                                          • August 22, 2016 at 7:05 pm
                                                                          Christine.P
                                                                          Participant

                                                                            My oncologist is Maria Constatinou and her NP is Liz Lambert. They are at Rhode Island Hospital. The irony is I switched to them after having my initial surgeries and first 3 treatments at Roger Williams because they were so bad at responding to my concerns and side effects, etc. at RW. 

                                                                            What team do you have? Where in RI do you live, if you don't mind sharing? I'm in Cranston.

                                                                            • August 22, 2016 at 7:48 pm
                                                                            btcedarr
                                                                            Participant

                                                                              I am in Warwick. I was stage 1b, so I only saw the Ocology Surgeon at RIH. Dr. Vezerides. Love him! I do work in Pediatrics at Hasbro, so all my docs tend to be there. 

                                                                              • August 22, 2016 at 7:48 pm
                                                                              btcedarr
                                                                              Participant

                                                                                I am in Warwick. I was stage 1b, so I only saw the Ocology Surgeon at RIH. Dr. Vezerides. Love him! I do work in Pediatrics at Hasbro, so all my docs tend to be there. 

                                                                                • August 22, 2016 at 7:48 pm
                                                                                btcedarr
                                                                                Participant

                                                                                  I am in Warwick. I was stage 1b, so I only saw the Ocology Surgeon at RIH. Dr. Vezerides. Love him! I do work in Pediatrics at Hasbro, so all my docs tend to be there. 

                                                                                • August 23, 2016 at 1:14 pm
                                                                                RaquelP
                                                                                Participant

                                                                                  Just curious if you were taking a stool softner with the zofran. Zofran can cause constipation which can also cause stomach cramping.

                                                                                    • August 23, 2016 at 4:11 pm
                                                                                    Christine.P
                                                                                    Participant

                                                                                      No, I haven't been, but I havent had any trouble with that so far. I'll keep this in mind though. Thank you! 

                                                                                      • August 23, 2016 at 4:11 pm
                                                                                      Christine.P
                                                                                      Participant

                                                                                        No, I haven't been, but I havent had any trouble with that so far. I'll keep this in mind though. Thank you! 

                                                                                        • August 23, 2016 at 4:11 pm
                                                                                        Christine.P
                                                                                        Participant

                                                                                          No, I haven't been, but I havent had any trouble with that so far. I'll keep this in mind though. Thank you! 

                                                                                        • August 23, 2016 at 1:14 pm
                                                                                        RaquelP
                                                                                        Participant

                                                                                          Just curious if you were taking a stool softner with the zofran. Zofran can cause constipation which can also cause stomach cramping.

                                                                                          • August 23, 2016 at 1:14 pm
                                                                                          RaquelP
                                                                                          Participant

                                                                                            Just curious if you were taking a stool softner with the zofran. Zofran can cause constipation which can also cause stomach cramping.

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