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I am at a loss with dad’s condition

Forums General Melanoma Community I am at a loss with dad’s condition

  • Post
    keepthefaith11
    Participant
      I am extremely frustrated with my dad’s condition. The status of the brain Mets are pretty much stable, a couple of them a bit bigger and some smaller. So there is not much going on as far as disease progression. No additional disease anywhere else in the body.

      He had his third seizure in the beginning of November and has never really recovered. Before this last seizure he was doing pretty well. Able to walk around fairly normally. Going to the mall etc. He had his fifth immunotherapy infusion about three weeks after the last seizure. He developed some diarrhea and then was hit with the flu. He was in the hospital for almost 3 weeks primarily laying in bed. He has never recovered from that whole ordeal. He is now at a rehab center.

      The fatigue is Extreme and he sleeps off and on all through the day laying in bed. They have to use a lift to put him in the wheelchair to get him out to eat his meals. But even then he is only alert for maybe an hour and then ready to go to sleep again. He is experiencing some pretty severe swelling in both legs as well as his right arm. His speech has not been great since the last seizure either.

      I just got back from a two week visit with him and I am so frustrated and confused. Does someone have any ideas or what is going on here? The doctors don’t seem to know why he is so tired. They tend to think it’s because of the last seizure and don’t think it has anything to do with a brain tumors since they are still very small. He is on braf/mek combo since a couple of weeks back and also to different anti-seizure medications and one heart medication. I just don’t think that the medications would make him this out of it. This is absolutely horrible. He has no quality of life whatsoever.

      I also think there are some brain damage there. Either from the seizures or possibly the tumors affecting things. He definitely understands when you talk to him but seems to have a problem with short term memory. Can anybody please throw out some ideas of what you think might be happening?

      Thank you,

      Annie

    Viewing 17 reply threads
    • Replies
        debwray
        Participant

          Oh Annie,

          So sorry to hear this, it sounds really tough… and distance doesn't make it any easier at all. 

          Unfortunately he has a lot of things going on- 

          Possible after effects of seizure

          Drug side effects- causing fatigue

          Post viral fatigue

          Anti seizure meds fatigue etc

          My current hobby horse is the possibility of fatigue related to hyphophysitis- which is looking to be more common with immunotherapy than previously thought- this can present with extreme fatigue and headaches – but it might just be a simpler combination of other things.If he has brain mets and recent scans have been done you could always ask if their is any evidence of this..presentation can be subtle – but the more they look for it the more they find it. Could also be that he might have thyroid / adrenal issues from the immunotherapy. 

          The simpler explanations are the most likely – but if Dad is also complaining about headaches….it is so difficult to tease out what is doing what- but worth asking if they have considered endocrine immune related adverse events as a cause of the fatigue..even rarer is diabetes caused by immunotherapy but that should be easy to rule out.

          Hope things get better soon,

          Best wishes

          Deb

          debwray
          Participant

            Oh Annie,

            So sorry to hear this, it sounds really tough… and distance doesn't make it any easier at all. 

            Unfortunately he has a lot of things going on- 

            Possible after effects of seizure

            Drug side effects- causing fatigue

            Post viral fatigue

            Anti seizure meds fatigue etc

            My current hobby horse is the possibility of fatigue related to hyphophysitis- which is looking to be more common with immunotherapy than previously thought- this can present with extreme fatigue and headaches – but it might just be a simpler combination of other things.If he has brain mets and recent scans have been done you could always ask if their is any evidence of this..presentation can be subtle – but the more they look for it the more they find it. Could also be that he might have thyroid / adrenal issues from the immunotherapy. 

            The simpler explanations are the most likely – but if Dad is also complaining about headaches….it is so difficult to tease out what is doing what- but worth asking if they have considered endocrine immune related adverse events as a cause of the fatigue..even rarer is diabetes caused by immunotherapy but that should be easy to rule out.

            Hope things get better soon,

            Best wishes

            Deb

              keepthefaith11
              Participant
                As always, thank you Deb. I will definitely write the doctor about the thyroid and adrenal issues. Have not heard them mention anything about it so I will double check. He does not have pain anywhere which is good. I will definitely bring this up to the doctor. Thank you!

                Annie

                keepthefaith11
                Participant
                  As always, thank you Deb. I will definitely write the doctor about the thyroid and adrenal issues. Have not heard them mention anything about it so I will double check. He does not have pain anywhere which is good. I will definitely bring this up to the doctor. Thank you!

                  Annie

                  keepthefaith11
                  Participant
                    As always, thank you Deb. I will definitely write the doctor about the thyroid and adrenal issues. Have not heard them mention anything about it so I will double check. He does not have pain anywhere which is good. I will definitely bring this up to the doctor. Thank you!

                    Annie

                  debwray
                  Participant

                    Oh Annie,

                    So sorry to hear this, it sounds really tough… and distance doesn't make it any easier at all. 

                    Unfortunately he has a lot of things going on- 

                    Possible after effects of seizure

                    Drug side effects- causing fatigue

                    Post viral fatigue

                    Anti seizure meds fatigue etc

                    My current hobby horse is the possibility of fatigue related to hyphophysitis- which is looking to be more common with immunotherapy than previously thought- this can present with extreme fatigue and headaches – but it might just be a simpler combination of other things.If he has brain mets and recent scans have been done you could always ask if their is any evidence of this..presentation can be subtle – but the more they look for it the more they find it. Could also be that he might have thyroid / adrenal issues from the immunotherapy. 

                    The simpler explanations are the most likely – but if Dad is also complaining about headaches….it is so difficult to tease out what is doing what- but worth asking if they have considered endocrine immune related adverse events as a cause of the fatigue..even rarer is diabetes caused by immunotherapy but that should be easy to rule out.

                    Hope things get better soon,

                    Best wishes

                    Deb

                    jennunicorn
                    Participant

                      Annie, I am so sorry your dad is having such a rough time. I don't have any advice, just want to send a hug and as always keeping you guys in my thoughts.

                      jennunicorn
                      Participant

                        Annie, I am so sorry your dad is having such a rough time. I don't have any advice, just want to send a hug and as always keeping you guys in my thoughts.

                        jennunicorn
                        Participant

                          Annie, I am so sorry your dad is having such a rough time. I don't have any advice, just want to send a hug and as always keeping you guys in my thoughts.

                          _Paul_
                          Participant

                            Annie, I hope your dad's team can find something to improve his quality of life. You two are in my prayers.

                            – Paul

                            _Paul_
                            Participant

                              Annie, I hope your dad's team can find something to improve his quality of life. You two are in my prayers.

                              – Paul

                              _Paul_
                              Participant

                                Annie, I hope your dad's team can find something to improve his quality of life. You two are in my prayers.

                                – Paul

                                  keepthefaith11
                                  Participant
                                    Thank you Paul. Keeping you in my thoughts.

                                    Annie

                                    keepthefaith11
                                    Participant
                                      Thank you Paul. Keeping you in my thoughts.

                                      Annie

                                      keepthefaith11
                                      Participant
                                        Thank you Paul. Keeping you in my thoughts.

                                        Annie

                                      snow white
                                      Participant

                                        Hi Annie, I am so sorry your Dad is having such a rough time.  I think Deb brings some valid points.  Do you know if they have checked his endocrine system?  Low thyroid alone can cause fatigue.  Could he possibly be suffering from Chronic Fatigue syndrome?  I think sometimes they use an anti-depressant for that.  Could he be depressed?  I have major depression and know many others that do to, and one of the side effects that come with that is sleeping all of the time (unfortunately fo me its opposite, can't sleep). Could it be that his brain just plan old needs to rest from all that it has been through?  I really hope the docs can come to a conclusion on this.  I am so sorry you have to be so far away.  Thinking of you.

                                        xo Jen

                                        snow white
                                        Participant

                                          Hi Annie, I am so sorry your Dad is having such a rough time.  I think Deb brings some valid points.  Do you know if they have checked his endocrine system?  Low thyroid alone can cause fatigue.  Could he possibly be suffering from Chronic Fatigue syndrome?  I think sometimes they use an anti-depressant for that.  Could he be depressed?  I have major depression and know many others that do to, and one of the side effects that come with that is sleeping all of the time (unfortunately fo me its opposite, can't sleep). Could it be that his brain just plan old needs to rest from all that it has been through?  I really hope the docs can come to a conclusion on this.  I am so sorry you have to be so far away.  Thinking of you.

                                          xo Jen

                                            keepthefaith11
                                            Participant
                                              Jen, I am definitely going to ask the doctors about the endocrine system. You bring up a good point with depression as well. I will talk to them about all this. Thank you!

                                              Annie

                                              keepthefaith11
                                              Participant
                                                Jen, I am definitely going to ask the doctors about the endocrine system. You bring up a good point with depression as well. I will talk to them about all this. Thank you!

                                                Annie

                                                keepthefaith11
                                                Participant
                                                  Jen, I am definitely going to ask the doctors about the endocrine system. You bring up a good point with depression as well. I will talk to them about all this. Thank you!

                                                  Annie

                                                snow white
                                                Participant

                                                  Hi Annie, I am so sorry your Dad is having such a rough time.  I think Deb brings some valid points.  Do you know if they have checked his endocrine system?  Low thyroid alone can cause fatigue.  Could he possibly be suffering from Chronic Fatigue syndrome?  I think sometimes they use an anti-depressant for that.  Could he be depressed?  I have major depression and know many others that do to, and one of the side effects that come with that is sleeping all of the time (unfortunately fo me its opposite, can't sleep). Could it be that his brain just plan old needs to rest from all that it has been through?  I really hope the docs can come to a conclusion on this.  I am so sorry you have to be so far away.  Thinking of you.

                                                  xo Jen

                                                  Patina
                                                  Participant

                                                    Why hasn't he had gamma knife radiation? He needs to see a radiation oncologist for treatment.

                                                    My Mom's doctor had her on 500mg Keppra twice daily and her symptoms are very similar to your Dad's, including the memory issue. She couldn't think, she was fatigued, couldn't get out of bed and walk to the kitchen. And if I woke her to eat and managed to get her to the kitchen or den and turned my back she was back in bed. She was REALLY difficult. It was a nightmare and went on for about a week.

                                                    Her doctor said to take both Keppra pills only at night. She was fine in about 2 days. 

                                                    Get a second opinion on his brain mets and find a EXCELLENT radiologist. They are NOT all the same. You need someone who had tons of experience. Look at teaching institution.

                                                    Good Luck,

                                                    A

                                                     

                                                    Patina
                                                    Participant

                                                      Why hasn't he had gamma knife radiation? He needs to see a radiation oncologist for treatment.

                                                      My Mom's doctor had her on 500mg Keppra twice daily and her symptoms are very similar to your Dad's, including the memory issue. She couldn't think, she was fatigued, couldn't get out of bed and walk to the kitchen. And if I woke her to eat and managed to get her to the kitchen or den and turned my back she was back in bed. She was REALLY difficult. It was a nightmare and went on for about a week.

                                                      Her doctor said to take both Keppra pills only at night. She was fine in about 2 days. 

                                                      Get a second opinion on his brain mets and find a EXCELLENT radiologist. They are NOT all the same. You need someone who had tons of experience. Look at teaching institution.

                                                      Good Luck,

                                                      A

                                                       

                                                        keepthefaith11
                                                        Participant
                                                          When his brain Mets were discovered he was in his home country of Sweden. I talked to the doctors and they do not do gamma knife radiation for multiple brain Mets. He had thirteen. I was trying to push for it but with the healthcare system over there you are stuck with the doctors you get. These are all melanoma Specialists and the hospital is actually one out of two in Sweden who are recommended on the melanoma International website. The hospital is a research, teaching institution . Still, I did not agree with doing whole brain radiation and would have preferred gamma knife. We did contact the other main hospital and they looked over his scans and agreed that whole brain radiation was the way to go. So there was no way to get them to do Gamma. They are still talking about possibly doing SRS, but it is not on their radar as of now.

                                                          That is really interesting to hear about taking all the anti-seizure meds at night and it making such a big difference. I will definitely bring that up.

                                                          Thank you!

                                                          Annie

                                                          keepthefaith11
                                                          Participant
                                                            When his brain Mets were discovered he was in his home country of Sweden. I talked to the doctors and they do not do gamma knife radiation for multiple brain Mets. He had thirteen. I was trying to push for it but with the healthcare system over there you are stuck with the doctors you get. These are all melanoma Specialists and the hospital is actually one out of two in Sweden who are recommended on the melanoma International website. The hospital is a research, teaching institution . Still, I did not agree with doing whole brain radiation and would have preferred gamma knife. We did contact the other main hospital and they looked over his scans and agreed that whole brain radiation was the way to go. So there was no way to get them to do Gamma. They are still talking about possibly doing SRS, but it is not on their radar as of now.

                                                            That is really interesting to hear about taking all the anti-seizure meds at night and it making such a big difference. I will definitely bring that up.

                                                            Thank you!

                                                            Annie

                                                            keepthefaith11
                                                            Participant
                                                              When his brain Mets were discovered he was in his home country of Sweden. I talked to the doctors and they do not do gamma knife radiation for multiple brain Mets. He had thirteen. I was trying to push for it but with the healthcare system over there you are stuck with the doctors you get. These are all melanoma Specialists and the hospital is actually one out of two in Sweden who are recommended on the melanoma International website. The hospital is a research, teaching institution . Still, I did not agree with doing whole brain radiation and would have preferred gamma knife. We did contact the other main hospital and they looked over his scans and agreed that whole brain radiation was the way to go. So there was no way to get them to do Gamma. They are still talking about possibly doing SRS, but it is not on their radar as of now.

                                                              That is really interesting to hear about taking all the anti-seizure meds at night and it making such a big difference. I will definitely bring that up.

                                                              Thank you!

                                                              Annie

                                                            Patina
                                                            Participant

                                                              Why hasn't he had gamma knife radiation? He needs to see a radiation oncologist for treatment.

                                                              My Mom's doctor had her on 500mg Keppra twice daily and her symptoms are very similar to your Dad's, including the memory issue. She couldn't think, she was fatigued, couldn't get out of bed and walk to the kitchen. And if I woke her to eat and managed to get her to the kitchen or den and turned my back she was back in bed. She was REALLY difficult. It was a nightmare and went on for about a week.

                                                              Her doctor said to take both Keppra pills only at night. She was fine in about 2 days. 

                                                              Get a second opinion on his brain mets and find a EXCELLENT radiologist. They are NOT all the same. You need someone who had tons of experience. Look at teaching institution.

                                                              Good Luck,

                                                              A

                                                               

                                                              maperny
                                                              Participant

                                                                Sorry to hear your Dad is having such a hard time (and so are you!).  All the combination of things causing the fatigue may take some time to get over, hopefully a little better every day.  

                                                                Has he been prescribed ritalin or something for the fatigue or maybe that is not good with his current medicine regimen.

                                                                maperny
                                                                Participant

                                                                  Sorry to hear your Dad is having such a hard time (and so are you!).  All the combination of things causing the fatigue may take some time to get over, hopefully a little better every day.  

                                                                  Has he been prescribed ritalin or something for the fatigue or maybe that is not good with his current medicine regimen.

                                                                    keepthefaith11
                                                                    Participant
                                                                      Thank you. I just wrote an email to his doctor to address his issues and gave the suggestions from everybody who responded. We shall see what they say.

                                                                      Annie

                                                                      keepthefaith11
                                                                      Participant
                                                                        Thank you. I just wrote an email to his doctor to address his issues and gave the suggestions from everybody who responded. We shall see what they say.

                                                                        Annie

                                                                        keepthefaith11
                                                                        Participant
                                                                          Thank you. I just wrote an email to his doctor to address his issues and gave the suggestions from everybody who responded. We shall see what they say.

                                                                          Annie

                                                                        maperny
                                                                        Participant

                                                                          Sorry to hear your Dad is having such a hard time (and so are you!).  All the combination of things causing the fatigue may take some time to get over, hopefully a little better every day.  

                                                                          Has he been prescribed ritalin or something for the fatigue or maybe that is not good with his current medicine regimen.

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