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metastatic brain tumor
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metastatic brain tumor

› Forums › Caregiver Community › metastatic brain tumor

  • Post
    • February 9, 2012 at 8:21 pm
    annem
    Participant

      My husband was first dx in 1998 with brain tumor treated with 15 rounds of WBR.  After a second brain tumor, stomach tumor, lung tumors, 4 rounds of biochemo and gamma knife, he has been cancer free since 2003.  He was diagnosed with radiation induced dementia in 2005 and had a stroke in 2009 which left him unable to walk without a walker and unable to talk.  He is only 58 years old.  About two weeks ago he began holding his head as though he was in pain and he has lost about 25 pounds since mid-December.  An MRI yesterday revealed no new tumor activity but an abnor

      My husband was first dx in 1998 with brain tumor treated with 15 rounds of WBR.  After a second brain tumor, stomach tumor, lung tumors, 4 rounds of biochemo and gamma knife, he has been cancer free since 2003.  He was diagnosed with radiation induced dementia in 2005 and had a stroke in 2009 which left him unable to walk without a walker and unable to talk.  He is only 58 years old.  About two weeks ago he began holding his head as though he was in pain and he has lost about 25 pounds since mid-December.  An MRI yesterday revealed no new tumor activity but an abnormal thickening of the brain at the back of his head.  The neuro is sending the MRI to the onc but tells me right now he is calling it an abnormal thickening of the dura – he says it may or may not be new disease.  He asked me if I had thought about hospice.  This has thrown me for a loop.  Although my husband has been unable to talk and had obvious comprehension issues, he knows me, he knows the kids, watches his beloved Okla State cowboys … I told the doctor my main concern is that he not be in pain.  I'm not sure what this means but didn't know where else to turn.  I haven't posted here in a number of years but I always got great comfort in the discussions and suggestions.  Hopefully, someone will have dealt with this issue and can offer some advice.  Thanks.  AnneM, caregiver to husband, stage iv

    Viewing 8 reply threads
    • Replies
        • February 10, 2012 at 4:59 am
        FormerCaregiver
        Participant

          I think that it would be wise to ask doctors for an overall evaluation of your husband's medical condition. With this in mind, I have some questions as I couldn't find any info on the profile page.

          Was your husband first diagnosed with melanoma in 1998? Has he had a whole body CT and/or PET scan recently to make sure that melanoma isn't causing any problems? Why has he lost 25 pounds since mid-December?

          The fact that he has radiation induced dementia and has suffered a stroke are causes for concern. How have his symptoms changed recently? Why was hospice suggested?

          There are a number of people here who have experience with hospice, so hopefully they will chime in with their views.

          Best wishes

          Frank from Australia

            • February 10, 2012 at 6:05 pm
            annem
            Participant

              My husband was first diagnosed in Oct. 1998.  He presented with a brain tumor and no primary was ever found.  He has exihibited signs of dementia since about 2005 and was put on various antipsychotic drugs to control delusions (nothing violent, just thinking people were coming to see him when they weren't, only strange thing was thinking people were in jail for things, which is why I agreed to the antipsychotic drugs).  After the stroke in 2009 left him with the inability to talk I took him off of all drugs except the antiseizure meds.  We are not going to do a PET scan – getting the MRI with contrast was difficult enough for him since he doesn't talk and I'm not sure how much he understands.  I do not want to do anything that is invasive or stressful.  I basically want to know what to expect and I do not want him to be in pain.  After speaking to his neurosurgoen and searching the internet I think what they will probably diagnose is brain necrosis.  He had 15 rounds of WBR and I think most of the symptoms he has experienced since 2003 are from this rather than disease.  From what I have read, brain necrosis is deadly and the only treatment is Avastin, another very, very strong chemo drug with lots of side affects.  I am meeting with his oncologist next week.  Thanks for your reply – if you have any experience with brain necrosis, please let me know. 

              • February 10, 2012 at 6:05 pm
              annem
              Participant

                My husband was first diagnosed in Oct. 1998.  He presented with a brain tumor and no primary was ever found.  He has exihibited signs of dementia since about 2005 and was put on various antipsychotic drugs to control delusions (nothing violent, just thinking people were coming to see him when they weren't, only strange thing was thinking people were in jail for things, which is why I agreed to the antipsychotic drugs).  After the stroke in 2009 left him with the inability to talk I took him off of all drugs except the antiseizure meds.  We are not going to do a PET scan – getting the MRI with contrast was difficult enough for him since he doesn't talk and I'm not sure how much he understands.  I do not want to do anything that is invasive or stressful.  I basically want to know what to expect and I do not want him to be in pain.  After speaking to his neurosurgoen and searching the internet I think what they will probably diagnose is brain necrosis.  He had 15 rounds of WBR and I think most of the symptoms he has experienced since 2003 are from this rather than disease.  From what I have read, brain necrosis is deadly and the only treatment is Avastin, another very, very strong chemo drug with lots of side affects.  I am meeting with his oncologist next week.  Thanks for your reply – if you have any experience with brain necrosis, please let me know. 

                • February 12, 2012 at 1:14 am
                FormerCaregiver
                Participant

                  Thanks for clarifying the situation regarding your husband's condition. It is very
                  understandable that scans can be difficult for him. Although brain necrosis is certainly
                  a serious condition, it can be hard to predict the course of the disease.

                  Hopefully, the oncologist will be able to give you some advice on managing your
                  husband's condition. Here is some info about pain management:
                  http://en.wikipedia.org/wiki/Pain_management

                  Hope this helps

                  Frank from Australia

                  • February 12, 2012 at 1:14 am
                  FormerCaregiver
                  Participant

                    Thanks for clarifying the situation regarding your husband's condition. It is very
                    understandable that scans can be difficult for him. Although brain necrosis is certainly
                    a serious condition, it can be hard to predict the course of the disease.

                    Hopefully, the oncologist will be able to give you some advice on managing your
                    husband's condition. Here is some info about pain management:
                    http://en.wikipedia.org/wiki/Pain_management

                    Hope this helps

                    Frank from Australia

                    • February 12, 2012 at 1:14 am
                    FormerCaregiver
                    Participant

                      Thanks for clarifying the situation regarding your husband's condition. It is very
                      understandable that scans can be difficult for him. Although brain necrosis is certainly
                      a serious condition, it can be hard to predict the course of the disease.

                      Hopefully, the oncologist will be able to give you some advice on managing your
                      husband's condition. Here is some info about pain management:
                      http://en.wikipedia.org/wiki/Pain_management

                      Hope this helps

                      Frank from Australia

                      • February 10, 2012 at 6:05 pm
                      annem
                      Participant

                        My husband was first diagnosed in Oct. 1998.  He presented with a brain tumor and no primary was ever found.  He has exihibited signs of dementia since about 2005 and was put on various antipsychotic drugs to control delusions (nothing violent, just thinking people were coming to see him when they weren't, only strange thing was thinking people were in jail for things, which is why I agreed to the antipsychotic drugs).  After the stroke in 2009 left him with the inability to talk I took him off of all drugs except the antiseizure meds.  We are not going to do a PET scan – getting the MRI with contrast was difficult enough for him since he doesn't talk and I'm not sure how much he understands.  I do not want to do anything that is invasive or stressful.  I basically want to know what to expect and I do not want him to be in pain.  After speaking to his neurosurgoen and searching the internet I think what they will probably diagnose is brain necrosis.  He had 15 rounds of WBR and I think most of the symptoms he has experienced since 2003 are from this rather than disease.  From what I have read, brain necrosis is deadly and the only treatment is Avastin, another very, very strong chemo drug with lots of side affects.  I am meeting with his oncologist next week.  Thanks for your reply – if you have any experience with brain necrosis, please let me know. 

                      • February 10, 2012 at 4:59 am
                      FormerCaregiver
                      Participant

                        I think that it would be wise to ask doctors for an overall evaluation of your husband's medical condition. With this in mind, I have some questions as I couldn't find any info on the profile page.

                        Was your husband first diagnosed with melanoma in 1998? Has he had a whole body CT and/or PET scan recently to make sure that melanoma isn't causing any problems? Why has he lost 25 pounds since mid-December?

                        The fact that he has radiation induced dementia and has suffered a stroke are causes for concern. How have his symptoms changed recently? Why was hospice suggested?

                        There are a number of people here who have experience with hospice, so hopefully they will chime in with their views.

                        Best wishes

                        Frank from Australia

                        • February 10, 2012 at 4:59 am
                        FormerCaregiver
                        Participant

                          I think that it would be wise to ask doctors for an overall evaluation of your husband's medical condition. With this in mind, I have some questions as I couldn't find any info on the profile page.

                          Was your husband first diagnosed with melanoma in 1998? Has he had a whole body CT and/or PET scan recently to make sure that melanoma isn't causing any problems? Why has he lost 25 pounds since mid-December?

                          The fact that he has radiation induced dementia and has suffered a stroke are causes for concern. How have his symptoms changed recently? Why was hospice suggested?

                          There are a number of people here who have experience with hospice, so hopefully they will chime in with their views.

                          Best wishes

                          Frank from Australia

                          • February 10, 2012 at 5:03 am
                          dian in spokane
                          Participant

                            Anne,

                             

                            I'm so sorry to hear about this new development. I am a patient not a caregiver, but was involved with Hospice care when I lost my stepmom to pancreatic cancer a few years ago. And I have known many people here on the board who have turned to it and spoken about how much comfort and care they brought to the situation.

                            I'm sure your priority will be to determine what is actually going on first, but try to open yourself to the idea of hospice care if it's what's neccessary.

                             

                            Good luck to you in this new battle.

                             

                            Dian

                            • February 10, 2012 at 5:03 am
                            dian in spokane
                            Participant

                              Anne,

                               

                              I'm so sorry to hear about this new development. I am a patient not a caregiver, but was involved with Hospice care when I lost my stepmom to pancreatic cancer a few years ago. And I have known many people here on the board who have turned to it and spoken about how much comfort and care they brought to the situation.

                              I'm sure your priority will be to determine what is actually going on first, but try to open yourself to the idea of hospice care if it's what's neccessary.

                               

                              Good luck to you in this new battle.

                               

                              Dian

                              • February 10, 2012 at 5:03 am
                              dian in spokane
                              Participant

                                Anne,

                                 

                                I'm so sorry to hear about this new development. I am a patient not a caregiver, but was involved with Hospice care when I lost my stepmom to pancreatic cancer a few years ago. And I have known many people here on the board who have turned to it and spoken about how much comfort and care they brought to the situation.

                                I'm sure your priority will be to determine what is actually going on first, but try to open yourself to the idea of hospice care if it's what's neccessary.

                                 

                                Good luck to you in this new battle.

                                 

                                Dian

                                • February 10, 2012 at 6:05 pm
                                susaw
                                Participant

                                  Jeannine,

                                  I live in Spokane.  My husband has been diagnosed with Stage IV melanoma. It sounds like you could use a friend. Do you know if there is some way for me to give you my email without putting it out for all to read?

                                  Susan

                                  • February 10, 2012 at 6:05 pm
                                  susaw
                                  Participant

                                    Jeannine,

                                    I live in Spokane.  My husband has been diagnosed with Stage IV melanoma. It sounds like you could use a friend. Do you know if there is some way for me to give you my email without putting it out for all to read?

                                    Susan

                                    • February 10, 2012 at 6:05 pm
                                    susaw
                                    Participant

                                      Jeannine,

                                      I live in Spokane.  My husband has been diagnosed with Stage IV melanoma. It sounds like you could use a friend. Do you know if there is some way for me to give you my email without putting it out for all to read?

                                      Susan

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