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  • Post
    • February 6, 2016 at 12:52 am
    jamieth29
    Participant
      Went in today for scan results and brain mri showed 3 spots. Two 3mm and one 4mm. The doctor wants to wait two weeks and do another mri to make sure they are mets as he said he’s not convinced they are. They were not present on mri in June said there is no edema for whatever that’s worth. I have a appointment with radiologist Monday. The body pet/ct was clear. The doctor wants me to go ahead and start nivo next week. He said i shouldn’t do anything until we repeat scan. Don’t know what else they could be…to me it was pretty cut and dried they didn’t show in June and are now present so…advice? Could hardly be around kids when i got home so scared that the kids will have to watch this play out.
    Viewing 29 reply threads
    • Replies
        • February 6, 2016 at 2:07 am
        Bubbles
        Participant

          Sorry for the scary news, Jamie. My advice…Nivo…ASAP! Strike now! Add scans, SRS, surgery…whatever as need be…and as you figure out what these buggers are. Maybe they are red herrings…and that would be great. But you had need of Nivo already…so press on!  Hang in there! C

          • February 6, 2016 at 2:07 am
          Bubbles
          Participant

            Sorry for the scary news, Jamie. My advice…Nivo…ASAP! Strike now! Add scans, SRS, surgery…whatever as need be…and as you figure out what these buggers are. Maybe they are red herrings…and that would be great. But you had need of Nivo already…so press on!  Hang in there! C

              • February 6, 2016 at 4:30 am
              jamieth29
              Participant
                That is the plan so far Celest. I have a “chemo” education class Wednesday then i think first dose will be Friday. I’m assuming srs will be the route. Not sure about surgery. Lots to figure out.
                • February 6, 2016 at 4:30 am
                jamieth29
                Participant
                  That is the plan so far Celest. I have a “chemo” education class Wednesday then i think first dose will be Friday. I’m assuming srs will be the route. Not sure about surgery. Lots to figure out.
                  • February 6, 2016 at 4:30 am
                  jamieth29
                  Participant
                    That is the plan so far Celest. I have a “chemo” education class Wednesday then i think first dose will be Friday. I’m assuming srs will be the route. Not sure about surgery. Lots to figure out.
                  • February 6, 2016 at 2:07 am
                  Bubbles
                  Participant

                    Sorry for the scary news, Jamie. My advice…Nivo…ASAP! Strike now! Add scans, SRS, surgery…whatever as need be…and as you figure out what these buggers are. Maybe they are red herrings…and that would be great. But you had need of Nivo already…so press on!  Hang in there! C

                    • February 6, 2016 at 4:16 am
                    Rita and Charles
                    Participant

                      So sorry to hear – I agree with Celeste, start immediately, do everything.  Can I ask, how has your blood work been? 

                      Rita

                        • February 6, 2016 at 4:26 am
                        jamieth29
                        Participant
                          all blood work has been normal
                          • February 6, 2016 at 4:26 am
                          jamieth29
                          Participant
                            all blood work has been normal
                            • February 6, 2016 at 4:26 am
                            jamieth29
                            Participant
                              all blood work has been normal
                            • February 6, 2016 at 4:16 am
                            Rita and Charles
                            Participant

                              So sorry to hear – I agree with Celeste, start immediately, do everything.  Can I ask, how has your blood work been? 

                              Rita

                              • February 6, 2016 at 4:16 am
                              Rita and Charles
                              Participant

                                So sorry to hear – I agree with Celeste, start immediately, do everything.  Can I ask, how has your blood work been? 

                                Rita

                                • February 6, 2016 at 2:16 pm
                                mms7angels1
                                Participant

                                  Hello

                                  Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

                                  Prayers and blessings sent your way

                                  Maureen

                                    • February 7, 2016 at 2:52 am
                                    jamieth29
                                    Participant
                                      Thank you Maureen I’m gonna try and just take one day at a time…all I can do.
                                      • February 7, 2016 at 2:52 am
                                      jamieth29
                                      Participant
                                        Thank you Maureen I’m gonna try and just take one day at a time…all I can do.
                                        • February 7, 2016 at 2:52 am
                                        jamieth29
                                        Participant
                                          Thank you Maureen I’m gonna try and just take one day at a time…all I can do.
                                        • February 6, 2016 at 2:16 pm
                                        mms7angels1
                                        Participant

                                          Hello

                                          Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

                                          Prayers and blessings sent your way

                                          Maureen

                                          • February 6, 2016 at 2:16 pm
                                          mms7angels1
                                          Participant

                                            Hello

                                            Good news on the pet/ct. I've had several mets over the years. Last year found a met in the brain in late July, started Nivo in early August, several days later had brain met SBRT, doing well. Been on Nivo now for 6+ months and have had 2 follow up brain mris and 2 CTs and no new lesions. Take a deep breath, start treatment and go from there. 

                                            Prayers and blessings sent your way

                                            Maureen

                                            • February 6, 2016 at 2:36 pm
                                            jenny22
                                            Participant

                                              OH Jamie, I can't tell you how sad I was when I read this…..honestly, it made me cry…..BUT, for now i am going to hope maybe your DOC is right….and that they aren't mets…..we can hope…..Good news that the PET/CT was clear otherwise.

                                              Regardless, starting NIVO asap makes sense and that was your plan before this…..Hopefully NIVO will do its thing, and if ultimately SRS is needed then that too will knock these things out!!!! Fortunately they are small.

                                              I cant imagine how you are feeling right now…(though I think i can)…..

                                              Thinking about you and sending good thoughts. Keep us posted.

                                              Best,

                                              Jenny

                                               

                                               

                                               

                                              • February 6, 2016 at 2:36 pm
                                              jenny22
                                              Participant

                                                OH Jamie, I can't tell you how sad I was when I read this…..honestly, it made me cry…..BUT, for now i am going to hope maybe your DOC is right….and that they aren't mets…..we can hope…..Good news that the PET/CT was clear otherwise.

                                                Regardless, starting NIVO asap makes sense and that was your plan before this…..Hopefully NIVO will do its thing, and if ultimately SRS is needed then that too will knock these things out!!!! Fortunately they are small.

                                                I cant imagine how you are feeling right now…(though I think i can)…..

                                                Thinking about you and sending good thoughts. Keep us posted.

                                                Best,

                                                Jenny

                                                 

                                                 

                                                 

                                                  • February 7, 2016 at 2:51 am
                                                  jamieth29
                                                  Participant
                                                    Thank you Jenny, i was so sure i had got in front of it this time.
                                                    • February 7, 2016 at 2:51 am
                                                    jamieth29
                                                    Participant
                                                      Thank you Jenny, i was so sure i had got in front of it this time.
                                                      • February 7, 2016 at 2:51 am
                                                      jamieth29
                                                      Participant
                                                        Thank you Jenny, i was so sure i had got in front of it this time.
                                                      • February 6, 2016 at 2:36 pm
                                                      jenny22
                                                      Participant

                                                        OH Jamie, I can't tell you how sad I was when I read this…..honestly, it made me cry…..BUT, for now i am going to hope maybe your DOC is right….and that they aren't mets…..we can hope…..Good news that the PET/CT was clear otherwise.

                                                        Regardless, starting NIVO asap makes sense and that was your plan before this…..Hopefully NIVO will do its thing, and if ultimately SRS is needed then that too will knock these things out!!!! Fortunately they are small.

                                                        I cant imagine how you are feeling right now…(though I think i can)…..

                                                        Thinking about you and sending good thoughts. Keep us posted.

                                                        Best,

                                                        Jenny

                                                         

                                                         

                                                         

                                                        • February 6, 2016 at 10:08 pm
                                                        gregor913
                                                        Participant
                                                          Prayers for you Jaime. When I read that I was really upset. I’m praying that in 2 weeks they turn out to be nothing. If not your young and strong and will get through this. Greg
                                                          • February 6, 2016 at 10:08 pm
                                                          gregor913
                                                          Participant
                                                            Prayers for you Jaime. When I read that I was really upset. I’m praying that in 2 weeks they turn out to be nothing. If not your young and strong and will get through this. Greg
                                                            • February 6, 2016 at 10:08 pm
                                                            gregor913
                                                            Participant
                                                              Prayers for you Jaime. When I read that I was really upset. I’m praying that in 2 weeks they turn out to be nothing. If not your young and strong and will get through this. Greg
                                                              • February 7, 2016 at 1:58 am
                                                              Mat
                                                              Participant

                                                                Jamie, sorry to hear.  For what it's worth, SRS is an easy procedure.  You might also get the benefit of combining radiation with immunotherapy.

                                                                  • February 7, 2016 at 2:25 am
                                                                  jamieth29
                                                                  Participant
                                                                    Thanks Mat, i know you have been down this road, what I’m not getting is how they know for sure. Is it right to wait the 2 weeks and check again? If they are mets which i imagine they are, isn’t the quicker to treat the better? I just don’t see a scenario where they are something else. He didn’t say lets talk with a neurosurgeon or anything. I honestly think he was in a little shock also. He did set me up with the radiation oncologist monday morning. He mentioned whole brain radiation if they are mets and i instantly said no… that’s not the way to go after these. I’m going to try to get a hold of Dr Luke Monday but he might be on maternity leave for 2 weeks. I’m freaked.
                                                                    • February 7, 2016 at 2:25 am
                                                                    jamieth29
                                                                    Participant
                                                                      Thanks Mat, i know you have been down this road, what I’m not getting is how they know for sure. Is it right to wait the 2 weeks and check again? If they are mets which i imagine they are, isn’t the quicker to treat the better? I just don’t see a scenario where they are something else. He didn’t say lets talk with a neurosurgeon or anything. I honestly think he was in a little shock also. He did set me up with the radiation oncologist monday morning. He mentioned whole brain radiation if they are mets and i instantly said no… that’s not the way to go after these. I’m going to try to get a hold of Dr Luke Monday but he might be on maternity leave for 2 weeks. I’m freaked.
                                                                      • February 7, 2016 at 4:15 pm
                                                                      kylez
                                                                      Participant

                                                                        I think both times for me (Kaiser and UCSF) a multidisciplinary tumor review board was convened, as a matter of standard procedure I believe. Neurosurgeon, Radiation Oncologist, Oncologist were all represened and discussing the images and decided on the best treatment plan to recommend. 

                                                                        • February 7, 2016 at 4:15 pm
                                                                        kylez
                                                                        Participant

                                                                          I think both times for me (Kaiser and UCSF) a multidisciplinary tumor review board was convened, as a matter of standard procedure I believe. Neurosurgeon, Radiation Oncologist, Oncologist were all represened and discussing the images and decided on the best treatment plan to recommend. 

                                                                          • February 7, 2016 at 4:15 pm
                                                                          kylez
                                                                          Participant

                                                                            I think both times for me (Kaiser and UCSF) a multidisciplinary tumor review board was convened, as a matter of standard procedure I believe. Neurosurgeon, Radiation Oncologist, Oncologist were all represened and discussing the images and decided on the best treatment plan to recommend. 

                                                                            • February 7, 2016 at 11:05 pm
                                                                            Mat
                                                                            Participant

                                                                              I agree–not excited about waiting and WBR is a non-starter unless the mets could not be treated with SRS or surgery.

                                                                              • February 7, 2016 at 11:05 pm
                                                                              Mat
                                                                              Participant

                                                                                I agree–not excited about waiting and WBR is a non-starter unless the mets could not be treated with SRS or surgery.

                                                                                • February 7, 2016 at 11:05 pm
                                                                                Mat
                                                                                Participant

                                                                                  I agree–not excited about waiting and WBR is a non-starter unless the mets could not be treated with SRS or surgery.

                                                                                  • February 7, 2016 at 2:25 am
                                                                                  jamieth29
                                                                                  Participant
                                                                                    Thanks Mat, i know you have been down this road, what I’m not getting is how they know for sure. Is it right to wait the 2 weeks and check again? If they are mets which i imagine they are, isn’t the quicker to treat the better? I just don’t see a scenario where they are something else. He didn’t say lets talk with a neurosurgeon or anything. I honestly think he was in a little shock also. He did set me up with the radiation oncologist monday morning. He mentioned whole brain radiation if they are mets and i instantly said no… that’s not the way to go after these. I’m going to try to get a hold of Dr Luke Monday but he might be on maternity leave for 2 weeks. I’m freaked.
                                                                                  • February 7, 2016 at 1:58 am
                                                                                  Mat
                                                                                  Participant

                                                                                    Jamie, sorry to hear.  For what it's worth, SRS is an easy procedure.  You might also get the benefit of combining radiation with immunotherapy.

                                                                                    • February 7, 2016 at 1:58 am
                                                                                    Mat
                                                                                    Participant

                                                                                      Jamie, sorry to hear.  For what it's worth, SRS is an easy procedure.  You might also get the benefit of combining radiation with immunotherapy.

                                                                                      • February 7, 2016 at 2:10 am
                                                                                      BrianP
                                                                                      Participant

                                                                                        I'm sorry Jamie.  I'm praying that your doctor is right in is hesitance to call them mets.  If they are something it sounds like you're catching them early.  Folks have had some great response to SRS and Nivo. 

                                                                                        Hang in there.  Prayers coming your way.

                                                                                        Brian

                                                                                        • February 7, 2016 at 2:10 am
                                                                                        BrianP
                                                                                        Participant

                                                                                          I'm sorry Jamie.  I'm praying that your doctor is right in is hesitance to call them mets.  If they are something it sounds like you're catching them early.  Folks have had some great response to SRS and Nivo. 

                                                                                          Hang in there.  Prayers coming your way.

                                                                                          Brian

                                                                                          • February 7, 2016 at 2:10 am
                                                                                          BrianP
                                                                                          Participant

                                                                                            I'm sorry Jamie.  I'm praying that your doctor is right in is hesitance to call them mets.  If they are something it sounds like you're catching them early.  Folks have had some great response to SRS and Nivo. 

                                                                                            Hang in there.  Prayers coming your way.

                                                                                            Brian

                                                                                            • February 7, 2016 at 4:39 am
                                                                                            AshleyS
                                                                                            Participant

                                                                                              You're so right, Jaime – you have to live one day at a time. It can be tough to do that and to remain positive, but do your best. And as far as your kiddos go, they'll love you unconditionally, no matter what, so use their positivity. In the meantime, get on Opdivo. It's been a lifesaver for so many, including me.

                                                                                              Ashley

                                                                                              • February 7, 2016 at 4:39 am
                                                                                              AshleyS
                                                                                              Participant

                                                                                                You're so right, Jaime – you have to live one day at a time. It can be tough to do that and to remain positive, but do your best. And as far as your kiddos go, they'll love you unconditionally, no matter what, so use their positivity. In the meantime, get on Opdivo. It's been a lifesaver for so many, including me.

                                                                                                Ashley

                                                                                                • February 7, 2016 at 4:39 am
                                                                                                AshleyS
                                                                                                Participant

                                                                                                  You're so right, Jaime – you have to live one day at a time. It can be tough to do that and to remain positive, but do your best. And as far as your kiddos go, they'll love you unconditionally, no matter what, so use their positivity. In the meantime, get on Opdivo. It's been a lifesaver for so many, including me.

                                                                                                  Ashley

                                                                                                  • February 7, 2016 at 2:42 pm
                                                                                                  ed williams
                                                                                                  Participant

                                                                                                    Hi Jamie, in sept.2013 I had three small brain tumors almost the same size as yours. I was treated by cyberknife at the Ottawa General hospital and three months later the post scan showed total resolution with no swelling. I am glad you said no to whole brain radiation, studies are showing that it has bad cognitive decline issues. I hope your meeting with the radiation oncologist goes well. Best wishes!!! Ed

                                                                                                    • February 7, 2016 at 2:42 pm
                                                                                                    ed williams
                                                                                                    Participant

                                                                                                      Hi Jamie, in sept.2013 I had three small brain tumors almost the same size as yours. I was treated by cyberknife at the Ottawa General hospital and three months later the post scan showed total resolution with no swelling. I am glad you said no to whole brain radiation, studies are showing that it has bad cognitive decline issues. I hope your meeting with the radiation oncologist goes well. Best wishes!!! Ed

                                                                                                      • February 7, 2016 at 2:42 pm
                                                                                                      ed williams
                                                                                                      Participant

                                                                                                        Hi Jamie, in sept.2013 I had three small brain tumors almost the same size as yours. I was treated by cyberknife at the Ottawa General hospital and three months later the post scan showed total resolution with no swelling. I am glad you said no to whole brain radiation, studies are showing that it has bad cognitive decline issues. I hope your meeting with the radiation oncologist goes well. Best wishes!!! Ed

                                                                                                        • February 7, 2016 at 4:11 pm
                                                                                                        kylez
                                                                                                        Participant

                                                                                                          Hi Jamie,

                                                                                                          I understand it being devastating news.

                                                                                                          I hope they'll have SRS ready-to-go quickly if the next MRI makes them think it's necessary. I can't comment on the 2-week delay. Both times with me, the mets were caught much later and there was little doubt. I've heard the webinar with Dr. Chiang from Yale where she says the sooner they can be caught, the better. I don't know if you should be in doubt. If you are, and there's a way to get a second opinion quicker than the 2 weeks elapses, maybe that's something to consider. But my own experience was with larger ones both times, so my experience on timing is not a good analogy. Your profile doesn't list where you are treated. For me the first time I was at a Kaiser, the second time I was at UCSF which has super-highly-rated neurosurgery and radiation oncology programs. While at Kaiser I got second opinions several times from UCSF.

                                                                                                          FWIW I had Gamma Knife in 2011. So far so good. I'm just finishing up 2 years in a clinical trial, Nivo is one of hte drugs. 

                                                                                                          Hang in there. 

                                                                                                          – Kyle

                                                                                                            • February 7, 2016 at 4:48 pm
                                                                                                            jamieth29
                                                                                                            Participant
                                                                                                              Kyle-thanks for the info i am being treated both locally in WI and at university of Chicago by Dr Jason Luke. Monday i can hopefully get a hold of him and get his opinion.
                                                                                                              • February 7, 2016 at 4:48 pm
                                                                                                              jamieth29
                                                                                                              Participant
                                                                                                                Kyle-thanks for the info i am being treated both locally in WI and at university of Chicago by Dr Jason Luke. Monday i can hopefully get a hold of him and get his opinion.
                                                                                                                • February 7, 2016 at 4:48 pm
                                                                                                                jamieth29
                                                                                                                Participant
                                                                                                                  Kyle-thanks for the info i am being treated both locally in WI and at university of Chicago by Dr Jason Luke. Monday i can hopefully get a hold of him and get his opinion.
                                                                                                                • February 7, 2016 at 4:11 pm
                                                                                                                kylez
                                                                                                                Participant

                                                                                                                  Hi Jamie,

                                                                                                                  I understand it being devastating news.

                                                                                                                  I hope they'll have SRS ready-to-go quickly if the next MRI makes them think it's necessary. I can't comment on the 2-week delay. Both times with me, the mets were caught much later and there was little doubt. I've heard the webinar with Dr. Chiang from Yale where she says the sooner they can be caught, the better. I don't know if you should be in doubt. If you are, and there's a way to get a second opinion quicker than the 2 weeks elapses, maybe that's something to consider. But my own experience was with larger ones both times, so my experience on timing is not a good analogy. Your profile doesn't list where you are treated. For me the first time I was at a Kaiser, the second time I was at UCSF which has super-highly-rated neurosurgery and radiation oncology programs. While at Kaiser I got second opinions several times from UCSF.

                                                                                                                  FWIW I had Gamma Knife in 2011. So far so good. I'm just finishing up 2 years in a clinical trial, Nivo is one of hte drugs. 

                                                                                                                  Hang in there. 

                                                                                                                  – Kyle

                                                                                                                  • February 7, 2016 at 4:11 pm
                                                                                                                  kylez
                                                                                                                  Participant

                                                                                                                    Hi Jamie,

                                                                                                                    I understand it being devastating news.

                                                                                                                    I hope they'll have SRS ready-to-go quickly if the next MRI makes them think it's necessary. I can't comment on the 2-week delay. Both times with me, the mets were caught much later and there was little doubt. I've heard the webinar with Dr. Chiang from Yale where she says the sooner they can be caught, the better. I don't know if you should be in doubt. If you are, and there's a way to get a second opinion quicker than the 2 weeks elapses, maybe that's something to consider. But my own experience was with larger ones both times, so my experience on timing is not a good analogy. Your profile doesn't list where you are treated. For me the first time I was at a Kaiser, the second time I was at UCSF which has super-highly-rated neurosurgery and radiation oncology programs. While at Kaiser I got second opinions several times from UCSF.

                                                                                                                    FWIW I had Gamma Knife in 2011. So far so good. I'm just finishing up 2 years in a clinical trial, Nivo is one of hte drugs. 

                                                                                                                    Hang in there. 

                                                                                                                    – Kyle

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