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Bad news from the MRI
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Bad news from the MRI

› Forums › General Melanoma Community › Bad news from the MRI

  • Post
    • December 7, 2011 at 11:52 pm
    laurieformike
    Participant

      Husband got bad news from the MRI, new mets. The Gamaknife was 4months ago, they want to do WBR starting next week. So afraid of out come, with the side effects and all. Was looking to see if anyone had experences with the WBR? Also was reading about somepeople on the Board here have had good results with Yevoy with brain mets, and would it be option since he has had to reduce dose on Zelboraf twice now? So need to be able to discuss with someone, he is so depresed now. He was feeling so much better after reducing the dose on the Zelboraf but still having bad joint pain!

      Husband got bad news from the MRI, new mets. The Gamaknife was 4months ago, they want to do WBR starting next week. So afraid of out come, with the side effects and all. Was looking to see if anyone had experences with the WBR? Also was reading about somepeople on the Board here have had good results with Yevoy with brain mets, and would it be option since he has had to reduce dose on Zelboraf twice now? So need to be able to discuss with someone, he is so depresed now. He was feeling so much better after reducing the dose on the Zelboraf but still having bad joint pain!

    Viewing 11 reply threads
    • Replies
        • December 8, 2011 at 1:43 am
        deardad
        Participant

          Im sorry to hear about your husband. I dont have any information I can share regarding WBR. How many mets did they gamaknife 4 months ago? My dad is on Zelboraf and is getting MRI results Monday, he had a single met 6 months ago removed via craniotomy and I hoping desperately it hasn't returned in the brain.

          It must be difficult seeing your husband depressed, I really wish I could empart some useful advice, but I'm sure many will post soon. Hang in there.

          Take care

          Nahmi from Melbourne

          • December 8, 2011 at 1:43 am
          deardad
          Participant

            Im sorry to hear about your husband. I dont have any information I can share regarding WBR. How many mets did they gamaknife 4 months ago? My dad is on Zelboraf and is getting MRI results Monday, he had a single met 6 months ago removed via craniotomy and I hoping desperately it hasn't returned in the brain.

            It must be difficult seeing your husband depressed, I really wish I could empart some useful advice, but I'm sure many will post soon. Hang in there.

            Take care

            Nahmi from Melbourne

            • December 8, 2011 at 1:43 am
            deardad
            Participant

              Im sorry to hear about your husband. I dont have any information I can share regarding WBR. How many mets did they gamaknife 4 months ago? My dad is on Zelboraf and is getting MRI results Monday, he had a single met 6 months ago removed via craniotomy and I hoping desperately it hasn't returned in the brain.

              It must be difficult seeing your husband depressed, I really wish I could empart some useful advice, but I'm sure many will post soon. Hang in there.

              Take care

              Nahmi from Melbourne

                • December 8, 2011 at 1:57 am
                laurieformike
                Participant

                  They said they did 6 small ones. And now he has maybe 10 very small ones.

                  • December 8, 2011 at 5:36 am
                  deardad
                  Participant

                    Ok, I can see some have posted already. My only suggestion is to try to stay positive, go forward and don't look back. It sounds like everyone's experience is different with WBR, some do tolerate it with minimal side effects. 

                    All the best

                    Nahmi from Melbourne

                    • December 8, 2011 at 5:36 am
                    deardad
                    Participant

                      Ok, I can see some have posted already. My only suggestion is to try to stay positive, go forward and don't look back. It sounds like everyone's experience is different with WBR, some do tolerate it with minimal side effects. 

                      All the best

                      Nahmi from Melbourne

                      • December 8, 2011 at 5:36 am
                      deardad
                      Participant

                        Ok, I can see some have posted already. My only suggestion is to try to stay positive, go forward and don't look back. It sounds like everyone's experience is different with WBR, some do tolerate it with minimal side effects. 

                        All the best

                        Nahmi from Melbourne

                        • December 8, 2011 at 1:57 am
                        laurieformike
                        Participant

                          They said they did 6 small ones. And now he has maybe 10 very small ones.

                          • December 8, 2011 at 1:57 am
                          laurieformike
                          Participant

                            They said they did 6 small ones. And now he has maybe 10 very small ones.

                            • December 8, 2011 at 5:36 am
                            FormerCaregiver
                            Participant

                              Nahmi, I would just like to wish your dad good luck with his MRI results.

                              I have just read in the news that Jim Stynes has had more brain surgery for melanoma mets. Hopefully his prognosis has improved significantly as a result.

                              Best wishes

                              Frank from Australia

                              • December 8, 2011 at 5:36 am
                              FormerCaregiver
                              Participant

                                Nahmi, I would just like to wish your dad good luck with his MRI results.

                                I have just read in the news that Jim Stynes has had more brain surgery for melanoma mets. Hopefully his prognosis has improved significantly as a result.

                                Best wishes

                                Frank from Australia

                                • December 8, 2011 at 5:36 am
                                FormerCaregiver
                                Participant

                                  Nahmi, I would just like to wish your dad good luck with his MRI results.

                                  I have just read in the news that Jim Stynes has had more brain surgery for melanoma mets. Hopefully his prognosis has improved significantly as a result.

                                  Best wishes

                                  Frank from Australia

                                  • December 9, 2011 at 4:33 am
                                  deardad
                                  Participant

                                    Thanks a lot Frank I appreciate your kind words.  Dad went in today to have some blood work done and an ECG so that he could receive more BRAF tablets. No MRI results until Monday but the blood work must have been ok or they wouldn't have given him more BRAF. His surgeon passed him in the hall and said that he spoken to his oncologist and that he was doing well on the drug….so I take that good news and run with it. I'll take any good news.

                                    I did hear about Jim Stynes  and I hope too that as a result of the surgery he will get more time with his family. 45 with 2 kids…that's tough. Will let you know how dad goes.

                                    Thanks Frank

                                    Nahmi

                                    • December 9, 2011 at 4:33 am
                                    deardad
                                    Participant

                                      Thanks a lot Frank I appreciate your kind words.  Dad went in today to have some blood work done and an ECG so that he could receive more BRAF tablets. No MRI results until Monday but the blood work must have been ok or they wouldn't have given him more BRAF. His surgeon passed him in the hall and said that he spoken to his oncologist and that he was doing well on the drug….so I take that good news and run with it. I'll take any good news.

                                      I did hear about Jim Stynes  and I hope too that as a result of the surgery he will get more time with his family. 45 with 2 kids…that's tough. Will let you know how dad goes.

                                      Thanks Frank

                                      Nahmi

                                      • December 9, 2011 at 4:33 am
                                      deardad
                                      Participant

                                        Thanks a lot Frank I appreciate your kind words.  Dad went in today to have some blood work done and an ECG so that he could receive more BRAF tablets. No MRI results until Monday but the blood work must have been ok or they wouldn't have given him more BRAF. His surgeon passed him in the hall and said that he spoken to his oncologist and that he was doing well on the drug….so I take that good news and run with it. I'll take any good news.

                                        I did hear about Jim Stynes  and I hope too that as a result of the surgery he will get more time with his family. 45 with 2 kids…that's tough. Will let you know how dad goes.

                                        Thanks Frank

                                        Nahmi

                                      • December 8, 2011 at 5:02 am
                                      FormerCaregiver
                                      Participant

                                        Sorry to read that your husband has new brain mets. There is a small number of people here who have had WBR, so I hope that they will they will give you some feedback. Yervoy can be a good option, but that depends on the opinion of the oncologist and your husband's condition.

                                        Hope this helps.

                                        Frank from Australia

                                          • December 8, 2011 at 5:29 am
                                          Phil S
                                          Participant
                                            My husband did WBR about one month ago, and all went well. He will have a MRI after Christmas to see the results. He is doing well, working and functioning completely normal in between biochemo treatments at MDAnderson. Look up WBR in search on mpip, and read Katy’s account, my experience with WBR as she details the process.We went into WBR with the attitude that we needed to gain control of his brain mets and we don’t look back. Just so you know it wasn’t scary, and Phil’s mental capacity appears the same as before radiation. Good luck! Valerie (Phil’s wife)
                                            • December 8, 2011 at 5:29 am
                                            Phil S
                                            Participant
                                              My husband did WBR about one month ago, and all went well. He will have a MRI after Christmas to see the results. He is doing well, working and functioning completely normal in between biochemo treatments at MDAnderson. Look up WBR in search on mpip, and read Katy’s account, my experience with WBR as she details the process.We went into WBR with the attitude that we needed to gain control of his brain mets and we don’t look back. Just so you know it wasn’t scary, and Phil’s mental capacity appears the same as before radiation. Good luck! Valerie (Phil’s wife)
                                              • December 8, 2011 at 5:29 am
                                              Phil S
                                              Participant
                                                My husband did WBR about one month ago, and all went well. He will have a MRI after Christmas to see the results. He is doing well, working and functioning completely normal in between biochemo treatments at MDAnderson. Look up WBR in search on mpip, and read Katy’s account, my experience with WBR as she details the process.We went into WBR with the attitude that we needed to gain control of his brain mets and we don’t look back. Just so you know it wasn’t scary, and Phil’s mental capacity appears the same as before radiation. Good luck! Valerie (Phil’s wife)
                                              • December 8, 2011 at 5:02 am
                                              FormerCaregiver
                                              Participant

                                                Sorry to read that your husband has new brain mets. There is a small number of people here who have had WBR, so I hope that they will they will give you some feedback. Yervoy can be a good option, but that depends on the opinion of the oncologist and your husband's condition.

                                                Hope this helps.

                                                Frank from Australia

                                                • December 8, 2011 at 5:02 am
                                                FormerCaregiver
                                                Participant

                                                  Sorry to read that your husband has new brain mets. There is a small number of people here who have had WBR, so I hope that they will they will give you some feedback. Yervoy can be a good option, but that depends on the opinion of the oncologist and your husband's condition.

                                                  Hope this helps.

                                                  Frank from Australia

                                                  • December 8, 2011 at 1:47 pm
                                                  lyndaloo
                                                  Participant

                                                    Hello – my husband had a craniotomy last May and tomotherapy (similar to gamaknife ) with WBR/ following a month later.  He has continued to work through everything, listening to his body when he needs to nap or lay low.  He is self employed which sometimes is a good thing.  His recent brain scans show no sign of any new tumors.  His eyesight is slightly off but we don't know if this is related to the ipi drug he started last month or side effects from the radiation.  WBR is a scary thought, but people get through this and continue on pretty much as before.

                                                    • December 8, 2011 at 1:47 pm
                                                    lyndaloo
                                                    Participant

                                                      Hello – my husband had a craniotomy last May and tomotherapy (similar to gamaknife ) with WBR/ following a month later.  He has continued to work through everything, listening to his body when he needs to nap or lay low.  He is self employed which sometimes is a good thing.  His recent brain scans show no sign of any new tumors.  His eyesight is slightly off but we don't know if this is related to the ipi drug he started last month or side effects from the radiation.  WBR is a scary thought, but people get through this and continue on pretty much as before.

                                                      • December 8, 2011 at 1:47 pm
                                                      lyndaloo
                                                      Participant

                                                        Hello – my husband had a craniotomy last May and tomotherapy (similar to gamaknife ) with WBR/ following a month later.  He has continued to work through everything, listening to his body when he needs to nap or lay low.  He is self employed which sometimes is a good thing.  His recent brain scans show no sign of any new tumors.  His eyesight is slightly off but we don't know if this is related to the ipi drug he started last month or side effects from the radiation.  WBR is a scary thought, but people get through this and continue on pretty much as before.

                                                        • December 9, 2011 at 4:50 pm
                                                        KatyWI
                                                        Participant

                                                          Laurie,

                                                          I wrote up my experience with WBR when I finished in October.  For me it was pretty uneventful. 

                                                          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/my-experience-wbr

                                                          Think of it this way…if you/your husband are fearful about one of the bad outcomes we've all heard about, you must acknowleged the possiblity of a totally uneventful outcome. "Worry" about that instead! 

                                                          Best wishes to you both on making the decisions about next steps and, if that's his treatment choice, on the WBR too.

                                                          KatyWI

                                                          • December 9, 2011 at 4:50 pm
                                                          KatyWI
                                                          Participant

                                                            Laurie,

                                                            I wrote up my experience with WBR when I finished in October.  For me it was pretty uneventful. 

                                                            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/my-experience-wbr

                                                            Think of it this way…if you/your husband are fearful about one of the bad outcomes we've all heard about, you must acknowleged the possiblity of a totally uneventful outcome. "Worry" about that instead! 

                                                            Best wishes to you both on making the decisions about next steps and, if that's his treatment choice, on the WBR too.

                                                            KatyWI

                                                            • December 9, 2011 at 4:50 pm
                                                            KatyWI
                                                            Participant

                                                              Laurie,

                                                              I wrote up my experience with WBR when I finished in October.  For me it was pretty uneventful. 

                                                              http://www.melanoma.org/community/mpip-melanoma-patients-information-page/my-experience-wbr

                                                              Think of it this way…if you/your husband are fearful about one of the bad outcomes we've all heard about, you must acknowleged the possiblity of a totally uneventful outcome. "Worry" about that instead! 

                                                              Best wishes to you both on making the decisions about next steps and, if that's his treatment choice, on the WBR too.

                                                              KatyWI

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