The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

roll call: brain mets

Forums General Melanoma Community roll call: brain mets

  • Post
    lhaley
    Participant

      There have always been a few new at a time that have developed brain mets.  These last few weeks there seems to be many that have posted lately.  Unfortunately even during these short weeks Don has not only developed mets but also has passed. 

      Some of you are already doing great! Some have had brain mets in the past and doing well.  Some are struggling.

      Post and give a little info so that we can gain infor from you.

      Linda

      There have always been a few new at a time that have developed brain mets.  These last few weeks there seems to be many that have posted lately.  Unfortunately even during these short weeks Don has not only developed mets but also has passed. 

      Some of you are already doing great! Some have had brain mets in the past and doing well.  Some are struggling.

      Post and give a little info so that we can gain infor from you.

      Linda

    Viewing 23 reply threads
    • Replies
        lhaley
        Participant

          I complained on Oct 3rd and the met was discovered on the 4th.  The met is 21mm and by the next week was told that it it was bleeding a little less then 1cm.   The rest of the PET is clear.   The tumor is deep in the left lobe and has given me issues with speech, writing and language. They started me on steroids that day because it was already showing symptoms along with edema.

          SRS was done on Oct 17th.  Last week I did end up with EMR because of some headaches ( they decided that this was from the steroid weaning). The MRI showed that there has been no change at all, no more bleeding since the 10th.  There has been discussion when the next MRI will be very soon.  The date has changed a few times.  

          As of yesterday I am now on 1/2 of a tablet a day with the steroids and they will now wait for 5 days before they then go to every other day. 

          They have told me that if I don't respond quickly by the SRS they have already told me the plan on how to do go in to do the crainectomy which will hopefully from a lower area that will hopefully not do as much damage.   By the time I spoke to my oncologist on the 4th I was already loosing my words and typing was reversing everything I had written.  This last week or two have had much less issues.  

          My melanoma history is much different then most. My primary was in 79, stage 1A.  I did have more primaries over the years but in 06 I developed a large tumor deep under the primary in 79.  I did do a trial of GMCSF for the year.  In 09 I had 2 recurrances in the bladder. Then in 11' I had 1 node behind the clavicle, then 2 different nodes (different times) in the right arm.  I did have surgery and radiation.  

          I do want to get these steroids off of me quickly because in the past my own immune system has helped (except this has been the biggest issue).  Tomorrow I'm to be given the final date for the MRI to see if this has worked.

          Linda

          lhaley
          Participant

            I complained on Oct 3rd and the met was discovered on the 4th.  The met is 21mm and by the next week was told that it it was bleeding a little less then 1cm.   The rest of the PET is clear.   The tumor is deep in the left lobe and has given me issues with speech, writing and language. They started me on steroids that day because it was already showing symptoms along with edema.

            SRS was done on Oct 17th.  Last week I did end up with EMR because of some headaches ( they decided that this was from the steroid weaning). The MRI showed that there has been no change at all, no more bleeding since the 10th.  There has been discussion when the next MRI will be very soon.  The date has changed a few times.  

            As of yesterday I am now on 1/2 of a tablet a day with the steroids and they will now wait for 5 days before they then go to every other day. 

            They have told me that if I don't respond quickly by the SRS they have already told me the plan on how to do go in to do the crainectomy which will hopefully from a lower area that will hopefully not do as much damage.   By the time I spoke to my oncologist on the 4th I was already loosing my words and typing was reversing everything I had written.  This last week or two have had much less issues.  

            My melanoma history is much different then most. My primary was in 79, stage 1A.  I did have more primaries over the years but in 06 I developed a large tumor deep under the primary in 79.  I did do a trial of GMCSF for the year.  In 09 I had 2 recurrances in the bladder. Then in 11' I had 1 node behind the clavicle, then 2 different nodes (different times) in the right arm.  I did have surgery and radiation.  

            I do want to get these steroids off of me quickly because in the past my own immune system has helped (except this has been the biggest issue).  Tomorrow I'm to be given the final date for the MRI to see if this has worked.

            Linda

            lhaley
            Participant

              I complained on Oct 3rd and the met was discovered on the 4th.  The met is 21mm and by the next week was told that it it was bleeding a little less then 1cm.   The rest of the PET is clear.   The tumor is deep in the left lobe and has given me issues with speech, writing and language. They started me on steroids that day because it was already showing symptoms along with edema.

              SRS was done on Oct 17th.  Last week I did end up with EMR because of some headaches ( they decided that this was from the steroid weaning). The MRI showed that there has been no change at all, no more bleeding since the 10th.  There has been discussion when the next MRI will be very soon.  The date has changed a few times.  

              As of yesterday I am now on 1/2 of a tablet a day with the steroids and they will now wait for 5 days before they then go to every other day. 

              They have told me that if I don't respond quickly by the SRS they have already told me the plan on how to do go in to do the crainectomy which will hopefully from a lower area that will hopefully not do as much damage.   By the time I spoke to my oncologist on the 4th I was already loosing my words and typing was reversing everything I had written.  This last week or two have had much less issues.  

              My melanoma history is much different then most. My primary was in 79, stage 1A.  I did have more primaries over the years but in 06 I developed a large tumor deep under the primary in 79.  I did do a trial of GMCSF for the year.  In 09 I had 2 recurrances in the bladder. Then in 11' I had 1 node behind the clavicle, then 2 different nodes (different times) in the right arm.  I did have surgery and radiation.  

              I do want to get these steroids off of me quickly because in the past my own immune system has helped (except this has been the biggest issue).  Tomorrow I'm to be given the final date for the MRI to see if this has worked.

              Linda

              glewis923
              Participant

                Hey Linda-  More detail is on my post on 11-4.  In very short-  Around 11 to 13 tumors found on Feb.  26-2011.

                A couple a little over a cm. rest avg 4 or 5 mm.  Had 7 SRS'ed (Novalis TS) and immediatly thereafter had WBR.  Through with radiation by end of Feb.   Started IPI/Yervoy early March and completed 4 rnds.  As of Oct. 1st my brain tumors are stable with a little sign of regression and 1 that may have grown just a tad.  Around mid-Aug. started Zelboraf.  I feel the radiation and Yervoy kept me alive.  

                Love and Take Care Everyone-  Grady.

                glewis923
                Participant

                  Hey Linda-  More detail is on my post on 11-4.  In very short-  Around 11 to 13 tumors found on Feb.  26-2011.

                  A couple a little over a cm. rest avg 4 or 5 mm.  Had 7 SRS'ed (Novalis TS) and immediatly thereafter had WBR.  Through with radiation by end of Feb.   Started IPI/Yervoy early March and completed 4 rnds.  As of Oct. 1st my brain tumors are stable with a little sign of regression and 1 that may have grown just a tad.  Around mid-Aug. started Zelboraf.  I feel the radiation and Yervoy kept me alive.  

                  Love and Take Care Everyone-  Grady.

                  glewis923
                  Participant

                    Hey Linda-  More detail is on my post on 11-4.  In very short-  Around 11 to 13 tumors found on Feb.  26-2011.

                    A couple a little over a cm. rest avg 4 or 5 mm.  Had 7 SRS'ed (Novalis TS) and immediatly thereafter had WBR.  Through with radiation by end of Feb.   Started IPI/Yervoy early March and completed 4 rnds.  As of Oct. 1st my brain tumors are stable with a little sign of regression and 1 that may have grown just a tad.  Around mid-Aug. started Zelboraf.  I feel the radiation and Yervoy kept me alive.  

                    Love and Take Care Everyone-  Grady.

                      deardad
                      Participant

                        Hi Linda,

                        It seems that everyone's melanoma is different. My dad's MM went straight to his brain 6 months after DEC 10 stage 3B diagnosis. A single lesion which doubled and bled after 6 weeks. He had a craniotomy only to find 3 months later liver, spleen and further skin mets. I really didn't think he'd make the end of this year and now that he on Vemurafenib, he is clear on a PET scan. MRI was clear too.  So we are in a good place at present and I suppose what I'm saying here is that every story is different, so remain strong and positive that things will work out ok for you. 

                        Take care

                        Nahmi from Melbourne

                        deardad
                        Participant

                          Hi Linda,

                          It seems that everyone's melanoma is different. My dad's MM went straight to his brain 6 months after DEC 10 stage 3B diagnosis. A single lesion which doubled and bled after 6 weeks. He had a craniotomy only to find 3 months later liver, spleen and further skin mets. I really didn't think he'd make the end of this year and now that he on Vemurafenib, he is clear on a PET scan. MRI was clear too.  So we are in a good place at present and I suppose what I'm saying here is that every story is different, so remain strong and positive that things will work out ok for you. 

                          Take care

                          Nahmi from Melbourne

                          deardad
                          Participant

                            Hi Linda,

                            It seems that everyone's melanoma is different. My dad's MM went straight to his brain 6 months after DEC 10 stage 3B diagnosis. A single lesion which doubled and bled after 6 weeks. He had a craniotomy only to find 3 months later liver, spleen and further skin mets. I really didn't think he'd make the end of this year and now that he on Vemurafenib, he is clear on a PET scan. MRI was clear too.  So we are in a good place at present and I suppose what I'm saying here is that every story is different, so remain strong and positive that things will work out ok for you. 

                            Take care

                            Nahmi from Melbourne

                            Lisa13
                            Participant

                              Just was diagnosed with 2 brain mets 3 days ago and I'm devastated. I just finished Yervoy 3 weeks ago and had amazing success with all my lung mets reducing by 50% (except for 2 which grew a little bit, but might be inflammation). I have not had a brain MRI since July 28th, so I have no idea when these small tumours arrived.  My immune system is still reved from the Yervoy, so I'm hoping it could still do a little something to the mets in my brain, if they havn't already been in there.

                              One of my tumours can be removed easily, but the other one is deep in the left side of my brain and is surrounded in blood. I'm lucky that both these tumours are in "great and good" places and I don't have symptoms.  They want me to do WBR, but I want to try something else first since I just have 2, but I'm not sure what they can do with the one in a trickey spot. I have another meeting tomorrow to go over my decision to delay WBR.  If these can come out another way, I might be lucky enough to not have anything grow back for a bit due to Yervoy (as per my Dr's hope).  I read this amazing thing from a professor that gives me hope…..

                               

                              Professor Kim Margolin: If ipilimumab works relatively well as a systemic therapy for patients with metastatic melanoma and if activated T-cells that may perceive melanoma antigens and target them for cytotoxicity, and if those cells can get into the brain, which they seem to be able to do, at least in patients whose blood-brain barrier may be somewhat leaky by the presence of a tumor, then the effect of the ipilimumab on the T-cells which in turn can be toxic against tumor cells should work in the brain at least as well as or nearly as well as it works in extracranial sites. 

                               

                              I also chatted with a girl today whose been dealing with brain mets for 2 years – several of them!

                              Lisa13
                              Participant

                                Just was diagnosed with 2 brain mets 3 days ago and I'm devastated. I just finished Yervoy 3 weeks ago and had amazing success with all my lung mets reducing by 50% (except for 2 which grew a little bit, but might be inflammation). I have not had a brain MRI since July 28th, so I have no idea when these small tumours arrived.  My immune system is still reved from the Yervoy, so I'm hoping it could still do a little something to the mets in my brain, if they havn't already been in there.

                                One of my tumours can be removed easily, but the other one is deep in the left side of my brain and is surrounded in blood. I'm lucky that both these tumours are in "great and good" places and I don't have symptoms.  They want me to do WBR, but I want to try something else first since I just have 2, but I'm not sure what they can do with the one in a trickey spot. I have another meeting tomorrow to go over my decision to delay WBR.  If these can come out another way, I might be lucky enough to not have anything grow back for a bit due to Yervoy (as per my Dr's hope).  I read this amazing thing from a professor that gives me hope…..

                                 

                                Professor Kim Margolin: If ipilimumab works relatively well as a systemic therapy for patients with metastatic melanoma and if activated T-cells that may perceive melanoma antigens and target them for cytotoxicity, and if those cells can get into the brain, which they seem to be able to do, at least in patients whose blood-brain barrier may be somewhat leaky by the presence of a tumor, then the effect of the ipilimumab on the T-cells which in turn can be toxic against tumor cells should work in the brain at least as well as or nearly as well as it works in extracranial sites. 

                                 

                                I also chatted with a girl today whose been dealing with brain mets for 2 years – several of them!

                                Lisa13
                                Participant

                                  Just was diagnosed with 2 brain mets 3 days ago and I'm devastated. I just finished Yervoy 3 weeks ago and had amazing success with all my lung mets reducing by 50% (except for 2 which grew a little bit, but might be inflammation). I have not had a brain MRI since July 28th, so I have no idea when these small tumours arrived.  My immune system is still reved from the Yervoy, so I'm hoping it could still do a little something to the mets in my brain, if they havn't already been in there.

                                  One of my tumours can be removed easily, but the other one is deep in the left side of my brain and is surrounded in blood. I'm lucky that both these tumours are in "great and good" places and I don't have symptoms.  They want me to do WBR, but I want to try something else first since I just have 2, but I'm not sure what they can do with the one in a trickey spot. I have another meeting tomorrow to go over my decision to delay WBR.  If these can come out another way, I might be lucky enough to not have anything grow back for a bit due to Yervoy (as per my Dr's hope).  I read this amazing thing from a professor that gives me hope…..

                                   

                                  Professor Kim Margolin: If ipilimumab works relatively well as a systemic therapy for patients with metastatic melanoma and if activated T-cells that may perceive melanoma antigens and target them for cytotoxicity, and if those cells can get into the brain, which they seem to be able to do, at least in patients whose blood-brain barrier may be somewhat leaky by the presence of a tumor, then the effect of the ipilimumab on the T-cells which in turn can be toxic against tumor cells should work in the brain at least as well as or nearly as well as it works in extracranial sites. 

                                   

                                  I also chatted with a girl today whose been dealing with brain mets for 2 years – several of them!

                                  glewis923
                                  Participant

                                    Correction:  Found brain tumors JAN. 26th 2011…..not FEB. 26th.

                                    OK, so WBR is a good excuse, right???  Ha-haaa-weep.

                                    glewis923
                                    Participant

                                      Correction:  Found brain tumors JAN. 26th 2011…..not FEB. 26th.

                                      OK, so WBR is a good excuse, right???  Ha-haaa-weep.

                                      glewis923
                                      Participant

                                        Correction:  Found brain tumors JAN. 26th 2011…..not FEB. 26th.

                                        OK, so WBR is a good excuse, right???  Ha-haaa-weep.

                                      Angela C
                                      Participant

                                        Hello.

                                        I was diagnosed with my first brain met in Augus of this yeart. It was 2mm in size and treated with SRS (Novalis). I started Yervoy about a week and a half later. I have my first follow up brain MRI on November 15th. My last dose of Yervoy will be next Tuesday and I'll have scans the week after Thanksgiving for the rest of my body. The only major tumor I am dealing with is in my adrenal gland. I have a few suspected spots in my lungs, but they have not changed in almost a year now, so they may not be melanoma. I also have an enlarged lymph node at my clavicle that is most likley melanoma, but has never been biopsied. Having melanoma go to the brain is definitely a scary thing, but I have a few people on this forum doing well years later and this is encouraging!

                                        Thanks for starting this thread! It will be nice to see who else is going through this right now and to hear some success stories!

                                        ~Angela

                                        Angela C
                                        Participant

                                          Hello.

                                          I was diagnosed with my first brain met in Augus of this yeart. It was 2mm in size and treated with SRS (Novalis). I started Yervoy about a week and a half later. I have my first follow up brain MRI on November 15th. My last dose of Yervoy will be next Tuesday and I'll have scans the week after Thanksgiving for the rest of my body. The only major tumor I am dealing with is in my adrenal gland. I have a few suspected spots in my lungs, but they have not changed in almost a year now, so they may not be melanoma. I also have an enlarged lymph node at my clavicle that is most likley melanoma, but has never been biopsied. Having melanoma go to the brain is definitely a scary thing, but I have a few people on this forum doing well years later and this is encouraging!

                                          Thanks for starting this thread! It will be nice to see who else is going through this right now and to hear some success stories!

                                          ~Angela

                                          Angela C
                                          Participant

                                            Hello.

                                            I was diagnosed with my first brain met in Augus of this yeart. It was 2mm in size and treated with SRS (Novalis). I started Yervoy about a week and a half later. I have my first follow up brain MRI on November 15th. My last dose of Yervoy will be next Tuesday and I'll have scans the week after Thanksgiving for the rest of my body. The only major tumor I am dealing with is in my adrenal gland. I have a few suspected spots in my lungs, but they have not changed in almost a year now, so they may not be melanoma. I also have an enlarged lymph node at my clavicle that is most likley melanoma, but has never been biopsied. Having melanoma go to the brain is definitely a scary thing, but I have a few people on this forum doing well years later and this is encouraging!

                                            Thanks for starting this thread! It will be nice to see who else is going through this right now and to hear some success stories!

                                            ~Angela

                                            jag
                                            Participant
                                              Well, I know it may seem unlikely, but I have had 6 craniotomies + SRS + patch radiation boost. If you read my profile, you can see that I have been through a lot. I wish there was an easy solution to brain mets, but to be truthful, a good surgeon, supportive wife, and lots and lots of prayers have gotten me through all of this, that and an ability to laugh at life. I just had my 40th MRI, and I have been disease free for over 3 years now, today my newly pregnant wife and I just had a long day of surgery in our brand new mobile practice. Life after brainets does exist, if you search throu the profiles, you will find Carole K., markfromcatskills, alicia, jerry from cape cod and I all have survived, There are people who have beat this out there, I just happen to be one of the few lame enough to check in here every so often.
                                              jag
                                              Participant
                                                Well, I know it may seem unlikely, but I have had 6 craniotomies + SRS + patch radiation boost. If you read my profile, you can see that I have been through a lot. I wish there was an easy solution to brain mets, but to be truthful, a good surgeon, supportive wife, and lots and lots of prayers have gotten me through all of this, that and an ability to laugh at life. I just had my 40th MRI, and I have been disease free for over 3 years now, today my newly pregnant wife and I just had a long day of surgery in our brand new mobile practice. Life after brainets does exist, if you search throu the profiles, you will find Carole K., markfromcatskills, alicia, jerry from cape cod and I all have survived, There are people who have beat this out there, I just happen to be one of the few lame enough to check in here every so often.
                                                jag
                                                Participant
                                                  Well, I know it may seem unlikely, but I have had 6 craniotomies + SRS + patch radiation boost. If you read my profile, you can see that I have been through a lot. I wish there was an easy solution to brain mets, but to be truthful, a good surgeon, supportive wife, and lots and lots of prayers have gotten me through all of this, that and an ability to laugh at life. I just had my 40th MRI, and I have been disease free for over 3 years now, today my newly pregnant wife and I just had a long day of surgery in our brand new mobile practice. Life after brainets does exist, if you search throu the profiles, you will find Carole K., markfromcatskills, alicia, jerry from cape cod and I all have survived, There are people who have beat this out there, I just happen to be one of the few lame enough to check in here every so often.
                                                  momof2kids
                                                  Participant

                                                    I started off my Melanoma cancer with Brain Mets back in July 2011.

                                                    Had a huge orange sized one removed via Craniotomy.  They left a quarter size one in the other half of my brain and then treated both areas with Gamma Knife. 

                                                    During my last MRI/CT Scans back in September 2011, my brain mets were still shrinking due to the Gamma Knife, doctor saw a small "speck" on my scan, but couldn't confirm/deny if it was anything, said we'd see in 2 months.

                                                    Then I was told I had spots in my Liver & Right Lung too (finished 4th round of Yervoy Nov. 2nd 2011).

                                                    I'm due for another CT Scan & MRI Nov. 28th 2011, and we will see if anything has shrunk, grown or new mets have grown.

                                                    Seeing others who have beat these Brain Mets is always a blessing, especially when I started off with those, and have a long fight to go to see my kids grow up!

                                                    momof2kids
                                                    Participant

                                                      I started off my Melanoma cancer with Brain Mets back in July 2011.

                                                      Had a huge orange sized one removed via Craniotomy.  They left a quarter size one in the other half of my brain and then treated both areas with Gamma Knife. 

                                                      During my last MRI/CT Scans back in September 2011, my brain mets were still shrinking due to the Gamma Knife, doctor saw a small "speck" on my scan, but couldn't confirm/deny if it was anything, said we'd see in 2 months.

                                                      Then I was told I had spots in my Liver & Right Lung too (finished 4th round of Yervoy Nov. 2nd 2011).

                                                      I'm due for another CT Scan & MRI Nov. 28th 2011, and we will see if anything has shrunk, grown or new mets have grown.

                                                      Seeing others who have beat these Brain Mets is always a blessing, especially when I started off with those, and have a long fight to go to see my kids grow up!

                                                      momof2kids
                                                      Participant

                                                        I started off my Melanoma cancer with Brain Mets back in July 2011.

                                                        Had a huge orange sized one removed via Craniotomy.  They left a quarter size one in the other half of my brain and then treated both areas with Gamma Knife. 

                                                        During my last MRI/CT Scans back in September 2011, my brain mets were still shrinking due to the Gamma Knife, doctor saw a small "speck" on my scan, but couldn't confirm/deny if it was anything, said we'd see in 2 months.

                                                        Then I was told I had spots in my Liver & Right Lung too (finished 4th round of Yervoy Nov. 2nd 2011).

                                                        I'm due for another CT Scan & MRI Nov. 28th 2011, and we will see if anything has shrunk, grown or new mets have grown.

                                                        Seeing others who have beat these Brain Mets is always a blessing, especially when I started off with those, and have a long fight to go to see my kids grow up!

                                                        robyn44
                                                        Participant

                                                           I woke up Oct. 27, 2009 with a horrible headache and unable to use my left hand. Went to ER, CT done and found a lesion on the left frontal lobe "in the speech center" and one on the right parietal lobe. Both were over 2cm and had bled. I was stage 3b  for 6months prior to this. Seen immediatly by oncologist who gave very poor prognosis. Began having parital seizures. Onc. attempted to hospitalize me and begin WBR. I refused and used a connection and was seen immediatly by two locla Neurosurgeons who told me I was not a surgical candiate due to location, size and having more than one lesion.They did recommend Gamma Knife at that time. I was being seen at MDAnderson and contacted my Melanoma specialist that put together an amazing team and I hd first Gamma Knife procedure Nov. 5 on both lesions. Neurosurgeon was conflicted about attempting GK or going straight to Crani but felt it was worth a try. GK was 50% successful.

                                                          The right lesion stabilized, left continued to grow and bleed. Develped speech aphasia. Crani scheduled for Dec. 29 2009. This was done while I was awake. Was told I would probably at minimum lose ability to speak or understand language. I was able to talk, read and understand language immediatly. In short, I have had a total of 5 crani's, 3 gamma knife sessions

                                                          . I have had a left thorocotomy as well.  One small lesion in left lung. I have been on and off the dreaded steroids for the past  years. I have not regained sensation or full mobility of left hand. Small price to pay! I am scheduled for MRI tomorrow at MDA and if all clear will begin Zelboraf this week. 

                                                          I live a very busy, fairly normal life at this point. I have 2 young boys (3, 6) and am able to fuly participate in all aspects of their lives.  I work full time as the Director of a Psychiatric Treatment Center for Children. I have been fortunate to respond to surgery and recover so quickly so far.  For me the thoracotomy was much more difficult than any of the recoveries from the brain. Prior to advancing from stage 3 to 4 I was taking Temodar and Thalidomide. I failed Temodar x2, and failed Sorefinib(sp).

                                                          I have been encouraged by so many here over the past 2 years and wish everyone continued success! 

                                                            Phil S
                                                            Participant
                                                              Phil had right middle lobe of lung removed in july2011 for single lung tumor that was discovered on routine scan. Less than three months later on Sept. 30, Phil woke up with severe headache and couldn’t walk straight, discovered large brain tumor 2.5 cm that had bled, had surgery that week in Boston. On subsequent MRI, two other small brain tumors 4mm and 5mm were spotted and all doctors involved recommended WBR, based on multiple areas and also the size of surgical cavity which was quite large due to the bleed. They felt that surgical area could best be stabilized by WBR, due to high likelihood cancer could return to that area. Headed for first time to MD Anderson this week, want to try some treatment ASAP. Phil has only done interferon and two months of leukine so far. Phil is currently doing well, no issues so far with WBR, which he finishes up tomorrow. He works and has no physical restrictions.
                                                              Phil S
                                                              Participant
                                                                Phil had right middle lobe of lung removed in july2011 for single lung tumor that was discovered on routine scan. Less than three months later on Sept. 30, Phil woke up with severe headache and couldn’t walk straight, discovered large brain tumor 2.5 cm that had bled, had surgery that week in Boston. On subsequent MRI, two other small brain tumors 4mm and 5mm were spotted and all doctors involved recommended WBR, based on multiple areas and also the size of surgical cavity which was quite large due to the bleed. They felt that surgical area could best be stabilized by WBR, due to high likelihood cancer could return to that area. Headed for first time to MD Anderson this week, want to try some treatment ASAP. Phil has only done interferon and two months of leukine so far. Phil is currently doing well, no issues so far with WBR, which he finishes up tomorrow. He works and has no physical restrictions.
                                                                Phil S
                                                                Participant
                                                                  Phil had right middle lobe of lung removed in july2011 for single lung tumor that was discovered on routine scan. Less than three months later on Sept. 30, Phil woke up with severe headache and couldn’t walk straight, discovered large brain tumor 2.5 cm that had bled, had surgery that week in Boston. On subsequent MRI, two other small brain tumors 4mm and 5mm were spotted and all doctors involved recommended WBR, based on multiple areas and also the size of surgical cavity which was quite large due to the bleed. They felt that surgical area could best be stabilized by WBR, due to high likelihood cancer could return to that area. Headed for first time to MD Anderson this week, want to try some treatment ASAP. Phil has only done interferon and two months of leukine so far. Phil is currently doing well, no issues so far with WBR, which he finishes up tomorrow. He works and has no physical restrictions.
                                                                robyn44
                                                                Participant

                                                                   I woke up Oct. 27, 2009 with a horrible headache and unable to use my left hand. Went to ER, CT done and found a lesion on the left frontal lobe "in the speech center" and one on the right parietal lobe. Both were over 2cm and had bled. I was stage 3b  for 6months prior to this. Seen immediatly by oncologist who gave very poor prognosis. Began having parital seizures. Onc. attempted to hospitalize me and begin WBR. I refused and used a connection and was seen immediatly by two locla Neurosurgeons who told me I was not a surgical candiate due to location, size and having more than one lesion.They did recommend Gamma Knife at that time. I was being seen at MDAnderson and contacted my Melanoma specialist that put together an amazing team and I hd first Gamma Knife procedure Nov. 5 on both lesions. Neurosurgeon was conflicted about attempting GK or going straight to Crani but felt it was worth a try. GK was 50% successful.

                                                                  The right lesion stabilized, left continued to grow and bleed. Develped speech aphasia. Crani scheduled for Dec. 29 2009. This was done while I was awake. Was told I would probably at minimum lose ability to speak or understand language. I was able to talk, read and understand language immediatly. In short, I have had a total of 5 crani's, 3 gamma knife sessions

                                                                  . I have had a left thorocotomy as well.  One small lesion in left lung. I have been on and off the dreaded steroids for the past  years. I have not regained sensation or full mobility of left hand. Small price to pay! I am scheduled for MRI tomorrow at MDA and if all clear will begin Zelboraf this week. 

                                                                  I live a very busy, fairly normal life at this point. I have 2 young boys (3, 6) and am able to fuly participate in all aspects of their lives.  I work full time as the Director of a Psychiatric Treatment Center for Children. I have been fortunate to respond to surgery and recover so quickly so far.  For me the thoracotomy was much more difficult than any of the recoveries from the brain. Prior to advancing from stage 3 to 4 I was taking Temodar and Thalidomide. I failed Temodar x2, and failed Sorefinib(sp).

                                                                  I have been encouraged by so many here over the past 2 years and wish everyone continued success! 

                                                                  robyn44
                                                                  Participant

                                                                     I woke up Oct. 27, 2009 with a horrible headache and unable to use my left hand. Went to ER, CT done and found a lesion on the left frontal lobe "in the speech center" and one on the right parietal lobe. Both were over 2cm and had bled. I was stage 3b  for 6months prior to this. Seen immediatly by oncologist who gave very poor prognosis. Began having parital seizures. Onc. attempted to hospitalize me and begin WBR. I refused and used a connection and was seen immediatly by two locla Neurosurgeons who told me I was not a surgical candiate due to location, size and having more than one lesion.They did recommend Gamma Knife at that time. I was being seen at MDAnderson and contacted my Melanoma specialist that put together an amazing team and I hd first Gamma Knife procedure Nov. 5 on both lesions. Neurosurgeon was conflicted about attempting GK or going straight to Crani but felt it was worth a try. GK was 50% successful.

                                                                    The right lesion stabilized, left continued to grow and bleed. Develped speech aphasia. Crani scheduled for Dec. 29 2009. This was done while I was awake. Was told I would probably at minimum lose ability to speak or understand language. I was able to talk, read and understand language immediatly. In short, I have had a total of 5 crani's, 3 gamma knife sessions

                                                                    . I have had a left thorocotomy as well.  One small lesion in left lung. I have been on and off the dreaded steroids for the past  years. I have not regained sensation or full mobility of left hand. Small price to pay! I am scheduled for MRI tomorrow at MDA and if all clear will begin Zelboraf this week. 

                                                                    I live a very busy, fairly normal life at this point. I have 2 young boys (3, 6) and am able to fuly participate in all aspects of their lives.  I work full time as the Director of a Psychiatric Treatment Center for Children. I have been fortunate to respond to surgery and recover so quickly so far.  For me the thoracotomy was much more difficult than any of the recoveries from the brain. Prior to advancing from stage 3 to 4 I was taking Temodar and Thalidomide. I failed Temodar x2, and failed Sorefinib(sp).

                                                                    I have been encouraged by so many here over the past 2 years and wish everyone continued success! 

                                                                    dearfoam
                                                                    Participant

                                                                      Dad's brain mets were our first clue into the world of his cancer. The first 6 (scattered in different areas) were discovered in March of 2011 after he had been working out of town, living alone in a handful of hotels near various projects for over a year. Had some falls and dizzy spells over the course of at least six weeks (his retelling is skewed as his sense of time was and is still off) that weren't bad enough to get him in the ER. Finally peers were noticing something was wrong with the persistant "sea sick feeling" and encouraged him to visit a clinic and then onto ER and a neurosurgeon.

                                                                      I flew up and drove him back to my home where we had the biopsies and all his treatments done. His largest tumors at the time were a little over 2-3cm, and others hovering aroun 1cm. They grew and swelled, caused him to fall more, be REALLY confused, and he was unable to walk for a few days until I could get him Rx for steroid for the Neuro Onc. He was to see Radio Onc next, and immediately prescribed 15 sessions of WBR. The walking decline was all very sudden. I was so scared – at that time, he had no insurance, only Part A medicare. I eventually got word he was approved for charity care at our cancer center, so things went better after that.

                                                                      His neuro symptoms have been the strongest of his whole cancer. He as not been able to go back to his normal activities, at least not in terms of normal agility, reasoning, writing, etc. Cannot drive or use sharp tools. Fairly oblivious to a lot of things and still very forgetful. Latched on to some ficticious realities… Has not had many headaches since early summer, though, so luckily is in no pain.

                                                                      Had some tumors in brain grow (largest over 4cm) then shrink over summer due to either WBR or Temodar, but seem stable as of last MRI on 10/4/11. They are not really much smaller than when we discovered them initially.

                                                                      WIll start Zelboraf this week. Next MRI on Dec 19. Temodar has been deemed in effective at this point in his treatment (as non-brain mets continue to grow).

                                                                      The brain symptoms seem like those of an early stage Alzheimer's patient in my limited experience.

                                                                      -DF

                                                                      dearfoam
                                                                      Participant

                                                                        Dad's brain mets were our first clue into the world of his cancer. The first 6 (scattered in different areas) were discovered in March of 2011 after he had been working out of town, living alone in a handful of hotels near various projects for over a year. Had some falls and dizzy spells over the course of at least six weeks (his retelling is skewed as his sense of time was and is still off) that weren't bad enough to get him in the ER. Finally peers were noticing something was wrong with the persistant "sea sick feeling" and encouraged him to visit a clinic and then onto ER and a neurosurgeon.

                                                                        I flew up and drove him back to my home where we had the biopsies and all his treatments done. His largest tumors at the time were a little over 2-3cm, and others hovering aroun 1cm. They grew and swelled, caused him to fall more, be REALLY confused, and he was unable to walk for a few days until I could get him Rx for steroid for the Neuro Onc. He was to see Radio Onc next, and immediately prescribed 15 sessions of WBR. The walking decline was all very sudden. I was so scared – at that time, he had no insurance, only Part A medicare. I eventually got word he was approved for charity care at our cancer center, so things went better after that.

                                                                        His neuro symptoms have been the strongest of his whole cancer. He as not been able to go back to his normal activities, at least not in terms of normal agility, reasoning, writing, etc. Cannot drive or use sharp tools. Fairly oblivious to a lot of things and still very forgetful. Latched on to some ficticious realities… Has not had many headaches since early summer, though, so luckily is in no pain.

                                                                        Had some tumors in brain grow (largest over 4cm) then shrink over summer due to either WBR or Temodar, but seem stable as of last MRI on 10/4/11. They are not really much smaller than when we discovered them initially.

                                                                        WIll start Zelboraf this week. Next MRI on Dec 19. Temodar has been deemed in effective at this point in his treatment (as non-brain mets continue to grow).

                                                                        The brain symptoms seem like those of an early stage Alzheimer's patient in my limited experience.

                                                                        -DF

                                                                        dearfoam
                                                                        Participant

                                                                          Dad's brain mets were our first clue into the world of his cancer. The first 6 (scattered in different areas) were discovered in March of 2011 after he had been working out of town, living alone in a handful of hotels near various projects for over a year. Had some falls and dizzy spells over the course of at least six weeks (his retelling is skewed as his sense of time was and is still off) that weren't bad enough to get him in the ER. Finally peers were noticing something was wrong with the persistant "sea sick feeling" and encouraged him to visit a clinic and then onto ER and a neurosurgeon.

                                                                          I flew up and drove him back to my home where we had the biopsies and all his treatments done. His largest tumors at the time were a little over 2-3cm, and others hovering aroun 1cm. They grew and swelled, caused him to fall more, be REALLY confused, and he was unable to walk for a few days until I could get him Rx for steroid for the Neuro Onc. He was to see Radio Onc next, and immediately prescribed 15 sessions of WBR. The walking decline was all very sudden. I was so scared – at that time, he had no insurance, only Part A medicare. I eventually got word he was approved for charity care at our cancer center, so things went better after that.

                                                                          His neuro symptoms have been the strongest of his whole cancer. He as not been able to go back to his normal activities, at least not in terms of normal agility, reasoning, writing, etc. Cannot drive or use sharp tools. Fairly oblivious to a lot of things and still very forgetful. Latched on to some ficticious realities… Has not had many headaches since early summer, though, so luckily is in no pain.

                                                                          Had some tumors in brain grow (largest over 4cm) then shrink over summer due to either WBR or Temodar, but seem stable as of last MRI on 10/4/11. They are not really much smaller than when we discovered them initially.

                                                                          WIll start Zelboraf this week. Next MRI on Dec 19. Temodar has been deemed in effective at this point in his treatment (as non-brain mets continue to grow).

                                                                          The brain symptoms seem like those of an early stage Alzheimer's patient in my limited experience.

                                                                          -DF

                                                                          Alicia15
                                                                          Participant

                                                                            I had a couple of small brain mets in 2003-2004. They were treated with srs.

                                                                            I also had a lung met, spine met, intestinal mets…all these treated with surgery as they happend at different times during a 2 year period. I have been NED for over 5 years. My mets stopped once I started GM-CSF.  

                                                                            I am still here doing very well, too busy living my life so I don't visit the board very often.

                                                                            There are so many promising treatments now that weren't available at that time.

                                                                            Keep up the hope.

                                                                            Alicia

                                                                            stage IV NED – 21 year survivor of mel (diagnosed in 1990)

                                                                             

                                                                            Alicia15
                                                                            Participant

                                                                              I had a couple of small brain mets in 2003-2004. They were treated with srs.

                                                                              I also had a lung met, spine met, intestinal mets…all these treated with surgery as they happend at different times during a 2 year period. I have been NED for over 5 years. My mets stopped once I started GM-CSF.  

                                                                              I am still here doing very well, too busy living my life so I don't visit the board very often.

                                                                              There are so many promising treatments now that weren't available at that time.

                                                                              Keep up the hope.

                                                                              Alicia

                                                                              stage IV NED – 21 year survivor of mel (diagnosed in 1990)

                                                                               

                                                                              Alicia15
                                                                              Participant

                                                                                I had a couple of small brain mets in 2003-2004. They were treated with srs.

                                                                                I also had a lung met, spine met, intestinal mets…all these treated with surgery as they happend at different times during a 2 year period. I have been NED for over 5 years. My mets stopped once I started GM-CSF.  

                                                                                I am still here doing very well, too busy living my life so I don't visit the board very often.

                                                                                There are so many promising treatments now that weren't available at that time.

                                                                                Keep up the hope.

                                                                                Alicia

                                                                                stage IV NED – 21 year survivor of mel (diagnosed in 1990)

                                                                                 

                                                                            Viewing 23 reply threads
                                                                            • You must be logged in to reply to this topic.
                                                                            About the MRF Patient Forum

                                                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.