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How to Deal

Forums Caregiver Community How to Deal

  • Post
    KYDonna
    Participant
       
       
      I have a question for all you warriors and caregivers! I need help because I am not dealing well!
       
      Darryel, my husband, was originally diagnosed Stage IV in 1/2012-mets to spine, liver, pelvis, lymph nodes. He started on Zelboraf and had been doing pretty well on it. The oncologist did CT scans, first every three months, then every four months, but only of his abdomen. November 2013, one week after a clean CT scan, he had a seizure. MRI found multiple brain mets, all small. Had WBR and now he is on Tafinlar, seems to be doing relatively well aside from extreme fatigue and some morning nausea. 
       
      I am totally stressing, maybe b/c I wonder why only abdominal scans were done. His onc, not a melonama specialist, has no plans on doing a CT scan anytime soon! Darryel is scheduled to have a follow-up MRI of his brain in March, which is great, but I am terrified of waiting so long to do a scan of his abdomen!! I asked yesterday if we could just do another scan at least at the 6-month mark (which would be May) but was told NO. 
       
      Am I putting too much emphasis on the scans? And how in the world do we live any kind of normal life with the fear of all these unknowns??
       
      Any advice would be greatly appreciated-thank you all for being here!
    Viewing 14 reply threads
    • Replies
        Mat
        Participant

          Agree–scans of abdomen only not acceptable just because (seemingly) doing well on zel.  Strongly consider getting with a melanoma specialist.  If you post your location, I'm sure folks will have suggestions.

            KYDonna
            Participant

              Thank you so much, Mat! I've been so anxious, and I feel as though I must crazy b/c I'm not being happy with the onc's laid-back approach! We live in Northern Kentucky, about 30 minutes outside of Cincinnati, Ohio.

              Mat
              Participant

                Consider creating a separate post: "Requesting Suggestions for Melanoma Specialist in Cincinnati".

                Mat
                Participant

                  Consider creating a separate post: "Requesting Suggestions for Melanoma Specialist in Cincinnati".

                  KYDonna
                  Participant

                    Right-thank you again

                    KYDonna
                    Participant

                      Right-thank you again

                      Phil S
                      Participant

                        You are definitely not crazy to want more frequent scans!  Melanoma is a sneaky, scary, nasty disease that plays by NO rules.  Why a doctor is just scanning the abdomen is the crazy part. What about your husband's lungs, etc…. Anyway, you need to get to a melanoma specialist ASAP!!  Do whatever you have to do to make that happen.  We travel three hours for my husband's melanoma doctor, although we keep a great relationship with a local oncologist too.  However, my husband has all his scans in Boston and a melanoma doctor reads them! We have also traveled to Texas for a year to get treatment (we live in upstate NY).  Please advocate for your husband, your gut is telling you it's time to move on! All the best, Valerie (Phil's wife)

                        Phil S
                        Participant

                          You are definitely not crazy to want more frequent scans!  Melanoma is a sneaky, scary, nasty disease that plays by NO rules.  Why a doctor is just scanning the abdomen is the crazy part. What about your husband's lungs, etc…. Anyway, you need to get to a melanoma specialist ASAP!!  Do whatever you have to do to make that happen.  We travel three hours for my husband's melanoma doctor, although we keep a great relationship with a local oncologist too.  However, my husband has all his scans in Boston and a melanoma doctor reads them! We have also traveled to Texas for a year to get treatment (we live in upstate NY).  Please advocate for your husband, your gut is telling you it's time to move on! All the best, Valerie (Phil's wife)

                          Phil S
                          Participant

                            You are definitely not crazy to want more frequent scans!  Melanoma is a sneaky, scary, nasty disease that plays by NO rules.  Why a doctor is just scanning the abdomen is the crazy part. What about your husband's lungs, etc…. Anyway, you need to get to a melanoma specialist ASAP!!  Do whatever you have to do to make that happen.  We travel three hours for my husband's melanoma doctor, although we keep a great relationship with a local oncologist too.  However, my husband has all his scans in Boston and a melanoma doctor reads them! We have also traveled to Texas for a year to get treatment (we live in upstate NY).  Please advocate for your husband, your gut is telling you it's time to move on! All the best, Valerie (Phil's wife)

                            POW
                            Participant

                              Mat and Valerie have given you excellent advice. I agree with them.

                              POW
                              Participant

                                Mat and Valerie have given you excellent advice. I agree with them.

                                POW
                                Participant

                                  Mat and Valerie have given you excellent advice. I agree with them.

                                  KYDonna
                                  Participant

                                    Right-thank you again

                                    Mat
                                    Participant

                                      Consider creating a separate post: "Requesting Suggestions for Melanoma Specialist in Cincinnati".

                                      KYDonna
                                      Participant

                                        Thank you so much, Mat! I've been so anxious, and I feel as though I must crazy b/c I'm not being happy with the onc's laid-back approach! We live in Northern Kentucky, about 30 minutes outside of Cincinnati, Ohio.

                                        KYDonna
                                        Participant

                                          Thank you so much, Mat! I've been so anxious, and I feel as though I must crazy b/c I'm not being happy with the onc's laid-back approach! We live in Northern Kentucky, about 30 minutes outside of Cincinnati, Ohio.

                                        Mat
                                        Participant

                                          Agree–scans of abdomen only not acceptable just because (seemingly) doing well on zel.  Strongly consider getting with a melanoma specialist.  If you post your location, I'm sure folks will have suggestions.

                                          Mat
                                          Participant

                                            Agree–scans of abdomen only not acceptable just because (seemingly) doing well on zel.  Strongly consider getting with a melanoma specialist.  If you post your location, I'm sure folks will have suggestions.

                                            Tina D
                                            Participant

                                              Absolutely agree with these posts. Asking on here for suggestions for whatever big city is closest is a great starting point. 

                                              Tina

                                              Tina D
                                              Participant

                                                Absolutely agree with these posts. Asking on here for suggestions for whatever big city is closest is a great starting point. 

                                                Tina

                                                Tina D
                                                Participant

                                                  Absolutely agree with these posts. Asking on here for suggestions for whatever big city is closest is a great starting point. 

                                                  Tina

                                                  KYDonna
                                                  Participant

                                                    POW, Valerie, Mat, Tina & Phil- 

                                                    Thank you all so much for your great advice & for taking the time to reach out…I hope you realize what a blessing you all are!!

                                                    I have a lot of homework to do tonite- we have a check-in (no scan, just a visit) with the onc tomorro. I will have more than my usual amount of questions!!

                                                    So funny-I do try to be a good advocate for my husband, but I always worry that I'm being too pushy!! Good grief-why am I worried about that? LOL. God bless you all!!

                                                    KYDonna
                                                    Participant

                                                      POW, Valerie, Mat, Tina & Phil- 

                                                      Thank you all so much for your great advice & for taking the time to reach out…I hope you realize what a blessing you all are!!

                                                      I have a lot of homework to do tonite- we have a check-in (no scan, just a visit) with the onc tomorro. I will have more than my usual amount of questions!!

                                                      So funny-I do try to be a good advocate for my husband, but I always worry that I'm being too pushy!! Good grief-why am I worried about that? LOL. God bless you all!!

                                                      KYDonna
                                                      Participant

                                                        POW, Valerie, Mat, Tina & Phil- 

                                                        Thank you all so much for your great advice & for taking the time to reach out…I hope you realize what a blessing you all are!!

                                                        I have a lot of homework to do tonite- we have a check-in (no scan, just a visit) with the onc tomorro. I will have more than my usual amount of questions!!

                                                        So funny-I do try to be a good advocate for my husband, but I always worry that I'm being too pushy!! Good grief-why am I worried about that? LOL. God bless you all!!

                                                        Michelem
                                                        Participant

                                                          Let us know what happens.  My husband's situation is similar, but the treatment has been so different – he has had three full PET scans since Octoberm plus MRIs and CT of abdomen. I know little, but just saying that it certainly sounds like you are not getting the right level of detailed attention. We will all hope to hear a report that things are going better! 

                                                          Michelem
                                                          Participant

                                                            Let us know what happens.  My husband's situation is similar, but the treatment has been so different – he has had three full PET scans since Octoberm plus MRIs and CT of abdomen. I know little, but just saying that it certainly sounds like you are not getting the right level of detailed attention. We will all hope to hear a report that things are going better! 

                                                            Michelem
                                                            Participant

                                                              Let us know what happens.  My husband's situation is similar, but the treatment has been so different – he has had three full PET scans since Octoberm plus MRIs and CT of abdomen. I know little, but just saying that it certainly sounds like you are not getting the right level of detailed attention. We will all hope to hear a report that things are going better! 

                                                                KYDonna
                                                                Participant

                                                                  Wow!! All of that just since October? Amazing. It sounds like you and your hisband have a great team!! I will definitely keep you posted!!

                                                                  KYDonna
                                                                  Participant

                                                                    Wow!! All of that just since October? Amazing. It sounds like you and your hisband have a great team!! I will definitely keep you posted!!

                                                                    KYDonna
                                                                    Participant

                                                                      Wow!! All of that just since October? Amazing. It sounds like you and your hisband have a great team!! I will definitely keep you posted!!

                                                                      KYDonna
                                                                      Participant

                                                                        Wow!! All of that just since October? Amazing. It sounds like you and your hisband have a great team!! I will definitely keep you posted!! Your husband is on Ipi? How is he doing on it so far? Probably too soon to tell, i guess?

                                                                        KYDonna
                                                                        Participant

                                                                          Wow!! All of that just since October? Amazing. It sounds like you and your hisband have a great team!! I will definitely keep you posted!! Your husband is on Ipi? How is he doing on it so far? Probably too soon to tell, i guess?

                                                                          KYDonna
                                                                          Participant

                                                                            Wow!! All of that just since October? Amazing. It sounds like you and your hisband have a great team!! I will definitely keep you posted!! Your husband is on Ipi? How is he doing on it so far? Probably too soon to tell, i guess?

                                                                            Michelem
                                                                            Participant

                                                                              Yup, my husband just had his first dose of ipi yet, so it's too early to know if there is much reaction. We shall see! He was also tested for BRAF, but does not have the mutation, so that route is not for us. We were hoping to get on the ipi/PD-1 trial, but it has closed.

                                                                              Our specialist tells us that new trials are coming along all the time and there could be one that is right for us – that is what we are hoping for. Biochemotherapy has also been mentioned as a possible option, but the doc is concerned because although my husband is very fit and active he is 72, and so is considered perhaps too old for that difficult regime.

                                                                              So we have our fingers crossed for the ipi!  mm

                                                                              Michelem
                                                                              Participant

                                                                                Yup, my husband just had his first dose of ipi yet, so it's too early to know if there is much reaction. We shall see! He was also tested for BRAF, but does not have the mutation, so that route is not for us. We were hoping to get on the ipi/PD-1 trial, but it has closed.

                                                                                Our specialist tells us that new trials are coming along all the time and there could be one that is right for us – that is what we are hoping for. Biochemotherapy has also been mentioned as a possible option, but the doc is concerned because although my husband is very fit and active he is 72, and so is considered perhaps too old for that difficult regime.

                                                                                So we have our fingers crossed for the ipi!  mm

                                                                                Michelem
                                                                                Participant

                                                                                  Yup, my husband just had his first dose of ipi yet, so it's too early to know if there is much reaction. We shall see! He was also tested for BRAF, but does not have the mutation, so that route is not for us. We were hoping to get on the ipi/PD-1 trial, but it has closed.

                                                                                  Our specialist tells us that new trials are coming along all the time and there could be one that is right for us – that is what we are hoping for. Biochemotherapy has also been mentioned as a possible option, but the doc is concerned because although my husband is very fit and active he is 72, and so is considered perhaps too old for that difficult regime.

                                                                                  So we have our fingers crossed for the ipi!  mm

                                                                                ecc26
                                                                                Participant

                                                                                  You said he's now on Tafinlar, is there any reason he's not on Mekinist (MEK inhibitor) as well? Something to ask about as the combo is not only more effective than the single drugs but you also get fewer side effects. I've been on the combo of these drugs for 2 months with no noticable side effects at all. They are FDA approved as a combo so it shouldn't be an issue with insurance and I (along with many others) started both at the same time so there's no need to "ease into it" so to speak. 

                                                                                  When did he finish the WBR? I had that for 7 brain mets plus possible leptomeningeal disease last summer and the side effects from it didn't really hit me until about a week after I was done and lasted for about a month and a half, so if the WBR was relatively recent some of his symptoms may be from that. Also, it's not uncommon for patients to have a baseline MRI once they progress to stage IV, but it it's clean to not do other MRI's unless a person has symptoms (headaches, etc). My disease was found almost by accident- I began to progress after IL-2 therapy last spring and was headed to Dana-Farber to discuss clinical trials and my doctor decided last min to do an MRI so we had a complete set of images to take with us. Lo and behold I had brain mets! My only other MRI up until then was when I initially progressed to stage IV in Nov 2012.

                                                                                  As for advocating- don't ever worry about being too pushy! It goes against many of our natures to question doctors "too much" but one thing I learned is to follow my gut. Question decisions if they don't make sense and insist on explanations. If the rationale doesn't sound right  look for second opinions, and like so many others I recommend seeing a specialist at least once. If he/she says the same thing than at the very least it gives you a ittle more confidence in your regular oncologist. Besides, you can be an excellent advocate and discuss/challange without getting into the realm of insulting or difficult or the 4 letter word for "too difficult". I have "arguements" quite frequently with my local guy- I just won one a couple weeks ago and got SRS (targeted radiation) for the new brain mets that popped up just before I started the combo even though the recheck MRI showed stability/shrinkage. My doctor and I have a very good relationship but I push and challenge him on a regular basis. Don't be afraid to do the same.

                                                                                    Patina
                                                                                    Participant
                                                                                      I agree with the other poster’s. You need to find a melanoma specialist and I personally would consult with 2 doctors before you make a decision and make sure they look at any scans you have. They will likey order additional scans, which is what you want.

                                                                                      My experience with my Mom proved that having a good doctor look at the actual images iv very important. The first radiologist and 2nd opinion missed the brain mets.

                                                                                      My Mom is BRAF and PD-1 postive. She could not get into the trials once we found out about the brain mets.

                                                                                      She was treated for 8 of 9 (they missed one) with gamma knife radiation. Ipi/Yervoy followed 4 days later. 1st scam after radiation showed mix results, but a trend toward working…

                                                                                      You don’t mention treatment for the brain mets… I would recommend that you discuss this with someone ASAP.

                                                                                      Patina
                                                                                      Participant
                                                                                        I agree with the other poster’s. You need to find a melanoma specialist and I personally would consult with 2 doctors before you make a decision and make sure they look at any scans you have. They will likey order additional scans, which is what you want.

                                                                                        My experience with my Mom proved that having a good doctor look at the actual images iv very important. The first radiologist and 2nd opinion missed the brain mets.

                                                                                        My Mom is BRAF and PD-1 postive. She could not get into the trials once we found out about the brain mets.

                                                                                        She was treated for 8 of 9 (they missed one) with gamma knife radiation. Ipi/Yervoy followed 4 days later. 1st scam after radiation showed mix results, but a trend toward working…

                                                                                        You don’t mention treatment for the brain mets… I would recommend that you discuss this with someone ASAP.

                                                                                        Patina
                                                                                        Participant
                                                                                          I agree with the other poster’s. You need to find a melanoma specialist and I personally would consult with 2 doctors before you make a decision and make sure they look at any scans you have. They will likey order additional scans, which is what you want.

                                                                                          My experience with my Mom proved that having a good doctor look at the actual images iv very important. The first radiologist and 2nd opinion missed the brain mets.

                                                                                          My Mom is BRAF and PD-1 postive. She could not get into the trials once we found out about the brain mets.

                                                                                          She was treated for 8 of 9 (they missed one) with gamma knife radiation. Ipi/Yervoy followed 4 days later. 1st scam after radiation showed mix results, but a trend toward working…

                                                                                          You don’t mention treatment for the brain mets… I would recommend that you discuss this with someone ASAP.

                                                                                          Michelem
                                                                                          Participant

                                                                                            I'm still figuring out what some of this means – are Tafinlar and Mekinist for people who have the BRAF mutation? My husband has just started ipi.  I haven't heard these other drugs discussed.  But – he was tested for BRAF and does not have the mutation.

                                                                                            POW
                                                                                            Participant

                                                                                              Yes, Tafinlar and Mekinist are for people with the BRAF mutation, as is Zelboraf.

                                                                                              Michelem
                                                                                              Participant

                                                                                                Thank you for clarifying – I want to follow up on anything that might be pertinent and I'm not always sure . . .  mm

                                                                                                Michelem
                                                                                                Participant

                                                                                                  Thank you for clarifying – I want to follow up on anything that might be pertinent and I'm not always sure . . .  mm

                                                                                                  Michelem
                                                                                                  Participant

                                                                                                    Thank you for clarifying – I want to follow up on anything that might be pertinent and I'm not always sure . . .  mm

                                                                                                    POW
                                                                                                    Participant

                                                                                                      Yes, Tafinlar and Mekinist are for people with the BRAF mutation, as is Zelboraf.

                                                                                                      POW
                                                                                                      Participant

                                                                                                        Yes, Tafinlar and Mekinist are for people with the BRAF mutation, as is Zelboraf.

                                                                                                        Michelem
                                                                                                        Participant

                                                                                                          I'm still figuring out what some of this means – are Tafinlar and Mekinist for people who have the BRAF mutation? My husband has just started ipi.  I haven't heard these other drugs discussed.  But – he was tested for BRAF and does not have the mutation.

                                                                                                          Michelem
                                                                                                          Participant

                                                                                                            I'm still figuring out what some of this means – are Tafinlar and Mekinist for people who have the BRAF mutation? My husband has just started ipi.  I haven't heard these other drugs discussed.  But – he was tested for BRAF and does not have the mutation.

                                                                                                          ecc26
                                                                                                          Participant

                                                                                                            You said he's now on Tafinlar, is there any reason he's not on Mekinist (MEK inhibitor) as well? Something to ask about as the combo is not only more effective than the single drugs but you also get fewer side effects. I've been on the combo of these drugs for 2 months with no noticable side effects at all. They are FDA approved as a combo so it shouldn't be an issue with insurance and I (along with many others) started both at the same time so there's no need to "ease into it" so to speak. 

                                                                                                            When did he finish the WBR? I had that for 7 brain mets plus possible leptomeningeal disease last summer and the side effects from it didn't really hit me until about a week after I was done and lasted for about a month and a half, so if the WBR was relatively recent some of his symptoms may be from that. Also, it's not uncommon for patients to have a baseline MRI once they progress to stage IV, but it it's clean to not do other MRI's unless a person has symptoms (headaches, etc). My disease was found almost by accident- I began to progress after IL-2 therapy last spring and was headed to Dana-Farber to discuss clinical trials and my doctor decided last min to do an MRI so we had a complete set of images to take with us. Lo and behold I had brain mets! My only other MRI up until then was when I initially progressed to stage IV in Nov 2012.

                                                                                                            As for advocating- don't ever worry about being too pushy! It goes against many of our natures to question doctors "too much" but one thing I learned is to follow my gut. Question decisions if they don't make sense and insist on explanations. If the rationale doesn't sound right  look for second opinions, and like so many others I recommend seeing a specialist at least once. If he/she says the same thing than at the very least it gives you a ittle more confidence in your regular oncologist. Besides, you can be an excellent advocate and discuss/challange without getting into the realm of insulting or difficult or the 4 letter word for "too difficult". I have "arguements" quite frequently with my local guy- I just won one a couple weeks ago and got SRS (targeted radiation) for the new brain mets that popped up just before I started the combo even though the recheck MRI showed stability/shrinkage. My doctor and I have a very good relationship but I push and challenge him on a regular basis. Don't be afraid to do the same.

                                                                                                            ecc26
                                                                                                            Participant

                                                                                                              You said he's now on Tafinlar, is there any reason he's not on Mekinist (MEK inhibitor) as well? Something to ask about as the combo is not only more effective than the single drugs but you also get fewer side effects. I've been on the combo of these drugs for 2 months with no noticable side effects at all. They are FDA approved as a combo so it shouldn't be an issue with insurance and I (along with many others) started both at the same time so there's no need to "ease into it" so to speak. 

                                                                                                              When did he finish the WBR? I had that for 7 brain mets plus possible leptomeningeal disease last summer and the side effects from it didn't really hit me until about a week after I was done and lasted for about a month and a half, so if the WBR was relatively recent some of his symptoms may be from that. Also, it's not uncommon for patients to have a baseline MRI once they progress to stage IV, but it it's clean to not do other MRI's unless a person has symptoms (headaches, etc). My disease was found almost by accident- I began to progress after IL-2 therapy last spring and was headed to Dana-Farber to discuss clinical trials and my doctor decided last min to do an MRI so we had a complete set of images to take with us. Lo and behold I had brain mets! My only other MRI up until then was when I initially progressed to stage IV in Nov 2012.

                                                                                                              As for advocating- don't ever worry about being too pushy! It goes against many of our natures to question doctors "too much" but one thing I learned is to follow my gut. Question decisions if they don't make sense and insist on explanations. If the rationale doesn't sound right  look for second opinions, and like so many others I recommend seeing a specialist at least once. If he/she says the same thing than at the very least it gives you a ittle more confidence in your regular oncologist. Besides, you can be an excellent advocate and discuss/challange without getting into the realm of insulting or difficult or the 4 letter word for "too difficult". I have "arguements" quite frequently with my local guy- I just won one a couple weeks ago and got SRS (targeted radiation) for the new brain mets that popped up just before I started the combo even though the recheck MRI showed stability/shrinkage. My doctor and I have a very good relationship but I push and challenge him on a regular basis. Don't be afraid to do the same.

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