MRF-Logo2019-Horizontal-RGB
Melanoma Specialist Dr. Daniels Recommendations PLEASE CHIME IN
REGISTER
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.

Melanoma Specialist Dr. Daniels Recommendations PLEASE CHIME IN

› Forums › General Melanoma Community › Melanoma Specialist Dr. Daniels Recommendations PLEASE CHIME IN

  • Post
    • July 3, 2015 at 2:35 am
    Rita and Charles
    Participant
       

      We are getting close to a course of action.  Charles Oncologist recommended surgically removing the mid lobe of the lung and all the lymph nodes.  Post surgery , starting Charles on Vemerafenib + MED.  If that course of action failed, immune therapy would be recommended.  Charles has had huge anxiety about the surgery – what if all the lymph nodes weren't successfuly removed, why go through trauma if this is not going to be 100% successful.  

      We met with Dr. Daniels of UCSD as well, a melanoma specialist. Below is the recommendations from him that we are leaning towards – Brain MRI is scheduled for next week.  

      Dr. Daniels does not think the surgery shoudl be done.  Below is his course of action:

      Pembrolizumab (Keytruda) is likely the safest therapy of the immune modulation options. Response rates are between 40 and 50%
       
      Ipilimumab (Yervoy) is the second for safety. If I were to use Ipi, I would ask a radiation oncologist to consider stereotactic radiation to one of the lung lesions. Data suggests combining radiation to Ipi enhances response. Response rates alone are between 10 and 15%. Unclear exactly how much radiation adds.
       
      _______________________________________________
      We will be composing a course of action letter to Dr. Kosty [ he is the head of Oncology at Scripps Green Hospital in La Jolla – this is where our health insurance is]  D. Daniels is a melanoma specialist at UCSD Moore Cancer Center in La Jolla [ we are going to see if we can switch insurance to use him, but we can't wait to start treatment until that happens, if it happens]. 
       
      How do doctors react when you tell them you want them to follow an outside second opinion course of action?  I don't care about his feelings…..but to confirm, that is our patient right correct?
       
      PLEASE CHIME IN ON ANY PART OR ALL OF THE ABOVE.  This forum has been a god send, we are on unchartered waters here and know that our decisons are life choices……serious flipping decisons.  
       
      Thank you, 
       
      Rita

       

    Viewing 11 reply threads
    • Replies
        • July 3, 2015 at 5:51 am
        Patina
        Participant

          Rita and Charles,

          The response of Dr. Kosty may go well or not. It depends on the doctor, his personality and how you handle the conversation.  Some doctors may work with you and some may "fire you" and it really depends on how you broach the subject and what the doctor is like.  Have you asked him what approach he would recommend without surgery?  He may recommend just what Dr. Daniels has recommended or not. You'll never know, but discuss the options Dr. Daniels recommended with Dr. Kosty and discuss wanting to avoid surgery. I would not suggest handing him a treatment plan he could be very insulted and patients on the forum have had the experience of being "fired". (It is rare.)

          All of this will change if the Brain MRI is positive. (Which everyone here hopes it's not.)  What have both doctors said about this?  If this is positive what you have already decided needs to be re-evaluated again. If it is positive do you know which radiologists you want to consult with for SRS treatment?  If not, get a list together now. You already know that I'm a big proponent of having everything under one roof and considering that Charles may need a radiologist now or at some point you want to make sure that your figure this out too and quickly. – Having one team under one roof  for the long term is best and you need to know all your options.

          Right now you don't sound confident in Dr. Kosty and I would really recommend that you explore other specialists  in your network for the long term now.  You should not focus right now on transfering to Dr. Daniels somehow, even if possible.  You need to find the best treatment and doctor now for Charles. Yes, consult with and take Dr. Daniels recommendations, but find someone your are 100% confident in now you may need to be with him or her for a while and you need to know that your doctor is 100% in…. Also, having a patient and wife who is not confident in your skills and who also plans to get transferred to another doctor ASAP might not make for a great relationship wiht you and Dr. Kosty and you need a good relationship with your doctor since hes trying to save Charles live…

          Good luck,

          PS

          Here are some articles that might help you with some of the other information you asked about.

          "Surgically removing lymph nodes does not improve survival for certain patients with melanoma. The results from the large phase III randomized Dermatologic Cooperative Oncology Group Trial (abstract LBA9002) were presented at the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting held May 29 to June 2 in Chicago.
           
          A complete lymph node dissection (CLND) may not be necessary for patients with micrometastatic cutaneous melanoma following a positive sentinel lymph node biopsy (SLNB). Patients with detectable metastatic tumors were not part of this study.
           
          After a 1-year follow-up period, patients who had a CLND did not have a survival advantage compared with those who did not undergo a CLND. The patients will continue to be followed for another 3 years after which survival will again be assessed.
           
          These findings may allow some melanoma patients to forego CLND, an intensive surgery that can result in significant morbidities such as lymphedema, numbness, and tingling. Lymphedema is a particularly hampering side effect that affects as many as 20% of patients and can persist long term in about 10% of patients."
           
                    NOTE: More follow up is needed.
           
          "It is not clear what the ideal timing of ipilimumab with respect to RT is, as survival and response outcomes were conflicting in subgroup analyses of treatment sequences. Response rates were higher in the ipilimumab group, especially when ipilimumab was given prior to RT (40% vs. 17% in the ipilimumab after RT group and 9% in the comparison groups that did not receive ipilimumab). Among the six responding patients in the ipilimumab group, four of them were treated with ipilimumab prior to RT (including two treated concurrently), and the fifth received ipilimumab shortly after completing WBRT. In a subgroup analysis, survival seemed to be improved for the patients who received ipilimumab after RT as compared to patients who received ipilimumab prior to RT (median of 18.4 months vs. 8.1 months)"
           
           
          "…The patient also experienced regression of non-irradiated lesions, demonstrating the abscopal effect. Importantly, serology showed anti-MAGEA3 antibodies, documenting an association between the abscopal effect and a systemic anti-tumor immune response. Whereas the literature suggests immune activation after tumor irradiation, this case documents an anti-tumor response seen in direct association with abscopal clearance. Implications for radiation in melanoma immunotherapy are discussed."
           
          • July 3, 2015 at 5:51 am
          Patina
          Participant

            Rita and Charles,

            The response of Dr. Kosty may go well or not. It depends on the doctor, his personality and how you handle the conversation.  Some doctors may work with you and some may "fire you" and it really depends on how you broach the subject and what the doctor is like.  Have you asked him what approach he would recommend without surgery?  He may recommend just what Dr. Daniels has recommended or not. You'll never know, but discuss the options Dr. Daniels recommended with Dr. Kosty and discuss wanting to avoid surgery. I would not suggest handing him a treatment plan he could be very insulted and patients on the forum have had the experience of being "fired". (It is rare.)

            All of this will change if the Brain MRI is positive. (Which everyone here hopes it's not.)  What have both doctors said about this?  If this is positive what you have already decided needs to be re-evaluated again. If it is positive do you know which radiologists you want to consult with for SRS treatment?  If not, get a list together now. You already know that I'm a big proponent of having everything under one roof and considering that Charles may need a radiologist now or at some point you want to make sure that your figure this out too and quickly. – Having one team under one roof  for the long term is best and you need to know all your options.

            Right now you don't sound confident in Dr. Kosty and I would really recommend that you explore other specialists  in your network for the long term now.  You should not focus right now on transfering to Dr. Daniels somehow, even if possible.  You need to find the best treatment and doctor now for Charles. Yes, consult with and take Dr. Daniels recommendations, but find someone your are 100% confident in now you may need to be with him or her for a while and you need to know that your doctor is 100% in…. Also, having a patient and wife who is not confident in your skills and who also plans to get transferred to another doctor ASAP might not make for a great relationship wiht you and Dr. Kosty and you need a good relationship with your doctor since hes trying to save Charles live…

            Good luck,

            PS

            Here are some articles that might help you with some of the other information you asked about.

            "Surgically removing lymph nodes does not improve survival for certain patients with melanoma. The results from the large phase III randomized Dermatologic Cooperative Oncology Group Trial (abstract LBA9002) were presented at the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting held May 29 to June 2 in Chicago.
             
            A complete lymph node dissection (CLND) may not be necessary for patients with micrometastatic cutaneous melanoma following a positive sentinel lymph node biopsy (SLNB). Patients with detectable metastatic tumors were not part of this study.
             
            After a 1-year follow-up period, patients who had a CLND did not have a survival advantage compared with those who did not undergo a CLND. The patients will continue to be followed for another 3 years after which survival will again be assessed.
             
            These findings may allow some melanoma patients to forego CLND, an intensive surgery that can result in significant morbidities such as lymphedema, numbness, and tingling. Lymphedema is a particularly hampering side effect that affects as many as 20% of patients and can persist long term in about 10% of patients."
             
                      NOTE: More follow up is needed.
             
            "It is not clear what the ideal timing of ipilimumab with respect to RT is, as survival and response outcomes were conflicting in subgroup analyses of treatment sequences. Response rates were higher in the ipilimumab group, especially when ipilimumab was given prior to RT (40% vs. 17% in the ipilimumab after RT group and 9% in the comparison groups that did not receive ipilimumab). Among the six responding patients in the ipilimumab group, four of them were treated with ipilimumab prior to RT (including two treated concurrently), and the fifth received ipilimumab shortly after completing WBRT. In a subgroup analysis, survival seemed to be improved for the patients who received ipilimumab after RT as compared to patients who received ipilimumab prior to RT (median of 18.4 months vs. 8.1 months)"
             
             
            "…The patient also experienced regression of non-irradiated lesions, demonstrating the abscopal effect. Importantly, serology showed anti-MAGEA3 antibodies, documenting an association between the abscopal effect and a systemic anti-tumor immune response. Whereas the literature suggests immune activation after tumor irradiation, this case documents an anti-tumor response seen in direct association with abscopal clearance. Implications for radiation in melanoma immunotherapy are discussed."
             
            • July 3, 2015 at 5:51 am
            Patina
            Participant

              Rita and Charles,

              The response of Dr. Kosty may go well or not. It depends on the doctor, his personality and how you handle the conversation.  Some doctors may work with you and some may "fire you" and it really depends on how you broach the subject and what the doctor is like.  Have you asked him what approach he would recommend without surgery?  He may recommend just what Dr. Daniels has recommended or not. You'll never know, but discuss the options Dr. Daniels recommended with Dr. Kosty and discuss wanting to avoid surgery. I would not suggest handing him a treatment plan he could be very insulted and patients on the forum have had the experience of being "fired". (It is rare.)

              All of this will change if the Brain MRI is positive. (Which everyone here hopes it's not.)  What have both doctors said about this?  If this is positive what you have already decided needs to be re-evaluated again. If it is positive do you know which radiologists you want to consult with for SRS treatment?  If not, get a list together now. You already know that I'm a big proponent of having everything under one roof and considering that Charles may need a radiologist now or at some point you want to make sure that your figure this out too and quickly. – Having one team under one roof  for the long term is best and you need to know all your options.

              Right now you don't sound confident in Dr. Kosty and I would really recommend that you explore other specialists  in your network for the long term now.  You should not focus right now on transfering to Dr. Daniels somehow, even if possible.  You need to find the best treatment and doctor now for Charles. Yes, consult with and take Dr. Daniels recommendations, but find someone your are 100% confident in now you may need to be with him or her for a while and you need to know that your doctor is 100% in…. Also, having a patient and wife who is not confident in your skills and who also plans to get transferred to another doctor ASAP might not make for a great relationship wiht you and Dr. Kosty and you need a good relationship with your doctor since hes trying to save Charles live…

              Good luck,

              PS

              Here are some articles that might help you with some of the other information you asked about.

              "Surgically removing lymph nodes does not improve survival for certain patients with melanoma. The results from the large phase III randomized Dermatologic Cooperative Oncology Group Trial (abstract LBA9002) were presented at the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting held May 29 to June 2 in Chicago.
               
              A complete lymph node dissection (CLND) may not be necessary for patients with micrometastatic cutaneous melanoma following a positive sentinel lymph node biopsy (SLNB). Patients with detectable metastatic tumors were not part of this study.
               
              After a 1-year follow-up period, patients who had a CLND did not have a survival advantage compared with those who did not undergo a CLND. The patients will continue to be followed for another 3 years after which survival will again be assessed.
               
              These findings may allow some melanoma patients to forego CLND, an intensive surgery that can result in significant morbidities such as lymphedema, numbness, and tingling. Lymphedema is a particularly hampering side effect that affects as many as 20% of patients and can persist long term in about 10% of patients."
               
                        NOTE: More follow up is needed.
               
              "It is not clear what the ideal timing of ipilimumab with respect to RT is, as survival and response outcomes were conflicting in subgroup analyses of treatment sequences. Response rates were higher in the ipilimumab group, especially when ipilimumab was given prior to RT (40% vs. 17% in the ipilimumab after RT group and 9% in the comparison groups that did not receive ipilimumab). Among the six responding patients in the ipilimumab group, four of them were treated with ipilimumab prior to RT (including two treated concurrently), and the fifth received ipilimumab shortly after completing WBRT. In a subgroup analysis, survival seemed to be improved for the patients who received ipilimumab after RT as compared to patients who received ipilimumab prior to RT (median of 18.4 months vs. 8.1 months)"
               
               
              "…The patient also experienced regression of non-irradiated lesions, demonstrating the abscopal effect. Importantly, serology showed anti-MAGEA3 antibodies, documenting an association between the abscopal effect and a systemic anti-tumor immune response. Whereas the literature suggests immune activation after tumor irradiation, this case documents an anti-tumor response seen in direct association with abscopal clearance. Implications for radiation in melanoma immunotherapy are discussed."
               
              • July 3, 2015 at 11:54 am
              arthurjedi007
              Participant

                What about a doc to doc or peer to peer they call it phone call. Where the doc you like the plan of talks to your doc. Might not help but it might.

                Also according to my doc surgery can get 99.9% of the cancer cells. Radiation at best can get up to 80%. So in any case you need a systemic treatment like keytruda or something that has the possibility of healing the whole body. Also the anecdotal evidence of radiation making yervoy work better also applies to keytruda.

                Artie

                • July 3, 2015 at 11:54 am
                arthurjedi007
                Participant

                  What about a doc to doc or peer to peer they call it phone call. Where the doc you like the plan of talks to your doc. Might not help but it might.

                  Also according to my doc surgery can get 99.9% of the cancer cells. Radiation at best can get up to 80%. So in any case you need a systemic treatment like keytruda or something that has the possibility of healing the whole body. Also the anecdotal evidence of radiation making yervoy work better also applies to keytruda.

                  Artie

                  • July 3, 2015 at 11:54 am
                  arthurjedi007
                  Participant

                    What about a doc to doc or peer to peer they call it phone call. Where the doc you like the plan of talks to your doc. Might not help but it might.

                    Also according to my doc surgery can get 99.9% of the cancer cells. Radiation at best can get up to 80%. So in any case you need a systemic treatment like keytruda or something that has the possibility of healing the whole body. Also the anecdotal evidence of radiation making yervoy work better also applies to keytruda.

                    Artie

                    • July 3, 2015 at 4:55 pm
                    ed williams
                    Participant

                      Hi Rita, I would like to add to the above advice. I think Bubbles gave you numbers on what is working best as far as % go for melanoma on a previous post. The combination of Ipi and Nivo are around 57% and Nivolumab as a monotherapy around 43%. A couple of things to think about is the removal of lymph nodes and the possible effect that might have on a immune system. I would not want to compromise the immune system at this time if you are thinking about immunotherapy drugs as the way to go. Expanded access into checkmate 067 would be my choice if available if not Pd-1 monotherapy. The rate of growth of the lung tumor is also something to keep in mind. I hope the brain scan comes back clear and you can then quickly start on a coarse of action. Wishing you the best!!!!  Ed

                      • July 3, 2015 at 4:55 pm
                      ed williams
                      Participant

                        Hi Rita, I would like to add to the above advice. I think Bubbles gave you numbers on what is working best as far as % go for melanoma on a previous post. The combination of Ipi and Nivo are around 57% and Nivolumab as a monotherapy around 43%. A couple of things to think about is the removal of lymph nodes and the possible effect that might have on a immune system. I would not want to compromise the immune system at this time if you are thinking about immunotherapy drugs as the way to go. Expanded access into checkmate 067 would be my choice if available if not Pd-1 monotherapy. The rate of growth of the lung tumor is also something to keep in mind. I hope the brain scan comes back clear and you can then quickly start on a coarse of action. Wishing you the best!!!!  Ed

                        • July 3, 2015 at 4:55 pm
                        ed williams
                        Participant

                          Hi Rita, I would like to add to the above advice. I think Bubbles gave you numbers on what is working best as far as % go for melanoma on a previous post. The combination of Ipi and Nivo are around 57% and Nivolumab as a monotherapy around 43%. A couple of things to think about is the removal of lymph nodes and the possible effect that might have on a immune system. I would not want to compromise the immune system at this time if you are thinking about immunotherapy drugs as the way to go. Expanded access into checkmate 067 would be my choice if available if not Pd-1 monotherapy. The rate of growth of the lung tumor is also something to keep in mind. I hope the brain scan comes back clear and you can then quickly start on a coarse of action. Wishing you the best!!!!  Ed

                          • July 4, 2015 at 9:54 pm
                          Jubes
                          Participant

                            Hi Rita and Charles 

                            I'm  sorry you are going through this! Sounds like you have found a good melanoma specialist which in my opinion is the most important thing. 

                            I had mets in my lower right lung (8 cm), and small mets in my mediastinum and in chest nodes

                            surgery was an option  the whole right lung would have needed to be removed  my doctors did not want to waste the three months that would have taken for me to recover enough to start the immunotherapy

                            my Drs started me through the courses of treatment required to qualify here in Australia for keytruda as you had to have failed everything to go on it  now it has just been approved here as first line treatment  yay!

                            the chest nodes tumours disappeared but I still have the 3 cm lung tumour still shrinking  

                            my doctors plan to keep me on keytruda for a while even though I am having some side effects we are treating with prednisone. 

                            So in the future they will look to remove what is left of the tumour by surgery

                            to me it makes sense to shrink everything first then the surgery is not so bad

                            of course every case is different  and my tumours must have been quite slow growing. that's why you need a melanoma specialist you can really trust  

                            also your insurance is quite different over there so that's not really something that comes into the equation here  

                            I would be thinking that the doctors running the clinical trials would be right up on the latest treatments

                            i hope you get great treatment and start recovering quickly

                            anne-Louise 

                             

                              • July 4, 2015 at 10:20 pm
                              ed williams
                              Participant

                                Hi anne-Louise, just something to think about in regards to having the surgery. I have read that in many of the cases where they remove and  look at the tumor after immunotherapy treatment, they find that it is just full of t-cell. If the tumor is not changing and not causing any symptoms you might want to leave it alone. I have a lung met that is located in a region that is near major arteries so they can't remove it. I don't have any issues or symptoms because to it, now for just over two years. So glad that Pd-1 was approved in Australia, wishing you the best! Ed

                                • July 4, 2015 at 10:20 pm
                                ed williams
                                Participant

                                  Hi anne-Louise, just something to think about in regards to having the surgery. I have read that in many of the cases where they remove and  look at the tumor after immunotherapy treatment, they find that it is just full of t-cell. If the tumor is not changing and not causing any symptoms you might want to leave it alone. I have a lung met that is located in a region that is near major arteries so they can't remove it. I don't have any issues or symptoms because to it, now for just over two years. So glad that Pd-1 was approved in Australia, wishing you the best! Ed

                                  • July 4, 2015 at 10:20 pm
                                  ed williams
                                  Participant

                                    Hi anne-Louise, just something to think about in regards to having the surgery. I have read that in many of the cases where they remove and  look at the tumor after immunotherapy treatment, they find that it is just full of t-cell. If the tumor is not changing and not causing any symptoms you might want to leave it alone. I have a lung met that is located in a region that is near major arteries so they can't remove it. I don't have any issues or symptoms because to it, now for just over two years. So glad that Pd-1 was approved in Australia, wishing you the best! Ed

                                    • July 6, 2015 at 12:32 am
                                    Rita and Charles
                                    Participant

                                      Thanks Anne Louise, this is a big week for us. For so many reasons, Charles in his gut is saying no surgery….we have a few tests this week [ Heart Stress Test tomorrow for some "twisted bundles" that showed in an echo cardiogram, Brain MRI on the 8th – the biggie to get done] and then meet one more time to double be sure we understand what Dr. Daniel's at UCSD, a melanoma specialist, is recommending.  His doctors note to Charles' oncologist states that he feels the tumor/nodes are not resectable and would start with immune therapy/ Keytruda.

                                      I am learing a lot, but some info is still confused in my head 🙂  . Do you HAVE to do the BRAF targeted medicine before you do Keytruda? or can we hopscotch right to it??  

                                      I swing back and forth on confidence on our thought processes – I'll read something and feel like the oncologist recommendation of Vemurafenib + MEK is a good start……then we won't mess up our chance to get into trials or use the big guns of immune therapy later if he needs them.  OR just GO for it with Nivo as the first treatment.  

                                      Weirdly, for the past 8 months Charles had "spots" all over his legs / arms, and chest. His Derm couldn't figure it out and biopsy of the spots were all benign….we went to a rheumotologist a few months ago as well trying to see if it was Lupus, etc.  Ruled that out but that doc put Charles on Prednisone that realy seemed to help the itching and helped clear them up.  We just learned to live with the spots……now in retrospect, I"m thinking that the spots were his immune system already kicking up a storm to be heard.  Dr. Daniels has labeled Charles "Immune twitchy"……just worried his side effects with rash will be even worse than a normal side effect.  Won't know until we go there……but cautious.

                                      Wish us luck this week……and of course, I love hearing comments on my thinking and questions…..

                                       

                                      Take care, 

                                      Rita

                                      • July 6, 2015 at 12:32 am
                                      Rita and Charles
                                      Participant

                                        Thanks Anne Louise, this is a big week for us. For so many reasons, Charles in his gut is saying no surgery….we have a few tests this week [ Heart Stress Test tomorrow for some "twisted bundles" that showed in an echo cardiogram, Brain MRI on the 8th – the biggie to get done] and then meet one more time to double be sure we understand what Dr. Daniel's at UCSD, a melanoma specialist, is recommending.  His doctors note to Charles' oncologist states that he feels the tumor/nodes are not resectable and would start with immune therapy/ Keytruda.

                                        I am learing a lot, but some info is still confused in my head 🙂  . Do you HAVE to do the BRAF targeted medicine before you do Keytruda? or can we hopscotch right to it??  

                                        I swing back and forth on confidence on our thought processes – I'll read something and feel like the oncologist recommendation of Vemurafenib + MEK is a good start……then we won't mess up our chance to get into trials or use the big guns of immune therapy later if he needs them.  OR just GO for it with Nivo as the first treatment.  

                                        Weirdly, for the past 8 months Charles had "spots" all over his legs / arms, and chest. His Derm couldn't figure it out and biopsy of the spots were all benign….we went to a rheumotologist a few months ago as well trying to see if it was Lupus, etc.  Ruled that out but that doc put Charles on Prednisone that realy seemed to help the itching and helped clear them up.  We just learned to live with the spots……now in retrospect, I"m thinking that the spots were his immune system already kicking up a storm to be heard.  Dr. Daniels has labeled Charles "Immune twitchy"……just worried his side effects with rash will be even worse than a normal side effect.  Won't know until we go there……but cautious.

                                        Wish us luck this week……and of course, I love hearing comments on my thinking and questions…..

                                         

                                        Take care, 

                                        Rita

                                        • July 14, 2015 at 6:17 pm
                                        dodgedh2
                                        Participant

                                          You didn't say (or I missed it) whether Charles' Oncologist is a Melanoma specialist. My first recommnedation to anyone facing our battle is to "Go to a Melanoma Specialist". That being said, one of the previous posters also suggested having the two oncologists confer with each other. That may be a good idea. It is quite possible that Charles Oncologist may not be up on the latest treatments for melanoma (assuming he isn't a melanoma specialist). He may defer to the second melonoma specialist and either follow that treatment, or suggest that Charles switch to a melanoma specialist. Get them talking. That is the best first step.

                                          • July 14, 2015 at 6:17 pm
                                          dodgedh2
                                          Participant

                                            You didn't say (or I missed it) whether Charles' Oncologist is a Melanoma specialist. My first recommnedation to anyone facing our battle is to "Go to a Melanoma Specialist". That being said, one of the previous posters also suggested having the two oncologists confer with each other. That may be a good idea. It is quite possible that Charles Oncologist may not be up on the latest treatments for melanoma (assuming he isn't a melanoma specialist). He may defer to the second melonoma specialist and either follow that treatment, or suggest that Charles switch to a melanoma specialist. Get them talking. That is the best first step.

                                            • July 14, 2015 at 6:17 pm
                                            dodgedh2
                                            Participant

                                              You didn't say (or I missed it) whether Charles' Oncologist is a Melanoma specialist. My first recommnedation to anyone facing our battle is to "Go to a Melanoma Specialist". That being said, one of the previous posters also suggested having the two oncologists confer with each other. That may be a good idea. It is quite possible that Charles Oncologist may not be up on the latest treatments for melanoma (assuming he isn't a melanoma specialist). He may defer to the second melonoma specialist and either follow that treatment, or suggest that Charles switch to a melanoma specialist. Get them talking. That is the best first step.

                                              • July 6, 2015 at 12:32 am
                                              Rita and Charles
                                              Participant

                                                Thanks Anne Louise, this is a big week for us. For so many reasons, Charles in his gut is saying no surgery….we have a few tests this week [ Heart Stress Test tomorrow for some "twisted bundles" that showed in an echo cardiogram, Brain MRI on the 8th – the biggie to get done] and then meet one more time to double be sure we understand what Dr. Daniel's at UCSD, a melanoma specialist, is recommending.  His doctors note to Charles' oncologist states that he feels the tumor/nodes are not resectable and would start with immune therapy/ Keytruda.

                                                I am learing a lot, but some info is still confused in my head 🙂  . Do you HAVE to do the BRAF targeted medicine before you do Keytruda? or can we hopscotch right to it??  

                                                I swing back and forth on confidence on our thought processes – I'll read something and feel like the oncologist recommendation of Vemurafenib + MEK is a good start……then we won't mess up our chance to get into trials or use the big guns of immune therapy later if he needs them.  OR just GO for it with Nivo as the first treatment.  

                                                Weirdly, for the past 8 months Charles had "spots" all over his legs / arms, and chest. His Derm couldn't figure it out and biopsy of the spots were all benign….we went to a rheumotologist a few months ago as well trying to see if it was Lupus, etc.  Ruled that out but that doc put Charles on Prednisone that realy seemed to help the itching and helped clear them up.  We just learned to live with the spots……now in retrospect, I"m thinking that the spots were his immune system already kicking up a storm to be heard.  Dr. Daniels has labeled Charles "Immune twitchy"……just worried his side effects with rash will be even worse than a normal side effect.  Won't know until we go there……but cautious.

                                                Wish us luck this week……and of course, I love hearing comments on my thinking and questions…..

                                                 

                                                Take care, 

                                                Rita

                                              • July 4, 2015 at 9:54 pm
                                              Jubes
                                              Participant

                                                Hi Rita and Charles 

                                                I'm  sorry you are going through this! Sounds like you have found a good melanoma specialist which in my opinion is the most important thing. 

                                                I had mets in my lower right lung (8 cm), and small mets in my mediastinum and in chest nodes

                                                surgery was an option  the whole right lung would have needed to be removed  my doctors did not want to waste the three months that would have taken for me to recover enough to start the immunotherapy

                                                my Drs started me through the courses of treatment required to qualify here in Australia for keytruda as you had to have failed everything to go on it  now it has just been approved here as first line treatment  yay!

                                                the chest nodes tumours disappeared but I still have the 3 cm lung tumour still shrinking  

                                                my doctors plan to keep me on keytruda for a while even though I am having some side effects we are treating with prednisone. 

                                                So in the future they will look to remove what is left of the tumour by surgery

                                                to me it makes sense to shrink everything first then the surgery is not so bad

                                                of course every case is different  and my tumours must have been quite slow growing. that's why you need a melanoma specialist you can really trust  

                                                also your insurance is quite different over there so that's not really something that comes into the equation here  

                                                I would be thinking that the doctors running the clinical trials would be right up on the latest treatments

                                                i hope you get great treatment and start recovering quickly

                                                anne-Louise 

                                                 

                                                • July 4, 2015 at 9:54 pm
                                                Jubes
                                                Participant

                                                  Hi Rita and Charles 

                                                  I'm  sorry you are going through this! Sounds like you have found a good melanoma specialist which in my opinion is the most important thing. 

                                                  I had mets in my lower right lung (8 cm), and small mets in my mediastinum and in chest nodes

                                                  surgery was an option  the whole right lung would have needed to be removed  my doctors did not want to waste the three months that would have taken for me to recover enough to start the immunotherapy

                                                  my Drs started me through the courses of treatment required to qualify here in Australia for keytruda as you had to have failed everything to go on it  now it has just been approved here as first line treatment  yay!

                                                  the chest nodes tumours disappeared but I still have the 3 cm lung tumour still shrinking  

                                                  my doctors plan to keep me on keytruda for a while even though I am having some side effects we are treating with prednisone. 

                                                  So in the future they will look to remove what is left of the tumour by surgery

                                                  to me it makes sense to shrink everything first then the surgery is not so bad

                                                  of course every case is different  and my tumours must have been quite slow growing. that's why you need a melanoma specialist you can really trust  

                                                  also your insurance is quite different over there so that's not really something that comes into the equation here  

                                                  I would be thinking that the doctors running the clinical trials would be right up on the latest treatments

                                                  i hope you get great treatment and start recovering quickly

                                                  anne-Louise 

                                                   

                                              Viewing 11 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.

                                              Popular Topics