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.

Curing Melanoma

Forums General Melanoma Community Curing Melanoma

  • Post
    JoshF
    Participant

      I'm very confused as I've been diagnosed stage 4 with lung metastasis. I have low tumor burden and my oncologist feels that if ipi or if needed PD1 works, that can be "cured". I thought it was incurable. I know these are new treatments but what is reality?

    Viewing 8 reply threads
    • Replies
        Linny
        Participant

          Stage IV with a low tumor burden is not a bad place to be if you're at that point. But it's my understanding that doctors are using the word "cure" very cautiously still.

          It's only within the past 5 years that HUGE strides have been made in the treatment of melanoma. More and more Stage IV people are starting to go on with their lives. There are several in this forum who will probably speak up with their own experiences.

          It sounds like your doctor has a good plan. Ipi has some side effects that you'll have to deal with but if you search this forum you'll find notes from folks who are responders. There was an article that came out recently which stated that many for whom Ipi worked had durable responses and are still with us after 10 years. PD1 has also worked miracles for people.

          I do think that "cure" is a bit premature. But perhaps in another 5 years it won't be. Melanoma is a devastating disease but the medical community is getting a handle on it and the survivor list is growing.

          Linny
          Participant

            Stage IV with a low tumor burden is not a bad place to be if you're at that point. But it's my understanding that doctors are using the word "cure" very cautiously still.

            It's only within the past 5 years that HUGE strides have been made in the treatment of melanoma. More and more Stage IV people are starting to go on with their lives. There are several in this forum who will probably speak up with their own experiences.

            It sounds like your doctor has a good plan. Ipi has some side effects that you'll have to deal with but if you search this forum you'll find notes from folks who are responders. There was an article that came out recently which stated that many for whom Ipi worked had durable responses and are still with us after 10 years. PD1 has also worked miracles for people.

            I do think that "cure" is a bit premature. But perhaps in another 5 years it won't be. Melanoma is a devastating disease but the medical community is getting a handle on it and the survivor list is growing.

            Linny
            Participant

              Stage IV with a low tumor burden is not a bad place to be if you're at that point. But it's my understanding that doctors are using the word "cure" very cautiously still.

              It's only within the past 5 years that HUGE strides have been made in the treatment of melanoma. More and more Stage IV people are starting to go on with their lives. There are several in this forum who will probably speak up with their own experiences.

              It sounds like your doctor has a good plan. Ipi has some side effects that you'll have to deal with but if you search this forum you'll find notes from folks who are responders. There was an article that came out recently which stated that many for whom Ipi worked had durable responses and are still with us after 10 years. PD1 has also worked miracles for people.

              I do think that "cure" is a bit premature. But perhaps in another 5 years it won't be. Melanoma is a devastating disease but the medical community is getting a handle on it and the survivor list is growing.

              Julie in SoCal
              Participant

                Hi Friend,

                I'm stage 3c, and had a very low tumor burden.  I did 4 bags of Ipi, and while my Doc doesn't use the "cure" word, I now no longer have any tumors. I watched them melt away.   Ipi hit a home run for me. As an aside, a friend of mine calls this  state "NERD" No Evidence of Recurring Disease.  I'll gladly be a NERD. I say this, to share my encouragement.  The potential payoff (Home run) was well worth the side effects. 

                If you decide to do Ipi or anti-PD1 (or whatever!) make sure you're working with a melanoma specialist and stay in good communication with your team (my doc gave me his cell phone number to text him if I had any questions or concerns or new side effects).  

                Blessings,

                Julie

                Stage 3c WLE, SNB, LDN, HD INF, GM-CSF, IPI = NERD

                 

                 

                 

                Julie in SoCal
                Participant

                  Hi Friend,

                  I'm stage 3c, and had a very low tumor burden.  I did 4 bags of Ipi, and while my Doc doesn't use the "cure" word, I now no longer have any tumors. I watched them melt away.   Ipi hit a home run for me. As an aside, a friend of mine calls this  state "NERD" No Evidence of Recurring Disease.  I'll gladly be a NERD. I say this, to share my encouragement.  The potential payoff (Home run) was well worth the side effects. 

                  If you decide to do Ipi or anti-PD1 (or whatever!) make sure you're working with a melanoma specialist and stay in good communication with your team (my doc gave me his cell phone number to text him if I had any questions or concerns or new side effects).  

                  Blessings,

                  Julie

                  Stage 3c WLE, SNB, LDN, HD INF, GM-CSF, IPI = NERD

                   

                   

                   

                  Julie in SoCal
                  Participant

                    Hi Friend,

                    I'm stage 3c, and had a very low tumor burden.  I did 4 bags of Ipi, and while my Doc doesn't use the "cure" word, I now no longer have any tumors. I watched them melt away.   Ipi hit a home run for me. As an aside, a friend of mine calls this  state "NERD" No Evidence of Recurring Disease.  I'll gladly be a NERD. I say this, to share my encouragement.  The potential payoff (Home run) was well worth the side effects. 

                    If you decide to do Ipi or anti-PD1 (or whatever!) make sure you're working with a melanoma specialist and stay in good communication with your team (my doc gave me his cell phone number to text him if I had any questions or concerns or new side effects).  

                    Blessings,

                    Julie

                    Stage 3c WLE, SNB, LDN, HD INF, GM-CSF, IPI = NERD

                     

                     

                     

                    buffcody
                    Participant

                      When I was diagnosed in June 2012 with metastatic melanoma of the lung, with no known primary, the first oncologist I want to shared the NCCN (National Comprehensive Cancer Network) Clinical Practice Guidelines in Oncology with me.  He recommended following the guidelines that I have surgery to remove the tumor and showed me that such surgery was considered to be of "curative intent.'  Not a sure cure by itself, but some people have found that a similar surgery proved curative by itself.  It was a few months after the surgery when metastases popped up in my brain that we added SRS and Ipi to the mix.  But my tumor load has always been low, and the ipi may prove to be curative.  No way of knowing, but things are moving in the right direction.  Some professionals speak of a "cure" 5 years after reoccurrence, but that is not a sure thing.

                      buffcody
                      Participant

                        When I was diagnosed in June 2012 with metastatic melanoma of the lung, with no known primary, the first oncologist I want to shared the NCCN (National Comprehensive Cancer Network) Clinical Practice Guidelines in Oncology with me.  He recommended following the guidelines that I have surgery to remove the tumor and showed me that such surgery was considered to be of "curative intent.'  Not a sure cure by itself, but some people have found that a similar surgery proved curative by itself.  It was a few months after the surgery when metastases popped up in my brain that we added SRS and Ipi to the mix.  But my tumor load has always been low, and the ipi may prove to be curative.  No way of knowing, but things are moving in the right direction.  Some professionals speak of a "cure" 5 years after reoccurrence, but that is not a sure thing.

                        buffcody
                        Participant

                          When I was diagnosed in June 2012 with metastatic melanoma of the lung, with no known primary, the first oncologist I want to shared the NCCN (National Comprehensive Cancer Network) Clinical Practice Guidelines in Oncology with me.  He recommended following the guidelines that I have surgery to remove the tumor and showed me that such surgery was considered to be of "curative intent.'  Not a sure cure by itself, but some people have found that a similar surgery proved curative by itself.  It was a few months after the surgery when metastases popped up in my brain that we added SRS and Ipi to the mix.  But my tumor load has always been low, and the ipi may prove to be curative.  No way of knowing, but things are moving in the right direction.  Some professionals speak of a "cure" 5 years after reoccurrence, but that is not a sure thing.

                      Viewing 8 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