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.

Update, and meds question

Forums General Melanoma Community Update, and meds question

  • Post
    mom3girlsFL
    Participant

    Happy to report as of Nov 19 my PET impression reads:

    1. Excellent response to chemotherapy. Interval resolution of hypermetabolic activity associated with retroperinoteal adenopathy and significant decrease in para-aortic node size.

    2. Mild increase activity seen in the mid thoracic spine and spleen, consistent with a hematopoietic response to chemotherapy. 

    I sure had a lot to be thankful for this past Thanksgiving! 

    These results are after being on Tafinlar/Mekinist combo for a little over a month!

    So onc basically told me "It's gone!"

    Having MRi on thoracic spine today and we are keeping eye on enlarged spleen.

    Now…here's where i need help…

    Am I really 'cured'?  Will I be on some form of meds forever to keep mel away?

    Thanks for your help and my apologies if my questions seem naive…

    Loading spinner
Viewing 11 reply threads
  • Replies
      emagdnim83
      Participant

      As far as i know, if you had metastatic melanoma once you will have it forever. Best you can achieve is to get NED-Status which means your scans do not show any evidence of cancer but this doesn't mean it won't come back one day. One cancer cell floating around in your blood is enough to grow a metastasis somewhere in your body one day – and no scan can detect such small amounts of cancer. So if you are NED you still have to frequently watch out for new mets forever.

      Loading spinner
      emagdnim83
      Participant

      As far as i know, if you had metastatic melanoma once you will have it forever. Best you can achieve is to get NED-Status which means your scans do not show any evidence of cancer but this doesn't mean it won't come back one day. One cancer cell floating around in your blood is enough to grow a metastasis somewhere in your body one day – and no scan can detect such small amounts of cancer. So if you are NED you still have to frequently watch out for new mets forever.

      Loading spinner
      emagdnim83
      Participant

      As far as i know, if you had metastatic melanoma once you will have it forever. Best you can achieve is to get NED-Status which means your scans do not show any evidence of cancer but this doesn't mean it won't come back one day. One cancer cell floating around in your blood is enough to grow a metastasis somewhere in your body one day – and no scan can detect such small amounts of cancer. So if you are NED you still have to frequently watch out for new mets forever.

      Loading spinner
      Janner
      Participant

      The BRAF drugs are miraculous, but for many, they only block the melanoma,for so long before melanoma finds a way around them.  Yes there are people with long durable remissions with these drugs but there are lots more who eventually fail the drug.  Not saying this to be a downer,but only to say keep on your toes.

      Loading spinner
      Janner
      Participant

      The BRAF drugs are miraculous, but for many, they only block the melanoma,for so long before melanoma finds a way around them.  Yes there are people with long durable remissions with these drugs but there are lots more who eventually fail the drug.  Not saying this to be a downer,but only to say keep on your toes.

      Loading spinner
      Janner
      Participant

      The BRAF drugs are miraculous, but for many, they only block the melanoma,for so long before melanoma finds a way around them.  Yes there are people with long durable remissions with these drugs but there are lots more who eventually fail the drug.  Not saying this to be a downer,but only to say keep on your toes.

      Loading spinner
      gregor913
      Participant

      Ignore the insensitive comments above. That is great news. You should enjoy the holidays and just keep up with scans and treatment. As far as stories go Ive read of many people on this site that have been NED 5 years 10 years 15 years. So there is hope. I also know of somebody that is 18 years NED stage 4 but does not come on the forum. There are many people that dont come on the forum to post because they are out living there lives. This forum is great but it can also cause alot of anxiety and depression by just reading some of the stories and comparing. Everyone is different. Lately ive been trying to stay away from the forum due to this reason. I want to move on with my life and put mel in the rear view mirror mentally.

      Loading spinner
      gregor913
      Participant

      Ignore the insensitive comments above. That is great news. You should enjoy the holidays and just keep up with scans and treatment. As far as stories go Ive read of many people on this site that have been NED 5 years 10 years 15 years. So there is hope. I also know of somebody that is 18 years NED stage 4 but does not come on the forum. There are many people that dont come on the forum to post because they are out living there lives. This forum is great but it can also cause alot of anxiety and depression by just reading some of the stories and comparing. Everyone is different. Lately ive been trying to stay away from the forum due to this reason. I want to move on with my life and put mel in the rear view mirror mentally.

      Loading spinner
      gregor913
      Participant

      Ignore the insensitive comments above. That is great news. You should enjoy the holidays and just keep up with scans and treatment. As far as stories go Ive read of many people on this site that have been NED 5 years 10 years 15 years. So there is hope. I also know of somebody that is 18 years NED stage 4 but does not come on the forum. There are many people that dont come on the forum to post because they are out living there lives. This forum is great but it can also cause alot of anxiety and depression by just reading some of the stories and comparing. Everyone is different. Lately ive been trying to stay away from the forum due to this reason. I want to move on with my life and put mel in the rear view mirror mentally.

      Loading spinner
        emagdnim83
        Participant

        Oh, i'm sorry. My comment really wasn't meant to be insensitive. Reaching NED is something only a minority of Stage 4 people are blessed with to archieve so it is definitely something to be very happy about and it can stay like this for a long, long time. But when stopping with treatment i think it is very important to be aware to the fact that this shitty disease can come back at any time, especially because people who once had melanoma are at a higher risk to develop secondary melanomas.

         

         

        Loading spinner
        emagdnim83
        Participant

        Oh, i'm sorry. My comment really wasn't meant to be insensitive. Reaching NED is something only a minority of Stage 4 people are blessed with to archieve so it is definitely something to be very happy about and it can stay like this for a long, long time. But when stopping with treatment i think it is very important to be aware to the fact that this shitty disease can come back at any time, especially because people who once had melanoma are at a higher risk to develop secondary melanomas.

         

         

        Loading spinner
        emagdnim83
        Participant

        Oh, i'm sorry. My comment really wasn't meant to be insensitive. Reaching NED is something only a minority of Stage 4 people are blessed with to archieve so it is definitely something to be very happy about and it can stay like this for a long, long time. But when stopping with treatment i think it is very important to be aware to the fact that this shitty disease can come back at any time, especially because people who once had melanoma are at a higher risk to develop secondary melanomas.

         

         

        Loading spinner
      Tim–MRF
      Guest

      I am sorry you are dealing with this cancer, but am pleased you have had such a strong response to Tafinlar/Mekinist. 

      I suggest you relax through the holidays, then get back to doing your homework. Fighting melanoma is often a matter of several different rounds of treatment, and having a next step in mind is not a bad idea. Some people are lucky and have a complete response to the first treatment prescribed. This is not rare, but is not the norm.

      With the treatment you are on some people don't respond at all, some people respond for a few months, and some people respond for a long time. This treatment is called "targeted therapy" because it targets a specific mutation in the tumor cells and disables the protein driven by that mutation.

      Another approach is called immunotherapy, and the drugs that are most often used now are in a category called anti-PD1. Two companies make drugs in this category and they are called Keytruda and Opdivo. Both work about the same.

      The number of people still alive after 3 years of treatment is about the same with both types of drugs, and the nice thing is that if one type quits working you can switch to the other type.

      So you have received good advice in the previous responses–live your life the the best you can, but be prepared should this cancer rear its ugly head again. Fortunately should the melanoma come back you still have several good treatment options to fight back.

      Tim–MRF

       

      Loading spinner
      Tim–MRF
      Guest

      I am sorry you are dealing with this cancer, but am pleased you have had such a strong response to Tafinlar/Mekinist. 

      I suggest you relax through the holidays, then get back to doing your homework. Fighting melanoma is often a matter of several different rounds of treatment, and having a next step in mind is not a bad idea. Some people are lucky and have a complete response to the first treatment prescribed. This is not rare, but is not the norm.

      With the treatment you are on some people don't respond at all, some people respond for a few months, and some people respond for a long time. This treatment is called "targeted therapy" because it targets a specific mutation in the tumor cells and disables the protein driven by that mutation.

      Another approach is called immunotherapy, and the drugs that are most often used now are in a category called anti-PD1. Two companies make drugs in this category and they are called Keytruda and Opdivo. Both work about the same.

      The number of people still alive after 3 years of treatment is about the same with both types of drugs, and the nice thing is that if one type quits working you can switch to the other type.

      So you have received good advice in the previous responses–live your life the the best you can, but be prepared should this cancer rear its ugly head again. Fortunately should the melanoma come back you still have several good treatment options to fight back.

      Tim–MRF

       

      Loading spinner
      Tim–MRF
      Guest

      I am sorry you are dealing with this cancer, but am pleased you have had such a strong response to Tafinlar/Mekinist. 

      I suggest you relax through the holidays, then get back to doing your homework. Fighting melanoma is often a matter of several different rounds of treatment, and having a next step in mind is not a bad idea. Some people are lucky and have a complete response to the first treatment prescribed. This is not rare, but is not the norm.

      With the treatment you are on some people don't respond at all, some people respond for a few months, and some people respond for a long time. This treatment is called "targeted therapy" because it targets a specific mutation in the tumor cells and disables the protein driven by that mutation.

      Another approach is called immunotherapy, and the drugs that are most often used now are in a category called anti-PD1. Two companies make drugs in this category and they are called Keytruda and Opdivo. Both work about the same.

      The number of people still alive after 3 years of treatment is about the same with both types of drugs, and the nice thing is that if one type quits working you can switch to the other type.

      So you have received good advice in the previous responses–live your life the the best you can, but be prepared should this cancer rear its ugly head again. Fortunately should the melanoma come back you still have several good treatment options to fight back.

      Tim–MRF

       

      Loading spinner
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.