update on scan result
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.

update on scan result

› Forums › General Melanoma Community › update on scan result

  • Post
    • February 19, 2016 at 12:42 am
    dfeng
    Participant

    Well, bad news. It grows over the limit that we set.

    Do not have many options left and, really do not want to disencourage all friends.

    But the reality is the reality I have to face. Let's see how far I can push.

    Best wishes,

Viewing 47 reply threads
  • Replies
      • February 19, 2016 at 1:31 am
      Bubbles
      Participant

      Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste

        • February 19, 2016 at 1:47 am
        Bubbles
        Participant

        PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste

        • February 19, 2016 at 1:47 am
        Bubbles
        Participant

        PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste

        • February 19, 2016 at 1:47 am
        Bubbles
        Participant

        PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste

      • February 19, 2016 at 1:31 am
      Bubbles
      Participant

      Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste

      • February 19, 2016 at 1:31 am
      Bubbles
      Participant

      Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste

      • February 19, 2016 at 1:50 am
      BrianP
      Participant

      I'm sorry dfeng.  I can't remember your specifics but I was curious if you've talked to MSK.  It sounds like they are doing some pretty cutting edge stuff with genetic analysis and personalized treatment.  I wish you well. 

      Brian

       

      • February 19, 2016 at 1:50 am
      BrianP
      Participant

      I'm sorry dfeng.  I can't remember your specifics but I was curious if you've talked to MSK.  It sounds like they are doing some pretty cutting edge stuff with genetic analysis and personalized treatment.  I wish you well. 

      Brian

       

      • February 19, 2016 at 1:50 am
      BrianP
      Participant

      I'm sorry dfeng.  I can't remember your specifics but I was curious if you've talked to MSK.  It sounds like they are doing some pretty cutting edge stuff with genetic analysis and personalized treatment.  I wish you well. 

      Brian

       

      • February 19, 2016 at 5:14 am
      _Paul_
      Participant

      I am truly sorry to hear this news D. Feng.

      I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?

      Wishing the best for you – Paul

      • February 19, 2016 at 5:14 am
      _Paul_
      Participant

      I am truly sorry to hear this news D. Feng.

      I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?

      Wishing the best for you – Paul

      • February 19, 2016 at 5:14 am
      _Paul_
      Participant

      I am truly sorry to hear this news D. Feng.

      I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?

      Wishing the best for you – Paul

      • February 19, 2016 at 11:59 am
      Mat
      Participant

      Sorry to hear.  I'll take a shot in the dark.  Having been to MSK and MDA, I believe your trial required HLA testing.  The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA.  (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL.  You can likely find the trial on MDA's website.  Again the investigator is Cassian Yee.

      • February 19, 2016 at 11:59 am
      Mat
      Participant

      Sorry to hear.  I'll take a shot in the dark.  Having been to MSK and MDA, I believe your trial required HLA testing.  The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA.  (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL.  You can likely find the trial on MDA's website.  Again the investigator is Cassian Yee.

      • February 19, 2016 at 11:59 am
      Mat
      Participant

      Sorry to hear.  I'll take a shot in the dark.  Having been to MSK and MDA, I believe your trial required HLA testing.  The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA.  (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL.  You can likely find the trial on MDA's website.  Again the investigator is Cassian Yee.

      • February 19, 2016 at 1:57 pm
      Scooby123
      Participant

      So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.

      Remember keep pushing

      scooby❤️

      • February 19, 2016 at 1:57 pm
      Scooby123
      Participant

      So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.

      Remember keep pushing

      scooby❤️

      • February 19, 2016 at 1:57 pm
      Scooby123
      Participant

      So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.

      Remember keep pushing

      scooby❤️

      • February 19, 2016 at 2:03 pm
      ed williams
      Participant

      Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed

      • February 19, 2016 at 2:03 pm
      ed williams
      Participant

      Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed

        • February 20, 2016 at 11:44 pm
        Squash
        Participant

        Thats interesting Ed.

        I have had a lot of progression on Keytruda yet i always feel good after the infusion.

        I wonder if i may be a late responder.

        Anyway i am going on the combo shortly so we will see what happens then.

        My only side effects were a bit of gastro but not real bad just constipation and gas.

         

         

        • February 20, 2016 at 11:44 pm
        Squash
        Participant

        Thats interesting Ed.

        I have had a lot of progression on Keytruda yet i always feel good after the infusion.

        I wonder if i may be a late responder.

        Anyway i am going on the combo shortly so we will see what happens then.

        My only side effects were a bit of gastro but not real bad just constipation and gas.

         

         

        • February 20, 2016 at 11:44 pm
        Squash
        Participant

        Thats interesting Ed.

        I have had a lot of progression on Keytruda yet i always feel good after the infusion.

        I wonder if i may be a late responder.

        Anyway i am going on the combo shortly so we will see what happens then.

        My only side effects were a bit of gastro but not real bad just constipation and gas.

         

         

      • February 19, 2016 at 2:03 pm
      ed williams
      Participant

      Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed

      • February 19, 2016 at 2:34 pm
      eric w
      Participant
      • February 19, 2016 at 2:34 pm
      eric w
      Participant
        • February 19, 2016 at 2:35 pm
        eric w
        Participant

        oops…sorry see that is what you are doing….

        • February 19, 2016 at 2:35 pm
        eric w
        Participant

        oops…sorry see that is what you are doing….

        • February 19, 2016 at 2:35 pm
        eric w
        Participant

        oops…sorry see that is what you are doing….

      • February 19, 2016 at 2:34 pm
      eric w
      Participant
      • February 19, 2016 at 2:46 pm
      jamieth29
      Participant
      Damn…whats it take for a guy to catch a break? Here is a link to trial at NIH

      https://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2

      • February 19, 2016 at 2:46 pm
      jamieth29
      Participant
      Damn…whats it take for a guy to catch a break? Here is a link to trial at NIH

      https://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2

      • February 19, 2016 at 2:46 pm
      jamieth29
      Participant
      Damn…whats it take for a guy to catch a break? Here is a link to trial at NIH

      https://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2

      • February 19, 2016 at 3:20 pm
      jenny22
      Participant

      D. Feng-

      Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".

      For now just sending good thoughts and hopes for some improvement,.

      keep us posted.

      best,

      jenny

      • February 19, 2016 at 3:20 pm
      jenny22
      Participant

      D. Feng-

      Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".

      For now just sending good thoughts and hopes for some improvement,.

      keep us posted.

      best,

      jenny

      • February 19, 2016 at 3:20 pm
      jenny22
      Participant

      D. Feng-

      Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".

      For now just sending good thoughts and hopes for some improvement,.

      keep us posted.

      best,

      jenny

      • February 19, 2016 at 5:09 pm
      JuTMSY4
      Participant

      Really sorry to hear this.  Options are growing and it looks many have suggested quite a few.  I appreciate your outlook and I think you have the right spirit to handle this.

      -Justin

      • February 19, 2016 at 5:09 pm
      JuTMSY4
      Participant

      Really sorry to hear this.  Options are growing and it looks many have suggested quite a few.  I appreciate your outlook and I think you have the right spirit to handle this.

      -Justin

      • February 19, 2016 at 5:09 pm
      JuTMSY4
      Participant

      Really sorry to hear this.  Options are growing and it looks many have suggested quite a few.  I appreciate your outlook and I think you have the right spirit to handle this.

      -Justin

      • February 20, 2016 at 4:18 am
      Rita and Charles
      Participant

      Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….

      Rita

      • February 20, 2016 at 4:18 am
      Rita and Charles
      Participant

      Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….

      Rita

        • February 20, 2016 at 1:54 pm
        Maureen038
        Participant

        I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.

        Maureen

        • February 20, 2016 at 1:54 pm
        Maureen038
        Participant

        I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.

        Maureen

        • February 20, 2016 at 1:54 pm
        Maureen038
        Participant

        I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.

        Maureen

      • February 20, 2016 at 4:18 am
      Rita and Charles
      Participant

      Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….

      Rita

      • February 20, 2016 at 11:36 pm
      Squash
      Participant

      You always have options left as long as you are breathing.

      If mainstream medicine doesnt have anything why not try some altermative treatments.

      Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc

      I would try everything it doesnt really matter at this stage.

      Good luck.

       

       

       

      • February 20, 2016 at 11:36 pm
      Squash
      Participant

      You always have options left as long as you are breathing.

      If mainstream medicine doesnt have anything why not try some altermative treatments.

      Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc

      I would try everything it doesnt really matter at this stage.

      Good luck.

       

       

       

      • February 20, 2016 at 11:36 pm
      Squash
      Participant

      You always have options left as long as you are breathing.

      If mainstream medicine doesnt have anything why not try some altermative treatments.

      Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc

      I would try everything it doesnt really matter at this stage.

      Good luck.

       

       

       

      • February 21, 2016 at 2:17 pm
      Momofjake
      Participant

      Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!! 

      With love,

      Kerri–momofjake

      • February 21, 2016 at 2:17 pm
      Momofjake
      Participant

      Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!! 

      With love,

      Kerri–momofjake

      • February 21, 2016 at 2:17 pm
      Momofjake
      Participant

      Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!! 

      With love,

      Kerri–momofjake

      • February 21, 2016 at 11:42 pm
      AshleyS
      Participant

      D. Feng,

      You are such a fighter. Keep going! Prayers that you find the treatment. 

      Ashley

      • February 21, 2016 at 11:42 pm
      AshleyS
      Participant

      D. Feng,

      You are such a fighter. Keep going! Prayers that you find the treatment. 

      Ashley

      • February 21, 2016 at 11:42 pm
      AshleyS
      Participant

      D. Feng,

      You are such a fighter. Keep going! Prayers that you find the treatment. 

      Ashley

      • February 23, 2016 at 4:43 am
      Rita and Charles
      Participant

      How are you Dfeng??

      • February 23, 2016 at 4:43 am
      Rita and Charles
      Participant

      How are you Dfeng??

      • February 23, 2016 at 4:43 am
      Rita and Charles
      Participant

      How are you Dfeng??

      • February 29, 2016 at 9:40 pm
      dfeng
      Participant

      Thank you all for kindly and warm help.

      I am still waiting for next treatment to be settled, and will update you when some deceision is made.

      I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.

      Energy level dropps faster than I expected, weight is slowly but firmly going down too.

      I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.

      Best wishes to all!

        • March 14, 2016 at 12:43 am
        Kare83
        Participant

        Thinking of you and hope there is something out there that will work for you! Keep strong!! x

        • March 14, 2016 at 12:43 am
        Kare83
        Participant

        Thinking of you and hope there is something out there that will work for you! Keep strong!! x

        • March 14, 2016 at 12:43 am
        Kare83
        Participant

        Thinking of you and hope there is something out there that will work for you! Keep strong!! x

      • February 29, 2016 at 9:40 pm
      dfeng
      Participant

      Thank you all for kindly and warm help.

      I am still waiting for next treatment to be settled, and will update you when some deceision is made.

      I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.

      Energy level dropps faster than I expected, weight is slowly but firmly going down too.

      I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.

      Best wishes to all!

      • February 29, 2016 at 9:40 pm
      dfeng
      Participant

      Thank you all for kindly and warm help.

      I am still waiting for next treatment to be settled, and will update you when some deceision is made.

      I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.

      Energy level dropps faster than I expected, weight is slowly but firmly going down too.

      I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.

      Best wishes to all!

Viewing 47 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