Searching for fellow fighters
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.

Searching for fellow fighters

› Forums › General Melanoma Community › Searching for fellow fighters

  • This topic has 42 replies, 7 voices, and was last updated 13 years ago by JC.
  • Post
    • July 14, 2012 at 1:47 am
    aldakota22
    Participant

     Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

     Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

Viewing 5 reply threads
  • Replies
      • July 14, 2012 at 3:40 am
      lhaley
      Participant

      Bridgette posted 7/10 however she didn't say how Jeff was doing.  It has been weeks now since Lisa. I also have been looking for her at another site and she hasn't posted their either. I was able to find Lisa's e-mail on that site and hasn't responded.   Lisa was supposed to go to Moffit approx 3 weeks after her crainectomy – I'm quite concerned because I think she would have let us know if she got on the anti-pd1 trial if possible. 

      Worried also,

      Linda

      • July 14, 2012 at 3:40 am
      lhaley
      Participant

      Bridgette posted 7/10 however she didn't say how Jeff was doing.  It has been weeks now since Lisa. I also have been looking for her at another site and she hasn't posted their either. I was able to find Lisa's e-mail on that site and hasn't responded.   Lisa was supposed to go to Moffit approx 3 weeks after her crainectomy – I'm quite concerned because I think she would have let us know if she got on the anti-pd1 trial if possible. 

      Worried also,

      Linda

        • July 14, 2012 at 5:45 pm
        Karin L
        Participant

        Ditto. 

        • July 14, 2012 at 5:45 pm
        Karin L
        Participant

        Ditto. 

        • July 14, 2012 at 5:45 pm
        Karin L
        Participant

        Ditto. 

        • July 15, 2012 at 2:52 am
        kylez
        Participant

        Lisa and I have some similarities in our treatment histories — GammaKnife, IPI, and Canadian neurosurgeons (mine in Californian now.) Hope she just wanted a break, and that she's resting and healing. 

         

        • July 15, 2012 at 2:52 am
        kylez
        Participant

        Lisa and I have some similarities in our treatment histories — GammaKnife, IPI, and Canadian neurosurgeons (mine in Californian now.) Hope she just wanted a break, and that she's resting and healing. 

         

        • July 15, 2012 at 2:52 am
        kylez
        Participant

        Lisa and I have some similarities in our treatment histories — GammaKnife, IPI, and Canadian neurosurgeons (mine in Californian now.) Hope she just wanted a break, and that she's resting and healing. 

         

      • July 14, 2012 at 3:40 am
      lhaley
      Participant

      Bridgette posted 7/10 however she didn't say how Jeff was doing.  It has been weeks now since Lisa. I also have been looking for her at another site and she hasn't posted their either. I was able to find Lisa's e-mail on that site and hasn't responded.   Lisa was supposed to go to Moffit approx 3 weeks after her crainectomy – I'm quite concerned because I think she would have let us know if she got on the anti-pd1 trial if possible. 

      Worried also,

      Linda

      • July 14, 2012 at 11:26 pm
      s Mom
      Participant

      Hi Al,

      It's hard to post good news when I have been reading so many sad posts as of late.   It just breaks my heart to hear about so many brave people fighting and having a rough time.  With that said, Jeff is doing really well.  His last scan (June 14) show significant tumor shrinkage in his liver (only 4 measurable tumors and the largest is 1.5 cm).  His lungs and brain (MRI) are all clear and his LDH is way down (150).  All other blood tests are normal.  He's eating and gaining weight (just about 1 pound a week).  He's up to 166 and he is 6'2" so he is still pretty skinny, but he looks good!!  And his hair is growing back!!  He does have some side pain from his SBRT liver radiation  – they radiated his liver before IL2 back in February and March.  His onc thinks the pain is ZEL interaction with radiated tissue, but it is manageable with ibuprofen.  His next scans are in September.  He's living life, going to work and enjoying the summer with his wife and kids.   We are so grateful for each blessed day (each blessed minute, really).  Keep him in your thoughts and prayers…we are still fighting and are hoping and praying for that durable remission.  Praying for all warriors out there – keep up the good fight and God Bless!

      Bridgette (Jeff's Mom)

      • July 14, 2012 at 11:26 pm
      s Mom
      Participant

      Hi Al,

      It's hard to post good news when I have been reading so many sad posts as of late.   It just breaks my heart to hear about so many brave people fighting and having a rough time.  With that said, Jeff is doing really well.  His last scan (June 14) show significant tumor shrinkage in his liver (only 4 measurable tumors and the largest is 1.5 cm).  His lungs and brain (MRI) are all clear and his LDH is way down (150).  All other blood tests are normal.  He's eating and gaining weight (just about 1 pound a week).  He's up to 166 and he is 6'2" so he is still pretty skinny, but he looks good!!  And his hair is growing back!!  He does have some side pain from his SBRT liver radiation  – they radiated his liver before IL2 back in February and March.  His onc thinks the pain is ZEL interaction with radiated tissue, but it is manageable with ibuprofen.  His next scans are in September.  He's living life, going to work and enjoying the summer with his wife and kids.   We are so grateful for each blessed day (each blessed minute, really).  Keep him in your thoughts and prayers…we are still fighting and are hoping and praying for that durable remission.  Praying for all warriors out there – keep up the good fight and God Bless!

      Bridgette (Jeff's Mom)

        • July 15, 2012 at 1:49 am
        aldakota22
        Participant

        Thank God.Much better to read such a wonderful uplifting post.May they only get better and better.You keep us up to speed on Jeff.Will keep in my prayers.Again very happy for you.      Al

        • July 15, 2012 at 1:49 am
        aldakota22
        Participant

        Thank God.Much better to read such a wonderful uplifting post.May they only get better and better.You keep us up to speed on Jeff.Will keep in my prayers.Again very happy for you.      Al

        • July 15, 2012 at 1:49 am
        aldakota22
        Participant

        Thank God.Much better to read such a wonderful uplifting post.May they only get better and better.You keep us up to speed on Jeff.Will keep in my prayers.Again very happy for you.      Al

        • July 15, 2012 at 2:22 am
        JC
        Participant

        Bridgette, you would recommend Dr Kaufman at Rush?  I'm also in the Chicago area, I know there is U of Chicago, Loyola, Northwestern, Lutheran General, etc….but you'd recommend Kaufman at Rush?  Also, is 150 LDH normal?  I had mine tested and my results said 0-200 was the normal range. . mine was like 167. . so I thought that was normal, but is that something I should be concerned about? 

        Stage I for a year

        • July 15, 2012 at 2:22 am
        JC
        Participant

        Bridgette, you would recommend Dr Kaufman at Rush?  I'm also in the Chicago area, I know there is U of Chicago, Loyola, Northwestern, Lutheran General, etc….but you'd recommend Kaufman at Rush?  Also, is 150 LDH normal?  I had mine tested and my results said 0-200 was the normal range. . mine was like 167. . so I thought that was normal, but is that something I should be concerned about? 

        Stage I for a year

        • July 15, 2012 at 3:12 am
        s Mom
        Participant

        Dear Anonymous,

        Yes – Dr. Kaufman is excellent.  He is very kind and very compassionate.

        Dr. Sigrid Hallemeyer at Lutheran General is also good 🙂

        Your LDH is normal – nothing to worry about.  

        Hope that helps.

        Bridgette (Jeff's Mom)

        • July 15, 2012 at 3:12 am
        s Mom
        Participant

        Dear Anonymous,

        Yes – Dr. Kaufman is excellent.  He is very kind and very compassionate.

        Dr. Sigrid Hallemeyer at Lutheran General is also good 🙂

        Your LDH is normal – nothing to worry about.  

        Hope that helps.

        Bridgette (Jeff's Mom)

        • July 15, 2012 at 11:39 am
        JC
        Participant

        Thanks.  Is Kaufman involved with or have access to the most current clinical trials at Rush?  Or, if not, does he try to find ones for his patients at other places?  Is he among the best in Chicago in terms of cutting edge science/research, new therapies, etc.?

        • July 15, 2012 at 11:39 am
        JC
        Participant

        Thanks.  Is Kaufman involved with or have access to the most current clinical trials at Rush?  Or, if not, does he try to find ones for his patients at other places?  Is he among the best in Chicago in terms of cutting edge science/research, new therapies, etc.?

        • July 16, 2012 at 5:05 am
        s Mom
        Participant

        Unfortunately, Chicago is considered a "second tier" melanoma center.  If you want cutting edge clinical trials, you have to go elsewhere.  Gajewski at U of C has a few that Dr. Kaufman doesn't have (BRAF and MEK combo and some vaccines).  

        Hope that helps.

        Bridgette (Jeff's Mom)

        • July 16, 2012 at 5:05 am
        s Mom
        Participant

        Unfortunately, Chicago is considered a "second tier" melanoma center.  If you want cutting edge clinical trials, you have to go elsewhere.  Gajewski at U of C has a few that Dr. Kaufman doesn't have (BRAF and MEK combo and some vaccines).  

        Hope that helps.

        Bridgette (Jeff's Mom)

        • July 16, 2012 at 9:29 am
        JC
        Participant

        Have you tried going somewhere like Sloan Kettering or MD Anderson?  I know constantly going from Chicago to NY or Houston isn't easy, but if they have the most current trials, etc. . .

        • July 16, 2012 at 9:29 am
        JC
        Participant

        Have you tried going somewhere like Sloan Kettering or MD Anderson?  I know constantly going from Chicago to NY or Houston isn't easy, but if they have the most current trials, etc. . .

        • July 16, 2012 at 9:29 am
        JC
        Participant

        Have you tried going somewhere like Sloan Kettering or MD Anderson?  I know constantly going from Chicago to NY or Houston isn't easy, but if they have the most current trials, etc. . .

        • July 16, 2012 at 5:05 am
        s Mom
        Participant

        Unfortunately, Chicago is considered a "second tier" melanoma center.  If you want cutting edge clinical trials, you have to go elsewhere.  Gajewski at U of C has a few that Dr. Kaufman doesn't have (BRAF and MEK combo and some vaccines).  

        Hope that helps.

        Bridgette (Jeff's Mom)

        • July 15, 2012 at 11:39 am
        JC
        Participant

        Thanks.  Is Kaufman involved with or have access to the most current clinical trials at Rush?  Or, if not, does he try to find ones for his patients at other places?  Is he among the best in Chicago in terms of cutting edge science/research, new therapies, etc.?

        • July 15, 2012 at 3:12 am
        s Mom
        Participant

        Dear Anonymous,

        Yes – Dr. Kaufman is excellent.  He is very kind and very compassionate.

        Dr. Sigrid Hallemeyer at Lutheran General is also good 🙂

        Your LDH is normal – nothing to worry about.  

        Hope that helps.

        Bridgette (Jeff's Mom)

        • September 2, 2012 at 4:30 am
        mclaus23
        Participant
        My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
        • September 2, 2012 at 4:30 am
        mclaus23
        Participant
        My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
        • September 2, 2012 at 4:30 am
        mclaus23
        Participant
        My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
        • September 2, 2012 at 4:36 am
        mclaus23
        Participant
        and he was recommended by sloan-kettering so we did not have to travel. He is well aware of any cutting edge treatment (probably has known of them for ‘light years’ before us.)The dr is unreal. You can tell he lives and breathes melanoma treatments and explains everthing in great detail.
        • September 2, 2012 at 4:36 am
        mclaus23
        Participant
        and he was recommended by sloan-kettering so we did not have to travel. He is well aware of any cutting edge treatment (probably has known of them for ‘light years’ before us.)The dr is unreal. You can tell he lives and breathes melanoma treatments and explains everthing in great detail.
        • September 2, 2012 at 4:36 am
        mclaus23
        Participant
        and he was recommended by sloan-kettering so we did not have to travel. He is well aware of any cutting edge treatment (probably has known of them for ‘light years’ before us.)The dr is unreal. You can tell he lives and breathes melanoma treatments and explains everthing in great detail.
        • September 2, 2012 at 4:31 am
        mclaus23
        Participant
        My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
        • September 2, 2012 at 4:31 am
        mclaus23
        Participant
        My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
        • September 2, 2012 at 4:31 am
        mclaus23
        Participant
        My dad is being treated by Dr Kaufman at Rush, he is stage 4. Dr Kaufman is amazing, He has been on this for AGES. I cannot say enough good things about him.
        • July 15, 2012 at 2:22 am
        JC
        Participant

        Bridgette, you would recommend Dr Kaufman at Rush?  I'm also in the Chicago area, I know there is U of Chicago, Loyola, Northwestern, Lutheran General, etc….but you'd recommend Kaufman at Rush?  Also, is 150 LDH normal?  I had mine tested and my results said 0-200 was the normal range. . mine was like 167. . so I thought that was normal, but is that something I should be concerned about? 

        Stage I for a year

        • November 25, 2012 at 11:29 pm
        JC
        Participant

        Where did Jeff end up going outside of Chicago?

        • November 25, 2012 at 11:29 pm
        JC
        Participant

        Where did Jeff end up going outside of Chicago?

        • November 25, 2012 at 11:29 pm
        JC
        Participant

        Where did Jeff end up going outside of Chicago?

      • July 14, 2012 at 11:26 pm
      s Mom
      Participant

      Hi Al,

      It's hard to post good news when I have been reading so many sad posts as of late.   It just breaks my heart to hear about so many brave people fighting and having a rough time.  With that said, Jeff is doing really well.  His last scan (June 14) show significant tumor shrinkage in his liver (only 4 measurable tumors and the largest is 1.5 cm).  His lungs and brain (MRI) are all clear and his LDH is way down (150).  All other blood tests are normal.  He's eating and gaining weight (just about 1 pound a week).  He's up to 166 and he is 6'2" so he is still pretty skinny, but he looks good!!  And his hair is growing back!!  He does have some side pain from his SBRT liver radiation  – they radiated his liver before IL2 back in February and March.  His onc thinks the pain is ZEL interaction with radiated tissue, but it is manageable with ibuprofen.  His next scans are in September.  He's living life, going to work and enjoying the summer with his wife and kids.   We are so grateful for each blessed day (each blessed minute, really).  Keep him in your thoughts and prayers…we are still fighting and are hoping and praying for that durable remission.  Praying for all warriors out there – keep up the good fight and God Bless!

      Bridgette (Jeff's Mom)

Viewing 5 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