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.

how fast

Forums General Melanoma Community how fast

  • Post
    Terra
    Participant

    we just received news that derek has mets in his liver, largest 1.3 cm, in his lung and one on his 6th rib that is 4.5 cm – we will discuss treatments in one week a Princess Margaret in TO – with this news and no trt or worse yet no trt that works how fast might this happen – please give me hard facts – he is trying to balance quality of life with treatment – I know he won't continue with trt after trt if 1 or 2 doesn't work and need to know e.g. for leave at work etc. – not making sense I know pls answer as you might be able to

    we just received news that derek has mets in his liver, largest 1.3 cm, in his lung and one on his 6th rib that is 4.5 cm – we will discuss treatments in one week a Princess Margaret in TO – with this news and no trt or worse yet no trt that works how fast might this happen – please give me hard facts – he is trying to balance quality of life with treatment – I know he won't continue with trt after trt if 1 or 2 doesn't work and need to know e.g. for leave at work etc. – not making sense I know pls answer as you might be able to

    Loading spinner
Viewing 5 reply threads
  • Replies
      Lori C
      Participant

      What is his LDH level?  How is he feeling? 

      Has he tried ipi?  Interleukin 2?  What about a chemo regime of cisplatin & taxol? 

      There may still be very reasonable options available. 

      Loading spinner
        Terra
        Participant

        There may be reasonable options but so few people survive long term I just want for the first time to deal in reality with this disease – he was originally diagnosed in 2001, we met in 2004, then to stage 4, in 2007 with lung node, and again in 2011 with surgery for a lung nodule, I always believed we were beating it, ahead of it, I didn't want to be here and never thought we would be here – we will definitely try ipi, maybe PI3K.MEK inhibitor, maybe IL2 but I don't think he wants to go there – he is just so tired of surgeries, etc. I just need a rough timeline – he wants to make it to September to see our first daughter start school.

        Loading spinner
        Lori C
        Participant

        I'm not a doctor of any kind but I can share the timeline of the person I cared for, Will.

        He was first diagnosed in fall 2008, stage III.  In June 2009, he was moved to stage IV with small lung mets.  In January 2010 he was diagnosed with his first liver met.  He died about 10 months later.  During the last ten months he did DTIC, biochemotherapy, and the cisplatin + taxol regime.  We could not get ipi because he'd been on a clinical trial (double blind placebo) that used it and it had not reached it's end point.  He died of liver failure.

        Loading spinner
        Lori C
        Participant

        I'm not a doctor of any kind but I can share the timeline of the person I cared for, Will.

        He was first diagnosed in fall 2008, stage III.  In June 2009, he was moved to stage IV with small lung mets.  In January 2010 he was diagnosed with his first liver met.  He died about 10 months later.  During the last ten months he did DTIC, biochemotherapy, and the cisplatin + taxol regime.  We could not get ipi because he'd been on a clinical trial (double blind placebo) that used it and it had not reached it's end point.  He died of liver failure.

        Loading spinner
        FormerCaregiver
        Participant

        I feel that the biggest immediate concern are liver mets. If there is
        anything that can be found that might shrink these without too much
        toxicity, then there is a chance for an improved outlook.

        My late wife was stage IV and doing ok until she had liver mets detected by
        a PET scan. This was in August 2009, and there was almost nothing that
        her oncologists could offer her. Unfortunately, she suffered liver failure
        and passed away in October 2009. Mets can grow really fast once the
        liver has been affected.

        Frank

        Loading spinner
        FormerCaregiver
        Participant

        I feel that the biggest immediate concern are liver mets. If there is
        anything that can be found that might shrink these without too much
        toxicity, then there is a chance for an improved outlook.

        My late wife was stage IV and doing ok until she had liver mets detected by
        a PET scan. This was in August 2009, and there was almost nothing that
        her oncologists could offer her. Unfortunately, she suffered liver failure
        and passed away in October 2009. Mets can grow really fast once the
        liver has been affected.

        Frank

        Loading spinner
        Terra
        Participant

        There may be reasonable options but so few people survive long term I just want for the first time to deal in reality with this disease – he was originally diagnosed in 2001, we met in 2004, then to stage 4, in 2007 with lung node, and again in 2011 with surgery for a lung nodule, I always believed we were beating it, ahead of it, I didn't want to be here and never thought we would be here – we will definitely try ipi, maybe PI3K.MEK inhibitor, maybe IL2 but I don't think he wants to go there – he is just so tired of surgeries, etc. I just need a rough timeline – he wants to make it to September to see our first daughter start school.

        Loading spinner
      Lori C
      Participant

      What is his LDH level?  How is he feeling? 

      Has he tried ipi?  Interleukin 2?  What about a chemo regime of cisplatin & taxol? 

      There may still be very reasonable options available. 

      Loading spinner
      James from Sydney
      Participant

      Hi Terra 

      our son had Liver Mets for about 5 months but  could not receive treatment for about 3 months due to various Surgery. He eventually started Ippi but he passed shortly after the 2nd treatment so he really didn't get a chance to respond. 

      If Derek is still reasonably strong then you might like to ask your Doctor about the Delcath system which Isolates the liver and delivers a high dose of chemo. It may provide the necessary time for another treatment to work such as MEK or Ippi.

      Reading the Board recently i have noticed some remarkable turn arounds. I pray that Derek finds something that does the same for him.

      best wishes

      James

      Loading spinner
      James from Sydney
      Participant

      Hi Terra 

      our son had Liver Mets for about 5 months but  could not receive treatment for about 3 months due to various Surgery. He eventually started Ippi but he passed shortly after the 2nd treatment so he really didn't get a chance to respond. 

      If Derek is still reasonably strong then you might like to ask your Doctor about the Delcath system which Isolates the liver and delivers a high dose of chemo. It may provide the necessary time for another treatment to work such as MEK or Ippi.

      Reading the Board recently i have noticed some remarkable turn arounds. I pray that Derek finds something that does the same for him.

      best wishes

      James

      Loading spinner
      Jan in OC
      Participant

      Hi, I am sorry you are having to deal with this cancer, but this site has some of the best people for advice and support. You did not say if he was BRAF positive or not…but you may want to look into new BRAF/MEK trials or IPI.  

      My husband was diagnosed in Aug, 2009.  Had surgery to remove primary and WLE.  Stage 3.  Did one month of HD Interferon, One month of Low dose Interferon, then they found liver mets.  Stage 4!  We started Braf trial in Feb 2010.  Extended his life by 11 months, very few side effects and seemed to keep things stable until Dec 2010.  Then his mets started to grow again.  His liver met grew from 1.9 cm to 4.6 cm.

      While trying to qualify for another trial in Jan 2011, they discovered one met in his brain.  We started IPI in Jan 2011 and scheduled SRS.  In the month of waiting for SRS, he developed a 2nd met in the brain.  The docs did SRS last week with no side effects and we will wait two months for MRI to see what is rattling around in his brain.  

      He had his 3rd IPI infusion on Wed.  Rash and itching are pretty bad, doesn't sleep much, is tired a lot.  His external lesions are still growing, so it is hard to say if the IPI is working.  We need to do one more at the end of March and scans in April.

       He now has numerous mets in his liver, lungs, kidneys, and brain, But he is still alive!!!  We are still fighting and hoping for the miracle that will stop this awful disease.  

      What I have learned is there is no normal with Melanoma.  Every persons is a bit different, some grow faster than others, some respond, some don't.  The doctors will give you the worst case scenario.  We refuse to accept that and my husband doesn't want to hear it.

      My husband had to take a medical leave from his job at the beginning of this and as his cancer worsened, they terminated him.  We had to pick up COBRA insurance for him and he is now on Social Security disability.  We went through all of our savings and the bank filed foreclosure on our house at xmas.  We filed for bankruptcy last week and will need to find someplace cheaper to live, maybe farther from his treatment center.  Sooo expensive in SoCal.  But is is all stuff!!!   I would gladly give it all up if we could get to NED.   And I use "WE" because I am at his side every step of the way.  If he ever wants to stop fighting this, I will let him, but for now, we struggle on.  

      Do not look too hard for the worst, yes, prepare for it, but always hope for the best.

      Jan, wife to Dirk.

      Loading spinner
        Terra
        Participant

        Thank-you for the replies, we will discuss ipi, mek, etc. on the 21st, we are ready to take treatment and I will be there no matter waht he decides.  I hope he will continue with trt but know he will only go so far.  This is a nice place to come and I hope we have some good news to share inthe coming months.

        Loading spinner
        Terra
        Participant

        Thank-you for the replies, we will discuss ipi, mek, etc. on the 21st, we are ready to take treatment and I will be there no matter waht he decides.  I hope he will continue with trt but know he will only go so far.  This is a nice place to come and I hope we have some good news to share inthe coming months.

        Loading spinner
      Jan in OC
      Participant

      Hi, I am sorry you are having to deal with this cancer, but this site has some of the best people for advice and support. You did not say if he was BRAF positive or not…but you may want to look into new BRAF/MEK trials or IPI.  

      My husband was diagnosed in Aug, 2009.  Had surgery to remove primary and WLE.  Stage 3.  Did one month of HD Interferon, One month of Low dose Interferon, then they found liver mets.  Stage 4!  We started Braf trial in Feb 2010.  Extended his life by 11 months, very few side effects and seemed to keep things stable until Dec 2010.  Then his mets started to grow again.  His liver met grew from 1.9 cm to 4.6 cm.

      While trying to qualify for another trial in Jan 2011, they discovered one met in his brain.  We started IPI in Jan 2011 and scheduled SRS.  In the month of waiting for SRS, he developed a 2nd met in the brain.  The docs did SRS last week with no side effects and we will wait two months for MRI to see what is rattling around in his brain.  

      He had his 3rd IPI infusion on Wed.  Rash and itching are pretty bad, doesn't sleep much, is tired a lot.  His external lesions are still growing, so it is hard to say if the IPI is working.  We need to do one more at the end of March and scans in April.

       He now has numerous mets in his liver, lungs, kidneys, and brain, But he is still alive!!!  We are still fighting and hoping for the miracle that will stop this awful disease.  

      What I have learned is there is no normal with Melanoma.  Every persons is a bit different, some grow faster than others, some respond, some don't.  The doctors will give you the worst case scenario.  We refuse to accept that and my husband doesn't want to hear it.

      My husband had to take a medical leave from his job at the beginning of this and as his cancer worsened, they terminated him.  We had to pick up COBRA insurance for him and he is now on Social Security disability.  We went through all of our savings and the bank filed foreclosure on our house at xmas.  We filed for bankruptcy last week and will need to find someplace cheaper to live, maybe farther from his treatment center.  Sooo expensive in SoCal.  But is is all stuff!!!   I would gladly give it all up if we could get to NED.   And I use "WE" because I am at his side every step of the way.  If he ever wants to stop fighting this, I will let him, but for now, we struggle on.  

      Do not look too hard for the worst, yes, prepare for it, but always hope for the best.

      Jan, wife to Dirk.

      Loading spinner
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.