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.

Opinions on stage 4 son

Forums General Melanoma Community Opinions on stage 4 son

  • Post
    kim2712
    Participant

    My was dx in 2004 with stage 3c melanoma. It was on his ear, ulcerated, hi mitosis rate, and one positive node. Had complete neck dissection, then 1 year of interferon. All has been fine until March 7th. His right lung collapsed 100%. Inserted a flexible chest tube to drain fluid and try to get lung inflated again. After a week of that and no success they decided to have a thoracic surgeon go in and take a look and talc the lung. When he got in there he found hundreds of tumors in the lung, pleural, cavity and chest wall. This was on March 14th.

    My was dx in 2004 with stage 3c melanoma. It was on his ear, ulcerated, hi mitosis rate, and one positive node. Had complete neck dissection, then 1 year of interferon. All has been fine until March 7th. His right lung collapsed 100%. Inserted a flexible chest tube to drain fluid and try to get lung inflated again. After a week of that and no success they decided to have a thoracic surgeon go in and take a look and talc the lung. When he got in there he found hundreds of tumors in the lung, pleural, cavity and chest wall. This was on March 14th. While in there he inserted the large drain tube and took out the flex one..After a week they let him go home with oxygen. He was home for about 2 weeks, started coughing up blood, trouble breathing so we rushed him into ER. After X-rays and a CT we found out that within 10 days the cancer had grown in the lung, and spread into the liver, diaphragm, ribs, and the space between the ribs and liver. 5 days after that another scan showed increases in liver tumor and 2 other ones. They started 3 days of interferon and today was supposed to start the chemo part of that protocol. Three diff drugs. He has had significant increase in fluid drainage from lung and now abdomen is swelling quite a bit as well as legs and feet. They did another CT that we haven't heard about yet but they are hurrying to get chemo started tonight, that tells me something is wrong. I am so scared, his cancer is spreading so damn fast.

    We are at the Cleveland Clinic, good hospital.

    Anyone have similar stories that ended successfully?

    Mom to Erik

    Loading spinner
Viewing 5 reply threads
  • Replies
      Lori C
      Participant

      Hi,

       

      I have a couple of questions before I'd venture any suggestions.  Is the fluid that you described in his abdomen malignant ascites?  Have they told you what his LDH levels are?  It sounds like an aggressively growing cancer but those might give some ideas as to just how aggressive.

      Is he going to be getting sorafenib, taxol & carboplatin or some other drug combo?  Does he have brain mets (has he had a recent brain scan) ?

      Will (whom I was caregiver for) had some of the same mets & symptoms you describe.  His cancer did respond to the aggressive chemo but his liver was too compromised by that time and it proved too toxic.  I would suggest that you get a lot of nutritional support while he undergoes this, and aggressively treat nausea.  Keeping you in my thoughts & prayers. 

      Loading spinner
        kim2712
        Participant

        Yes it is malignant, not sure if he said ascites. No LDH levels have been told. I will ask tomorrow. As of 2 weeks ago, no brain mets. He was given 3 days of interferon, then cisptatin, vinplastine, and Dicarbozine (maybe). They had to put first day of that on hold today as he developed 102 fever, high heart rate, 148, and low bp 92/54. Their concern right now is sepsis.My gut is telling me that it is too aggressive and advanced to be treated. They did another ct today and that showed 2 new mets in the liver, one new mass in the lung/diaphragm, and many cancerous nodes along both sides of his spine.

        Loading spinner
        Lori C
        Participant

        I am far from the person with much expertise on treatment here.  It does sound extremely aggressive, however, that does not necessarily mean it can't be treated.  Sounds like reducing the tumor burden is the immediate goal. 

         

        Could you have the bloodwork and scans sent to one of the  melanoma centers listed by the other MPIP poster here?  If that could be done asap, perhaps you can find out if the option they are choosing for him (the chemo combo) is the best treatment available.

        Loading spinner
        Lori C
        Participant

        I am far from the person with much expertise on treatment here.  It does sound extremely aggressive, however, that does not necessarily mean it can't be treated.  Sounds like reducing the tumor burden is the immediate goal. 

         

        Could you have the bloodwork and scans sent to one of the  melanoma centers listed by the other MPIP poster here?  If that could be done asap, perhaps you can find out if the option they are choosing for him (the chemo combo) is the best treatment available.

        Loading spinner
        kim2712
        Participant

        Yes it is malignant, not sure if he said ascites. No LDH levels have been told. I will ask tomorrow. As of 2 weeks ago, no brain mets. He was given 3 days of interferon, then cisptatin, vinplastine, and Dicarbozine (maybe). They had to put first day of that on hold today as he developed 102 fever, high heart rate, 148, and low bp 92/54. Their concern right now is sepsis.My gut is telling me that it is too aggressive and advanced to be treated. They did another ct today and that showed 2 new mets in the liver, one new mass in the lung/diaphragm, and many cancerous nodes along both sides of his spine.

        Loading spinner
      Lori C
      Participant

      Hi,

       

      I have a couple of questions before I'd venture any suggestions.  Is the fluid that you described in his abdomen malignant ascites?  Have they told you what his LDH levels are?  It sounds like an aggressively growing cancer but those might give some ideas as to just how aggressive.

      Is he going to be getting sorafenib, taxol & carboplatin or some other drug combo?  Does he have brain mets (has he had a recent brain scan) ?

      Will (whom I was caregiver for) had some of the same mets & symptoms you describe.  His cancer did respond to the aggressive chemo but his liver was too compromised by that time and it proved too toxic.  I would suggest that you get a lot of nutritional support while he undergoes this, and aggressively treat nausea.  Keeping you in my thoughts & prayers. 

      Loading spinner
      MichaelFL
      Participant

      First off, you need to be seen by a melanoma center:

      In OHIO, they are:

      Case Comprehensive Cancer Center
      Case Western Reserve University
      11100 Euclid Ave., Wearn 151
      Cleveland, Ohio 44106-5065
      (216) 844-8562
      Stanton L. Gerson, M.D., Director

      Comprehensive Cancer Center
      Arthur G. James Cancer Hospital &
      Richard J. Solove Research Institute
      Ohio State University
      A458 Starling Loving Hall
      320 West 10th Avenue
      Columbus, Ohio 43210
      (614) 293-7521
      Michael A. Caligiuri, M.D., Director
      William Carson, M.D. Surgical Oncologist/Melanoma

      Second, the forum needs more information to better assist you in relation to what protocol he is currently on. I don't know if he is on a trial, but I looked up trials with interferon, and there are 15 of them. If he is not on a trial, some doctors are combining interferon with temozolomide. The 2 drugs combined cause more tumor shrinkage, which may make patients feel better, although the combination has not been shown to help patients live longer. Another drug combination uses low doses of interferon, interleukin and temozolomide. Each seems to benefit some patients.

      Third, he need to discuss with the doctors the following other options: IL-2, MDX-010, (made by Bristol-Myers Squibb, and it was called Ipilimumab and was recently FDA approved for stage 4, and thus now called Yervoy) and being tested for the BRAF mutation to see if he is positive, as this may make a few other options available as well.

      Michael

      Loading spinner
        premedy
        Participant

        I am really sorry you have to deal with all this.  Obviously the cancer is advanced and agressive and so you need something that works quick.  There are 2  options I think you should ask about

        1) Braf – Ask to be teseted immediately to see if he is braf positive.  If he is this drug is working wonders in the short term and could maybe buy you some time

        2) E7080 – Read the post entitled "Eisai Inc. – E7080" by the poster vickirs.  She had very advanced metastatic melanoma to the liver, was giving 2 months to live, and was about to call hospice. This drug has been shrinking her tumors.  heres the link http://www.melanoma.org/community/mpip-melanoma-patients-information-page/eisai-inc-e7080

         

        I don't think ipilimumab (yervoy) would be an option now because you need something that works immediately.   It sounds like maybe you are doing biochemo. Is that the curren treatment they are using?  I am not sure that he would qualify but  make sure you ask about these 2 things.   Braf (if he is positive for that mutation) and E7080 (can be used whether you are braf positive or braf negative).

        I am sure the team of doctors is doing everything they can but sometimes they aren't aware of every option so it can't hurt to suggest.  My thoughts are with you guys.  Its so great that he has you there so you guys can fight like hell together.

        all the best,

        pat

        Loading spinner
        premedy
        Participant

        ok so i just read your reply so you are doing Biochemo. Biochemo is like a chemo cocktail.  People have definitley responded to this so it could  work for you guys but at the same time don't feel bad about suggesting other opions incase it doesn't work.

        Loading spinner
        premedy
        Participant

        ok so i just read your reply so you are doing Biochemo. Biochemo is like a chemo cocktail.  People have definitley responded to this so it could  work for you guys but at the same time don't feel bad about suggesting other opions incase it doesn't work.

        Loading spinner
        premedy
        Participant

        I am really sorry you have to deal with all this.  Obviously the cancer is advanced and agressive and so you need something that works quick.  There are 2  options I think you should ask about

        1) Braf – Ask to be teseted immediately to see if he is braf positive.  If he is this drug is working wonders in the short term and could maybe buy you some time

        2) E7080 – Read the post entitled "Eisai Inc. – E7080" by the poster vickirs.  She had very advanced metastatic melanoma to the liver, was giving 2 months to live, and was about to call hospice. This drug has been shrinking her tumors.  heres the link http://www.melanoma.org/community/mpip-melanoma-patients-information-page/eisai-inc-e7080

         

        I don't think ipilimumab (yervoy) would be an option now because you need something that works immediately.   It sounds like maybe you are doing biochemo. Is that the curren treatment they are using?  I am not sure that he would qualify but  make sure you ask about these 2 things.   Braf (if he is positive for that mutation) and E7080 (can be used whether you are braf positive or braf negative).

        I am sure the team of doctors is doing everything they can but sometimes they aren't aware of every option so it can't hurt to suggest.  My thoughts are with you guys.  Its so great that he has you there so you guys can fight like hell together.

        all the best,

        pat

        Loading spinner
      MichaelFL
      Participant

      First off, you need to be seen by a melanoma center:

      In OHIO, they are:

      Case Comprehensive Cancer Center
      Case Western Reserve University
      11100 Euclid Ave., Wearn 151
      Cleveland, Ohio 44106-5065
      (216) 844-8562
      Stanton L. Gerson, M.D., Director

      Comprehensive Cancer Center
      Arthur G. James Cancer Hospital &
      Richard J. Solove Research Institute
      Ohio State University
      A458 Starling Loving Hall
      320 West 10th Avenue
      Columbus, Ohio 43210
      (614) 293-7521
      Michael A. Caligiuri, M.D., Director
      William Carson, M.D. Surgical Oncologist/Melanoma

      Second, the forum needs more information to better assist you in relation to what protocol he is currently on. I don't know if he is on a trial, but I looked up trials with interferon, and there are 15 of them. If he is not on a trial, some doctors are combining interferon with temozolomide. The 2 drugs combined cause more tumor shrinkage, which may make patients feel better, although the combination has not been shown to help patients live longer. Another drug combination uses low doses of interferon, interleukin and temozolomide. Each seems to benefit some patients.

      Third, he need to discuss with the doctors the following other options: IL-2, MDX-010, (made by Bristol-Myers Squibb, and it was called Ipilimumab and was recently FDA approved for stage 4, and thus now called Yervoy) and being tested for the BRAF mutation to see if he is positive, as this may make a few other options available as well.

      Michael

      Loading spinner
      Lori C
      Participant

      Just wondering how Erik was doing.  He (and you) have been on my mind since I read your first post.

       

      I hope things are looking better.

      Loading spinner
      Lori C
      Participant

      Just wondering how Erik was doing.  He (and you) have been on my mind since I read your first post.

       

      I hope things are looking better.

      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.