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.

Can’t see ’round the bend…

Forums General Melanoma Community Can’t see ’round the bend…

  • Post
    filbert
    Participant

    I originally posted 2 1/2 years ago when I was diagnosed stage 4 melanoma.  I started with chest pains which of course I thought was heart problems . They found however a 6 cm tumor in right lung.  They went to to do a thorachotomy (sp?) then closed me up/aborted it.  They decided it would be too much to take our part of a lung  etc etc.   Oh btw I log on as filbert-name is actually Phil.  Live in SW Washington-Vancouver.

    I originally posted 2 1/2 years ago when I was diagnosed stage 4 melanoma.  I started with chest pains which of course I thought was heart problems . They found however a 6 cm tumor in right lung.  They went to to do a thorachotomy (sp?) then closed me up/aborted it.  They decided it would be too much to take our part of a lung  etc etc.   Oh btw I log on as filbert-name is actually Phil.  Live in SW Washington-Vancouver.

    Our son had just undergone oral cancer, lost half his tongue etc etc but it now doing great.   At that point we kne we needed totally professional care so we switched to Providence Cancer Center in Portland…amazing facility.  I've had 2 rounds of IL2 and another trial which got interrrupted because of a new tumor growth.  I just had my 12 week scan out from Ipi.   Both good and bad I guess.   The original tumor in the lung has grown a smidgeon to 6.9 cm and there are several new little growths in the lung area.   I kinda figured there was something going on because of constant back /some stomach pain.  Oncologist says the tumor is pushing on the nerves on the lung wall.  

    Sooooooooooooooo long story short he is reviewing tissue saved from a previous tumor harvest to see if I am BRAF mutant (I always wanted to be a mutant!).   If that's a go I will start Braf in about a month. 

    They have never found a primary source and since it's internal I can't compare notes on some of the pics of external tumors I see here.   I'm just praying that I have the BRAF gene  (whatever they call it) .  If not I'm at a loss as to what they could do next for me.

    I have followed this board for along time but at times I don't "chime in" …I don't feel like I have anything to offer.  Some of the medical terminology can be overwhelming.   

    I've recently doubled my Norco (10-325) to 4 pills a day and about 1600 ibuprofen.   AT times that takes care of the pain…other times I just 'grit my teeth"!

    Just wanted to say thanks for all of your ongoing support.  I admire all of you in how you fight in your own individual way.   My son just bought me a Kindle and I love it.   Since so much time is spent in that stupid recliner it helps keep my mind in shape…

     

    Phil/Filbert

    Loading spinner
Viewing 5 reply threads
  • Replies
      Fen
      Participant

      Phil – I'm so sorry to hear about your reoccurance – I hope others who have had similar experiences will chime in and give you some suggestions about treatment.  Also, I assume that the cancer center has a melanoma specialist.  Have you looked at clinical trials?   I think there's gotta be something out there so as time goes on you may be able to see around the bend.  Don't give up – but it does sound like your family has had more than its share of woes recently.

      After your comments about mutant and Kindle – I pictured  Leonardo from Teenage Mutant Ninja turtles sitting in a recliner reading a Kindle.  

      Keeping you and your family in my prayers.

      Fen

       

      Loading spinner
        Carmon in NM
        Participant

        Hi Phil – it sounds like you have had a rough road and I really admire your bright attitude. I have a kindle reader too and it is indispensible for those long waits for appointments and those five hour infusions!

        I'm with Fen – have you checked out clinical trials? I'm on one that combines carboplatin, carbotaxol and temodar and after two infusions a met had shrunk better than 50% which was the first good news we had in quite a while.

        My thoughts and prayers are with you for a lasting treatment and easing of pain, Carmon in NM

        Loading spinner
        Carmon in NM
        Participant

        Hi Phil – it sounds like you have had a rough road and I really admire your bright attitude. I have a kindle reader too and it is indispensible for those long waits for appointments and those five hour infusions!

        I'm with Fen – have you checked out clinical trials? I'm on one that combines carboplatin, carbotaxol and temodar and after two infusions a met had shrunk better than 50% which was the first good news we had in quite a while.

        My thoughts and prayers are with you for a lasting treatment and easing of pain, Carmon in NM

        Loading spinner
      Fen
      Participant

      Phil – I'm so sorry to hear about your reoccurance – I hope others who have had similar experiences will chime in and give you some suggestions about treatment.  Also, I assume that the cancer center has a melanoma specialist.  Have you looked at clinical trials?   I think there's gotta be something out there so as time goes on you may be able to see around the bend.  Don't give up – but it does sound like your family has had more than its share of woes recently.

      After your comments about mutant and Kindle – I pictured  Leonardo from Teenage Mutant Ninja turtles sitting in a recliner reading a Kindle.  

      Keeping you and your family in my prayers.

      Fen

       

      Loading spinner
      JerryfromFauq
      Participant
      If you don’t have the BRAF and don’t know where your primary was, I suggest having the Onco protein stain test for c-kit done on some tumor material. The location of ones primary is a major factor related to the possibility of c-kit, but the stain test is quick, cheap and worthwhile for unknown primary locations.
      Pulling for you.

      Loading spinner
      JerryfromFauq
      Participant
      If you don’t have the BRAF and don’t know where your primary was, I suggest having the Onco protein stain test for c-kit done on some tumor material. The location of ones primary is a major factor related to the possibility of c-kit, but the stain test is quick, cheap and worthwhile for unknown primary locations.
      Pulling for you.

      Loading spinner
      Karen wife of Phil
      Participant

      I'm Phil's wife and thought I would chime in here. At this point we are waiting to see if he does have the BRAF mutation. If he does he will be doing that treatment. I need to check with the doc to see if that is going to be a BRAF/MEK. If he doesn't get to participate in that trial, I believe more surgery is on the horizon to remove tumors that are causing much of the pain…both in his back due to the almost 8cm. tumor in the lower lobe of his right lung, and tumors that are in his intestinal tract. The upside of all this is that Providence Cancer Center in Portland, Oregon has a Melanoma research arm so we are definitely in good hands. We not only get the care from our Onc. but from the reseach nurse that does a wonderful job explaining everything to us. Everything I have brought up that I have read about on the board, whether it's treatments, symptoms, side effects, etc., they are compelely knowledgeable about and can address. We have told them about this board and they have recommended to other patients. So we are totally confident in what they are doing for Phil. We also realize that as hard as this has been, we have seen so much worse for other members on this site, and I have shed many tears for them, and done happy dances for the successes.  We are grateful for all on here who share their stories, their sorrows and their victories. It really have been a great help to us. Thanks to you all.

      Karen

      Loading spinner
      Karen wife of Phil
      Participant

      I'm Phil's wife and thought I would chime in here. At this point we are waiting to see if he does have the BRAF mutation. If he does he will be doing that treatment. I need to check with the doc to see if that is going to be a BRAF/MEK. If he doesn't get to participate in that trial, I believe more surgery is on the horizon to remove tumors that are causing much of the pain…both in his back due to the almost 8cm. tumor in the lower lobe of his right lung, and tumors that are in his intestinal tract. The upside of all this is that Providence Cancer Center in Portland, Oregon has a Melanoma research arm so we are definitely in good hands. We not only get the care from our Onc. but from the reseach nurse that does a wonderful job explaining everything to us. Everything I have brought up that I have read about on the board, whether it's treatments, symptoms, side effects, etc., they are compelely knowledgeable about and can address. We have told them about this board and they have recommended to other patients. So we are totally confident in what they are doing for Phil. We also realize that as hard as this has been, we have seen so much worse for other members on this site, and I have shed many tears for them, and done happy dances for the successes.  We are grateful for all on here who share their stories, their sorrows and their victories. It really have been a great help to us. Thanks to you all.

      Karen

      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.