MRF-Logo2019-Horizontal-RGB
IL-2 Success and then Brain Mets…Anyone else??
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.

IL-2 Success and then Brain Mets…Anyone else??

› Forums › Cutaneous Melanoma Community › IL-2 Success and then Brain Mets…Anyone else??

  • Post
    • August 18, 2016 at 12:15 am
    jazztubs
    Participant

      Greetings All,

      I'm looking to connect/hear from anyone who might have had a similar journey to the one I'm currently on.

      It's been a wild 3 years, to say the least.  Here is the short story:

      -Diagnosed over 3 years ago, with a large bleeding mole on my head

      -Resected this area, with local wide excision

      -Multiple lymph node disections, and the paratid gland removed

      -1 year of high-dose interferon

      -Developed Lung Mets: Did 6 cycles of high-dose IL-2 under Dr. Brendon Curti (highly recommend)

      -All Lung Mets either disappeared or stopped growing–1 year later, no issues in the Lungs

      -Rewind a bit…December of 2015, had a seizure. Found 2 Brain Mets. Treated with Gamma Knife. All good, until this spring, when one continued to swell/grow, etc. Had a Craniotomy to remove it. Was paralyzed on my left side, but with therapy and with the swelling going down, got around 95% of function back. Excellent Surgeon: Dr. David Adler.  

      -Since the surgery, I have had a few small seizures.  I'm about to have my 3 month MRI to examine the brain. Currently just taking anti-seizure meds, and not doing any other therapy

      -I've experimented with cannabis treatments as well, including high-dose Rick Simpson Oil–and while I'm not certain this has helped with acute issues, it has certainly helped with maintaining healthy body weight and overall positive disposition and dealing with depression.

      OK…So, fast forward to today.  I'm not going to lie and say I'm not affraid about what lies ahead: I'm very affraid.  So far, I've taken each day at a time, and have been super positive in my disposition–it's all I have left.  Recently, I've had to stop driving, riding motorcycles, and doing many of the other things that give me a sense of freedom and enjoyment.

      Knowing that the IL-2 doesn't work over the Brain/Blood Barrier, I worry each day about what the future holds.  Is it more Brain Surgery? Is it sudden death due to a seizure? etc. etc. I know darn well no one can answer that, but I wanted to hear from others that might have had a successful IL-2 run, and then hit a wall with the Brain Mets…  In short, is there any hope for life after Brain Mets?

       

      -Ben

    Viewing 5 reply threads
    • Replies
        • August 19, 2016 at 1:27 am
        sister of patient
        Participant

          Hi Ben,

          I can't say anything about IL2 success followed by brain mets … and I'm not a medical person nor the target of this demon disease. But if you want to know about life after brain mets just read the post from this evening by Patina, reporting on her mother –  A-Typical Can Be A Good Thing 🙂 – Stage IV & 28 Brain Mets. In fact, there are many people on this board who are living their lives, not only post-treatment but during.

          You've got your first follow-up MRI coming and I wish you the best possible results!! But even if your news isn't great, there are options still ahead of you and therapies that do cross the brain/blood barrier, that, no doubt, your docs will be looking at. 

          Best of luck and best thoughts go out to you!!

          Barb

           

          • August 19, 2016 at 1:27 am
          sister of patient
          Participant

            Hi Ben,

            I can't say anything about IL2 success followed by brain mets … and I'm not a medical person nor the target of this demon disease. But if you want to know about life after brain mets just read the post from this evening by Patina, reporting on her mother –  A-Typical Can Be A Good Thing 🙂 – Stage IV & 28 Brain Mets. In fact, there are many people on this board who are living their lives, not only post-treatment but during.

            You've got your first follow-up MRI coming and I wish you the best possible results!! But even if your news isn't great, there are options still ahead of you and therapies that do cross the brain/blood barrier, that, no doubt, your docs will be looking at. 

            Best of luck and best thoughts go out to you!!

            Barb

             

            • August 19, 2016 at 1:27 am
            sister of patient
            Participant

              Hi Ben,

              I can't say anything about IL2 success followed by brain mets … and I'm not a medical person nor the target of this demon disease. But if you want to know about life after brain mets just read the post from this evening by Patina, reporting on her mother –  A-Typical Can Be A Good Thing 🙂 – Stage IV & 28 Brain Mets. In fact, there are many people on this board who are living their lives, not only post-treatment but during.

              You've got your first follow-up MRI coming and I wish you the best possible results!! But even if your news isn't great, there are options still ahead of you and therapies that do cross the brain/blood barrier, that, no doubt, your docs will be looking at. 

              Best of luck and best thoughts go out to you!!

              Barb

               

              • September 28, 2016 at 3:09 am
              snow white
              Participant

                Hi Ben,

                I am new and I am reading older posts to educate myelf.  You mentioned in the post something about Cannabis.  I was reading about it today, I am confused though, how do you get it?

                • September 28, 2016 at 3:09 am
                snow white
                Participant

                  Hi Ben,

                  I am new and I am reading older posts to educate myelf.  You mentioned in the post something about Cannabis.  I was reading about it today, I am confused though, how do you get it?

                  • September 28, 2016 at 3:09 am
                  snow white
                  Participant

                    Hi Ben,

                    I am new and I am reading older posts to educate myelf.  You mentioned in the post something about Cannabis.  I was reading about it today, I am confused though, how do you get it?

                      • March 27, 2017 at 6:47 pm
                      jazztubs
                      Participant

                        Hi Jennifer,

                        Cannabis is legal in the state that I live in both recreationally and medically.  I have a medical card and a grower.

                         

                         

                  Viewing 5 reply threads

                  Tagged: 

                  • 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