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Clinical trial

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  • Post
    • December 12, 2018 at 9:52 pm
    Dwarla
    Participant

      I have not posted in a long time. Since I posted I have had a 3+cm melanoma tumor removed from my bladder. That went well. Shortly after that I transferred to the University of Virginia cancer center. I was eligible for a clinical trial in which I decided to participate. "A trial to evaluate the safety, immunogenicity, and clinical activity of a helper peptide vaccine plus combination of BRAF inhibition and MEK inhibition (Mel61)". I found out that I have a BRAF mutation. I have had 5 of 6 vaccines. My enlarged left axillary lymph nodes started at 2.5cm x 2.2cm and 2.3 cm x 1.5cm as of 9/19/18. My scan as of 11/28/18 states a single necrotic left axillary lymph node remains which now measures 1.8cm x 1.3cm. The small lymph node has disappeared and the largest is considerably smaller. I am so thankful for the clinical trial. 

      I have small nodules in my lungs that have been stable for over a year. I also have a spot on L4. I am so excited about the lymph nodes but at the same time, I'm scared another shoe will drop. I've been fighting for 2 years and I know I have to continue to fight.

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    • Replies
        • December 12, 2018 at 11:31 pm
        gopher38
        Participant

          That sounds great.  Lots of positives there, and I didn't see a negative.

          • December 13, 2018 at 12:19 am
          lkb
          Participant

            Hooray for your good results and your diligence!

            • December 13, 2018 at 1:55 pm
            Bubbles
            Participant

              Shoes always drop.  Water heaters go ca-fluey!  Cars break down.  Family members have problems. The weather can be frightful.  And yes, shite and more shite can happen in our bodies!  BUT!!!!!!!!!!!!!!!!!!  Your results sound great!  May you continue to improve.  LIVE!!!  Enjoy today AND tomorrow.  May you have wonderful holidays with those you love.  celeste

              • December 15, 2018 at 1:50 am
              Ridingaroundwith27Jennifers
              Participant

                I'm so glad that your news is good.  I've been fighting for two years also.  You don't need me to tell you how awesome you are.  You are awesome so keep up the good fight.  Keep giving us all hope.  Try not to worry about that shoe.  

                Good wishes to you.

                Jennifer

                • December 16, 2018 at 7:42 pm
                betsyl
                Participant

                  With the bladder tumor, did you have blood in your urine?

                  My husband has blood in his urine since Thursday. Spend Friday in the ER. Not sure yet what's causing it. 

                    • December 18, 2018 at 7:50 pm
                    Dwarla
                    Participant

                      Yes, I had blood in my urine. Not always visible to me. I went through several rounds of antibiotics and finally was sent to a urologist. He is Fantastic!!!! I just had my first cystoscopy since surgery to make sure nothing returns. He intends to keep a very close check on me,which is fine with me!!!! I hope they discover your husband's problem and solve it quickly! 

                    • December 18, 2018 at 7:56 pm
                    Dwarla
                    Participant

                      I appreciate everyone's feedback. I wish all of you a Merry Christmas!! You have definitely made mine better!

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