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Colorado Melanoma Patient

Forums Caregiver Community Colorado Melanoma Patient

  • Post
    nlac26
    Participant

      I have been reading this forum since my first diagnosis with melanoma in Feburary. I have found so much helpful information and wanted to say THANK YOU for helping a scared, nervous patient understand more of this life changing event  My initial diagnosis was in Feb. 2015 and listed as stage 3B. My husband and I had just moved to Colorado and as life was busy, I didn't pay much attention to a pesky mole on my back. BIG MISTAKE. As my oncologist says, you can't think about what you should have done, but think about now and where to go forward. I hadn't been to a DR in about 5 years and with speed, I found myself going every week. My first Pet Scan revealed the melanoma had already traveled to my left arm lymph nodes. One week later I was in surgery having them removed. They also ran a Sentinel Node Biopsy on me the morning of surgery to determine where my lymphatic system ran. Since my mole sat in the middle of my back, the tracer ran to both arms. At that point, the surgeon decided to pull lymph nodes out of both of my armpits. This was all done on a Friday. I couldn't help but get weepy in the hospital thinking about all the other people in the world going on with their happy Friday, making plans for the weekend and I'm stuck in a hospital bed, I've been poked on and ran thru a scanner BEFORE being knocked out and cut on in the OR. Not a Friday I care to repeat. Surgery went well and I actually recovered remarkable well. No complications or infections, my JP drain was removed after 4 days..I was back at work within one week! Then it came time for treatment.

      I read a lot on here before I started treatment to get a feel of what other patients where going thru or using. My oncologist at the time had pushed for interferon. Had I known then, what i know now, I would have opted out or picked another treatment..but being scared and feeling overwhelmed, I went with it. Everybody is different and some do fine with interferon and it's a great option for them. Me personally, wasted 6 weeks of life feeling like crap, dragging myself to the Cancer Center for the 20 "boot camp" treatments, for it to do absolutely nothing for me. It wasn't until I was to start the self injections at home, that I had a bad gut feeling about my treatment and decided to search out a 2nd opinion. My body was shot. I was having horrible anixety attacks, something I never suffered from before. My head was constantly fuzzy and achy..I was DONE with interferon. I was pointed by a client of mine to a new dermatologist and quickly made an appointment with her. She inturn, pointed me towards the Melanoma Clinic at University of Colorado Hospital. From our fist appointment there, I have been impressed!! Sometimes I kick myself for not doing better research from the begining and starting there. We moved to Colorado to live a life of outdoor adventure, leaving all our family and friends we love behind.  When you're hit with the C word, hundreds of miles away from family and you have to face it on your own, you put your faith and trust in what the DR's are telling you is right..because you have no point of reference and you're SCARED. We did what we thought was the best..so I try not to stab myself with "why didn't I?" too often.

      My new Dr and University pulled me off of interferon. In his words, " I don't give this to my patients …I won't make you continue it" Basically I was told that it only really delays reoccurance and that's about it. Heart crushing to hear that. I put myself thru hell with that drug. For what?!!..but ya can't look back. Now as an established patient at the Melanoma Clinic, we made a plan on moving forward. I scheduled a follow up Pet Scan at my 6 month mark of diagnois and went on with my life. Every week I started to feel better as the interferon worked to leave my system. I did a lot of research on detoxing with fruit and veggies. Anything I could do to pull that junk out of my sysytem. Sept 9th 2015 my follow up Pet Scan rolled out. Matt and I traveled down to the hospital and went thru the rountine again. The next day I had my results with the DR. 

      I often tried to put into words what it feels like to stare at computer images that show spots of cancer in your body..but I can't. When the Dr showed Matt and I the 2 new spots, one down by chest wall, a little further down then the last spot and one on my back..all I could do was sit there and hold my throat and Matt's hand. I kept thinking, what is happening??? My staging was moved to 4 and I felt helpless. I didn't give myself much time to process as we immedietly went into talking about new treatment. The Dr sat with Matt and I for over an hr and covered every drug and question we had. I really couldn't ask for better caregivers at that clinic.

      Tomorrow, I start my first round of Yervoy. We decided this was a good choice for me and my expectations are high! I've really appreciated reading others experiences with the drug and how side effects have happened..or not in some cases. I'll go the 4 treatments every 3 weeks and be done by Christmas. I feel in great hands this go around and can't wait to go home to Missouri for Christmas with good news!! 

      Thank you again to all who particiapte on this site and answer questions. There are so many eyes reading and following along that never say anything. I was one for months and months and it helped me A LOT!  THANK YOU! And if anybody else is also a patient at University of Colorado, maybe we'll meet and say hi one day! ๐Ÿ™‚

      Niki

       

    Viewing 2 reply threads
    • Replies
        Gene_S
        Participant

          Niki,

          I just wanted to give you a little more boost in spirits.

          My husband went into a Yervoy clinical trial in March of 2011.  His had maintenance doses since it was a clinical trial but he became NED in Oct. 2012 and has remained that way ever since.  If you would like to read more about his journey take a look at his profile.

          For him it is his 3 year Anniversary of NED.

          Much luck to you.

          Judy (loving wife of Gene Stage IV and now NED)

            tschmith
            Participant

              Niki, 

              Wishing you all the best!  

              Keytruda has been the drug that worked for me.  Now we have options!

              Good luck and keep us posted!!!!

              Terrie

              tschmith
              Participant

                Niki, 

                Wishing you all the best!  

                Keytruda has been the drug that worked for me.  Now we have options!

                Good luck and keep us posted!!!!

                Terrie

                tschmith
                Participant

                  Niki, 

                  Wishing you all the best!  

                  Keytruda has been the drug that worked for me.  Now we have options!

                  Good luck and keep us posted!!!!

                  Terrie

                  nlac26
                  Participant

                    Judy,

                     

                    Thank you for the kind words. I went on Thursday and had my first round of Yervoy. Wasn't as bad as I had it played out in my mind. The nurse kept reassuring me that if I could get thru a month of interferon treatment, this was going to be a cake walk! HA! She has been right so far. I'm blessed to be in great hands and have my husband by my side every step of the way. Thank you again for shedding light! ๐Ÿ™‚ Niki

                    nlac26
                    Participant

                      Judy,

                       

                      Thank you for the kind words. I went on Thursday and had my first round of Yervoy. Wasn't as bad as I had it played out in my mind. The nurse kept reassuring me that if I could get thru a month of interferon treatment, this was going to be a cake walk! HA! She has been right so far. I'm blessed to be in great hands and have my husband by my side every step of the way. Thank you again for shedding light! ๐Ÿ™‚ Niki

                      nlac26
                      Participant

                        Judy,

                         

                        Thank you for the kind words. I went on Thursday and had my first round of Yervoy. Wasn't as bad as I had it played out in my mind. The nurse kept reassuring me that if I could get thru a month of interferon treatment, this was going to be a cake walk! HA! She has been right so far. I'm blessed to be in great hands and have my husband by my side every step of the way. Thank you again for shedding light! ๐Ÿ™‚ Niki

                      Gene_S
                      Participant

                        Niki,

                        I just wanted to give you a little more boost in spirits.

                        My husband went into a Yervoy clinical trial in March of 2011.  His had maintenance doses since it was a clinical trial but he became NED in Oct. 2012 and has remained that way ever since.  If you would like to read more about his journey take a look at his profile.

                        For him it is his 3 year Anniversary of NED.

                        Much luck to you.

                        Judy (loving wife of Gene Stage IV and now NED)

                        Gene_S
                        Participant

                          Niki,

                          I just wanted to give you a little more boost in spirits.

                          My husband went into a Yervoy clinical trial in March of 2011.  His had maintenance doses since it was a clinical trial but he became NED in Oct. 2012 and has remained that way ever since.  If you would like to read more about his journey take a look at his profile.

                          For him it is his 3 year Anniversary of NED.

                          Much luck to you.

                          Judy (loving wife of Gene Stage IV and now NED)

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