Hi, I have Stage 4 Metatastic Melanoma, with a tumor in my right lung and one near my spine. I have now had 3 treatments of Premb, and I'm keen to hear from group members who have a similar Diagnosis and to share our experiences.
Hi yes I have a tumour near my kidney ,one near my spine and I did have small ones in my lungs but not sure if these have disappeared now. I was on ipi and Nivolumab and then have spent almost two years on Nivolumab.My scans show my tumours are shrinking and I think I am having a pet scan in a months time to see the tumour burden. I am writing to say I know everyone’s different but I have had only minor side effects. Tiredness after treatment ,a slight itchy rash and occasional joint ache.
I am able to do the things I want to and have learnt to listen to my body and rest when I feel tired. I appreciate life much more than I did and even will try new activities eg going to make a table on. Woodwork course and I have never touched a tool in my life. I see friends who make me happy and stay away from those who just want to talk about illness etc.
Saying that I do at times feel down but that is only normal. We are lucky to have the treatments these days and I am so grateful to receive them Yes sometimes we have along wait in hospital clinics but generally we are so lucky People have helped me on this site and it’s good to know you are not alone. Keep in touch and inform us how things are going.
Hi Kdon24, I have metastatic melanoma, currently I have just two enlarged lymph nodes in my groin, and I’m on about my 46th dose of Pembrolizumab. If you have any questions just fire away, I’ve put quite a bit in my profile as well. We are lucky in that Pembrolizumab is licensed for melanoma for as long as we need it, where as lung cancer patients have a two year cut off. When melanoma patients stop at two years, if we become clear, we can restart Pembrolizumab. I stopped at one year when after having melanoma in my abdominal and pelvic lymph nodes and ovary I became no evidence of disease. After one year off treatment and clear I had a recurrence and went back onto Pembro in June 2018.
