Side effects of immunotherapy

[Paula69]

Hi all iam new to here,

ihave  melanoma  metastatic in my right groin , currently doing ipilimumab/nivolumab ( immunotherapy) treatment have just had the 4th round , iam just after anyone else experiences with immunotherapy  I have sadly got every side effect you can get on it,   I now have low cortisol and low thyroid problems, good news is the cancer has shrunk but now I have all these other problems just after     any info or stories from other patients,  thanks in advance for any feed back .

                                               Paula

[joseph_CCNSW]

Hello Paula69.  Thank you for posting here.  Being diagnosed with a cancer comes with all sorts of feelings and thoughts.   The online forum can be helpful space to connect with others who share their experience.  You are welcome to call Cancer Council's 13 11 20 Cancer Information and Support team for a confidential conversation.   Kind regards ... Joseph_CCNSW

[LindaMS]

Hi Paula, I was diagnosed with endometrial cancer metastasized to the lungs nearly three years ago - stage 4 terminal. I have been receiving immunotherapy infusions (Pembrolizumad) since then. So grateful that the tumours have shrunk and I have been able to live a relatively normal life. But yes there are many issues. I, soon needed hormone replacement therapy and my blood pressure rose. I also have a high level of fatigue and unpleasant stomach issues and reflux. But I am being treated for these things - somewhat successfully. The  fatigue is ongoing though.  But it is rather a miracle I am still here - given my initial diagnosis.  Wishing you all the best and hope things settle down for you.

[Paula69]

Thank you for replying , my tumours have shrunk nearly 4 mill which is good l am glad yours have too , I too have a lot of stomach pain was not sure if it was the therapy or something else , it is good to talk to people having the same treatment and sharing our experiences , Ian now waiting to have a pet scan to see where we go from here so fingers x and wishing you all the best