Hi Everyone, my Dad has just been diagnosed with metastatic malignant melanoma. He had been complaining of stomach problems for quite some time and was sent for blood tests and told he had a high white blood cell count so was given antibiotics which did nothing, he was then misdiagnosed with lymphatic cancer and was to go in to get his treatment plan to then be told it was actually metastatic malignant melanoma. He has a 10cm mass in his tummy and a lump under his arm. It took forever to get a proper diagnosis and we were waiting for a Braf gene test to come back. We had hoped it would come back positive as it would work faster the targeted therapy, it did come back positive but because it was a very rare form they decided to start him in immunotherapy. He started his first dose of of ipilimumab and nivolumab on Wednesday and has been really unwell, he had a really high temp and very painful tummy. He had been prescribed liquid morphine before all this but it wasn't doing much, so he is now taking morphine tablets as the pain was so bad.It is heartbreaking. he has just retired as well. He is 72. We were told by the professor that this treatment is a game changer for melanoma. I really hope it works for my Dad and that he starts to feel better.
Hi Gal2000 and a very warm welcome to the online community which I hope you'll both find is both an informative and supportive place to be.
I'm sorry to read that your dad has been diagnosed with advanced melanoma and I really hope that the immunotherapy that he's on will help considerably. When I was diagnosed with melanoma back in 2016, my SCNS had just come back to work in the melanoma department after working elsewhere in the NHS for a number of years. She said that when she'd left the department there really wasn't much that could be done for people whose melanoma had spread but that now the oncologist had a whole drawer full, as she put it, of different successful treatments he could offer.
There are quite a lot of people in the group who are receiving immunotherapy and I'm sure they'll be happy to answer questions and share experiences with you if there's anything that you want to ask.
It would be great if you could put something about your dad's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
