Melanoma with chronic heart disease

Hi Peachymel2000, I’m sorry to hear about your diagnosis and heart problems, I was diagnosed with metastatic melanoma with no primary found in 2015, I don’t have the heart problem experience. I am currently on targeted therapy tablets for melanoma as I tested BRAF positive for the dna alteration that they target and had to have an ecg before starting them as they can alter the way your heart works. It the only treatment apart from surgery that I’ve had an ecg for. Immunotherapy in general is milder in side effects than chemotherapy (which we don’t get) so I’m hoping your oncologist can put your mind at rest soon. I sometimes think it’s the waiting and worrying that takes more of a tole on us.

I assume you’ve been told to take a list of your meds to your appointment they can then check that it’s ok to receive Pembrolizumab or Nivolumab with your current meds completely safely, or warn you of any risks. I’ve found that it helps to write down the questions you want to ask to, just to keep focused on facts instead of any emotions and to jot notes down even though I get a letter afterwards summarising things. 

I do hope the oncologist has good news for you, and that you will come back and tell us how you got on. I have experience with Pembrolizumab so can answer some questions on that from personal experience but we are all different in how we react to side effects and how well it works. Pembro worked well for me for years and had little side effects and I’m still looking like I’m not ill at all.

Hi KT

Thankyou for your lovely message, it's been a difficult week as I was told they can't cure the cancer just control it.

They are going to start me on Immunotherapy with Ipilimumab and Nivolumab together, they've told me all the risks e.t.c but if I have any chance I will try anything. So here's hoping all goes well, and thanks again xx

Hi Peachymel2000I’m glad you have a plan, it can be hard hearing your incurable but you are treatable, ipilumamab has 4 doses before you are on Nivolumab on its own, and sometimes 1 dose of Ipi has been enough to get the immune system going and zapping melanoma. Immunotherapy can be good that it offers the opportunity of a long term response. I hope you respond well to it and that the side effects are kind.

Hi KT

Thankyou for responding I really appreciate your input, just read your story, you have been through alot, it's helped me reading through your profile,. Take care

Melissa