Hello new to this Advanced Melanoma

Hi.  Being told you have advanced melanoma is really scary and a huge step into the unknown. 

At this stage, the best advice I can give give,  from my.own personal experience, regarding  your meeting is to write down all the questions you have, take somebody with you and get them to make sure all.your questions are asked and to write down the answers.  You will not take everything in amd its so helpful to be able to have a written record.  Once you have a treatment plan in place, whilst it is still scary, you.can move forward, it's the waiting that is the hard part.  I have a small book I take with me to all my appointments that I write in and it helps me greatly. 

For info, I was diagnosed with advanced melanoma in August (no primary found) with a 50mm tumour in my lung and was.put onto immunotherapy- ipilimumab and nivolumab. 

Please let me know how you.get on.  Good luck. 

It cant be easy. Thinking of you and send love my way. 

Hi new to this but been told I will be put on immunotherapy. How has this been for you as list of reactions a bit scary. 
thanks

Hello Amil,

I am so sorry you are going through this. Yes can be really scary and stressful. I know my husband was put on immunotherapy every 6 weeks for a year. The drug was called Pembrolizomab. Mild flue and little effect. But unfortunately it did not work for my husband. It depends on person as every body is unique. A year later it metastisises. A scan picked up melanoma in both my husbands lungs. He was then put on a different type of immunotherapy which is called Nivolumab. Severe collitis. Could not continue treatments. He only had 2 treatments. Some of his tumours in his lungs has stopped growing and small ones dissapeared. It gave me hope. But 2 weeks ago my husband discovered a big lump on his head. Very close where he had his mole removed with local excision. We are hoping to get back his biopsy results soon. 

I hope this can help….

i think of you in this difficult time. Stay strong.

Greetings,

Thank you so much for reading. Im sending love your way too ️

Thanks for your reply. I hope you and your husband get through this.

Thank you Amil  Im just grateful for every day. Live your life the fullest. I hope you have lots of family and friends surrounding you with lots love. Do you also go to the Royal Marsden in Sutton? Thinking of you. 

Zaria

I’m not in that area. My journey is relatively new.

Hope our journeys are smoother in the New Year.

Thinking of you too.

Thank you so much Amil. Im sending prayers your way  Im lighting a candle for you. I have learnt to become grateful for every single day for truly great friends.  Be strong and courages. Do not be afraid. For the Lord your God will be with you.  Deuteronomy 31st verse 7 for you. 

Hi Amil

I agree with you that the list of potential side effects is scary, but the list for paracetamol is almost as bad!!  You need to remember that not everyone has side effects or that they can be quite mild.  

Unfortunately my immunotherapy has been halted as I got pneumonitis (inflammation) of my lungs and this has to be cleared before I can resume any form of treatment.   It is unlikely I will be put back on the immunotherapy as my reaction was quite severe.  However, a scan in November showed that, even after only 2 treatments, the tumour had reduced in size, so for that I am extremely grateful.

Even with all that I continue to work, try to stay positive and live my life as well as I can. 

Just remember that everyone reacts differently to these drugs.  Good Luck.