Primary cancer now diagnosed as melanoma

Hi 

Sorry to hear you are having a tough journey.

Hopefully being on this forum can help you.

Each individual journey is unique but others can share their experiences to make it less intimidating.

What immunotherapy treatment are you having? 

Leoni x

Hi Leoni,

 I haven’t started treatment yet so I am not sure what the plan is. I’m ok for the moment with painkillers, but it is nice to talk

It is good to talk 

Immunotherapy treatment is usually the treatment for Melanoma I believe. There is maintenance therapy which my husband had for 13 months and also combination immunotherapy which my husband is now having for four cycles. 

There are targeted therapies for braf positive patients to but my husband is braf negative. Oncology will create your plan.
Hopefully once you have a plan it will feel a little better x

Hi there 

so sorry you find yourself here but it is a great place for support & understanding 

only your oncologist can plan your treatment but I have mets in brain lungs & subcutaneous & I have been on immunotherapy since May this year I had 4 rounds of iPi & nivo by IV every 3 weeks then scans & now I’m on nivo maintenance every 2 weeks also IV I’ve had 6 so far & this will continue for 2 years provided there’s no progression at the moment all my tumours are stable more sans next month.

immunotherapy works really well

for melanoma provided you can tolerate it there are a lot of possible side effects some severe but I’ve been lucky so far with just minor issues headaches  & fatigue mainly.

if there’s questions I can help you with I will certainly try just ask

 Best wishes sending hugs 

Alli x

Thank you all for your support and information- it definitely helps

Hi, it’s really early days for you, which is daunting,  I’m halfway through my 2 year immunotherapy treatment, nivolumab/ipi combo for first 4 then nivo every 4 weeks. You can read progress on profile but all in all, I’ve been ok with painkillers and naps and I couldn’t do without my hot water bottle!
I’ve found the emotional ups & downs the most challenging. I have great family and friends but I find this site useful for folk who just GET IT.

Also, thankyou to the other responses on here, it helps when it’s 2.15 and I’m not sleeping.

Sweet dreams peeps xx

I feel i can't reply and can't begin to understand what you are going through as I'm only still waiting on biopsy results but just wanted to send love and strength, thinking of you ️ xx

Hi lovely 

hope you don’t mind me asking, have they told you the plan after the treatment finishes in 2 years. My husband is half way through the four cycles of combination and they said he could do the maintenance for two years if the scan shows improvement 

thank you 

Hello, hope you are both doing ok.

I don’t know what is happening after my 2nd year of immunotherapy yet. I’m BRAF positive so I think that means there is options. My last 2 scans were stable, prior to this the treatment shrank tumours by half.

I’ll miby ask Consultant after my next scan what my options might be when the immunotherapy ends. If I’m tolerating it, I’d be happy to continue with it but not sure if that is an option.

Look after each other xx

Thank you for replying lovely. Hope you are doing ok.

Husbanb has his third treatment next week.

Take care- keep us updated x