New to the group and inspired by the togetherness of the group. Lovely to see there's support.

Hi RD,

I haven't been good but thanks for your support.

Steve

Sorry to here the side effects are so bad for you, hopefully they can swap you to another treatment that your body likes a bit better. 

Hi Annette,

Treatment did start back up 2 weeks ago but then it knocked me back again, been in hospital a week now. Lost loads of weight and due to side effects I continue to have my treatment is getting stopped. Gutted as it felt like it was my only chance but I'm sure they'll be to try something else so I won't be giving up.

Hope you're ok

Steve

Hi Steve, I’m sorry to hear that you’ve been ill again and that they have stopped your Ipi Nivo, It’s good that you have had 3 out of the 4 Ipi, as often 1 Ipi holds things back so 3 means you were nearly there, so I’m going to be hopeful along with you. 

I’m no further forward (or backward) than when we last spoke. My lump in my groin is very visible to me and hard about the size of a walnut shell and 1cm higher than the normal level of the skin. I don’t know what the others that are more internal are doing and I’m awaiting a scan to find out. My next appointment in September will be face to face for the scan results, I’m to alert them if the skin above starts to go purple or if I start to be in pain, it’s just uncomfortable at times at the moment.   My cancer is slow growing at the moment so the don’t want to jump to soon, they think it’s still working on some areas but they don’t want to change to late either so scan should be mid August they are chasing a date for me. 

https://clinicaltrials.gov/ct2/show/NCT03997474?recrs=abdf&cond=Melanoma&cntry=GB&city=Cambridge&draw=2&rank=2

Above is the link for the trial they are considering for me, I spoke to a different consultant last appointment who I have known for a while and she says she also knows of another trial based on BRAF treatment, it’s all dependant on that next scan so I felt it best to leave things at that and I will hear if it’s relevant next time. Too many ifs and buts, so I’m shelving them for a few weeks. 

I hope the gap off treatment means you can gain strength for a bit, and I hope that you will be closely monitored.

Hi Steve, Sorry but I have just read this! Hope things have calmed down a lot by now for you. As KT has said Ipi is so strong that even one treatment can make a difference and you have had three which is fantastic! Hope it keeps on working inside for a long time!

Hi Steve, I apologize for not taking part in this discussion for the last month, but have been in a bad place, as I mentioned when I last contacted the group, my friend of 40 years had lung and brain cancer, unfortunately it took her away from us on 4th August, we have lost a wonderful person.

I have recently been told my cancer is under control and can look forward to many years, i hope the doctors can give you and your family the same good news.

All the very best Ulls

Hi Ulls, 

So sorry for your loss, it's so cruel.

I am currently still in hospital unwell. I've just had full CT to check my brain, lungs and pancreas which they're now concerned isn't functioning properly. Not looking forward to the results but I need to know so I can move forward. 

So pleased you've had some good news and long may it continue.

Take care,

Steve 

Hi KT, 

Yeah I'm still in hospital, hasn't been an easy couple of weeks especially leaving my wife to manage alone with our twins. But hopefully I'll have some answers soon having had scans today. 

I'll have to see what the plan is for my future treatment as they're stopping the immunotherapy altogether. 

One step at a time though, I'm sure they'll be to offer me something else.

Clinical trials seem scary but probably worthwhile.

Take care,

Steve 

Hi Ulls, I was so sorry to read about your friend dying. A very good friend of mine (of 30+ years) went into hospital to have a knee replacement and died of a heart attack three days later. It was a shock to everyone. There was I, having been told a year before, I had 5-7 months to live! I couldn't believe she was gone and I was still here. I had expected to die but because of a trial drug, I'm still here but I have left nothing unsaid to my family. Every day I tell them I love them. My friend didn't get that chance, so I think I am the lucky one.

I am so pleased to read your cancer is under control, long may it continue and you enjoy the coming years with renewed excitement!

Oh Steve, I am so sorry to read you are still in hospital. I do hope your scan results are a lot better than you expect and they find a trial to suit you, then you will be around for a long time for your family.
I remember looking at your Profile Page last time I read a post from you and I see you haven't been well enough to fill that in yet. How old are your twins? Girl or boys?