Stage 4 melanoma treatment

Sorry for your diagnosis. Yes I had lots of tumours ,see my profile and had dam tram for 7 months before my disease progressed. I then had ipi and Nivolumab four times and since the have been on Nivolumab every 4 weeks. My pet scan initially showed no disease present but after they looked again they decided to give me another year of Nivolumab as there was a shiny area near my left kidney. I was pleased to continue as the treatment gives me some reassurance. 

I had some side effects on ipi and Nivolumab together but nothing I couldn’t cope with. I found the side effects of the tablets worse and used to shake uncontrollably and was always cold.

I had a large tumour burden initially but it does show how effective this treatment can be. I try to get on with life and as I am retired it dies make it easier to rest when needed. I am only tired just after the infusion and then maybe 2 days later it kicks in. I get out each day going for long walks weather permitting. I have just put our exercise bike on the landing to use. I have to be careful not to overdo the cycling due to the fact I have lymphodema in my leg as a result of the groin dissection. 

It hasn’t all been plain sailing. I do have days when I feel low but have always had a positive personality and mainly just get on with it. It is more demanding on time now when we have to get a covid test done before treatment as well as a blood test. 

After all that I am glad to be alive and see friends ( when we are able to ) and get on with things. I feel it’s important to eat healthy food and don’t take probiotics as you need a wide gut bacteria. Saying that over Christmas I will indulge and try to cut back before I see my consultant in February. I hope this helps you and I wish you a good Christmas and a better New Year 

Hi  I am truly sorry to hear your latest diagnosis and sincerely hope the Ipi/Nivo immunotherapy works for you. I am also stage 4 but had the Ipi / Nivo immunotherapy before the Dab / Tram. My oncologist was devastated when the Ipi / Nivo didn’t work for me as he believes it is the very best treatment so fingers crossed your body will tolerate it and you respond well. 

I am also stage 4 and reacted badly to ipi/nivo combination, please can you tell me what fab/tram is?

thanks

Dab/tram

Hi sunnydayeveryday,

so sorry to hear you’re diagnosis,I’m also 48 , have  a nearly 8 year old and 23 year old and am totally terrified too, I had excision of a melanoma 10 years ago on my foot and a groin resection and Nothing more for all those years and then discovered in a lump in my groin this April, I had 2 cycles of the ipi/ nivo, unfortunately it didn’t suit me and I reacted badly but I know it works well foR many people. I think these treatments effect us all so differently, really hope it works for you. My cancer seems to be spreading faster now, last ct in December showing now on adrenal glands and spleen, I’ve only tried this 2 immunotherapy combination, really hope there’s something else they can try for me, it’s hard not to feel desolate sometimes, have tried to forget about it all over Christmas and enjoy family times. Unfortunately I’m braf negative too so none of those medications work. I think I’ve got an unusual one. Anyways keeping fingers crossed for you and all the best,

if anyone out there knows of any other treatments out there , give me a shout please.

Hi

How are you and how are you getting on with Nivolumab and Ipilimunab?

x

HiI too  had lymph nodes removed in my groin in June and went on Dab and Tram. I struggled with side effects and at my 3 month scan they found the melanoma had progressed. I was then given 4 rounds of ipi nivo ( finished Dec) with minimal side effects - my body coped much better with the ipi nivo. And I just learned that my scans are clear. I will now have monthly nivo infusions. Everyone reacts differently but hopefully you will be ok with the ipi nivo. Best of luck. 

Hi thank you so much for your reply. Sorry it has taken so long to get back to you. I was very poorly Xmas eve and thought I had muscle spasms but it turned out to be a tumour bleed on my liver! I had emergency keyhole surgery Xmas evening and it was touch and go but I have pulled through am now out of hospital again and ready to make a start with the iPi Nivo combination hopefully this Thursday as long as my bloods are ok tomorrow. My tumour burden is also very large and sizeable so I am feeling hopeful after your message as it sounds like being active and healthy is going to help. I also love walking and live on a farm so always plenty of fresh air and exercise. 
Interesting what you said about the dab and tram tablets, they really knocked me about so I am worried about the infusion  but must keep reminding myself that it is different drugs so hopefully same won’t happen again.

good luck with you consultants in feb, will you have another scan and how often did they scan you during treatment?

best wishes

Hi

i am sorry to hear that the ipi/ nivo combination didn’t work for you. How many infusions did you have, did you react to them much? Are you going to try the dab and tram tablets.?

inam sorry for my late reply but I was very ill over Xmas with a tumour bleed in my liver and ended up with quite a long stay in hospital and emergency surgery.

Hi, really sorry to hear that you reacted badly to the ipi/nivo combination. How. Many infusions did you have and what reactions? The DAB & Tram are a tablet form of targeted therapy but you need to be Braf positive to be able to take them. I am sure your consultant will advise, 

best wishes