Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Melonoma stage 3

snj963
Posted by

Hi. I came on here a few months ago due to my husband stage 2 melonoma in May. Various scans and 7 procedures with WLE on stomach and shoulder and lymph node removal in groin. He is now stage 3 and the 5 lymph nodes removed from his groin have come back negative which is good news. He has now been told he can either have immunotherapy Nivolumab or Dabrafenib and Trametinib along with the 3 month scans. He has to let the oncology team know ASAP so I was wondering if anyone could give us any advice as to which to go for. From the advice given from the hospital they were recommending the 2nd option but from what I have read up on the side effects seem to be worse but I am not sure on which would be better initially. 

KTatHome
Posted by

Hello , this is a very difficult question to help you with, as we are not professionals here, but mostly patients with some carers. Some of us will have our own experience with some of these drugs which may help you if you want to consider life style impact on your husband’s choice. It sounds like your husband is stage 3, he has had surgery and all the melanoma has been removed. The NHS has recently approved treatments for an adjuvant use to help melanoma not recur. 

I am inserting a link from June’s melanoma patient conference that might help you, and remind you of the information that your drs have already given you. That you can only have DabTram if your BRAF +ve, but it has a higher rate of incidents than NIvo according to the trial. But the side effects usually stop once you stop the drug I believe, so you can have a pause of a few days, where as when you have the iv, you’ve all 3 weeks worth rather than stopping for a few days. 

I know when I was put on Dabrafenib (not tram as well as it wasn’t available) I was glad to be on a tablet as I did not fancy going into the chemo suite and having treatment by iv. I only had to attend hospital once every 4 weeks for appointments and to collect my drugs, but I was there for several hours as blood tests had to be through for drs to ok the meds and then a wait for pharmacy to catch up and go through security protocol. The down side was being ridged with the timing of taking them.

i had them not as adjuvant but as a treatment as I could not have surgery, too many and in too awkward a place. When I moved onto Pembro the plus side was feeling free to move my meal times around. I had to go twice to the hospital once for blood tests and 2 days later for treatment but this does not happen at every site. Sometimes I can get away with 15 mins on a trip for bloods othertimes it’s 90 mins to see a dr as well. The treatment day is always around 90 mins with putting cannula in, the saline x2 and for me Pembro which is similar to Nivo. I have to go every 3 weeks which leaves only 2 1/2 weeks between visits for holiday, I didn’t know if the timing for adjuvant is different. I go to a teaching hospital and occasionally it’s very painful when a cannula goes in, and others it’s a breeze and I don’t feel it, some people fail 2 attempts and have to swop to a different person for the 3rd attempt. 

I felt more normal on tablets rather than feeling tired for a few days every 3 weeks on Pembro, but Pembro gives a chance at a longer time melanoma free. But I was not adjuvant, I stopped after one year and for me it still recurred.

Your husband might not need any treatment it might not recur with out treatment but stats show it gives a better chance. 

Here is the link I promised from the melanoma patient conference, that I hope might help you mull things over.

https://youtu.be/Ybln2-Czn6Q

Any more questions for me or others just hit reply (and as it will go to everyone on the thread please put their name at the top)

best wishes

KT 

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

snj963
Posted by
  1. Thank you so much for all your advice and the link for you tube. It's so nice to chat and get support from other people that are and have gone through all of this. Many thanks once again and I wish yu well in your treatment also. I will let you know which option my husband goes for and how he gets on. 
  2. Thank you very much I appreciate your kindness 
KTatHome
Posted by

Thank you, snj963,  I might ask if there is any advantage to starting dam tram first, to have Nivo in reserve if a further spread happens.

Oh and I forgot I felt that Dabrafenib started working very quickly within days, where as I feel Pembro took about 2 weeks for me to start feeling better but your husband might not need that advantage as he has had surgery,

best wishes

KT 

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.