Newbie + adjuvant treatment options for stage 3 melanoma

Hi I think everyone reacts differently to treatments so it’s hard to say one is better than the others. I took the dam trab tablets for 7 months and found I had muscle aches and also bad shaking. My hair started to thin and I didn’t feel well with the tablets. However I have read others have been ok. I am on immunotherapy at the moment and find it ok with only slight tiredness the day after the infusion and a slight itchy rash only on my lower back . It is a had choice and maybe after talking to your oncologist he or she could tell you which was better for you. Good luck with your decision and treatment. 

Hi Ashah 

Welcome to the group. I was in your position in December last year and remember feeling very overwhelmed - in fact I posted a similar message to you on here. 

I had the same options as you and I decided to go for Dab and Tram - the tablets that you take everyday for 12 months. I started on Boxing Day 2020. So I am 3 months in! 

Apologies for the long post but thought might help if I list everything for you. 

My reasons for choosing Dab and Tram were:  (and obviously everyone is different so this is based on my personal choice/experience)

* I wanted treatment, for me not doing anything just wasn’t an option. I wanted to feel like I was taking control and 14% well, I’ll take that ;o) 

* I thought that the reversibility of side effects was reassuring and probably my main reason for choosing this treatment. 

* I thought I would give the treatment that was for BRAF positive people for me a go - there had to be some positive news about having the mutation (if that makes any sense!) 

* I just didn’t want to go into hospital on the wards for the immunotherapy of I didn’t have to. 

* I am in good health, my heart is in good shape etc and no health concerns that the oncologist was worried about. 

My side effects: 

Overall I have been very lucky and they have been very manageable. 

At first I did have temperature spikes, they weren’t great but they are manageable and once I knew what they were I felt better. I was hospitalised for 2 nights over new year - but this was because they wanted to make sure I didn’t have an infection. I actually felt ok. I have had three/four episodes - never needed hospital again - the helpline they give you is fantastic. These are less now, but I am on paracetomol for the moment to stop it - again not a problem for me. 

Minor psoriasis - which I had before to be honest  - managed well and now disappeared. Diprobase was prescribed. I have also had a few spots - a bit like those I had as a teenager - again, it’s not great but it’s not too bad at all. 

Some gum problems - always suffered with inflammation the tablets just made it worse - sorted by my lovely dentist, ibroprofen and special mouth wash. 

The main one has been tiredness - but again manageable. My feet ache quite a lot and I need naps - but again, I just take each day as it comes. 

I have regular heart scans and they are fine. Hospital has been doing them every couple of months. I also have regular monthly blood tests etc and all good. 

it does affect your meal times slightly - you can’t eat before and after taking them but I work round this (with help from someone on here) and it fits our lifestyle well. I take them at 10am and 10pm each day - but you take yours when it suits you. 

Hope that helps a little - I took a few days to make up my mind, I spoke to so many people but this was the treatment for me - glad I made this decision. I take each day as it comes - the support team is brilliant at the hospital and I am sure yours will be the same if you choose this form of treatment. 

Let us know how you get on xxx 

Hi JosieK

Thanks so much for getting in touch and sharing your experiences to date. I'm pleased you're managing well on the medication and long may that continue. I think I should have some treatment and for the reasons you've stated the dab tram combination may be the best option. I'll speak to a few more cancer specialists and do a bit more research to help me decide.

All the very best to you.

Hope all goes well. 

Kind regards Ashah xx

Hello

Thanks so much for sharing your experiences and telling me about some of the unpleasant side effects you had when taking the targeted treatment. I'm pleased you're coping better with the immunotherapy medication. I hope this continues for you. I'll speak to a few more cancer specialists and do a bit more research to help me decide what may be best overall for me. 

All the very best to you

Kind regards Ashah

Glad it helped, I realise it was a bit of an essay lol! 

I found the specialist nurses very helpful and Macmillan were very good too. It is an overwhelming time so look after yourself and this forum really is great. I have been on here a few times and every time I have found it a positive and helpful experience. 

Take care xx 

Thanks again JosieK

All the best xx

Hi I'm currently on Pembro for stage 3 I have my third treatment next week to to now I've been lucky and had no side effects at all . 

As stated above everyone has Thier own reasons why they chose certain treatment etc my main one was personally I go.the hospital once every 6 weeks for an hour then its done for another 6 weeks I felt like if I had to take the tablets like 5  tablets etc every day it would be a Constant reminder what id been through that's just my personal reason why..

I had two nodes affected one being the sentile biopsy node which had 0.5 mm of melanoma inside then I had neck dissection and there was one other node out of 16 taken out with 0.3 mm in so i decided to have the adjuvant treatment 

I think with the Pembro 7% of people could have permanent side effects but my oncologist said all of them can be managed with medication etc if needed but they all have Thier pros and cons really I suppose :) 

Whatever you decide to do I wish you luck ️ 

Hello

Thanks for this. So pleased you're doing well. All the very best for the future.

Ashah ️

This post had been very helpful I am due to meet with the oncologist in two weeks time stage 3 as melanoma cells were found in 2 out of the 3 lymph nodes  that were removed from my SLNB at mey ear. I have been looking into the treatment options but it’s such a lot to take in. Tablets , three weekly visits , six weekly visits. Just trying to prepare myself with some knowledge before I go, thanks x