I had lymph node groin dissection 5 weeks ago and Melanoma was found in one lymph node out of 9 and I have been referred to oncology for further treatment.I turned down immunotherapy treatment in 2020 but now feel with this diagnosis I should give it a go. I am very frightened of how I may be affected. Can anyone help me overcome my fear?
Hi Dicksie and welcome to this forum. Sorry to hear that you have ? recurrence of your melanoma and are looking at treatment more seriously this time.
I can say honestly that my 10 doses of immunotherapy have given me minimal side effects so far. I've been having Pembro at the chemo unit in my local hospital every three weeks. I have blood taken two days before treatment to check various levels the on treatment day itself have approximately a three hour stay in hospital having a small cannula put in my hand followed by small bag of saline then the drug itself them some more saline to flush the drug through. The staff have been brilliant in supporting me plus I'm having reflexology every visit and also 6 sessions of talking therapy too. These fairly new drugs are the best way to combat the melanoma right now and are having positive results. It's natural to be afraid but once you start treatment I believe the huge fears you're feeling will go away. Take care x
Thank you for that reassurance. I thought the treatment would be weekly so good to know it’s every three weeks and you are not experiencing bad side effects. Is the reflexology and talking therapy something that was offered as part of the treatment or was it offered independently?
Hi Dicksie, the reflexology was started a few years ago by one determined lady and is offered free of charge to those who would like it in the chemo unit, the outpatient radiotherapy centre, the main cancer ward plus others maybe. There's at least two reflexologists.
As for the counseling, I was informed that the hospital itself offers an initial 6 week set of appointments. This has been by zoom of course. So both these things are offered outside of the tregular treatment.
Some oncologists are doubling the dose given and are giving the meds every 6 weeks but my oncologist is being more cautious and just using the single dose every 3 weeks.
Hi Allotment lover
Thanks for your reply. I have now seen my oncologist who is going to start me on a course of Nivolumab every 4 weeks. She has also referred me to psychologist to help with my mental state. She has suggested that as the melanoma was in my lymph nodes that it will almost certainly recur elsewhere without the treatment. I have been given the information of the drug with a very lengthy list of side effects which all should very scary but I will try to grin and bear it. I have also developed Lymphoedema in my thigh and am attending my local clinic which is Hospice based and they are also going to offer support as well. My treatment starts in 5 weeks as my wound is still not fully healed yet. Do you think the side effects are the same for Pembro ? Xx
Hi Dicksie, I've guessed you are Braf positive therefore having nivolumab as that's given in the first instance instead of Pembro. I'm not familiar with the side effects of Nivolumab I'm afraid. They may be the same. I've been lucky so far and had few effects.
I'm sorry to hear you've got lymphoedema and fingers crossed the physio will work. Sounds like you've got some good support systems set up and I hope they are useful to you. Wounds are a nuisance and can take a while to heal. Take care xx
Hi Allotment Lover. My wounds have finally healed and getting used to living with lymphoedema. I finally started my treatment this week and feel much more relaxed having made the decision to go forward with it.so far just a bad headache and a bit of tiredness today.was wondering if the side effects change as the treatment progresses.:I am having Nivolumab every four weeks . Hope you are still ok x