Melanoma Treatment

Hi and a very warm welcome to the online community, although I'm sorry to have to welcome yet another person who has had a melanoma diagnosis.

I'm glad to hear that you want to help others who have had a melanoma diagnosis. Perhaps you could tell us all a bit about your experience with melanoma and, when you have a minute, pop something about your journey into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hello , thank you for doing your profile I can see that you were on the same drug as me Pembrolizumab. I became a complete responder and stopped after a year, as the thinking then was that 2 years might be too long. I returned to Pembro a year later when a few nodes showed up enlarged on a scan. I’m now 19 months in to having it this second time, my next 3 monthly scan is due on Friday. I hope having had the drug for 2 years, that you have a very long time before you need to return (if ever), it felt so good to be off treatment. 

I looked on the Keytruda.com site to see if prostate cancer was mentioned as a cancer it treats, it’s not mentioned yet. 

I saw you said you may be able to help others, please feel free to join in any posts that others make asking for experience that you have and for emotional support, I bet you’ve had your own ways of coping in the last few years.

Best wishes

My last scan in October showed up some tiny nodules in my lungs but were left until the results of my next scan were in. I had the latest scan on the 26th of January and a clinic appointment on the 21st so will see. Are you on three weekly infusions and where please? Initially I was told that a check on my blood showed I would be a slow responder so I was surprised just how quickly the exterior ones began to shrink. Approaching 78 now I consider myself very lucky to still be here and initially I thought I was on the way out and sold my car and a static caravan we had. I had another car within six months of starting the Pembro.

Hi Latchbrook,

Yesterday, I was of a mind , like yourselves, to want to help others who may be going through what the likes of we are. However on looking at others stories it has made me realise just how vulnerable I still am and will continue to be with this cancer. It has brought it to the forefront of my mind whereas most of the time I just get on and do not think about it. Ever case has differences but for me to remain positive for myself and family after nearly four years of surviving, I feel I must step back from the site and not continue to be involved. Sorry.

Hi Ekulrac, just in case you are still around to see this, I have just changed from 3 weekly to 6 weekly treatment in January. I can understand that need to not be on the site if it wobbles your confidence, I sometimes feel like that myself. In truth the worst time for wobbles for me are when I’m waiting for scan results. As you say we are all different so that fact I had a recurrence does not mean you will especially as you have had Pembro for one year more than me initially. 

I remind myself when I have a wobble that I’m not out of treatment options and that other treatments not yet available now, most probably will be available in the future when I need them. It doesn’t stop me having the wobble though, it’s just my way of getting over them sooner and telling myself today I’m ok, and I can’t change what any scan result will be. It helps me sometimes to quietly feel this on my own and sometimes to voice (I was going to say rant) on here either in this group or on here in a blog I write ever few months to get the feelings out of my head. Once I’ve voiced what I’m worried about I can tell myself, “I’m not there yet, and I want to enjoy today”, I can take time to feel what’s good about today. In fact I was at a Hope course today which concentrated on things that are positive in our lives.

 I fully appreciate you have to do what’s best for you.

Best wishes 

Hi Ekulrac 

There's no need to apologise for leaving the community, although I'm sorry to see you go. 

I can understand why you feel that reading about other people's experiences with melanoma reminds you too much about your own situation and that's why you want to leave. 

Maybe further down the line you might feel ready to come back and share your experiences with us.

Look after yourself 

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