Hi HarlyD

There are lots of  threads here about what many refer to as pembro. Here is a link to one of them, there are many more.

 RE: Immunotherapy treatment 

Id say to you to start the treatment, give it a chance, this group of drugs are very effective at getting your own immune system to destroy cancer cells and mostly have bearable side effects, you will be closely monitored for any side effects which can be treated and at worst you will stop having the treatment.

I'm currently receiving a course of immunotherapy called cemiplimab. Despite the long list of side effects, I "only" get fatigue and a skin rash which is treatable with a cream. But the huge upside is that it has already shrunk otherwise untreatable tumours down from size of marbles to pin heads.

Best wishes for whatever choice you make.

Ed

Thank you for your response and I am pleased to hear that you are having a positive response to the drugs, hope all goes well for you too.

Best wishes 

HarlyD

My partner has some side effects but after his two years of treatment afforded by the NHS he's still here and he wouldn't have been without it. He's now got a 5 year outlook where as he was lucky to maybe have two. My partner has melanoma. What are they hoping to treat for you?

Hi Lyns21, mines is also melanoma, I had it removed from my back and had the lymph node biopsy 

the biopsy under my arm came back positive, my last scans came back clear but I now have to decide whether to have the pembrolizumab treatment or not, I was just worried about the side effects and seek any advice from people that have had it or having it. 
I hope your partner is doing well 

take care of each other

best wishes 

Hi HarlyD

I have been offered Pembrolizumab and worried about the side effects

Just wondering how did you get on did you go ahead with the treatment and how is it going

Thanks

Chris

Hi Chris,

First of all let me start by saying, sorry you are in the same dilemma as I was. I understand it is a lot to take in, in deciding to have the treatment or not.

In my case I decided to go ahead with the treatment, because I thought the risk of side effects was better than having to have more invasive treatment later.

Don't get me wrong I didn't make this decision lightly. I also came on this forum seeking answers.

 I have had 4 lots of Prembroilzumab up to now. I have been absolutely fine, the only thing I have had is a very mild headache a couple of times [ not enough to warrant pain relief ] the two days following infusion.

I understand not everybody is the same and my wife and I deliberated over this dilemma all through Christmas last year, and I am pleased we decided to  go ahead.

Hope this helps

If I can help with anything going forward please don't hesitate to reach out

Kind Regards

Stuart

Hi Chris,

To be honest I thought I was going to have to right this year off, to the point where I was getting jobs done before I started treatment, but I have gone into it with a positive mind set and I am still doing everything I would normally do (thankfully).

Hope this is the same for you if you decided to go a head. You will make the right decision for yourself, like I said before, it's a lot to take in when you are first given the option for this. Just remember they have to tell you the worst of the side effects but it does not necessarily mean you will get any. That's what I took from it anyway.

Good Luck, hope all works out for you. 

Take Care, 

regards

Stuart

Thank you Stuart I feel a bit more posotive after reading your posts as you say they have to tell you all the side effects same as taking a paracetamol .but no one reads them ones

Thanks again

Chris

Hi all

I am on Pembrolizumab and have just had my 6th out of  9 infusions.

Side effects wise ... Well it's like Xmas every day .... You get up and wonder what gift it's (pembrolizumab) is going to give you today lol .

To be fair I've been ok ... Fatigue is my main side effect, the day after my infusion I am usually wiped out and then it comes on totally at random but I am still holding down a 40hr working week.

Brain fog is another one but my other half says she doesn't notice the difference to any other day lol.

And a new one that's only came on after infusion 5 is explosive diarrhoea   lol I  get about a 5 min warning ️ lol

But again it's random  once a day  maybe 3 times a week . My consultant is aware and is not concerned as I am coping well, no weight loss and it's not constant .

But on a positive .... I'm NED