Been offered preventative immunotherapy - decision required

Hi Tony, treatment decisions they set minds going down the rabbit holes of what ifs, that we don’t always want to go down, and set us going round in full circle, or is that just me. 

My opinion is our experience isn’t going to tell you what will happen to you or what is right for you therefore the choice of adjuvant Pembrolizumab may be right for you or it may right to choose not, I’d hate to recommend either one but I can help with how I try and look at treatment decisions and give a bit of my experience. I will give a long post warning now. 

I had like you an unfounded primary, but I could not have surgery on diagnosis as it was in too many lymph node areas so my first experience with Pembro wasn’t adjuvant, and as I became clear after 6 months I didn’t do the initially recommended 2 years I did only one as I was given a choice of a break. I chose the break because the call of getting back to normal and minimising any prospect of long term side effects was loud after 21 months of treatment, louder than the fear of coming off treatment as I could go back on it if something appeared. When something did appear I went back onto Pembro, then later had surgery to remove the only visible bit and went back onto Pembro as an adjuvant treatment for a year but I’ve had a series of blips and breaks which are in my profile. I had no doubt in returning onto treatment. I’ve finished with Pembro now as it’s no longer working for me after 57 doses and recently had treatment decisions to be made of what I should start next taking into account side effects and quality of life and giving myself the greatest chance of getting to all clear again. 

I have worked on appeals in the past and know that a decision is only right at the time it’s made sometimes a decision is over turned as info available was overlooked and sometimes as new info came to light, so it’s important for me to know why Ive made the decision at the time and not to in hind sight regret it. I have to know what I’m trying to achieve and it’s hard when no one knows how our bodies will react but we know what we most fear and what we most desire and which way our hearts if not our heads are pulling. 

I don’t know if reading https://pda.melanomafocus.com/stage-three/#117 the link I’ve just put in its stage 3 as that’s when most adjuvant treatment is considered. 

My experience of Pembro is that the side effects are very manageable but there is always a small percentage of people that have a bad reaction, you will never know if that will be you until you try it. You will never know if it is destined to return if you have adjuvant treatment but you will know that you have done everything possible if you start it. That fact that you have done everything might be very important not only to you but to a loved one. Adjuvant treatment is just one year, how important is that one year to you, that might depend on age, or the ages of your loved ones. How do you think that one year will affect your life as opposed to not having treatment. If you have Pembro every 6 weeks that’s 9 hospital visits, or 17 for 3 weekly treatment or they may start you on 3 weekly and switch you to 6 weekly when they know you can tolerate the double dose. The time for both the 3 weekly and 6 weekly is the same, approx 10 mins for cannula to be put in and water dripped through as they get the Pembro for you, 30 mins for the Pembro and another 10 mins for water dripped in after or flushed with a syringe if they are shorter on time. About 90 mins to 2 hours at most for me plus travel time, and these days my husband had to sit in the car or go for a walk as he couldn’t come in due to covid, and I always wanted him to drive the 45 minutes home, but I drove there. Luckily it’s never chucked it down with rain or been stormy like today. 

I had some cheesecake delivered yesterday to eat on Sunday when it’s my wedding anniversary, it’s been nagging me all day that we could eat it early. These decisions nag at you until the decision is made, and sometimes afterwards. We’ve just cracked and eaten it, we won’t regret the decision as we are spreading the calories over more days, and Sunday will still be special. It was a bit naughty though but we both agreed it would be good to eat it today for a cheer up. 

I hope you come to the right decision for you and are sure you can be happy with it. I thought of asking was it a suggestion or a recommendation by your dr to have adjuvant treatment and what is putting you off going for it. Some immunotherapy discussions on here involve ipilumamab and there’s a greater percentage change of worse effects with that in the mix. 

I hope my ramble has helped, you may have had lots of responses since I started it and paused for cheesecake !!!

KT

Thank you very much for your long and considered response.  It has really helped, especially the bit about loved ones expecting me to do everything I can to prevent reoccurrence. 

As you say I may have mild or no adverse reactions to the treatment. And, if the reaction is severe, I can stop.

Doctors plan to start me on three-weekly treatment moving to six-weekly if all goes well. I'm fortunate in living only a 15 minute drive from one of the leading cancer treatment centres (Southampton). 

So, to sum up, looks like I'll be going ahead.

Tony

Glad it helped

Hi , I am having prevented treatment for a mole I had removed back in the summer , everything came back ok with tests, but they suggested I have treatment every 6 weeks for a year as a just in case . Iv had 2 doses so far , with no serious side affects, there has been a couple of hiccups but nothing that would change my mind about having it . I looked at it this way , I'm only 49 and if I can better my chances of it not returning, I'm happy to go with it .My team have been amazing ,and they have watch me every step of the way, im sure yours will do the same . Good luck with whatever you decide, I just feel lucky to be offered this opportunity as it's not a cheap treatments,  and as my oncologist said to me " your worth it " ..

Hi, I've just had my 8th dose of Pembro.  Apart from increasing tiredness and occasionally a blip in a liver enzyme which rectifies itself within a week my treatment is going fine.

My oncologist has decided to leave her patients on 3 weekly as she's had a couple on 6 weekly sessions who have had more side effects and she just wants to be cautious.  I'm happy to be on 3 weekly.

Personally I know that melanoma is a crafty, slippery little blighter and if it has gone to lymph glands then chances are reasonably high it may have started a journey to elsewhere so it was a no brainer for me.  

So that's my reasoning, hope you can make a decision without too much grief.

Take care x