Pembrolizumab choice to make - grey area

I am currently on pembro I think it’s entirely a personal choice. Like you I was given the choice of monitoring for a year or pembro 9 doses every 6 weeks for a year. I had tiny traces of melanoma in 2 tiny nodes at my ear ( all removed successfully).  Staged at 3a.

I am also a fit and healthy female, I am 41 but I felt I couldn’t carry on with the worrying what it ? To be honest I had terrified myself with over googling and over checking forums.

So far so good on pembro I have had 3 doses and anothet clear ct scan just a fortnight so that’s given me a great boost x 

good luck x 

Hi JerryD…my first appt with oncology is in Dec where I will be given the choice of adjuvant treatment or scans and watch and wait….mine is classed as a 3A with melanoma in 1 lymph node now removed…..for me it’s got be to the Pembro as I could not bear the thought of not knowing or the whole thing reappearing elsewhere….I just want to give myself and my family the best chance…I have been reviewing others post who have been on Pembro and I feel as positive as I could be about the unknown….if that makes sense….whatever decision you make has to be right for you and your circumstances….take care x

Hi JerryD, I don’t think a second opinion would tell you anything different the choice is yours to make. 

A few years ago there was no adjuvant treatment and some people felt horrified at the thought of just watch and wait because other cancers had adjuvant treatment. You have the choice, so which do you fear most, side effects and extra appointments for one year which you might not have needed or not having adjuvant treatment and it returning and then needing Pembro for probably 2 years or having surgery again then Pembro. What do your family think or are they just listening to how you spin the risks and nodding, will they secretly not like it if you haven’t done all you can. 

I have no opinion either way for you just that Ive had to make choices along my journey. I was clear at 6 months on Pembro and was given a choice of stopping at one year instead of doing the usual 2 years. I’d had 21 months of treatment as Id been on tablets before that, and I so wanted a break and was so positive I would remain clear but it came back in one node after a year and treatment started all over again. I firmly believe a decision is only right at the time you make it so I don’t beat myself up about a decision, and my oncologist says it migh5 have returned even on treatment. My melanoma was in many nodes that could not be resected when I was diagnosed so my case is nothing like yours but I know what it’s like having to make the choice yourself. For me I talk myself through both options pretending that’s the one I want, then I talk it through with my husband and then a friend I do the decision to death, and sometimes it comes down to a coin toss you always know if your heart wanted a different decision, it’s just sometimes the head and the heart want different things. 

Good luck with your choice. Oh and sometimes the specialist nurses have been great to listen and not advise but reflect back what you’ve said. 

9 extra treatment visits, 6 extra dr appointments with unknown side effects and impact on work? to prevent a recurrence if you had side effects you could stop earlier, some side effects are long term and might have not been necessary, what bothers you the most? . Do you have an attitude to insurance policies on house buildings and contents or car insurance, is the same feeling there for your health? 

Let us know what you decide and why. 

Thank you - some really interesting points you make here. Especially the one about insurance- I only insure the essentials like house and car and health (but not using it so far) and take a risk on the other things. I think what bothers me the most is doing some long term damage that isn't necessary but without the crystal ball it's all a big gamble.  And I have only discussed it with my partner and haven't told my kids or parents - just want a 'normal' life and for them not to worry unnecessarily. 

I really appreciate your thoughts and sharing a little of your experience - you sound like a very centered person and I wish you well. I will update here with a decision - never great at any decision anyway....

Hello

thanks for replying - and best of luck with the rest of your treatment.  It's good to hear a positive story - and there are so many.  It's just difficult having to make a choice which could save you or harm you either way! It feels like Russian Roulette- not that I ever played that....

Thanks - you have a very strong view of what's best which I admire.  I think we have a similar condition so it's really helpful.  I think I'm so conflicted because the doctor was so relaxed about me deciding either way and up to now the doctors have gently pushed me into decisions.  I'm very grateful that the treatment is available but just need to overcome the worries about side effects.  Many thanks again and best of luck.

Best wishes , you do what is right for you. Xx 

Hi,

This has been really useful to read. Its not myself but my husband making this exact same choice with having stage 3A and spread to a lymph node but with a multi focal pattern putting him at the further end of 3A. The oncologist today was very matter of fact discussing side effects vs treatment with a lower chance of being helpful being stage 3A but husband has decided to opt for treatment as we feel 15% extra chance of no recurrence is better than nothing with side effects that you may or may not get as he is only 34 and just wants t9 do everything he can to keep this away. Its so so difficult and such a stressful time and I feel at times who knows what's the right thing to do. 

I’m starting pembrolizumab tomorrow- first dose. My melanoma is staged at 3b as it’s gone to one lymph node which was removed. It’s confusing as doctors have been so reassuring that everything has been removed but reading between the lines they can’t guarantee that some absolutely microscopic bit might be lurking so reluctantly but also gratefully I’m getting the treatment. It is unsettling to think about maybe upsetting the balance of my generally well behaved body but am hoping it’ll be ok. Will let you know 

Hello - thank you so much for your reply.

Good luck today - a very big day for you.  I'm in the very same position as you and we've both made the right decision for us.  Sadly it seems like all a bit of roulette at times.

Take care and treat yourself tonight.