Pembrolizumab (keytruda) Has anyone any experience of this please

Are you still on this treatment and if so how is it going. My mom is on it but she is really unwell at the moment 

The PEMBRO itself is not producing any side effects for me.  Having said that I'm not sure if it is doing any good either.  Since my post, the PEMBRO had continued.  The one thing it did do between the 3rd and 4th treatments is to produce a huge flush of new small tumors on my arm.

We decided to add a 2nd treatment, direct tumor injections of interluken 2.  Now this is both painful to have and also produces the strangest side effects.  It makes me feel for about 24 hours as if I have a violent flu.  Chills, shaking, double vision etc.  Odd but then again it goes away.

We've added a3rd treatment, a lotion called Zyclara.  A lotion, oddly, for treating warts!  This is applied to the tumors 5 of every 7 days.  Now this does seem to be working, not on all the tumors but the two biggest and about 4 or 5 of the smaller ones.  A very slow acting treatment that takes about 12 weeks, I'm just starting week 6.

But a PET scan showed that there are some tumors around my emblow that I can't find.  So no IL2 injections or lotion for these guys can help.

We're discussing something called "Isolated Limb Infusion" where they cut off the blood flow to my arm and give me a chemo for an hour that would kill me if they gave to my whole body.  An hour later they reconnect the blood flow and then that might get everything including the deep, hidden ones.

Not sure if this helps but tell your mom to hang in there and I'm thinking of her!

Hello ccj

Sorry to say but my mum passed away in May 2017. She had Pembro for 3 infusions and it didn’t work for her.. in fact it seemed to make her worse and accelerate the cancer. 

I hope it works for your husband.

Pepper x

Hi

I have had 3 infusions and no side effects to speak of. I don' know if it' helping yet until around the middle of April after a scan. Keeping everything crossed as my chemo failed to slow the growth down. Hope all goes well xx

Hi pepper66

My hubby has just had 4th keytruda . So far so good. Minimal side effects to report. Sore mouth on 2nd one.  He's walking  good distances and eating well. Can't ask for more after his experience with chemo! !! Ctscan showed reduction.

Hope all goes well. Keep me posted 

Hi Wendy been following chat and think u should know I am a first line pembroluzamab patient had 13 cycles with good results nhs has adopted treatment for those who qualify for nsc lung cancer hope this helps good luck Clem1 

Hi Wendy, I have had 11 infusions now and feeling really good...a sore mouth, bit of itchy skin at first but gone by third...good quality of life and worlds away from chemo....hair has grown back thick and curly..hope it works for you..it has been a miracle drug for me...best wishes...

Hi lettuce

Glad to see your still doing so well. I'm due for my 4th pembrolizumab next week and you were right about the difference from chemo side effects. I don't really get any bad ones. Just a bit tired but feel like I'm doing ok. I'm just praying for a good result once I've had a CT scan on the 4th April. I won't know until I see the doctor about 17th so a little anxious til then. Hope the bulbs are coming up xxx

Vicky x

Hi Vicky, the bulbs are certainly coming up and I feel truly blessed...there is nothing like a stage 4 terminal condition to really make you appreciate life in all its glory...sometimes with pembro. the first scan shows enlargement because the drug is swelling the cells but by the second they will really be able to tell what's happening...I have it in 4 places, on first scan 2 looked bigger and 2 slightly smaller...on second scan 2 were stable and 2 had shrunk a bit more...going for my third scan next week...it is a worry waiting to see what's happening but Spring is in the air and time to start thinking about booking a holiday....I have been really careful with money all my life but now its spend spend spend!.....think lucky and live each day that's my motto...sending you my prayers and best wishes......and a little hug to ease the anxiety..x....

Hi lettuce

Your positivity and attitude really gives me hope and I will try to stay as positive as I now feel. You are my inspiration as well as my lovely family who are great but speaking to you helps so much as you know exactly how this feels x hope your scan shows even more shrinkage xxxx