LHiner50

After three Keytruda treatments I  had a severe rash on legs and arms which was cleared up with prednisone.  About six weeks later vitiligo started on legs and arms also.  Treatment was stopped and the last three scans have been stable.  I had nivo/Yervoy previously and had two reactions.  I respond well to immunotherapy but it "overstimulates" my immune system.  It seems the vitiligo issue is a good sign that the Keytruda continues to work – let's hope.  Hope your rash clears up and can continue with treatment,

Thank you Celeste.  You provide such useful information.  I read posts every day but have only posted a couple of times with my medication reactions and helpful remedies.  This is the best forum for our disease

Hello Keytruda peep –  I've had three Keytruda treatments and won't be having any more.  Have a pretty bad case of eczema on legs, arms and back due to the treatment.  By the recommendation of the dermatologist I have been using CeraVe exzema body wash followed by CeraVe moisturizing lotion.  This seems to keep the itching tolerable.  A friend gave me an aloe plant.  Going to try the gel from that.  Also have elevated pancreas levels.  My oncologist wants me to start on steroids for both issues – been there done that before.  If labs are not better next week, I'll have to give in and start.  Glad you were able to stay on Keytruda so long.  Hope you can find a cure for the ichies.

I have had wonderful treatment with Kaiser (Maryland).  When my melanona reared it's ugly head ten years after the initial diagnosis, there was no immunotherapy available for my stage.  My oncologist sent me to Johns Hopkins for a clinical trial.  Kaiser and JH coordinated everything.  I have had nothing but good experiences with Kaiser – they haven't cut any corners and continue to monitor me every three months while things are stable.  If I need anything, she is always eager to help.  Sorry you are having to wait for results.  We all have the waiting game.  Good luck 

Hi Scooby  I had the same side effects as Julie's husband – Severe rash and viitiligo.  I only had three Keytruda treatments but the rash began immediately.  Prednisone took care of that.  Five months later I started with vitiligo.  My last two scans have been stable.  No other side effects for me.  I was on Ipi/nivo

previously and had to stop because of pancreas and thyroid issues that were resolved with meds

Good luck with treatment

When I noticed enlarged lymph glands in the groin, I did not have any pain either.  Until it was confirmed I thought I had pulled something at the gym.  This occurred 10 years after my original diagnosis on the thigh.

I agree with the above responses.  I did a year of Interferon before I qualified for immunotherapy. No change in tumors and I was miserable for a year.  Have done ipi/nivo in 2015 and Keytruda this year.  Doing fine so far. Interferon would be last choice.  Good luck with treatment 

Another option is CeraVe Eczema Soothing Body Wash and Mosturizing Lotion.  I had pretty bad eczema on legs and arms after Keytruda.  The CeraVe kept the itchies away for the most part.   Still had to take prednisoe to stop it from spreading.

I was on Opdivo/ipi trial and had 7 treatments before discontinuing because of pancreas and thyroid issues.  I just had some belly pain and prednisone resolved that quickly.  Labs showed thyroid issue – now on Synthroid with no problem.  Had three treatments of Keytruda this year and had to "take a break" due to rash which prednisone resolved also.  In both cases my doc feels the treatments worked (tumors reduced in size).  Having a scan next week and if there are any changes, I hope to go back on Keytruda.  No other side effects.  Best of luck to you

I had three treatments – no nausea or fatigue but have a bad case of ecxema and lipase and amylase elevation (pancreas).  Holding future treatment until these issues can be resolved.  Hang in there with the treatments if you can.  Five treatments and no side effects is encouraging.  

Hello Anon

I was on the ipi/nivo trial and made it through the four combo does and three of the nivo before I had pancreas and thyroid issues.  Was on steroids for three months.  Stopped treatment but did have a delayed response which lasted for eight months.  I'm now on Keytruda but starting again with pancreas issues and a rash (which I just had biopsied yesterday).  Will probably have to stop treatment until these two things are resolved.  I'm finding out that everyone responds so differently to immunotherapy.  Thanks for the videos Ed.  They were very informative.