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About to begin Keytruda–EXPERIENCES???
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About to begin Keytruda–EXPERIENCES???

› Forums › General Melanoma Community › About to begin Keytruda–EXPERIENCES???

  • Post
    • February 21, 2018 at 5:07 pm
    ktode10910
    Participant

      Hello all,

      Here is my story in a nutshell.  I am a 35 yo female, first diagnosed with Stage III B melanoma in 2008.  The original site had metastisized to my sentinel lymph node and I had further lymp node removals that were clear. Then they recommended and I did a year of Interferon A–one month via port daily and then three times a week self administered.  Additionally, I had two other new diagnosises of melanoma Stage I that were removed and clear in 2009 and 2011.  

      Fast forward to a few weeks ago–I had been having lower back lumbar pain for a while and finally went to see a spine Dr. and he ordered an MRI.  The MRI came back showing numerous, diffuse enlarged lymph nodes in my retroperitineal, pelvis, and lumbar area.  Given my history, my doctor sent me for a PET scan immediately which came back with diffuse long distant involved lymph nodes–from my left leg, through my back near my spine, up into my chest, under my clavicle and into my left armpit.  Biopsies were done and are positive for metastatic melanoma, considered a recurrence of my original Stage III diagnosis ten years ago.  Due to the large lymph involvment, placement, and amount I have been told surgery is not an option.  So far, my major organs are CLEAR (lungs, brain, liver all look fine) and my spine and bones are also ok.  I do have one possible tumor that may have to be removed depending on what a surgeon says, that is near my upper back.  It is unknown how/if that is involved in the lymph node recurrence. 

      So based on this, my oncologist is starting me on Keytruda given via port every three weeks.  I am still waiting for my insurance to approve my first treatment, but hopefully it will be in the next week or so.  

      So, tell me everything about Keytruda.  My oncologist promies me it will NOT be as bad as the Interferon A–that about killed me. I had every side effect possible when I was on that, including three hospitalizations for complicatoins.  He says people overall do very well and to look for "itis" symptoms (pneumonitis, pancreititis, gastritis, dermatitis, etc). 

      So give me the good, bad and ugly about Keytruda.  I know everyone reacts differently, but I had no idea what to expect last time and I really would love to know more this time.  I have a two year old son and husband, which is different from ten years ago and I am hoping I can still function to work and be a mom. 

      Thanks 🙂 

    Viewing 5 reply threads
    • Replies
        • February 21, 2018 at 6:45 pm
        Patrisa
        Participant

          Dear keyode10910,

          so sorry you have progressed to stage IV, but  ! You have come to the right place for advice and most important, things have changed since 10 years ago sooo much….

          My father has also been, after his stage III diagnosis, on interferon for a whole year and it was BRUTAL! he felt so bad the first month,  the rest of the year was better, but oh he felt it as well…

          After he progressed to stage IV three years later, he was put on keytruda and has been on it ever since ( 2 years and counting)…. No major side effects except some vitiligo ( minor) on his face and just recently he developed some thyroid issues ( wouldn't know he has them but his blood work says so), so keytruda has been for him nothing but a blessing! He is currently NED, we hope he stays that way forever!

          He works, goes hiking, does everything without any problems, just like before….

          I hope keytruda will be just as kind to you and you will kick mels a… !!!

          Take care,

          Patrisa

            • February 22, 2018 at 7:01 pm
            ktode10910
            Participant

              Thank you so much for replying!  It is so good to hear positive reports.  I am praying, hoping, and dreaming this is indeed the treatment to keep me alive for my two year old and cancer free in the fututre. 

              Thanks again 🙂 

            • February 22, 2018 at 4:09 am
            Prd10
            Participant

              Hi,

              Sorry you are dealing with this.  I had to respond bc I've done interferon and keytruda and I didn't believe my oncologist when he told me keytruda was really tolerable.  I think it's very true that everyone responds differently and certainly people have serious side effects, but it is not in any way like interferon where a few hours after infusion you feel awful.  I was tired the day of and a little bit the day after.  My son was 5 when I took keytruda and I was able to care for him no problem, although 2 year olds are more exhausting!  I'm on my 4th treatment since becoming stage 4 and none of them have been even remotely as difficult as interferon.  I know when I started Taf/mek someone on here recommended lots and lots of water and some excercise and I actually think that's really good advice for keytruda too.  Good luck

              Caitlin 

                • February 22, 2018 at 4:28 am
                Prd10
                Participant

                  I want to add one more thing since I didn't notice this until after I responded.  I see that you are in the Chicago area.  If it's possible I would highly recommend that you seek out the opinion of a dr that specializes in melanoma.  I'm partial to Dr. Luke at University of Chicago bc he's my Dr, but there are certainly others. 

                  • February 22, 2018 at 5:48 pm
                  ktode10910
                  Participant

                    Thank you for the reply!  I am in the Chicago area, and I am looking into a seocnd opinion.  Currently. I am happy with the oncologist I have and want to start treatment, so I am not rushing it but I definitely want to get involved with a larger system (I am a Northwestern Medicine patient in the Western Suburbs right now) just to be sure I have all my options covered.  I used to see a Dr. Kauffman at Rush, but he has been long gone so I will look into Dr. Luke.  Thank you for replying!  

                  • February 22, 2018 at 1:59 pm
                  TexMelanomex
                  Participant

                    Hi KT!

                    I have been on Keytruda for about 5 months now with great results (50% reduction in lymph node tumor size). Similarly, all of my metastic disease has been lymph nodes and organs so far are clear. I tolerate Keytruda extrememly well and really don't notice much in the way of side effects any longer, maybe a litle fatigue for a few days following infusion but otherwise nothing that keeps me from work or the things I enjoy. I was previously taking it in combination with an experimental intralesional and noticed side effects much more on the combo, but now that its just Keytruda I hardly notice the treatments. I'm curious about the use of a port for this and unless you are really adverse to needles or there is another reason, the port might be more trouble than its worth as the the treatments are only every 3 weeks (something to think about ayway). 

                    I've never had Interferon but I've heard, and read here, that its brutal. I think you'll find the Keytruda to be quite mild in comparison and my hope is you really don't experience any signficant side effects. 

                      • February 23, 2018 at 4:04 pm
                      ktode10910
                      Participant

                        Thank you so much for your reply!  This is great information and I did question my port–it was decided to do it though because I have so much scar tissue from having to access veins for Interferon 10 years ago.  It has been bothering me, but I hope it settles in and works well.  If you would keep me updated on how you progress, I'd really appreciate it. Anything I can know or anything that works for you tips/tricks, etc is all super helpful!

                        • February 23, 2018 at 5:38 pm
                        ed williams
                        Participant

                          I did interferon back in 2012 and going into Immunotherapy trial of ipi or ipi+Nivo or Nivo, was expecting the same shitty reaction. Four years later I can tell you that I have been able to go to all my appointments by myself and very mild side effects of being itchy(mild rash) and fatigue which has been a bigger issue but nothing compared to Interferon. I put on about 20lbs before the trial started, thinking that I would be so sick again that I might need some stored up fuel, turns out I have not missed a meal over the last 4 years and still have all those pounds plus one or two more. My trial was unbliinded a few months back and it turns out that I have been on Nivo which is the other Pd-1 drug very similiar to Pembro(Keytruda)!!! Best Wishes on your journey!!!Ed

                        • February 24, 2018 at 1:28 am
                        CancerSpouse
                        Participant

                          Hi there, my husband has been on Keytruda since last October and tolerates it fairly well, although for most of the time he had also been on a intratumoral med that produced greater side effects. As such, his experience solely on Keytruda is limited. Regardless, from what I've heard from patients who have experience with both, Keytruda is a cake walk compared to Interferon. John's side effects are 24-48 hours of a woozy, almost hangover feeling, but without pain. A little foggy headedness as well. His worst side effect is oral ulcers, for which he uses "magic mouthwash," but my undrerstanding is that is a rare side effect. Best of luck with what should be an easier treatment, ~ Carol 

                          • February 25, 2018 at 7:32 am
                          Scooby123
                          Participant
                            Hi, I have had 10 treatments of Keydruda. The only issue I have had is after treatment more bowle issues but once took medication am fine. I still work and swim as much has I can. I did have IPI prior to Keydruda and tolerated that well too.
                            Hope all goes well for you ,
                            Scooby
                              • June 3, 2018 at 9:04 pm
                              1badhg
                              Participant

                                I have been on Keytruda since July of last year, had 13 infusions.  On about the 10 th infusion, I started to have swelling in my hands, thought I had broken one.  Doc, said it was a side effect of drug and they have calmed down quite a bit.  Had CT scan in Nov. and all the melanoma is gone.  Was going to continue treatments unti July, 3 more and then last week had a reaction to treatment in lungs.  Went to emergency room and they diagnoised with Pneumonia, spent 3 days in hospital with massive IV antibodies.  Turns out it is not that but Pneumonitis caused by treatment.  At home on oxygen and have appointment on WED.  Doc said that it is a reaction to drug.  Up until this point I did not have respect for how powerful the drug was, because side effects were minimal.  Got my fingers crossed and hope the treatment for the pneumonitis brings everything to normal.  

                              • June 4, 2018 at 12:04 am
                              Edwin
                              Participant

                                I received 6 infusions of Keytruda beginning on Novermber 24, 2015.   I was tired for a couple days after each infusion, but I was able to continue working.   My cancer spread to many more bones, while I received this immunotherapy;  so my oncologist switched me to Yervoy/Opdivo combo treatment.  That worked better for me.  If one treatment does not help you, another treatment may work better.  My oncologist started treating me with Keytruda, because it has fewer and less severe side effects than the Yervoy/Opdivo combo treatment has.

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