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Kristi A.

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      Kristi A.
      Participant

        Hi. Glad to hear your not experiencing any big side effects. For every one of my Keytruda infusions I always had bloodwork done and met with my oncologist before the infusion.  I think they do this so they can keep a good eye on you and to make sure your able to proceed with the next infusion. My first couple keytruda treatments i did fine but by the fourth or fifth one I was experiencing severe joint pain. After that my oncologist cancelled my treatment for that day and we took a break. Unfortunately I developed Lupus from the Keytruda (which is very rare I believe) and I was unable to continue.  The good news is that I am currently showing NED. In my opinion, I believe they should be doing bloodwork prior to each infusion to keep an eye on liver counts, inflammation,  kidney funtions, etc. If they only do it every six weeks they may miss catching a problem while it's still early. I would definitely consider asking for a blood test every three weeks before each treatment. This way, if they see something worrisome they can address it right away. 

        Kristi A.
        Participant

          Thank you both for your advice.  I contacted my oncologist and I'm just waiting to hear back. Hoping it's nothing worrisome. 

          Kristi A.
          Participant

            Hi Scooby. I was on Keytruda for a total of 8 infusions. I'm no longer on it due to side effects and scans showing Ned. At first I was a little fatigued starting after the 1st infusion. Also had some nausea but nothing too bad. Then after about the third dose I developed joint pain. After the 5th dose I was in so much pain in my joints that we stopped keytruda and had me see a rheumatologist.  Found out I developed inflammatory arthritis from the Keytruda so i was put on prednisone and plaquenil.  Stayed on both meds and restarted keytruda a month and a half later. Did three more doses and stopped because scans show ned.  Hope all goes well with your second infusion.

            Kristi A.
            Participant

              Thank you! Not sure what's going on but if it doesn't go away or get better soon, I will most likely be contacting my doctor. 

              Kristi A.
              Participant

                Oh yeah! I'm on Keytruda now (well technically on hold right now for drug-induced Lupus) and I noticed about a month in that my time of the month symptoms got noticeably worse. I usually break out a little on my face but now it's everywhere! Even my scalp has tons of zits and my chest…just covered in 'em. Sorry if this is TMI but when I ovulate halfway through the month it is so painful and that never happened before. I actually went to my PCP thinking i had a bladder infection or something but it turned out to be no infection…just really bad ovulation pains. My doctor said that while he doesn't know a lot about the treatment I'm on, he does agree that it could mess with my body in many different ways.  I definitely agree with him because I have had way to many weird side effects happen from the different treatments I've been on  It's so funny you brought this up because just yesterday I was complaining to my husband about how bad my period symptoms have gotten and the only thing that I can connect to it timing wise is the Keytruda. I hope it gets better for you. And don't worry…I'm right there with ya in the period doing weird things department! Lol   

                Kristi A.
                Participant

                  Mine was like that from when I was in the hospital telling the nurse my IV was leaking. She finally got me a new IV but I was left with a very hard vein like yours. It also was very bruised and painful. I showed it to my oncology nurse and she said it happens from time to time and to only be worried if it showed signs of an infection. So unless it's hot to the touch or red I wouldn't worry too much about it. Mine is just now finally going back to normal and it's been almost 2 months. Hope yours gets better too.

                  Kristi A.
                  Participant

                    Mine was like that from when I was in the hospital telling the nurse my IV was leaking. She finally got me a new IV but I was left with a very hard vein like yours. It also was very bruised and painful. I showed it to my oncology nurse and she said it happens from time to time and to only be worried if it showed signs of an infection. So unless it's hot to the touch or red I wouldn't worry too much about it. Mine is just now finally going back to normal and it's been almost 2 months. Hope yours gets better too.

                    Kristi A.
                    Participant

                      Mine was like that from when I was in the hospital telling the nurse my IV was leaking. She finally got me a new IV but I was left with a very hard vein like yours. It also was very bruised and painful. I showed it to my oncology nurse and she said it happens from time to time and to only be worried if it showed signs of an infection. So unless it's hot to the touch or red I wouldn't worry too much about it. Mine is just now finally going back to normal and it's been almost 2 months. Hope yours gets better too.

                      Kristi A.
                      Participant

                        Hello! I don't want to freak you out or anything but the side effects for me were terrible. I only lasted nine days on the combo. I felt fine the first few days…just some nausea.  By the 6th day I was experiencing high fevers/chills, joint pain, severe rash, headaches, swelling in hand/feet, fast heart rate (tachycardia…which still hasn't resolved), inside of mouth and lips sore to the point that I couldn't eat. On the ninth day I collapsed at home in front of my ten year old daughter. I was hospitalized for three days to try to get the side effects under control. Oncologist told me I had a bad reaction to the meds and he took me off them. I know that everyone responds differently so I hope the side effects are manageable for your husband and it doesn't hit him too hard. And of course…i hope he has an amazing reponse! If he starts having bad side effects, don't be afraid to call your oncologist. 

                          Kristi A.
                          Participant

                            Totally forgot to mention the good part…it shrunk a couple of my lung tumors and kept my axillary node stable. So even after only nine days I had a response. 

                            Kristi A.
                            Participant

                              Totally forgot to mention the good part…it shrunk a couple of my lung tumors and kept my axillary node stable. So even after only nine days I had a response. 

                              Kristi A.
                              Participant

                                Totally forgot to mention the good part…it shrunk a couple of my lung tumors and kept my axillary node stable. So even after only nine days I had a response. 

                              Kristi A.
                              Participant

                                Hello! I don't want to freak you out or anything but the side effects for me were terrible. I only lasted nine days on the combo. I felt fine the first few days…just some nausea.  By the 6th day I was experiencing high fevers/chills, joint pain, severe rash, headaches, swelling in hand/feet, fast heart rate (tachycardia…which still hasn't resolved), inside of mouth and lips sore to the point that I couldn't eat. On the ninth day I collapsed at home in front of my ten year old daughter. I was hospitalized for three days to try to get the side effects under control. Oncologist told me I had a bad reaction to the meds and he took me off them. I know that everyone responds differently so I hope the side effects are manageable for your husband and it doesn't hit him too hard. And of course…i hope he has an amazing reponse! If he starts having bad side effects, don't be afraid to call your oncologist. 

                                Kristi A.
                                Participant

                                  I sent a message this morning and the nurse wrote back asking about nausea and if I've taken anything for the headaches.  I replied back right away but that was 5 hours ago and I've heard nothing since. Starting to feel like I'm not being taken seriously or maybe they are just really busy. Thank you for your reply. I will definitely bring that up to them. 

                                  Kristi A.
                                  Participant

                                    Thanks so much. Hoping it's not melanoma related too.

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