The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Update and itching!

Forums General Melanoma Community Update and itching!

  • Post
    Eileensulliv
    Participant

      I was diagnosed in January, in transit met in my back was removed in February. Mets in my lungs, bowel, and lymph nodes being treated with the ipi/nivo combo trial in March. I was only able to tolerate one dose of the two meds, and once my thyroid was normalized and I was weened off prednisone, treatments of just nivo resumed. CT scan in June showed shrinkage of just about everything, and scan in August only mentioned the mesenteric lymph node! CT scan last week shows the lung mets again, as well as the mesenteric nodes. The lung mets are unchanged in size from June, but are less conspicuous. Mesenteric nodes are unchanged. I questioned why the August scan report made no mention of the lung nodules, and I was told it's because the wrong scan was ordered, so the lungs weren't scanned. But apparently they scanned enough that the bottom of the lungs are in the scan, and the nodules are so small the radiologist didn't even see them. That answer just doesn't sit well with me, but I'm focusing on that unchanged means stable, and overall, I have a very good scan report!

      The biggest problem I've been having is that I have pretty bad reactions to the CT contrast, sometimes landing me in the hospital. We thought at first that it was a combination of the contrast and the nivo, since I was doing scans on the same day as treatments. But for the scan last week we decided to do it on the opposite week of my treatment, to see if I could tolerate just the ct contrast. It turns out I couldn't, so now we will have to make a decision on how to scan me from now on. The option we seem to be leaning towards is premedicating me with prednisone 24, 12, and 2 hours before my next scan. 

      With every adverse reaction came a delay in treatments. I just had my first treatment in a month (car broke down on my way to treatment two weeks ago) and I can't stop itching! I'm itching on most of my body, but especially my hands, arms, and torso. Has anybody experienced this, and if so, what worked for you? Thank you!!!

    Viewing 11 reply threads
    • Replies
        JuTMSY4
        Participant

          Hi Eileen – Sorry about the side effects.  The good news is your Tcells are working.  Perhaps to overzealously.  

          I'm just on Keytruda (Pembro) but I experience significant dryness/itching on my hands, feet and some patches of my body (weird places like my wrist or ankle).  I use Eucerin Intensive repair hand cream for my hands and feet.  I was already predisposed to dry hands and this is my preferred one.  Others use some type of oatmeal based calamine lotion.  

          For other areas (and my hands too), I use ammonium lactate.  It's not particularly fun to use (smells) but it smooths rough spots and calms down itching.  DO NOT USE it if you have any cuts or knicks or raw areas – it will burn and be very uncomfortable.  

          Don't worry.  Itchiness is a common side effect.  

          JuTMSY4
          Participant

            Hi Eileen – Sorry about the side effects.  The good news is your Tcells are working.  Perhaps to overzealously.  

            I'm just on Keytruda (Pembro) but I experience significant dryness/itching on my hands, feet and some patches of my body (weird places like my wrist or ankle).  I use Eucerin Intensive repair hand cream for my hands and feet.  I was already predisposed to dry hands and this is my preferred one.  Others use some type of oatmeal based calamine lotion.  

            For other areas (and my hands too), I use ammonium lactate.  It's not particularly fun to use (smells) but it smooths rough spots and calms down itching.  DO NOT USE it if you have any cuts or knicks or raw areas – it will burn and be very uncomfortable.  

            Don't worry.  Itchiness is a common side effect.  

            JuTMSY4
            Participant

              Hi Eileen – Sorry about the side effects.  The good news is your Tcells are working.  Perhaps to overzealously.  

              I'm just on Keytruda (Pembro) but I experience significant dryness/itching on my hands, feet and some patches of my body (weird places like my wrist or ankle).  I use Eucerin Intensive repair hand cream for my hands and feet.  I was already predisposed to dry hands and this is my preferred one.  Others use some type of oatmeal based calamine lotion.  

              For other areas (and my hands too), I use ammonium lactate.  It's not particularly fun to use (smells) but it smooths rough spots and calms down itching.  DO NOT USE it if you have any cuts or knicks or raw areas – it will burn and be very uncomfortable.  

              Don't worry.  Itchiness is a common side effect.  

                AnitaLoree
                Participant

                  Eileen: My husband's on Keytruda X 1 yr & itching from the get-go, about a 5 (1-10 scale) trunk, arms & legs. Sorry, it seems to go with the treatment. Uses an oatmeal lotion on back with not that much reduction.  Just lives with it and glad Keytruda holding tumor in check. Sorry about your allergic reaction to contrast dye and hope that problem can be resolved.  Best wishes. A.L.

                  AnitaLoree
                  Participant

                    Eileen: My husband's on Keytruda X 1 yr & itching from the get-go, about a 5 (1-10 scale) trunk, arms & legs. Sorry, it seems to go with the treatment. Uses an oatmeal lotion on back with not that much reduction.  Just lives with it and glad Keytruda holding tumor in check. Sorry about your allergic reaction to contrast dye and hope that problem can be resolved.  Best wishes. A.L.

                    thlavallee
                    Participant

                      I read on this site about the use of benedryl.  Called my cancer treatment team for an ok for its use .  Got an OK.  Tried it .  Worked great!  Major reduction in the torment of the itch.  Best wishes

                      AnitaLoree
                      Participant

                        Eileen: My husband's on Keytruda X 1 yr & itching from the get-go, about a 5 (1-10 scale) trunk, arms & legs. Sorry, it seems to go with the treatment. Uses an oatmeal lotion on back with not that much reduction.  Just lives with it and glad Keytruda holding tumor in check. Sorry about your allergic reaction to contrast dye and hope that problem can be resolved.  Best wishes. A.L.

                      geriakt
                      Participant

                        Eileen,

                        Sorry to hear about all of you side effects. I am on Opdivo as well and I did get a minor rash after one infusion.  It lasted two days and went away.  I have developed joint pain in my back and fingers.  I took Percocets for it. 

                        I have never had a reaction to contrast from my CT's, MRI's or PET. Do you have an allergic reaction to Shellfish? if so you may be allergic to iodine.

                        Tom

                        geriakt
                        Participant

                          Eileen,

                          Sorry to hear about all of you side effects. I am on Opdivo as well and I did get a minor rash after one infusion.  It lasted two days and went away.  I have developed joint pain in my back and fingers.  I took Percocets for it. 

                          I have never had a reaction to contrast from my CT's, MRI's or PET. Do you have an allergic reaction to Shellfish? if so you may be allergic to iodine.

                          Tom

                            tschmith
                            Participant

                              Hi Eileen!

                              When I was on Keytruda, I experienced a rash and itching.  I used a lotion called Sarna…got it at CVS and Benadryl.  It really helped.  

                              Wishing you the best!

                              Terrie

                              tschmith
                              Participant

                                Hi Eileen!

                                When I was on Keytruda, I experienced a rash and itching.  I used a lotion called Sarna…got it at CVS and Benadryl.  It really helped.  

                                Wishing you the best!

                                Terrie

                                tschmith
                                Participant

                                  Hi Eileen!

                                  When I was on Keytruda, I experienced a rash and itching.  I used a lotion called Sarna…got it at CVS and Benadryl.  It really helped.  

                                  Wishing you the best!

                                  Terrie

                                  Eileensulliv
                                  Participant

                                    Thank you all! All things considered, my sideffects have been pretty easy to deal with. The worst was the diarrhea, but even that has decreased quite a bit. I'm very lucky! I will try these suggestions… Thank you all so much!

                                    Eileensulliv
                                    Participant

                                      Thank you all! All things considered, my sideffects have been pretty easy to deal with. The worst was the diarrhea, but even that has decreased quite a bit. I'm very lucky! I will try these suggestions… Thank you all so much!

                                      Eileensulliv
                                      Participant

                                        Thank you all! All things considered, my sideffects have been pretty easy to deal with. The worst was the diarrhea, but even that has decreased quite a bit. I'm very lucky! I will try these suggestions… Thank you all so much!

                                        thlavallee
                                        Participant

                                          Can't thank you enough!  The reduction of the torment ot the itch with the use of benadryl WOW! 

                                        geriakt
                                        Participant

                                          Eileen,

                                          Sorry to hear about all of you side effects. I am on Opdivo as well and I did get a minor rash after one infusion.  It lasted two days and went away.  I have developed joint pain in my back and fingers.  I took Percocets for it. 

                                          I have never had a reaction to contrast from my CT's, MRI's or PET. Do you have an allergic reaction to Shellfish? if so you may be allergic to iodine.

                                          Tom

                                          Patina
                                          Participant
                                            This might be a stange question, but have the doctor’s mentioned anything about how hydrated you are when you get scanned?

                                            I ask this because hydration can play a role in how your body reactions to the contrast.

                                            There are also different contrasts, as I understand it, that can be used. Have you asked if others could be used?

                                            Patina
                                            Participant
                                              This might be a stange question, but have the doctor’s mentioned anything about how hydrated you are when you get scanned?

                                              I ask this because hydration can play a role in how your body reactions to the contrast.

                                              There are also different contrasts, as I understand it, that can be used. Have you asked if others could be used?

                                              Patina
                                              Participant
                                                This might be a stange question, but have the doctor’s mentioned anything about how hydrated you are when you get scanned?

                                                I ask this because hydration can play a role in how your body reactions to the contrast.

                                                There are also different contrasts, as I understand it, that can be used. Have you asked if others could be used?

                                                AshleyS
                                                Participant

                                                  Hi Eileen. I haven't been on the board in awhile and just saw your post. Poopy. Ugh…. I wanted to only hear good news from you (I'm sure you also wanted to give good news). I'm not any help concerning your CT issue, but I hope you get it figured out.

                                                  Xoxo

                                                  Ashley

                                                  AshleyS
                                                  Participant

                                                    Hi Eileen. I haven't been on the board in awhile and just saw your post. Poopy. Ugh…. I wanted to only hear good news from you (I'm sure you also wanted to give good news). I'm not any help concerning your CT issue, but I hope you get it figured out.

                                                    Xoxo

                                                    Ashley

                                                    AshleyS
                                                    Participant

                                                      Hi Eileen. I haven't been on the board in awhile and just saw your post. Poopy. Ugh…. I wanted to only hear good news from you (I'm sure you also wanted to give good news). I'm not any help concerning your CT issue, but I hope you get it figured out.

                                                      Xoxo

                                                      Ashley

                                                  Viewing 11 reply threads
                                                  • You must be logged in to reply to this topic.
                                                  About the MRF Patient Forum

                                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.