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.

Day 5… home from round 2 of IL2

Forums General Melanoma Community Day 5… home from round 2 of IL2

  • Post
    carol b
    Participant

      OK. ive been home for 5 days. I am still miserable. I am having so much swelling. Itching is driving me insane. My eyelids are gonna peel off. I have huge whelps all over my back. I am using the Derma Sarra lotion from the hospital. petro jelly for my eyelids. Benadryl for the itching. I have no clue what to do about the swelling. I take Aveeno baths daily. No one from the hospital warned me about the symptoms lasting so long. Im not even got enough time to heal before i hit round 3. My eyeballs feel like they are on fire and r gonna fall out of their sockets.

      OK. ive been home for 5 days. I am still miserable. I am having so much swelling. Itching is driving me insane. My eyelids are gonna peel off. I have huge whelps all over my back. I am using the Derma Sarra lotion from the hospital. petro jelly for my eyelids. Benadryl for the itching. I have no clue what to do about the swelling. I take Aveeno baths daily. No one from the hospital warned me about the symptoms lasting so long. Im not even got enough time to heal before i hit round 3. My eyeballs feel like they are on fire and r gonna fall out of their sockets. My ankles have turned to cankles.. When will it  stop? Does anyone have any advice for me? It has to end soon. I need to hear it will end soon. Yes i am whinning. Yes its a pity party. I know there are more people on here far worse than me and i bow to you. You are so much braver than i am. I cant imagine going thru this for years like alot of you have. My heart goes out to you all. Im just not feeling like its worth the fight, or maybe it is, i dunno. 

       

      Loading spinner
    Viewing 5 reply threads
    • Replies
        triciad
        Participant

          Carol,

          There is no such thing as whining with this disease…it's called venting here!  I'm sorry to hear that you are having such a rough time.  I'm thinking the rougher the side effects…the more it is working…let's hope!  I don't have any advice for you; however, I am praying for you nightly.  Think of all the skin peeling as a "free facelift with  every treatment."  You're going to come out of this looking like a teenager because you already look so young!  Keep up the fight!

          Tricia

          Loading spinner
          triciad
          Participant

            Carol,

            There is no such thing as whining with this disease…it's called venting here!  I'm sorry to hear that you are having such a rough time.  I'm thinking the rougher the side effects…the more it is working…let's hope!  I don't have any advice for you; however, I am praying for you nightly.  Think of all the skin peeling as a "free facelift with  every treatment."  You're going to come out of this looking like a teenager because you already look so young!  Keep up the fight!

            Tricia

            Loading spinner
            Fen
            Participant

              I'm so sorry you feel so awful, Carol.  I know what you mean about the "how long" and I can't answer that. Does Jane in Maine have a email option on her Operation Sunshield site?  I know it is different for everyone, but Jane has probably spoken to lots of IL-2 people and might have an idea of the general lenght of time.

              Fen

              Loading spinner
                Vermont_Donna
                Participant

                  Hi Carol,

                  Sorry you are feeling so poorly. Are you connected with any palliative care folks? This is care/support aimed to help you feeling better while you cope with treatments. Also, does your doctor know how poorly you are feeling now that you are home inbetween treatments? I dont have any advice to offer, but hoping you feel better soon and have time to regroup before the enxt round of treatment. Its kind of like trying to catch a breath during labor contractions…the next contraction is there before you have recovered from the one you are in!

                  Best of luck ,

                  Vermont_Donna, stage 3a

                  stable after 4 infusions of Ipi

                  Loading spinner
                  Vermont_Donna
                  Participant

                    Hi Carol,

                    Sorry you are feeling so poorly. Are you connected with any palliative care folks? This is care/support aimed to help you feeling better while you cope with treatments. Also, does your doctor know how poorly you are feeling now that you are home inbetween treatments? I dont have any advice to offer, but hoping you feel better soon and have time to regroup before the enxt round of treatment. Its kind of like trying to catch a breath during labor contractions…the next contraction is there before you have recovered from the one you are in!

                    Best of luck ,

                    Vermont_Donna, stage 3a

                    stable after 4 infusions of Ipi

                    Loading spinner
                  Fen
                  Participant

                    I'm so sorry you feel so awful, Carol.  I know what you mean about the "how long" and I can't answer that. Does Jane in Maine have a email option on her Operation Sunshield site?  I know it is different for everyone, but Jane has probably spoken to lots of IL-2 people and might have an idea of the general lenght of time.

                    Fen

                    Loading spinner
                    chrisS
                    Participant
                      Hang in there. For my wife the second round always hit her harder then the first. She would do sets of 2 rounds. It will end, I promise. With the baths be carful with the temp, it seemed hot showers and warm bathes made her itch more after. Is your heart rate down and can sleep a little now? I hope so. After a few cycles Melissa really just give up on the lotions because it didn’t seem to do much. I think it damaged her skin a little worse. I would continue to lube up. And don’t for get to hydrate. Water can do wonders on many levels. Her cankles would last a while sometimes. If she was on her feet to long it seemed the swelling would float down to her ankles. If you can put your feet up. Helps her. You are strong and the body is resilient. You can get through it. Cant be itchy for too much longer now. Almost there!

                      Loading spinner
                      chrisS
                      Participant
                        Hang in there. For my wife the second round always hit her harder then the first. She would do sets of 2 rounds. It will end, I promise. With the baths be carful with the temp, it seemed hot showers and warm bathes made her itch more after. Is your heart rate down and can sleep a little now? I hope so. After a few cycles Melissa really just give up on the lotions because it didn’t seem to do much. I think it damaged her skin a little worse. I would continue to lube up. And don’t for get to hydrate. Water can do wonders on many levels. Her cankles would last a while sometimes. If she was on her feet to long it seemed the swelling would float down to her ankles. If you can put your feet up. Helps her. You are strong and the body is resilient. You can get through it. Cant be itchy for too much longer now. Almost there!

                        Loading spinner
                    Viewing 5 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.