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.

IL-2

  • Post
    Dgentz
    Participant
      Hi! I’m due to start IL-2 next week after a recent surgery to remove more lymph nodes was not fully successful. I’m a bit scared of the treatment, based on things I’ve read about side effects.

      Has anyone been through it recently?

      Hi! I’m due to start IL-2 next week after a recent surgery to remove more lymph nodes was not fully successful. I’m a bit scared of the treatment, based on things I’ve read about side effects.

      Has anyone been through it recently?

    Viewing 8 reply threads
    • Replies
        jim Breitfeller
        Participant

          It is a tough treatment. Listen to your body. The average doses is about 8-10 per cycle. More is not  necessarily   better. Do only what you and your body feek comfortable.

          http://cancerguide.org/rcc_il2hd.html 

          WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.

          The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go in and do a clean sweep; all too often patients get infections in hospitals.

          Things to bring:

          •  Your own sheets, pillow, and blanket
          •  Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
          •  Soft toilet paper
          •  2 cases of bottled water
          •  2 bunches of bananas
          •  SARNA anti-itch lotion
          •  A good lip balm
          • An Ipod or some music that has a headset- bring relaxing music
          •  Some sort of protein drink that is sugar free that can be mixed with water
          •  A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
          •  A heating pad
          •  Slide on slippers
          • A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
          •  

           If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.

          During and after Treatment Have them give you an Adivan an hour before they do the PICC line

          As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.

           

          Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet

          If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions

          to morphine.

          Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that

          the I.V. fluids you are getting are enough. It’s NOT.

           

          They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.

           

          Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off

          in just a few short days with the water pills.

           

          Try to eat 2 bananas a day so your potassium levels don’t get depleted.

           

          As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous

           

          Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.

          When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while. Normal

           

          When your blood pressure drops they will work with it to raise it, so this is normal.

          If you can’t sleep make sure they give you a sleep aid.

           

          You will also experience fevers, and they will keep you on Tylenol.

           

          Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.

          Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.

           

          Make sure they also send you home with itch pills called Hydroxyzine HCL. These help a lot

          If you have fluid in your ears take a benadryl, this helps a lot. (provided you are not allergic) 

          jim Breitfeller
          Participant

            It is a tough treatment. Listen to your body. The average doses is about 8-10 per cycle. More is not  necessarily   better. Do only what you and your body feek comfortable.

            http://cancerguide.org/rcc_il2hd.html 

            WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.

            The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go in and do a clean sweep; all too often patients get infections in hospitals.

            Things to bring:

            •  Your own sheets, pillow, and blanket
            •  Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
            •  Soft toilet paper
            •  2 cases of bottled water
            •  2 bunches of bananas
            •  SARNA anti-itch lotion
            •  A good lip balm
            • An Ipod or some music that has a headset- bring relaxing music
            •  Some sort of protein drink that is sugar free that can be mixed with water
            •  A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
            •  A heating pad
            •  Slide on slippers
            • A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
            •  

             If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.

            During and after Treatment Have them give you an Adivan an hour before they do the PICC line

            As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.

             

            Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet

            If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions

            to morphine.

            Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that

            the I.V. fluids you are getting are enough. It’s NOT.

             

            They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.

             

            Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off

            in just a few short days with the water pills.

             

            Try to eat 2 bananas a day so your potassium levels don’t get depleted.

             

            As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous

             

            Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.

            When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while. Normal

             

            When your blood pressure drops they will work with it to raise it, so this is normal.

            If you can’t sleep make sure they give you a sleep aid.

             

            You will also experience fevers, and they will keep you on Tylenol.

             

            Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.

            Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.

             

            Make sure they also send you home with itch pills called Hydroxyzine HCL. These help a lot

            If you have fluid in your ears take a benadryl, this helps a lot. (provided you are not allergic) 

            jim Breitfeller
            Participant

              It is a tough treatment. Listen to your body. The average doses is about 8-10 per cycle. More is not  necessarily   better. Do only what you and your body feek comfortable.

              http://cancerguide.org/rcc_il2hd.html 

              WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.

              The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go in and do a clean sweep; all too often patients get infections in hospitals.

              Things to bring:

              •  Your own sheets, pillow, and blanket
              •  Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
              •  Soft toilet paper
              •  2 cases of bottled water
              •  2 bunches of bananas
              •  SARNA anti-itch lotion
              •  A good lip balm
              • An Ipod or some music that has a headset- bring relaxing music
              •  Some sort of protein drink that is sugar free that can be mixed with water
              •  A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
              •  A heating pad
              •  Slide on slippers
              • A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
              •  

               If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.

              During and after Treatment Have them give you an Adivan an hour before they do the PICC line

              As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.

               

              Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet

              If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions

              to morphine.

              Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that

              the I.V. fluids you are getting are enough. It’s NOT.

               

              They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.

               

              Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off

              in just a few short days with the water pills.

               

              Try to eat 2 bananas a day so your potassium levels don’t get depleted.

               

              As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous

               

              Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.

              When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while. Normal

               

              When your blood pressure drops they will work with it to raise it, so this is normal.

              If you can’t sleep make sure they give you a sleep aid.

               

              You will also experience fevers, and they will keep you on Tylenol.

               

              Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.

              Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.

               

              Make sure they also send you home with itch pills called Hydroxyzine HCL. These help a lot

              If you have fluid in your ears take a benadryl, this helps a lot. (provided you are not allergic) 

                Dgentz
                Participant

                  Thank you! Gathering supplies!! 

                  Dgentz
                  Participant

                    Thank you! Gathering supplies!! 

                    Dgentz
                    Participant

                      Thank you! Gathering supplies!! 

                    Karin L
                    Participant

                      Will you be having the treatment at a location that is well trained in giving IL2?  That helps immensely as the nurses are on top of the side affects and should provide everything you need.  Try to have someone with you 24-7 in the hospital, if possible.   It is a rough treatment, but you recover quickly.  Listen to your body…best advice that could be given.  Keep in mind it is cumulative, so each week will be different.  Week 2 and 4 were my hardest for side affects and issues, but everyone is different. 

                       

                      Karin

                        Dgentz
                        Participant

                          Yes, my oncologist is very well-versed in it and will be overseeing every aspect of my treatment. 

                          Thanks for the words of wisdom. One other question – you both mentioned having someone there 24-7 – is there a particular reason or just for company?

                           

                           

                           

                          Karin L
                          Participant

                            How to answer…not for company but they can be a huge help in so many ways.  Everything from helping you to the bathroom, getting water, keeping tabs on you if you get the rigors, etc….everyone is so different it's hard to say what help you might need but having gone through this treatment, my husband was invaluable.  I was also in a well versed treatment hospital so the treatment went as smooth as can be expected. 

                            Karin

                            Karin L
                            Participant

                              How to answer…not for company but they can be a huge help in so many ways.  Everything from helping you to the bathroom, getting water, keeping tabs on you if you get the rigors, etc….everyone is so different it's hard to say what help you might need but having gone through this treatment, my husband was invaluable.  I was also in a well versed treatment hospital so the treatment went as smooth as can be expected. 

                              Karin

                              Karin L
                              Participant

                                How to answer…not for company but they can be a huge help in so many ways.  Everything from helping you to the bathroom, getting water, keeping tabs on you if you get the rigors, etc….everyone is so different it's hard to say what help you might need but having gone through this treatment, my husband was invaluable.  I was also in a well versed treatment hospital so the treatment went as smooth as can be expected. 

                                Karin

                                Dgentz
                                Participant

                                  Thank you. 

                                  I currently have my husband staying the first night with me. I was thinking the opposite – thinking that I would rather be alone while suffering such potentially horrible side effects.  I will reconsider! 

                                  Dgentz
                                  Participant

                                    Thank you. 

                                    I currently have my husband staying the first night with me. I was thinking the opposite – thinking that I would rather be alone while suffering such potentially horrible side effects.  I will reconsider! 

                                    JerryfromFauq
                                    Participant

                                             I do urge you to consider having somone stay with you.  I have went through the entire standard of 3 courses (six weks of IL-2).  The info Jjimmy B posted from Jane from Maine above is great info.  One thing I do urge peope to do is be aware that there is usually a delay between finishing a bag and the start of the extreme chills (Rigors) and the possible nausea.  You may not have these side effects on all bags, especially the first one.  This timing will tend to be consistant for future bags, while the intensity may well vary. My profile has my log of IL-2 experiences.  The 3rd day was when most people start to be more out of touch with their normal self (and the food to stat tasting like cardboard.  Learn the delay that you experience for the onset of symptoms and be ready to quickly get a nurse with the meds to counter these effets.  If the nurse doesn't get there immediatly, send someone to get her.  You shouldn't have to wait for five minutes for them.  Most of the time the Rigors can be ontroled by one shot.  When I tried to hold out at the start of them, it took three shots to slow the extreme shaking down.  Drink steadily, don't try to cram too much drink at once.  If the amount of urine output falls too low they will skip bags and may give saline IV's to re-hydrate you.  This is normal.  The other main reason that bags are skipped is if your blood pressure systolic number drops below 90.   Don't be surprised about the wter weight gain.  Just make sure you have several diureti pills to help you lose most of it  in a few days after release. (Have had a couple of people say their hospital forgot to give them the prescription.). 

                                            When one's BP drops, one is more likely to lose balnce and fall.  Don't try to set up or move too fast.  May be good to have someone to walk you across the room to the bathroom.

                                         It is also possile to get a yeast infection that is not readily noticed due to the numbness in th thigh/groin area after the groin lymph nodes are removed.

                                            While I do not consider IL-2 a "walk in the park", it was very do-able for me and I know people that hav been NED for from 5 years to over 20 (and stil NED) with IL-2 as their only treatment.

                                      http://cancerguide.org/rcc_il2hd.html

                                      http://melanomaresources.info/jane.html#homenotes

                                      JerryfromFauq
                                      Participant

                                               I do urge you to consider having somone stay with you.  I have went through the entire standard of 3 courses (six weks of IL-2).  The info Jjimmy B posted from Jane from Maine above is great info.  One thing I do urge peope to do is be aware that there is usually a delay between finishing a bag and the start of the extreme chills (Rigors) and the possible nausea.  You may not have these side effects on all bags, especially the first one.  This timing will tend to be consistant for future bags, while the intensity may well vary. My profile has my log of IL-2 experiences.  The 3rd day was when most people start to be more out of touch with their normal self (and the food to stat tasting like cardboard.  Learn the delay that you experience for the onset of symptoms and be ready to quickly get a nurse with the meds to counter these effets.  If the nurse doesn't get there immediatly, send someone to get her.  You shouldn't have to wait for five minutes for them.  Most of the time the Rigors can be ontroled by one shot.  When I tried to hold out at the start of them, it took three shots to slow the extreme shaking down.  Drink steadily, don't try to cram too much drink at once.  If the amount of urine output falls too low they will skip bags and may give saline IV's to re-hydrate you.  This is normal.  The other main reason that bags are skipped is if your blood pressure systolic number drops below 90.   Don't be surprised about the wter weight gain.  Just make sure you have several diureti pills to help you lose most of it  in a few days after release. (Have had a couple of people say their hospital forgot to give them the prescription.). 

                                              When one's BP drops, one is more likely to lose balnce and fall.  Don't try to set up or move too fast.  May be good to have someone to walk you across the room to the bathroom.

                                           It is also possile to get a yeast infection that is not readily noticed due to the numbness in th thigh/groin area after the groin lymph nodes are removed.

                                              While I do not consider IL-2 a "walk in the park", it was very do-able for me and I know people that hav been NED for from 5 years to over 20 (and stil NED) with IL-2 as their only treatment.

                                        http://cancerguide.org/rcc_il2hd.html

                                        http://melanomaresources.info/jane.html#homenotes

                                        JerryfromFauq
                                        Participant

                                                 I do urge you to consider having somone stay with you.  I have went through the entire standard of 3 courses (six weks of IL-2).  The info Jjimmy B posted from Jane from Maine above is great info.  One thing I do urge peope to do is be aware that there is usually a delay between finishing a bag and the start of the extreme chills (Rigors) and the possible nausea.  You may not have these side effects on all bags, especially the first one.  This timing will tend to be consistant for future bags, while the intensity may well vary. My profile has my log of IL-2 experiences.  The 3rd day was when most people start to be more out of touch with their normal self (and the food to stat tasting like cardboard.  Learn the delay that you experience for the onset of symptoms and be ready to quickly get a nurse with the meds to counter these effets.  If the nurse doesn't get there immediatly, send someone to get her.  You shouldn't have to wait for five minutes for them.  Most of the time the Rigors can be ontroled by one shot.  When I tried to hold out at the start of them, it took three shots to slow the extreme shaking down.  Drink steadily, don't try to cram too much drink at once.  If the amount of urine output falls too low they will skip bags and may give saline IV's to re-hydrate you.  This is normal.  The other main reason that bags are skipped is if your blood pressure systolic number drops below 90.   Don't be surprised about the wter weight gain.  Just make sure you have several diureti pills to help you lose most of it  in a few days after release. (Have had a couple of people say their hospital forgot to give them the prescription.). 

                                                When one's BP drops, one is more likely to lose balnce and fall.  Don't try to set up or move too fast.  May be good to have someone to walk you across the room to the bathroom.

                                             It is also possile to get a yeast infection that is not readily noticed due to the numbness in th thigh/groin area after the groin lymph nodes are removed.

                                                While I do not consider IL-2 a "walk in the park", it was very do-able for me and I know people that hav been NED for from 5 years to over 20 (and stil NED) with IL-2 as their only treatment.

                                          http://cancerguide.org/rcc_il2hd.html

                                          http://melanomaresources.info/jane.html#homenotes

                                          Dgentz
                                          Participant

                                            Thank you. 

                                            I currently have my husband staying the first night with me. I was thinking the opposite – thinking that I would rather be alone while suffering such potentially horrible side effects.  I will reconsider! 

                                            kylez
                                            Participant

                                              The 4 cycles I did were on my own (except my sister came out from the other coast to discharge me / help me around afterwards for the first 2 cycles.) So it can be done, but it would have been luxurious to have some company during, too. Maybe not 24 x 7 (that sounds hard on whoever that might be), but perhaps a few here and there x 7. The food (and cheap plastic-bottled water — ick) did taste like cardboard or worse — would have been nice to have some takeout brought in once in awhile — at least if your hospital's food will be as ultra-bland as mine came to taste like (and they were proud of it…!). Anyway that was 2010… seems like a lifetime ago.

                                              kylez
                                              Participant

                                                The 4 cycles I did were on my own (except my sister came out from the other coast to discharge me / help me around afterwards for the first 2 cycles.) So it can be done, but it would have been luxurious to have some company during, too. Maybe not 24 x 7 (that sounds hard on whoever that might be), but perhaps a few here and there x 7. The food (and cheap plastic-bottled water — ick) did taste like cardboard or worse — would have been nice to have some takeout brought in once in awhile — at least if your hospital's food will be as ultra-bland as mine came to taste like (and they were proud of it…!). Anyway that was 2010… seems like a lifetime ago.

                                                kylez
                                                Participant

                                                  The 4 cycles I did were on my own (except my sister came out from the other coast to discharge me / help me around afterwards for the first 2 cycles.) So it can be done, but it would have been luxurious to have some company during, too. Maybe not 24 x 7 (that sounds hard on whoever that might be), but perhaps a few here and there x 7. The food (and cheap plastic-bottled water — ick) did taste like cardboard or worse — would have been nice to have some takeout brought in once in awhile — at least if your hospital's food will be as ultra-bland as mine came to taste like (and they were proud of it…!). Anyway that was 2010… seems like a lifetime ago.

                                                  Dgentz
                                                  Participant

                                                    Yes, my oncologist is very well-versed in it and will be overseeing every aspect of my treatment. 

                                                    Thanks for the words of wisdom. One other question – you both mentioned having someone there 24-7 – is there a particular reason or just for company?

                                                     

                                                     

                                                     

                                                    Dgentz
                                                    Participant

                                                      Yes, my oncologist is very well-versed in it and will be overseeing every aspect of my treatment. 

                                                      Thanks for the words of wisdom. One other question – you both mentioned having someone there 24-7 – is there a particular reason or just for company?

                                                       

                                                       

                                                       

                                                    Karin L
                                                    Participant

                                                      Will you be having the treatment at a location that is well trained in giving IL2?  That helps immensely as the nurses are on top of the side affects and should provide everything you need.  Try to have someone with you 24-7 in the hospital, if possible.   It is a rough treatment, but you recover quickly.  Listen to your body…best advice that could be given.  Keep in mind it is cumulative, so each week will be different.  Week 2 and 4 were my hardest for side affects and issues, but everyone is different. 

                                                       

                                                      Karin

                                                      Karin L
                                                      Participant

                                                        Will you be having the treatment at a location that is well trained in giving IL2?  That helps immensely as the nurses are on top of the side affects and should provide everything you need.  Try to have someone with you 24-7 in the hospital, if possible.   It is a rough treatment, but you recover quickly.  Listen to your body…best advice that could be given.  Keep in mind it is cumulative, so each week will be different.  Week 2 and 4 were my hardest for side affects and issues, but everyone is different. 

                                                         

                                                        Karin

                                                        Kelly7
                                                        Participant

                                                          My brother(Age 37) just underwent IL2 in February. And he went in with the mindset that he didn't want guests all the time. Well, we as a family just showed up everyday and every night and he never wanted or asked us do leave. We realized right away that having an advocate there with him 24 hours a day was the only way to ensure that he was taken care of properly. The rigors can be very scary for the patient and for the family member watching them go through it. Several times I had to run out in the hall way because he was shaking so badly and the nurses were taking their sweet time coming in(sometimes 5-10 minutes).

                                                          My brother didn't eat much, but we kept lots of water, and Gatorade by his side. He ended up putting on 44 lbs the second week in! He was very uncomfortable. 

                                                          One thing I would recommend going in is BEFORE the treatment talk to your doctor about if the side effects slow your dosage down, to have a plan to try every 10 hours instead of 8. What was happening with my brother was that around hour 7 his vitals were too low, or he had a fever so they waited and waited…..well, the IL2 was being made on command in the lab, so sometimes it would be 3-4am in the morning when is body was READY for the next dosage, but he was held up for hours. , Several times the doctor took his time getting back to the nurses, when they would call about extending the time in between. In the beginning every 8 hours was do-able, but on day 4, it was more like every 10 hours and the second week in, it became every 10 hours real soon. So, instead of checking in on Monday and being released on a Saturday, they were keeping him in until Sunday to atleast get 10 bags in him.  I just feel, the hours kept spreading out, and the IL2 wasn't administered right when his body was ready. He ended up waiting many hours on a few days, and he only got 10 bags each week……6 weeks later, the scans didn't have positive results and now he is on Yervoy. It leaves you wondering ONLY IF, he had more bags, would that have been more successful?? So, have a plan.

                                                          Good luck, and if you can, keep your family there. They can wait on your hand and foot and keep your spirits up!

                                                          Kelly7
                                                          Participant

                                                            My brother(Age 37) just underwent IL2 in February. And he went in with the mindset that he didn't want guests all the time. Well, we as a family just showed up everyday and every night and he never wanted or asked us do leave. We realized right away that having an advocate there with him 24 hours a day was the only way to ensure that he was taken care of properly. The rigors can be very scary for the patient and for the family member watching them go through it. Several times I had to run out in the hall way because he was shaking so badly and the nurses were taking their sweet time coming in(sometimes 5-10 minutes).

                                                            My brother didn't eat much, but we kept lots of water, and Gatorade by his side. He ended up putting on 44 lbs the second week in! He was very uncomfortable. 

                                                            One thing I would recommend going in is BEFORE the treatment talk to your doctor about if the side effects slow your dosage down, to have a plan to try every 10 hours instead of 8. What was happening with my brother was that around hour 7 his vitals were too low, or he had a fever so they waited and waited…..well, the IL2 was being made on command in the lab, so sometimes it would be 3-4am in the morning when is body was READY for the next dosage, but he was held up for hours. , Several times the doctor took his time getting back to the nurses, when they would call about extending the time in between. In the beginning every 8 hours was do-able, but on day 4, it was more like every 10 hours and the second week in, it became every 10 hours real soon. So, instead of checking in on Monday and being released on a Saturday, they were keeping him in until Sunday to atleast get 10 bags in him.  I just feel, the hours kept spreading out, and the IL2 wasn't administered right when his body was ready. He ended up waiting many hours on a few days, and he only got 10 bags each week……6 weeks later, the scans didn't have positive results and now he is on Yervoy. It leaves you wondering ONLY IF, he had more bags, would that have been more successful?? So, have a plan.

                                                            Good luck, and if you can, keep your family there. They can wait on your hand and foot and keep your spirits up!

                                                            Kelly7
                                                            Participant

                                                              My brother(Age 37) just underwent IL2 in February. And he went in with the mindset that he didn't want guests all the time. Well, we as a family just showed up everyday and every night and he never wanted or asked us do leave. We realized right away that having an advocate there with him 24 hours a day was the only way to ensure that he was taken care of properly. The rigors can be very scary for the patient and for the family member watching them go through it. Several times I had to run out in the hall way because he was shaking so badly and the nurses were taking their sweet time coming in(sometimes 5-10 minutes).

                                                              My brother didn't eat much, but we kept lots of water, and Gatorade by his side. He ended up putting on 44 lbs the second week in! He was very uncomfortable. 

                                                              One thing I would recommend going in is BEFORE the treatment talk to your doctor about if the side effects slow your dosage down, to have a plan to try every 10 hours instead of 8. What was happening with my brother was that around hour 7 his vitals were too low, or he had a fever so they waited and waited…..well, the IL2 was being made on command in the lab, so sometimes it would be 3-4am in the morning when is body was READY for the next dosage, but he was held up for hours. , Several times the doctor took his time getting back to the nurses, when they would call about extending the time in between. In the beginning every 8 hours was do-able, but on day 4, it was more like every 10 hours and the second week in, it became every 10 hours real soon. So, instead of checking in on Monday and being released on a Saturday, they were keeping him in until Sunday to atleast get 10 bags in him.  I just feel, the hours kept spreading out, and the IL2 wasn't administered right when his body was ready. He ended up waiting many hours on a few days, and he only got 10 bags each week……6 weeks later, the scans didn't have positive results and now he is on Yervoy. It leaves you wondering ONLY IF, he had more bags, would that have been more successful?? So, have a plan.

                                                              Good luck, and if you can, keep your family there. They can wait on your hand and foot and keep your spirits up!

                                                          Viewing 8 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.

                                                          Popular Topics