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Looks like IL-2 for me

Forums General Melanoma Community Looks like IL-2 for me

  • Post
    marfda
    Participant

      I am finishing radiation of my lower back for subq tumors tomorrow! Unfortunately, my PET scan showed tumor activity in my groin and armpit lymph nodes. This is my first non local and non subq activity since my diagnosis in '09. My oncologist is recommending IL-2 beginning right after Christmas. He wants to give it a shot before my cancer is any further advanced. I am happy to take a more agressive approach, although it is going to be tough to schedule all the details with caring for my 5 and 7 year olds. A few questions for you IL-2 veterans.

      I am finishing radiation of my lower back for subq tumors tomorrow! Unfortunately, my PET scan showed tumor activity in my groin and armpit lymph nodes. This is my first non local and non subq activity since my diagnosis in '09. My oncologist is recommending IL-2 beginning right after Christmas. He wants to give it a shot before my cancer is any further advanced. I am happy to take a more agressive approach, although it is going to be tough to schedule all the details with caring for my 5 and 7 year olds. A few questions for you IL-2 veterans.

      1. Is this treatment really given in the ICU? I know every hospital is different, but how did this limit visitors for you?

      2. How important is it that I have someone with me? Would part time be alright? Will this be traumatic for the people who accompany me?

      3. I had a port for interferon and am having it "re installed" (i'm sure that's the wrong term!) ๐Ÿ™‚ Will they put it in the same place as before?

      4. Any other advice? I'm sure I'll come up with more questions later?

      5. Oh! Did anyone else have IL-2 in Tucson? I'd love to ask some UMC specific questions!

      THANK YOU ALL for you insight and advice! 

    Viewing 8 reply threads
    • Replies
        Karin L
        Participant

          I did HD IL2 back in April and May.  Tough treatment, but you will get through it!  The nurses were trained at the hospital I was at so it was done on the cancer floor.  I have read often times it is administered in the ICU at many hospitals. 

          Not sure about the port as I had a PICC line.  Each week in the hospital they would put it in and then remove it before I left.  Fourth week my veins yelled no way so I had a regular IV, which I would not recommend.  So I really am not sure what they will do with a port…my guess is leave it in. 

          My husband was with me 24/7 and if at all possible I would recommend you have someone with you.  Now it might be different being in ICU since you will probably have your own nurse.  Not sure on that.  Our rooms were set up for an overnight guest too, however.  He was a Godsend for so many reasons.  It was not traumatic for him.  The first week in I was "out of it" quite a bit.  Subsequent weeks not so bad. 

          I am sure the veterans with all the sidenotes will come along since my post doesn't seem to be much help.  Someone has a list of items to bring with.  You will need them all.  I had every side affect to be had but it was worth it. 

          Scans as of this past Friday show continued improvement.  That makes 6mos. of no treatment! 

          Karin

          Karin L
          Participant

            I did HD IL2 back in April and May.  Tough treatment, but you will get through it!  The nurses were trained at the hospital I was at so it was done on the cancer floor.  I have read often times it is administered in the ICU at many hospitals. 

            Not sure about the port as I had a PICC line.  Each week in the hospital they would put it in and then remove it before I left.  Fourth week my veins yelled no way so I had a regular IV, which I would not recommend.  So I really am not sure what they will do with a port…my guess is leave it in. 

            My husband was with me 24/7 and if at all possible I would recommend you have someone with you.  Now it might be different being in ICU since you will probably have your own nurse.  Not sure on that.  Our rooms were set up for an overnight guest too, however.  He was a Godsend for so many reasons.  It was not traumatic for him.  The first week in I was "out of it" quite a bit.  Subsequent weeks not so bad. 

            I am sure the veterans with all the sidenotes will come along since my post doesn't seem to be much help.  Someone has a list of items to bring with.  You will need them all.  I had every side affect to be had but it was worth it. 

            Scans as of this past Friday show continued improvement.  That makes 6mos. of no treatment! 

            Karin

              ad2424
              Participant

                Sorry for the multiple postings. The form said each one was rejected.

                ad2424
                Participant

                  Sorry for the multiple postings. The form said each one was rejected.

                  ad2424
                  Participant

                    Sorry for the multiple postings. The form said each one was rejected.

                  Karin L
                  Participant

                    I did HD IL2 back in April and May.  Tough treatment, but you will get through it!  The nurses were trained at the hospital I was at so it was done on the cancer floor.  I have read often times it is administered in the ICU at many hospitals. 

                    Not sure about the port as I had a PICC line.  Each week in the hospital they would put it in and then remove it before I left.  Fourth week my veins yelled no way so I had a regular IV, which I would not recommend.  So I really am not sure what they will do with a port…my guess is leave it in. 

                    My husband was with me 24/7 and if at all possible I would recommend you have someone with you.  Now it might be different being in ICU since you will probably have your own nurse.  Not sure on that.  Our rooms were set up for an overnight guest too, however.  He was a Godsend for so many reasons.  It was not traumatic for him.  The first week in I was "out of it" quite a bit.  Subsequent weeks not so bad. 

                    I am sure the veterans with all the sidenotes will come along since my post doesn't seem to be much help.  Someone has a list of items to bring with.  You will need them all.  I had every side affect to be had but it was worth it. 

                    Scans as of this past Friday show continued improvement.  That makes 6mos. of no treatment! 

                    Karin

                    MichaelFL
                    Participant

                      You can do a search for KimK here on the site as she has gone through it and offered some good tips.

                      I also wanted to share with you a list of Jane's experience with IL-2 that could possibly help you while in the hospital.

                      I have to give credit to Jane Caddell, for this list, but I thought you might find it helpful as it is from a patients point of view. As always, it is a good idea to discuss some of these items with your doctor before taking them. Please do not let this list overly worry you as this is just to prepare in advance for varied possibilities.

                      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 the room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. This may sound silly, but in addition to your treatment, you do not want to get any infections while in the hospital.

                      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

                      A I-pod 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

                      You may wish to have them give you an Adivan (or other anxiety drug if needed) an hour before they do the PICC line. It will help with the anxiety. Also, make sure any PICC lines (or intraveneous lines) are sterile to avoid infection.

                      To help with the sensation of cold feet, hands, chilly etc. you may wish to 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, you may wish to ask about giving 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. It is used for chemotherapy treatment for cancer. It is especially used for those patients who do not respond to other medicines for nausea and vomiting.

                      You may want to ask about Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. It helps you make more urine and to lose salt and excess water from your body. 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 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. Lidocaine viscous, a local anesthetic, is used to treat the pain of a sore or irritated mouth and throat often associated with cancer chemotherapy and certain medical procedures.

                      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.

                      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. You may also wish to take some before you start the treatment.

                      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.

                      You may wish to inquire about itch pills called Hydroxyzine HCL. These help with the itching.

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

                      Also be aware of a condition known as capillary leak syndrome (CLS). CLS results in swelling caused by fluids leaking out of blood vessels into surrounding tissues. CLS caused a drop in blood pressure and decrease blood flow to body organs. The doctors should already be aware of this.

                      Best wishes, and good luck!

                      MichaelFL
                      Participant

                        You can do a search for KimK here on the site as she has gone through it and offered some good tips.

                        I also wanted to share with you a list of Jane's experience with IL-2 that could possibly help you while in the hospital.

                        I have to give credit to Jane Caddell, for this list, but I thought you might find it helpful as it is from a patients point of view. As always, it is a good idea to discuss some of these items with your doctor before taking them. Please do not let this list overly worry you as this is just to prepare in advance for varied possibilities.

                        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 the room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. This may sound silly, but in addition to your treatment, you do not want to get any infections while in the hospital.

                        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

                        A I-pod 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

                        You may wish to have them give you an Adivan (or other anxiety drug if needed) an hour before they do the PICC line. It will help with the anxiety. Also, make sure any PICC lines (or intraveneous lines) are sterile to avoid infection.

                        To help with the sensation of cold feet, hands, chilly etc. you may wish to 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, you may wish to ask about giving 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. It is used for chemotherapy treatment for cancer. It is especially used for those patients who do not respond to other medicines for nausea and vomiting.

                        You may want to ask about Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. It helps you make more urine and to lose salt and excess water from your body. 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 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. Lidocaine viscous, a local anesthetic, is used to treat the pain of a sore or irritated mouth and throat often associated with cancer chemotherapy and certain medical procedures.

                        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.

                        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. You may also wish to take some before you start the treatment.

                        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.

                        You may wish to inquire about itch pills called Hydroxyzine HCL. These help with the itching.

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

                        Also be aware of a condition known as capillary leak syndrome (CLS). CLS results in swelling caused by fluids leaking out of blood vessels into surrounding tissues. CLS caused a drop in blood pressure and decrease blood flow to body organs. The doctors should already be aware of this.

                        Best wishes, and good luck!

                          NYKaren
                          Participant

                            OMG, I just answered every question in detail and lost it all to cyberspace.  i'll be back tonight!

                            karen

                            NYKaren
                            Participant

                              OMG, I just answered every question in detail and lost it all to cyberspace.  i'll be back tonight!

                              karen

                              MichaelFL
                              Participant

                                Happened many times to me too, so I now use a word processor such as microsoft and then copy and paste when I am done. Helps with spell check too so I don't look so stoopid!

                                MichaelFL
                                Participant

                                  Happened many times to me too, so I now use a word processor such as microsoft and then copy and paste when I am done. Helps with spell check too so I don't look so stoopid!

                                  NYKaren
                                  Participant

                                     

                                    s this treatment really given in the ICU? I know every hospital is different, but how did this limit visitors for you?   All hospitals are different.  I was Smilow Cancer Center @ Yale-New Haven Hospital, and they don't use the ICU, but the nurses are all well-trained in IL-2 administration.  They check you officially every 2 hours for vitals and look in many times more. Every time i looked up there was a doctor, nurse, nurse practitioner PA, etc.  Each room has a sofa and a fold out chair w/sheets, etc. for someone to stay with you 24/7 or unlimited visiting hours.  My husband chose to sleep in a  nearby hotel and I was fine with that.  I've been told that the ICU units  have the same setup and you can have someone there for an unlimited time.   I tried checking the UMC website for you and couldn't find anything, but that doesn't mean the info's not there.

                                    2. How important is it that I have someone with me? Would part time be alright? Will this be traumatic for the people who accompany me?  Part-time was ok for me for 2 of the stays–I had explosive diarrhea, always on my 4th day, and the first couple of times i didn't make it to the br.  when my husband arrived the next morning and i told him, he wanted to move into my room full time, but i wouldn't allow it.  yes, i have my hang-ups and that's one of them.  they moved a commode next to my bed.  Also, i bought on drugstore.com the copy to the product called "Drops."  It's better than any spray.  FYI, bring cheap underwear 2 sizes larger than you usually wear.  you gain a lot of water weight (25 lbs. for me) and my underwear was so tight the first time, i cut all the waistbands and legs with scissors–the next times I bough 10 pair of larger sized hanes and was comfortable.  I threw out a few pair rather than wash.  sorry if this is TMI, but it made a huge difference to me and it might to you. 

                                    it was not traumatic for my husband and it meant the world to me that he was there most of the time, but the times he wasn't, the nurses were extra-attentive.  Since you have small children and if you have to  make a choice, have someone with you full-time when you get home.  I personally was exhausted when I got home and it got progessively worse each time.  I'm not trying to scare you, within a few days i was a new person, just residual tiredness that gets better each day and very itchy skin.  Oh yes, for me, the menthol in Sarna burns my skin this time around and the only thing i could/can use is Eucerin "original" creme.

                                    i didn't have all the side effects that somepeople get…no hallucinations (just confusion) and no rigors, even though I had brought my trusty heating pad.  i did bring the bottled water & bananas and they helped.  still needed some potassium & other repletions, but it's just a small bag they add to your pole.  it didn't interfere with the treatment at all, and i was one of the few who got all 8 bags each time.  (Yale has a different protacol than some, they do fewer bags at a highter dose.   They've seen men twice my size have to stop after 5 or 6 and that's fine.   I did cheat on the count backwards by 7's test that they gave before each dose…i can't even do it without any IL-2 dripping into me!  

                                    3. I had a port for interferon and am having it "re installed" (i'm sure that's the wrong term!) ๐Ÿ™‚ Will they put it in the same place as before?  –i had a picc line and i think that's a little different.  one time they used the same arm, next time they didn't.  they placed it and x-rayed it for placement all at bedside.

                                    4. Any other advice? I'm sure I'll come up with more questions later?  Just that everyone's different and everyone's treatment weeks are different.  It's hard , but do-able, and you start to feel better within a few days.  feel free to email me at [email protected] and I'll be happy to answer any other questions…you will get through this!  

                                    5. Oh! Did anyone else have IL-2 in Tucson? I'd love to ask some UMC specific questions!  I hope someone can help you with that, but your doc's staff should be able to answer most of your questions.

                                    All best wishes,

                                    karen

                                    NYKaren
                                    Participant

                                       

                                      s this treatment really given in the ICU? I know every hospital is different, but how did this limit visitors for you?   All hospitals are different.  I was Smilow Cancer Center @ Yale-New Haven Hospital, and they don't use the ICU, but the nurses are all well-trained in IL-2 administration.  They check you officially every 2 hours for vitals and look in many times more. Every time i looked up there was a doctor, nurse, nurse practitioner PA, etc.  Each room has a sofa and a fold out chair w/sheets, etc. for someone to stay with you 24/7 or unlimited visiting hours.  My husband chose to sleep in a  nearby hotel and I was fine with that.  I've been told that the ICU units  have the same setup and you can have someone there for an unlimited time.   I tried checking the UMC website for you and couldn't find anything, but that doesn't mean the info's not there.

                                      2. How important is it that I have someone with me? Would part time be alright? Will this be traumatic for the people who accompany me?  Part-time was ok for me for 2 of the stays–I had explosive diarrhea, always on my 4th day, and the first couple of times i didn't make it to the br.  when my husband arrived the next morning and i told him, he wanted to move into my room full time, but i wouldn't allow it.  yes, i have my hang-ups and that's one of them.  they moved a commode next to my bed.  Also, i bought on drugstore.com the copy to the product called "Drops."  It's better than any spray.  FYI, bring cheap underwear 2 sizes larger than you usually wear.  you gain a lot of water weight (25 lbs. for me) and my underwear was so tight the first time, i cut all the waistbands and legs with scissors–the next times I bough 10 pair of larger sized hanes and was comfortable.  I threw out a few pair rather than wash.  sorry if this is TMI, but it made a huge difference to me and it might to you. 

                                      it was not traumatic for my husband and it meant the world to me that he was there most of the time, but the times he wasn't, the nurses were extra-attentive.  Since you have small children and if you have to  make a choice, have someone with you full-time when you get home.  I personally was exhausted when I got home and it got progessively worse each time.  I'm not trying to scare you, within a few days i was a new person, just residual tiredness that gets better each day and very itchy skin.  Oh yes, for me, the menthol in Sarna burns my skin this time around and the only thing i could/can use is Eucerin "original" creme.

                                      i didn't have all the side effects that somepeople get…no hallucinations (just confusion) and no rigors, even though I had brought my trusty heating pad.  i did bring the bottled water & bananas and they helped.  still needed some potassium & other repletions, but it's just a small bag they add to your pole.  it didn't interfere with the treatment at all, and i was one of the few who got all 8 bags each time.  (Yale has a different protacol than some, they do fewer bags at a highter dose.   They've seen men twice my size have to stop after 5 or 6 and that's fine.   I did cheat on the count backwards by 7's test that they gave before each dose…i can't even do it without any IL-2 dripping into me!  

                                      3. I had a port for interferon and am having it "re installed" (i'm sure that's the wrong term!) ๐Ÿ™‚ Will they put it in the same place as before?  –i had a picc line and i think that's a little different.  one time they used the same arm, next time they didn't.  they placed it and x-rayed it for placement all at bedside.

                                      4. Any other advice? I'm sure I'll come up with more questions later?  Just that everyone's different and everyone's treatment weeks are different.  It's hard , but do-able, and you start to feel better within a few days.  feel free to email me at [email protected] and I'll be happy to answer any other questions…you will get through this!  

                                      5. Oh! Did anyone else have IL-2 in Tucson? I'd love to ask some UMC specific questions!  I hope someone can help you with that, but your doc's staff should be able to answer most of your questions.

                                      All best wishes,

                                      karen

                                      NYKaren
                                      Participant

                                         

                                        s this treatment really given in the ICU? I know every hospital is different, but how did this limit visitors for you?   All hospitals are different.  I was Smilow Cancer Center @ Yale-New Haven Hospital, and they don't use the ICU, but the nurses are all well-trained in IL-2 administration.  They check you officially every 2 hours for vitals and look in many times more. Every time i looked up there was a doctor, nurse, nurse practitioner PA, etc.  Each room has a sofa and a fold out chair w/sheets, etc. for someone to stay with you 24/7 or unlimited visiting hours.  My husband chose to sleep in a  nearby hotel and I was fine with that.  I've been told that the ICU units  have the same setup and you can have someone there for an unlimited time.   I tried checking the UMC website for you and couldn't find anything, but that doesn't mean the info's not there.

                                        2. How important is it that I have someone with me? Would part time be alright? Will this be traumatic for the people who accompany me?  Part-time was ok for me for 2 of the stays–I had explosive diarrhea, always on my 4th day, and the first couple of times i didn't make it to the br.  when my husband arrived the next morning and i told him, he wanted to move into my room full time, but i wouldn't allow it.  yes, i have my hang-ups and that's one of them.  they moved a commode next to my bed.  Also, i bought on drugstore.com the copy to the product called "Drops."  It's better than any spray.  FYI, bring cheap underwear 2 sizes larger than you usually wear.  you gain a lot of water weight (25 lbs. for me) and my underwear was so tight the first time, i cut all the waistbands and legs with scissors–the next times I bough 10 pair of larger sized hanes and was comfortable.  I threw out a few pair rather than wash.  sorry if this is TMI, but it made a huge difference to me and it might to you. 

                                        it was not traumatic for my husband and it meant the world to me that he was there most of the time, but the times he wasn't, the nurses were extra-attentive.  Since you have small children and if you have to  make a choice, have someone with you full-time when you get home.  I personally was exhausted when I got home and it got progessively worse each time.  I'm not trying to scare you, within a few days i was a new person, just residual tiredness that gets better each day and very itchy skin.  Oh yes, for me, the menthol in Sarna burns my skin this time around and the only thing i could/can use is Eucerin "original" creme.

                                        i didn't have all the side effects that somepeople get…no hallucinations (just confusion) and no rigors, even though I had brought my trusty heating pad.  i did bring the bottled water & bananas and they helped.  still needed some potassium & other repletions, but it's just a small bag they add to your pole.  it didn't interfere with the treatment at all, and i was one of the few who got all 8 bags each time.  (Yale has a different protacol than some, they do fewer bags at a highter dose.   They've seen men twice my size have to stop after 5 or 6 and that's fine.   I did cheat on the count backwards by 7's test that they gave before each dose…i can't even do it without any IL-2 dripping into me!  

                                        3. I had a port for interferon and am having it "re installed" (i'm sure that's the wrong term!) ๐Ÿ™‚ Will they put it in the same place as before?  –i had a picc line and i think that's a little different.  one time they used the same arm, next time they didn't.  they placed it and x-rayed it for placement all at bedside.

                                        4. Any other advice? I'm sure I'll come up with more questions later?  Just that everyone's different and everyone's treatment weeks are different.  It's hard , but do-able, and you start to feel better within a few days.  feel free to email me at [email protected] and I'll be happy to answer any other questions…you will get through this!  

                                        5. Oh! Did anyone else have IL-2 in Tucson? I'd love to ask some UMC specific questions!  I hope someone can help you with that, but your doc's staff should be able to answer most of your questions.

                                        All best wishes,

                                        karen

                                        marfda
                                        Participant

                                          Karen, THANK YOU SO MUCH!!! This is a huge blessing!!! I just took some Ativan, it's been a rough night emotionally, but once I can process more clearly, I will reread and make packing notes. Again, thank you for taking the time to write this twice!!!

                                          marfda
                                          Participant

                                            Karen, THANK YOU SO MUCH!!! This is a huge blessing!!! I just took some Ativan, it's been a rough night emotionally, but once I can process more clearly, I will reread and make packing notes. Again, thank you for taking the time to write this twice!!!

                                            marfda
                                            Participant

                                              Karen, THANK YOU SO MUCH!!! This is a huge blessing!!! I just took some Ativan, it's been a rough night emotionally, but once I can process more clearly, I will reread and make packing notes. Again, thank you for taking the time to write this twice!!!

                                              MichaelFL
                                              Participant

                                                Happened many times to me too, so I now use a word processor such as microsoft and then copy and paste when I am done. Helps with spell check too so I don't look so stoopid!

                                                NYKaren
                                                Participant

                                                  OMG, I just answered every question in detail and lost it all to cyberspace.  i'll be back tonight!

                                                  karen

                                                MichaelFL
                                                Participant

                                                  You can do a search for KimK here on the site as she has gone through it and offered some good tips.

                                                  I also wanted to share with you a list of Jane's experience with IL-2 that could possibly help you while in the hospital.

                                                  I have to give credit to Jane Caddell, for this list, but I thought you might find it helpful as it is from a patients point of view. As always, it is a good idea to discuss some of these items with your doctor before taking them. Please do not let this list overly worry you as this is just to prepare in advance for varied possibilities.

                                                  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 the room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. This may sound silly, but in addition to your treatment, you do not want to get any infections while in the hospital.

                                                  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

                                                  A I-pod 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

                                                  You may wish to have them give you an Adivan (or other anxiety drug if needed) an hour before they do the PICC line. It will help with the anxiety. Also, make sure any PICC lines (or intraveneous lines) are sterile to avoid infection.

                                                  To help with the sensation of cold feet, hands, chilly etc. you may wish to 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, you may wish to ask about giving 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. It is used for chemotherapy treatment for cancer. It is especially used for those patients who do not respond to other medicines for nausea and vomiting.

                                                  You may want to ask about Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. It helps you make more urine and to lose salt and excess water from your body. 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 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. Lidocaine viscous, a local anesthetic, is used to treat the pain of a sore or irritated mouth and throat often associated with cancer chemotherapy and certain medical procedures.

                                                  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.

                                                  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. You may also wish to take some before you start the treatment.

                                                  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.

                                                  You may wish to inquire about itch pills called Hydroxyzine HCL. These help with the itching.

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

                                                  Also be aware of a condition known as capillary leak syndrome (CLS). CLS results in swelling caused by fluids leaking out of blood vessels into surrounding tissues. CLS caused a drop in blood pressure and decrease blood flow to body organs. The doctors should already be aware of this.

                                                  Best wishes, and good luck!

                                                  kylez
                                                  Participant

                                                    Hi there,

                                                    1. Mine was in the ICU. The doctor wants to push patients hard (to have the most chance to benefit) so round the clock monitoring is important to make sure they push you as hard as they can (getting a new bag every 8 hours) but stop right at the edge of pushing too hard.

                                                    2. I did my treatment several hundred miles from where I live. The first two cycles (course #1) I was alone except my sister came out (from the other coast) for the recovery day after the last bag, and then for the next several days at home afterwards. The second two cycles (course #2) I did solo including getting home afterwards. This was a little intense for the last cycle which was the hardest, but I did OK. My doctors OK'd me going home solo after they saw I handling the first two cycles OK.

                                                    3. I had a new port put in, in my neck, for each of the 4 cycles. It was removed at the end of each cycle.

                                                    4. You definitely want to get IL-2 at a facility that does it regularly. I got it at a very high-volume IL-2 location. I needed to really take it easy after each cycle. It took several weeks to recover after each 2-cycle course. It's an intense treatment and I feel lucky to have gotten it. And I marvel that such a treatment was actually invented.

                                                    5. Nope, Riverside CA.

                                                    kylez
                                                    Participant

                                                      Hi there,

                                                      1. Mine was in the ICU. The doctor wants to push patients hard (to have the most chance to benefit) so round the clock monitoring is important to make sure they push you as hard as they can (getting a new bag every 8 hours) but stop right at the edge of pushing too hard.

                                                      2. I did my treatment several hundred miles from where I live. The first two cycles (course #1) I was alone except my sister came out (from the other coast) for the recovery day after the last bag, and then for the next several days at home afterwards. The second two cycles (course #2) I did solo including getting home afterwards. This was a little intense for the last cycle which was the hardest, but I did OK. My doctors OK'd me going home solo after they saw I handling the first two cycles OK.

                                                      3. I had a new port put in, in my neck, for each of the 4 cycles. It was removed at the end of each cycle.

                                                      4. You definitely want to get IL-2 at a facility that does it regularly. I got it at a very high-volume IL-2 location. I needed to really take it easy after each cycle. It took several weeks to recover after each 2-cycle course. It's an intense treatment and I feel lucky to have gotten it. And I marvel that such a treatment was actually invented.

                                                      5. Nope, Riverside CA.

                                                      kylez
                                                      Participant

                                                        Hi there,

                                                        1. Mine was in the ICU. The doctor wants to push patients hard (to have the most chance to benefit) so round the clock monitoring is important to make sure they push you as hard as they can (getting a new bag every 8 hours) but stop right at the edge of pushing too hard.

                                                        2. I did my treatment several hundred miles from where I live. The first two cycles (course #1) I was alone except my sister came out (from the other coast) for the recovery day after the last bag, and then for the next several days at home afterwards. The second two cycles (course #2) I did solo including getting home afterwards. This was a little intense for the last cycle which was the hardest, but I did OK. My doctors OK'd me going home solo after they saw I handling the first two cycles OK.

                                                        3. I had a new port put in, in my neck, for each of the 4 cycles. It was removed at the end of each cycle.

                                                        4. You definitely want to get IL-2 at a facility that does it regularly. I got it at a very high-volume IL-2 location. I needed to really take it easy after each cycle. It took several weeks to recover after each 2-cycle course. It's an intense treatment and I feel lucky to have gotten it. And I marvel that such a treatment was actually invented.

                                                        5. Nope, Riverside CA.

                                                          NYKaren
                                                          Participant

                                                            Yes, for me round the clock was vitals every 2 hours and bloods before each bag.  It got so I slept with my blood pressure arm hanging off the side of the bed for them to do what they pleased, and I managed to sleep through a couple.  In addition to helping w/anxiety, Ativan can help w/itching, so I took advantage of it and also slept through a bag of IL-2 and couldn't believe I had received it!

                                                            It's my pleasure to help in any way I can; I've been helped so much by the people on this board. 

                                                            Karen

                                                            NYKaren
                                                            Participant

                                                              Yes, for me round the clock was vitals every 2 hours and bloods before each bag.  It got so I slept with my blood pressure arm hanging off the side of the bed for them to do what they pleased, and I managed to sleep through a couple.  In addition to helping w/anxiety, Ativan can help w/itching, so I took advantage of it and also slept through a bag of IL-2 and couldn't believe I had received it!

                                                              It's my pleasure to help in any way I can; I've been helped so much by the people on this board. 

                                                              Karen

                                                              NYKaren
                                                              Participant

                                                                Yes, for me round the clock was vitals every 2 hours and bloods before each bag.  It got so I slept with my blood pressure arm hanging off the side of the bed for them to do what they pleased, and I managed to sleep through a couple.  In addition to helping w/anxiety, Ativan can help w/itching, so I took advantage of it and also slept through a bag of IL-2 and couldn't believe I had received it!

                                                                It's my pleasure to help in any way I can; I've been helped so much by the people on this board. 

                                                                Karen

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