Care package for IL-2 treatment

My husband is in the middle of his IL2 treatments.  Here are some good suggestions.  Eucerin is good, but SARNA is great!  They do have it for sensitive skin.  Hard candy and chapstick is great.  A bicycle water bottle is great for water or gatorade.  The kind with the pull up top.  ( This is essential for my husband.)  After my husband's first dose , he is not interested in doing much more than listening to music, sleeping, and maybe reading a little.  However, he often doesn't remember what he has read.  Baby wipes are great for a quick face wash and dry shampoo has been helpful too.  Hope this helps!

My husband is in the middle of his IL2 treatments.  Here are some good suggestions.  Eucerin is good, but SARNA is great!  They do have it for sensitive skin.  Hard candy and chapstick is great.  A bicycle water bottle is great for water or gatorade.  The kind with the pull up top.  ( This is essential for my husband.)  After my husband's first dose , he is not interested in doing much more than listening to music, sleeping, and maybe reading a little.  However, he often doesn't remember what he has read.  Baby wipes are great for a quick face wash and dry shampoo has been helpful too.  Hope this helps!

Here is a post below from Jane from Maines website who did IL-2, and has a IL-2 tipsheet. She recently celebrated a five year anniversary after beating melanoma. The credit for th tip sheet is hers, but I have posted it here many times.

Here is a recent video as well of her skydiving to celebrate her anniversary:

http://www.wmtw.com/r-video/28264352/detail.html

Also, KimK and others may chime in as well with more tips.

Good luck,

Michael

Jane is the Resident IL-2 expert at MRF, and she speaks from experience. Her website IL-2 tip sheet page is linked here:

http://www.operationsunshield.org/tipsheet.html

There is also much good reading elsewhere on her site so you may want to "surf" it a little.

There are others here that may be able to assist you as well. Jerry from Fauq comes to mind off hand. Maybe others will see your post soon and chime in.

I also hope you don’t mind me posting this information I have compiled from other sources, but you may find some of these things helpful regarding the treatment and hospital stay.

From several other people, places and posts:

I am sure you are aware that IL-2 is a treatment that will require a hospital stay while it is being administered, so I wanted to share with you a list of some others peoples experience with IL-2 that could possibly help you both while in the hospital. Although I have added or modified a few things, this is for the most part not my list, so I have to give credit to Jane Caddell, 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 with the IL-2.

Michael

Here is a post below from Jane from Maines website who did IL-2, and has a IL-2 tipsheet. She recently celebrated a five year anniversary after beating melanoma. The credit for th tip sheet is hers, but I have posted it here many times.

Here is a recent video as well of her skydiving to celebrate her anniversary:

http://www.wmtw.com/r-video/28264352/detail.html

Also, KimK and others may chime in as well with more tips.

Good luck,

Michael

Jane is the Resident IL-2 expert at MRF, and she speaks from experience. Her website IL-2 tip sheet page is linked here:

http://www.operationsunshield.org/tipsheet.html

There is also much good reading elsewhere on her site so you may want to "surf" it a little.

There are others here that may be able to assist you as well. Jerry from Fauq comes to mind off hand. Maybe others will see your post soon and chime in.

I also hope you don’t mind me posting this information I have compiled from other sources, but you may find some of these things helpful regarding the treatment and hospital stay.

From several other people, places and posts:

I am sure you are aware that IL-2 is a treatment that will require a hospital stay while it is being administered, so I wanted to share with you a list of some others peoples experience with IL-2 that could possibly help you both while in the hospital. Although I have added or modified a few things, this is for the most part not my list, so I have to give credit to Jane Caddell, 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 with the IL-2.

Michael

This thread contains lots of good advice about IL-2.

http://www.melanoma.org/community/mpip-melanoma-patients-information-page/interluekin-ii-treatments#comment-11293

KimK offered a couple of good suggestions that really stood out to me.  She addresses "rear end protection", as she calls it, for the the diarrhea that seems to accompany IL-2.  Emla is a topical anesthetic she says is far superior to Preparation H.  Since I've heard the diarrhea caused by IL-2 is "far superior" than the garden variety, it seems like something to consider!  If this is something your relative wants to consider, it does require a prescription, so she may want to consider asking for a prescription and have it filled before she goes to the hospital for her treatment.

That's one of the great things about this board.  People are wililng to address both the good and bad things about what we go through.  Doctors can tend to soft pedal things because they don't want to upset us or scare us away from treatment.  Personally, I want to know what's going to happen, every step of the way so I can mentally prepare myself for the battle ahead.  Ignorance is NOT bliss – better preparation thru education I say!

This thread contains lots of good advice about IL-2.

http://www.melanoma.org/community/mpip-melanoma-patients-information-page/interluekin-ii-treatments#comment-11293

KimK offered a couple of good suggestions that really stood out to me.  She addresses "rear end protection", as she calls it, for the the diarrhea that seems to accompany IL-2.  Emla is a topical anesthetic she says is far superior to Preparation H.  Since I've heard the diarrhea caused by IL-2 is "far superior" than the garden variety, it seems like something to consider!  If this is something your relative wants to consider, it does require a prescription, so she may want to consider asking for a prescription and have it filled before she goes to the hospital for her treatment.

That's one of the great things about this board.  People are wililng to address both the good and bad things about what we go through.  Doctors can tend to soft pedal things because they don't want to upset us or scare us away from treatment.  Personally, I want to know what's going to happen, every step of the way so I can mentally prepare myself for the battle ahead.  Ignorance is NOT bliss – better preparation thru education I say!

A few other suggestions – pick and choose what you'd think she'd like – flushable moist wipes are nice, SOFT TP and facial tissue (hospital issue is awful), DVD of some really low-brain-cell TV show (I had DVDs of the ALF TV series), an easy-to-read book (again low on the brain-cell requirement), a little stuffed animal just because.  Some of the best things I received were free:  my friends wrote down funny memories we'd shared and gave them to my husband to read to me when the going got tough.  It was great to take my mind out of that hospital room.  Oh, and I found Carmex to be better than chapstick. 

By the way – everyone helps out for the first treatment and then support can wane.  Kudos to you for realizing that this will be a long, long haul for your relative.  I wish her a complete response!

KatyWI

A few other suggestions – pick and choose what you'd think she'd like – flushable moist wipes are nice, SOFT TP and facial tissue (hospital issue is awful), DVD of some really low-brain-cell TV show (I had DVDs of the ALF TV series), an easy-to-read book (again low on the brain-cell requirement), a little stuffed animal just because.  Some of the best things I received were free:  my friends wrote down funny memories we'd shared and gave them to my husband to read to me when the going got tough.  It was great to take my mind out of that hospital room.  Oh, and I found Carmex to be better than chapstick. 

By the way – everyone helps out for the first treatment and then support can wane.  Kudos to you for realizing that this will be a long, long haul for your relative.  I wish her a complete response!

KatyWI

Don't forget the artificial tears ex. Refresh tears.  My corneas got really dried out and hurt.  Vaseline helps with cracked eyelids or other eye lube ointment.

Get the Japanese One drop toilet deoderizer.  They work wonders.  Your blood pressure will drop so low they won't let you get out of bed, but if you are lucky you may be able to use a bedside commode.  The drops do wonders for the odor and saved me much embarrassment.

You will have liters of diarrhea multiple times a day.  They give you a "hat" to catch all outputs so to speak.  I almost flooded mine a few times.  My mom kept on paging the nurse to dump it.  I was mortified.  Thankfully I slept for most of my treatment.

The vomiting was well controlled by premedication and continual medication.  Don't wait to start the antidiarrheals because you WILL get the runs.

A button top is good because you will be hooked up to so many lines…  I kept my sports bra on because I didn't want to be hanging out all over the place.  Ensure was a godsend.  After the second day the thought of food was too much and I was so bloated, there was no room for any liquid or solid intake.  I gained 33# on my second round.

The most important thing is to have someone with you at all times.  They are your advocate and can remind you that your dogs cannot go to the pond with you and aren't on the ceiling, but rather you are hallucinating.  For me it was just like sleep walking/talking.  Nothing bad, but weird to say the least…..

Best of luck.  I am glad I had the courage to endure IL-2.  I am still NED as far as I know, one year after IL-2.

Don't forget the artificial tears ex. Refresh tears.  My corneas got really dried out and hurt.  Vaseline helps with cracked eyelids or other eye lube ointment.

Get the Japanese One drop toilet deoderizer.  They work wonders.  Your blood pressure will drop so low they won't let you get out of bed, but if you are lucky you may be able to use a bedside commode.  The drops do wonders for the odor and saved me much embarrassment.

You will have liters of diarrhea multiple times a day.  They give you a "hat" to catch all outputs so to speak.  I almost flooded mine a few times.  My mom kept on paging the nurse to dump it.  I was mortified.  Thankfully I slept for most of my treatment.

The vomiting was well controlled by premedication and continual medication.  Don't wait to start the antidiarrheals because you WILL get the runs.

A button top is good because you will be hooked up to so many lines…  I kept my sports bra on because I didn't want to be hanging out all over the place.  Ensure was a godsend.  After the second day the thought of food was too much and I was so bloated, there was no room for any liquid or solid intake.  I gained 33# on my second round.

The most important thing is to have someone with you at all times.  They are your advocate and can remind you that your dogs cannot go to the pond with you and aren't on the ceiling, but rather you are hallucinating.  For me it was just like sleep walking/talking.  Nothing bad, but weird to say the least…..

Best of luck.  I am glad I had the courage to endure IL-2.  I am still NED as far as I know, one year after IL-2.