Interluekin II Treatments

Several here have. I am sure they will respond soon, but things are usually slow here on weekends.

One in particular comes to mind. Her name is Jane Caddell. She sometimes posts here as Janefrommaine.

Here is her website and tipsheet. You may find it VERY USEFUL!

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

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

Good luck!

Michael

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

Several here have. I am sure they will respond soon, but things are usually slow here on weekends.

One in particular comes to mind. Her name is Jane Caddell. She sometimes posts here as Janefrommaine.

Here is her website and tipsheet. You may find it VERY USEFUL!

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

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

Good luck!

Michael

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

Deb,  

I'm sorry about your husband's diagnosis, but you have come to the right place for information and support.  It is helpful if you post more information if you are comfortable doing so.  Things like – where the primary was, where your husband is  being treated, and any other thing that you can tell us about his situation.  

You can also search the board by using the tab over the bulletin board. 

Fen

Deb,  

I'm sorry about your husband's diagnosis, but you have come to the right place for information and support.  It is helpful if you post more information if you are comfortable doing so.  Things like – where the primary was, where your husband is  being treated, and any other thing that you can tell us about his situation.  

You can also search the board by using the tab over the bulletin board. 

Fen

Some other things to bring are:

Some sort of rear end protection.  My first round I had severe diarrhea and it hurt sooooo bad when I exploded….  Yes, I said exploded….  If your BP drops too low they won't let you out of bed.  I still insisted on using the commode but it was right at my bedside.  I had one accident – very humiliating but by then I was sooo sick I just said G-d damn….  HINT- make sure nobody is in the direct path of your commode when needing to go.  You won't have much time to get there.  Be prepared for "accidents".

I used EMLA cream for round 2.  Prep H just didn't cut it, I needed pain relief.  EMLA is a topical lidocaine which lubricated and numbed my rear end.

Bring "the drops" or one drop – it is a Japanese product that is a powerful odor eliminator.  Trust me, the runs you get are a magnitude of order beyond anything most have experienced.  It is embarrassing to have people come in to your room after a blow out.  Sorry to be graphic, but the drops work instantly and effectively.  I need to be honest, it smelled like something had died inside of me….

Bring lubricating eye drops – in addition to your eyelids, ears, and everything else peeling, your eyes will dry out and hurt.  The eye drops and eyelid cream help.  So did the SARNA.

Bring cancker sore medicine.  I had ulcers in my mouth, throat, and inside of my nose.

zero water and ensure saved me.  I quit drinking everything and eating after 3 days because of the severe fluid build up I had.  I was too bloated to take anything else in.  The ensure did keep my electrolytes in better shape than had I not been able to keep it down.

Mostly you will sleep.

My symptoms came on suddenly around 25 min after my first infusion.  Was doing perfectly well and then suddenly got light headed and puked.  I learned from then on that was my pattern.  The nurses were able to adjust my meds so that they were working by the time I would have gotten sick.

Be aware of any side effects, don't hide them just so you can get more IL-2.

At the end of my first round, I started to bleed from my kidneys.  The first nurse blew it off saying I had my period.  Yeah except I had just finished it 10 days prior!  She didn't report it, I was too embarrassed.  Within a few hours I was hemorraging into my urine.  It was like kool-aid.  The second nurse was astute, called it in.  I almost needed a transfusion and another dose of IL-2 would have killed me.  Speak up.  My clotting factors and blood counts had dropped dangerously low in only a few hours time.

HAVE SOMEONE STAY WITH YOU AT ALL TIMES.  They can keep an eye on you for when stuff like that happens.  My mom rang the nurse to empty my commode.  I just couldn't do it.  If your nurse sucks, then tell someone.  Likewise, if they are attentive to you and are watching you like a hawk – tell someone.  Try to get them again for round 2.

One of my nurses couldn't care less that I was starting to have serious heart arrythmias.  No one came in to talk to us and I was too wiped out to care.  I know how to read EKG's and it was getting worrysome.  They watched me but I had stopped the IL-2 the day previously.  It was unnerving to feel your heart jump around in your chest, skip beats, and leave you breathless.

Not to scare you, but you will have some sort of toxicity.  Keep an eye out for it.  The patient is going to be drained and taken to the edge of what is humanly tolerable.

For me it worked.

After a total of 23 bags, I am, and remain NED since last summer, almost 8 months….  I was diagnosed in July '09, had surgery Feb. 10, and did IL-2 only for my one remaining met in my chest wall June – July 10.

Once you stop the IL-2, it only takes 2 weeks to be relatively back to normal.  The peeling took the longest to go away, and some fatiuge.  I went back to work 5 days after I was discharged from my second dose of IL-2 (out of vac & sick leave).  It is worth the effort, the recovery is VERY quick and IL-2 is still the best thing out there so far.  If it doesn't work then you can get into some great clinical trials.

Take pictures to document your remarkable jouney.  It is still hard for me to wrap my head around the fact I gained 33 pounds in 5 days.  My body became alien to me.  I needed to take pictures to remind me how hard I fought to become NED, or to at least show my young girls how hard mommy fought to be with them for as long as possible.  My pictues of my kids kept me going.

Best of luck, I am saving a spot for you in the 6% club – hope to see you here.

(PS – look in the archives for IL-2)  I have a detailed account of my experiences, much of what I have forgotten.  Jane's list is a good start, I added a few extras though.

Some other things to bring are:

Some sort of rear end protection.  My first round I had severe diarrhea and it hurt sooooo bad when I exploded….  Yes, I said exploded….  If your BP drops too low they won't let you out of bed.  I still insisted on using the commode but it was right at my bedside.  I had one accident – very humiliating but by then I was sooo sick I just said G-d damn….  HINT- make sure nobody is in the direct path of your commode when needing to go.  You won't have much time to get there.  Be prepared for "accidents".

I used EMLA cream for round 2.  Prep H just didn't cut it, I needed pain relief.  EMLA is a topical lidocaine which lubricated and numbed my rear end.

Bring "the drops" or one drop – it is a Japanese product that is a powerful odor eliminator.  Trust me, the runs you get are a magnitude of order beyond anything most have experienced.  It is embarrassing to have people come in to your room after a blow out.  Sorry to be graphic, but the drops work instantly and effectively.  I need to be honest, it smelled like something had died inside of me….

Bring lubricating eye drops – in addition to your eyelids, ears, and everything else peeling, your eyes will dry out and hurt.  The eye drops and eyelid cream help.  So did the SARNA.

Bring cancker sore medicine.  I had ulcers in my mouth, throat, and inside of my nose.

zero water and ensure saved me.  I quit drinking everything and eating after 3 days because of the severe fluid build up I had.  I was too bloated to take anything else in.  The ensure did keep my electrolytes in better shape than had I not been able to keep it down.

Mostly you will sleep.

My symptoms came on suddenly around 25 min after my first infusion.  Was doing perfectly well and then suddenly got light headed and puked.  I learned from then on that was my pattern.  The nurses were able to adjust my meds so that they were working by the time I would have gotten sick.

Be aware of any side effects, don't hide them just so you can get more IL-2.

At the end of my first round, I started to bleed from my kidneys.  The first nurse blew it off saying I had my period.  Yeah except I had just finished it 10 days prior!  She didn't report it, I was too embarrassed.  Within a few hours I was hemorraging into my urine.  It was like kool-aid.  The second nurse was astute, called it in.  I almost needed a transfusion and another dose of IL-2 would have killed me.  Speak up.  My clotting factors and blood counts had dropped dangerously low in only a few hours time.

HAVE SOMEONE STAY WITH YOU AT ALL TIMES.  They can keep an eye on you for when stuff like that happens.  My mom rang the nurse to empty my commode.  I just couldn't do it.  If your nurse sucks, then tell someone.  Likewise, if they are attentive to you and are watching you like a hawk – tell someone.  Try to get them again for round 2.

One of my nurses couldn't care less that I was starting to have serious heart arrythmias.  No one came in to talk to us and I was too wiped out to care.  I know how to read EKG's and it was getting worrysome.  They watched me but I had stopped the IL-2 the day previously.  It was unnerving to feel your heart jump around in your chest, skip beats, and leave you breathless.

Not to scare you, but you will have some sort of toxicity.  Keep an eye out for it.  The patient is going to be drained and taken to the edge of what is humanly tolerable.

For me it worked.

After a total of 23 bags, I am, and remain NED since last summer, almost 8 months….  I was diagnosed in July '09, had surgery Feb. 10, and did IL-2 only for my one remaining met in my chest wall June – July 10.

Once you stop the IL-2, it only takes 2 weeks to be relatively back to normal.  The peeling took the longest to go away, and some fatiuge.  I went back to work 5 days after I was discharged from my second dose of IL-2 (out of vac & sick leave).  It is worth the effort, the recovery is VERY quick and IL-2 is still the best thing out there so far.  If it doesn't work then you can get into some great clinical trials.

Take pictures to document your remarkable jouney.  It is still hard for me to wrap my head around the fact I gained 33 pounds in 5 days.  My body became alien to me.  I needed to take pictures to remind me how hard I fought to become NED, or to at least show my young girls how hard mommy fought to be with them for as long as possible.  My pictues of my kids kept me going.

Best of luck, I am saving a spot for you in the 6% club – hope to see you here.

(PS – look in the archives for IL-2)  I have a detailed account of my experiences, much of what I have forgotten.  Jane's list is a good start, I added a few extras though.

I was one of the 20%, Jane from Maine and DebbieVa were in the 6%(complete responders group). Jane is or guru. Her tip sheet is great. If your husband has a mustache i would recommend shaving it. The nasal discharge I had burned the skin on my upper lip and it was a pain to care for. I shaved before the additional rounds.
My profile is under JerryfromFauq and the log I kept of me events. When one starts to feel a chill (the rigors), TELL THE NURSES. Don’t try to be tough. I would start getting the rigors about 1hr 45min to two hours after finishing a bag. The meds they can give you work great unless you wait too long. Email me at [email protected] if you would like to call me telephonically. I will be glad to talk with you. IL-2 is do-able but tough. They will either put a bard port into your chest or a tube n to deliver the il-2. Dom try to keep drinking steadily, lack of fluids will drop the urine output and they will have to stop the bags until it builds back up. Black licorice or licorice tea (Blend to withstand the taste)will help keep the blood pressure up. They also skip bags when the BP drops below 90. It is not unusual to only take 7-8 of the maximum of 14 bags i the 5 days. I wound up with 49 bags aver the three rounds (6 weeks) of infusions. They should give you pills to flush the excess fluid from you body within three days of discharge. Do have lotions as recommended for the itch that will develop. If light s[pots show up on your skin, this is good as it shows the IL-2 is working. (Shows better the drker one is.)

I was one of the 20%, Jane from Maine and DebbieVa were in the 6%(complete responders group). Jane is or guru. Her tip sheet is great. If your husband has a mustache i would recommend shaving it. The nasal discharge I had burned the skin on my upper lip and it was a pain to care for. I shaved before the additional rounds.
My profile is under JerryfromFauq and the log I kept of me events. When one starts to feel a chill (the rigors), TELL THE NURSES. Don’t try to be tough. I would start getting the rigors about 1hr 45min to two hours after finishing a bag. The meds they can give you work great unless you wait too long. Email me at [email protected] if you would like to call me telephonically. I will be glad to talk with you. IL-2 is do-able but tough. They will either put a bard port into your chest or a tube n to deliver the il-2. Dom try to keep drinking steadily, lack of fluids will drop the urine output and they will have to stop the bags until it builds back up. Black licorice or licorice tea (Blend to withstand the taste)will help keep the blood pressure up. They also skip bags when the BP drops below 90. It is not unusual to only take 7-8 of the maximum of 14 bags i the 5 days. I wound up with 49 bags aver the three rounds (6 weeks) of infusions. They should give you pills to flush the excess fluid from you body within three days of discharge. Do have lotions as recommended for the itch that will develop. If light s[pots show up on your skin, this is good as it shows the IL-2 is working. (Shows better the drker one is.)

I just finished 15 bags almost 4 weeks ago. My best advice for you is to listen listen listen to the advice on this board. They really know their stuff. I could have not done it without them. Dont go into it blind. Pack everything they say. U will need it!!!! They have become warriorers and they r surviving….My thoughts and prayers are with you and you husband.

I just finished 15 bags almost 4 weeks ago. My best advice for you is to listen listen listen to the advice on this board. They really know their stuff. I could have not done it without them. Dont go into it blind. Pack everything they say. U will need it!!!! They have become warriorers and they r surviving….My thoughts and prayers are with you and you husband.

Good info on this subject:

Good info on this subject: