› Forums › General Melanoma Community › IL 2 preparations, last minute advice?
- This topic has 24 replies, 7 voices, and was last updated 11 years, 1 month ago by
Kim K.
- Post
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- March 11, 2013 at 4:26 pm
I've read a ton of tips and talked to a lot of people and I think I'm ready. I'm geared up emotionally for it. And I've been sort of following MarieM's great advice on prepping my skin for it, which includes baths in water with oil, and thrice daily smearing of Eucerin over the whole body. My skin is as soft as a baby's. Hopefully that will ward off some of the worse of the peeling.
Today I am going to buy some Biotene products, and after rereading KimK's harrowing description, I think I'll stop in the baby dept. and buy some Butt Paste. 🙂
I've read a ton of tips and talked to a lot of people and I think I'm ready. I'm geared up emotionally for it. And I've been sort of following MarieM's great advice on prepping my skin for it, which includes baths in water with oil, and thrice daily smearing of Eucerin over the whole body. My skin is as soft as a baby's. Hopefully that will ward off some of the worse of the peeling.
Today I am going to buy some Biotene products, and after rereading KimK's harrowing description, I think I'll stop in the baby dept. and buy some Butt Paste. 🙂
MANY people suggest that I take , easy to eat, easy to digest, handy food with me to eat during times of hunger instead of waiting for the hospital food. I'm wondering if anyone has any suggstions about such foods? Also.. Jane's tips suggest that one get a protein powder you can mix with water. When I went to the vitamin shoppe, they immedidately recommended regular Whey Powder, which I use in my morning breakfast shakes. That made me gag and I'm not even in the hospital yet. I wonder if anyone knows if there is some kind of LIQUID protein that can be poured into water?
My doc says they will be inserting a Picc line, instead of a Port, because they've found it reduces infections. I was scared about a Port, which I've so far avoided getting, so I am happy about that. Though I seem to remember that the last time I had a Picc line it didn't go that well either.
Even though I know that the biggest dangers are serious, like heart failure or kidney failure, the things that I'm most anxious about are more mundane. Like..skin reactions. I break out from having a hot bath, or wearing a bra, or..just driving through texas, I'm worried about the rashes. Anyone have any suggestions for a non steroidal anti itch cream?
And my other mundane concern is my back! I have a…35 yr back ache. It's something I have learned to live with, aned part of that strategy is never sitting too long, never standing too long, never walking too long, never lying in one position too long. You get my drift. I can commonly end up in pain just from sleeping on a strange hotel bed for a couple of nights, so I am worried about what 6 nights in that uncomfortable looking hospital bed will do to me.
I do heart stress tests and pulmonary function tests this coming Thursday (the 14th) and go into the hospital to start treatment on St Pat's day.. a lucky day for me!
- Replies
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- March 11, 2013 at 5:08 pm
Hi Dian,
I found that when I was feeling nauseous during the 1st cycle, the plastic in plastic bottled water really got to me and I couldn't handle it. I ended up bringing lots of water bottled in glass for the remaining cycles since it's important to stay hydrated. I don't think I dropped any glass bottles on the floor. My reaction to the plastic-tasting bottle taste may be idiosyncratic. I don't like them anyway but I really didn't like them on IL-2.
I had a new PICC line for each IL-2 cycle as well. They did an ultrasound to install it each time. One of the things Kaiser Riverside did really well was installing PICC lines.
Food taste in general may be very idiosyncratic when on these drugs. I wanted some food I could actually tasted, the bland cafetaria food was hard to get down. Again, probably idiosyncratic. I don't think I could have predicted without having experienced the treatment first. But if somebody's with you, then ad hoc maybe they can get you some take-out of whatever seems might be tolerable at the time if the hospital food isn't working. Believe it or not, from a nausea point of view I sometimes wanted some semi-spicy takeout when faced with (that particular hospital's) bland fare.
See my post to buffcody, one non-corticosteroid prescription cream I've used successfully is Protopic (tacrolimus). But even skin is idiosyncratic! A low-potency corticosteroid cream I use today is Desonide.
The more you can force yourself to get up and walk around the ward for a few laps with your IV pole, the better I think. To keep your body moving once in awhile. Also, mindless TV was my friend to pass the time. Nothing requiring brain power of any kind. So you'll have to see what kind of TV channel / remote setup your room will have.
Good luck with your upcoming tests and treatment! Kyle
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- March 11, 2013 at 5:08 pm
Hi Dian,
I found that when I was feeling nauseous during the 1st cycle, the plastic in plastic bottled water really got to me and I couldn't handle it. I ended up bringing lots of water bottled in glass for the remaining cycles since it's important to stay hydrated. I don't think I dropped any glass bottles on the floor. My reaction to the plastic-tasting bottle taste may be idiosyncratic. I don't like them anyway but I really didn't like them on IL-2.
I had a new PICC line for each IL-2 cycle as well. They did an ultrasound to install it each time. One of the things Kaiser Riverside did really well was installing PICC lines.
Food taste in general may be very idiosyncratic when on these drugs. I wanted some food I could actually tasted, the bland cafetaria food was hard to get down. Again, probably idiosyncratic. I don't think I could have predicted without having experienced the treatment first. But if somebody's with you, then ad hoc maybe they can get you some take-out of whatever seems might be tolerable at the time if the hospital food isn't working. Believe it or not, from a nausea point of view I sometimes wanted some semi-spicy takeout when faced with (that particular hospital's) bland fare.
See my post to buffcody, one non-corticosteroid prescription cream I've used successfully is Protopic (tacrolimus). But even skin is idiosyncratic! A low-potency corticosteroid cream I use today is Desonide.
The more you can force yourself to get up and walk around the ward for a few laps with your IV pole, the better I think. To keep your body moving once in awhile. Also, mindless TV was my friend to pass the time. Nothing requiring brain power of any kind. So you'll have to see what kind of TV channel / remote setup your room will have.
Good luck with your upcoming tests and treatment! Kyle
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- March 11, 2013 at 5:08 pm
Hi Dian,
I found that when I was feeling nauseous during the 1st cycle, the plastic in plastic bottled water really got to me and I couldn't handle it. I ended up bringing lots of water bottled in glass for the remaining cycles since it's important to stay hydrated. I don't think I dropped any glass bottles on the floor. My reaction to the plastic-tasting bottle taste may be idiosyncratic. I don't like them anyway but I really didn't like them on IL-2.
I had a new PICC line for each IL-2 cycle as well. They did an ultrasound to install it each time. One of the things Kaiser Riverside did really well was installing PICC lines.
Food taste in general may be very idiosyncratic when on these drugs. I wanted some food I could actually tasted, the bland cafetaria food was hard to get down. Again, probably idiosyncratic. I don't think I could have predicted without having experienced the treatment first. But if somebody's with you, then ad hoc maybe they can get you some take-out of whatever seems might be tolerable at the time if the hospital food isn't working. Believe it or not, from a nausea point of view I sometimes wanted some semi-spicy takeout when faced with (that particular hospital's) bland fare.
See my post to buffcody, one non-corticosteroid prescription cream I've used successfully is Protopic (tacrolimus). But even skin is idiosyncratic! A low-potency corticosteroid cream I use today is Desonide.
The more you can force yourself to get up and walk around the ward for a few laps with your IV pole, the better I think. To keep your body moving once in awhile. Also, mindless TV was my friend to pass the time. Nothing requiring brain power of any kind. So you'll have to see what kind of TV channel / remote setup your room will have.
Good luck with your upcoming tests and treatment! Kyle
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- March 11, 2013 at 5:38 pm
I understand where you are coming from. Remember, hospital beds are adjustable. Just changing the position can help a little. Feet up, back up, somewhere in between. Ice packs, hot packs. I'm sure the hospital can provide both. Extra pillows. I'm sure your back will remind you to move around often. Is there an extra chair in the room so you can alternate sitting there, too? Ask your nurse, maybe she can help as well. I'm sure they will encourage you to be up and around when possible to avoid blood clots, too.
Sports bottle. One thing I found that was nice – then you can drink from any position.
😉
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- March 11, 2013 at 5:38 pm
I understand where you are coming from. Remember, hospital beds are adjustable. Just changing the position can help a little. Feet up, back up, somewhere in between. Ice packs, hot packs. I'm sure the hospital can provide both. Extra pillows. I'm sure your back will remind you to move around often. Is there an extra chair in the room so you can alternate sitting there, too? Ask your nurse, maybe she can help as well. I'm sure they will encourage you to be up and around when possible to avoid blood clots, too.
Sports bottle. One thing I found that was nice – then you can drink from any position.
😉
-
- March 11, 2013 at 5:38 pm
I understand where you are coming from. Remember, hospital beds are adjustable. Just changing the position can help a little. Feet up, back up, somewhere in between. Ice packs, hot packs. I'm sure the hospital can provide both. Extra pillows. I'm sure your back will remind you to move around often. Is there an extra chair in the room so you can alternate sitting there, too? Ask your nurse, maybe she can help as well. I'm sure they will encourage you to be up and around when possible to avoid blood clots, too.
Sports bottle. One thing I found that was nice – then you can drink from any position.
😉
-
- March 12, 2013 at 1:47 am
Dian! Sending love and prayers that you breeze thru this :). Holly -
- March 12, 2013 at 1:47 am
Dian! Sending love and prayers that you breeze thru this :). Holly -
- March 12, 2013 at 1:47 am
Dian! Sending love and prayers that you breeze thru this :). Holly -
- March 12, 2013 at 1:53 am
Dian,
I know you have been preparing and are ready. There is nothing more that i can offer in RE: advice. I like MarieM's skin regime prior to therapy. I don't recall having heard that.
Please know that you (and Cigar Bob) are in our thoughts and prayers. Wishing you the very best…of course, wanting you to be a complete responder. We need you around.
Stay Strong
Kathie
Happy St. Patrick's Day, my friend!
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- March 12, 2013 at 1:53 am
Dian,
I know you have been preparing and are ready. There is nothing more that i can offer in RE: advice. I like MarieM's skin regime prior to therapy. I don't recall having heard that.
Please know that you (and Cigar Bob) are in our thoughts and prayers. Wishing you the very best…of course, wanting you to be a complete responder. We need you around.
Stay Strong
Kathie
Happy St. Patrick's Day, my friend!
-
- March 12, 2013 at 1:53 am
Dian,
I know you have been preparing and are ready. There is nothing more that i can offer in RE: advice. I like MarieM's skin regime prior to therapy. I don't recall having heard that.
Please know that you (and Cigar Bob) are in our thoughts and prayers. Wishing you the very best…of course, wanting you to be a complete responder. We need you around.
Stay Strong
Kathie
Happy St. Patrick's Day, my friend!
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- March 12, 2013 at 8:49 pm
Tough one. Food tasted horible during IL2. A thought from when I had my jaw wired shut (not melanoma related) was carnation instant breakfast. Mix with milk and provided nutrition. Eat as much as you can early on in the week, by end of the week I was not eating much.
My favorite remedy during the rigors (other than demerol) was the heated blankets. Pile on 2-3 of those and shake away.
Good luck!
Matt
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- March 12, 2013 at 8:49 pm
Tough one. Food tasted horible during IL2. A thought from when I had my jaw wired shut (not melanoma related) was carnation instant breakfast. Mix with milk and provided nutrition. Eat as much as you can early on in the week, by end of the week I was not eating much.
My favorite remedy during the rigors (other than demerol) was the heated blankets. Pile on 2-3 of those and shake away.
Good luck!
Matt
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- March 12, 2013 at 8:49 pm
Tough one. Food tasted horible during IL2. A thought from when I had my jaw wired shut (not melanoma related) was carnation instant breakfast. Mix with milk and provided nutrition. Eat as much as you can early on in the week, by end of the week I was not eating much.
My favorite remedy during the rigors (other than demerol) was the heated blankets. Pile on 2-3 of those and shake away.
Good luck!
Matt
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- March 13, 2013 at 2:01 am
Hey, best of luck. Remember each bag brings you closer to the end of treatment.
Don't forget:
Topex spray – good if you develop a sore throat / ulcers. Tastes like crap but will help numb your mouth / throat. Need an RX though. They can get it for you at the hospital.
One Drop – the japanese drops for odor……
For skin the oatmeal baths and cream they gave me worked well. Your hosp. probably includes that with your treatment.
The skin rash wasn't uncomfortable for me, but my eyelids and nostrils were raw from peeling. There was an eye ointment that lubricated my eyes which became dry, and soothed my eyelids / nostrils.
Take all pre-medications prior to treatment, including the immodium. If you wait until you think you need it, it will be too late. I threw up about 45 min. after my first dose. I don't remember throwing up after that, just hellascious runs by the liter…….
After the first few bags, your blood pressure may drop too low to get out of bed. When mine dropped into the 50/30's I wasn't allowed to get out of bed. The ECG cords didn't stretch into the toilet area so I was officially tethered. Have your porta potty right at the bedside ready for use. The spritzer bottle / peri bottle works great to rinse when raw.
Wear pants that easily come off (obvious reason).
I wore a sports bra which was comfortable for me. I didn't want the girls flopping out everywhere or the headlights turning on unexpectedly when I had people in my room.
Mostly I slept. I couldn't eat after the first day. I was too bloated and nauseated. There was no where for food to go! I did drink ensure which helped for a bit. Don't worry if you can't eat or drink though. It isn't worth the stress and you will begin to feel better 24-48 hours after treatment.
When I got home I slept and mostly ate soup. It took a month overall before I was eating somewhat normally again. No worries though, I had padding to spare. Unfortunately all the weight I lost after treatment jumped right back on over the past 3 years…..
Let them allow you to take a nice, long shower after you are disconnected. It will be the bestest ever shower you have ever had.
CALL me any time if you need to. Everyone's journey through IL-2 is different. Regardless, wishing you NED. IL-2 is still worth the grief of trying. I would do it again without hesitation.
Aloha,
Kim Ke
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- March 13, 2013 at 2:01 am
Hey, best of luck. Remember each bag brings you closer to the end of treatment.
Don't forget:
Topex spray – good if you develop a sore throat / ulcers. Tastes like crap but will help numb your mouth / throat. Need an RX though. They can get it for you at the hospital.
One Drop – the japanese drops for odor……
For skin the oatmeal baths and cream they gave me worked well. Your hosp. probably includes that with your treatment.
The skin rash wasn't uncomfortable for me, but my eyelids and nostrils were raw from peeling. There was an eye ointment that lubricated my eyes which became dry, and soothed my eyelids / nostrils.
Take all pre-medications prior to treatment, including the immodium. If you wait until you think you need it, it will be too late. I threw up about 45 min. after my first dose. I don't remember throwing up after that, just hellascious runs by the liter…….
After the first few bags, your blood pressure may drop too low to get out of bed. When mine dropped into the 50/30's I wasn't allowed to get out of bed. The ECG cords didn't stretch into the toilet area so I was officially tethered. Have your porta potty right at the bedside ready for use. The spritzer bottle / peri bottle works great to rinse when raw.
Wear pants that easily come off (obvious reason).
I wore a sports bra which was comfortable for me. I didn't want the girls flopping out everywhere or the headlights turning on unexpectedly when I had people in my room.
Mostly I slept. I couldn't eat after the first day. I was too bloated and nauseated. There was no where for food to go! I did drink ensure which helped for a bit. Don't worry if you can't eat or drink though. It isn't worth the stress and you will begin to feel better 24-48 hours after treatment.
When I got home I slept and mostly ate soup. It took a month overall before I was eating somewhat normally again. No worries though, I had padding to spare. Unfortunately all the weight I lost after treatment jumped right back on over the past 3 years…..
Let them allow you to take a nice, long shower after you are disconnected. It will be the bestest ever shower you have ever had.
CALL me any time if you need to. Everyone's journey through IL-2 is different. Regardless, wishing you NED. IL-2 is still worth the grief of trying. I would do it again without hesitation.
Aloha,
Kim Ke
-
- March 13, 2013 at 2:01 am
Hey, best of luck. Remember each bag brings you closer to the end of treatment.
Don't forget:
Topex spray – good if you develop a sore throat / ulcers. Tastes like crap but will help numb your mouth / throat. Need an RX though. They can get it for you at the hospital.
One Drop – the japanese drops for odor……
For skin the oatmeal baths and cream they gave me worked well. Your hosp. probably includes that with your treatment.
The skin rash wasn't uncomfortable for me, but my eyelids and nostrils were raw from peeling. There was an eye ointment that lubricated my eyes which became dry, and soothed my eyelids / nostrils.
Take all pre-medications prior to treatment, including the immodium. If you wait until you think you need it, it will be too late. I threw up about 45 min. after my first dose. I don't remember throwing up after that, just hellascious runs by the liter…….
After the first few bags, your blood pressure may drop too low to get out of bed. When mine dropped into the 50/30's I wasn't allowed to get out of bed. The ECG cords didn't stretch into the toilet area so I was officially tethered. Have your porta potty right at the bedside ready for use. The spritzer bottle / peri bottle works great to rinse when raw.
Wear pants that easily come off (obvious reason).
I wore a sports bra which was comfortable for me. I didn't want the girls flopping out everywhere or the headlights turning on unexpectedly when I had people in my room.
Mostly I slept. I couldn't eat after the first day. I was too bloated and nauseated. There was no where for food to go! I did drink ensure which helped for a bit. Don't worry if you can't eat or drink though. It isn't worth the stress and you will begin to feel better 24-48 hours after treatment.
When I got home I slept and mostly ate soup. It took a month overall before I was eating somewhat normally again. No worries though, I had padding to spare. Unfortunately all the weight I lost after treatment jumped right back on over the past 3 years…..
Let them allow you to take a nice, long shower after you are disconnected. It will be the bestest ever shower you have ever had.
CALL me any time if you need to. Everyone's journey through IL-2 is different. Regardless, wishing you NED. IL-2 is still worth the grief of trying. I would do it again without hesitation.
Aloha,
Kim Ke
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- March 13, 2013 at 2:03 am
Hey, best of luck. Remember each bag brings you closer to the end of treatment.
Don't forget:
Topex spray – good if you develop a sore throat / ulcers. Tastes like crap but will help numb your mouth / throat. Need an RX though. They can get it for you at the hospital.
One Drop – the japanese drops for odor……
For skin the oatmeal baths and cream they gave me worked well. Your hosp. probably includes that with your treatment.
The skin rash wasn't uncomfortable for me, but my eyelids and nostrils were raw from peeling. There was an eye ointment that lubricated my eyes which became dry, and soothed my eyelids / nostrils.
Take all pre-medications prior to treatment, including the immodium. If you wait until you think you need it, it will be too late. I threw up about 45 min. after my first dose. I don't remember throwing up after that, just hellascious runs by the liter…….
After the first few bags, your blood pressure may drop too low to get out of bed. When mine dropped into the 50/30's I wasn't allowed to get out of bed. The ECG cords didn't stretch into the toilet area so I was officially tethered. Have your porta potty right at the bedside ready for use. The spritzer bottle / peri bottle works great to rinse when raw.
Wear pants that easily come off (obvious reason).
I wore a sports bra which was comfortable for me. I didn't want the girls flopping out everywhere or the headlights turning on unexpectedly when I had people in my room.
Mostly I slept. I couldn't eat after the first day. I was too bloated and nauseated. There was no where for food to go! I did drink ensure which helped for a bit. Don't worry if you can't eat or drink though. It isn't worth the stress and you will begin to feel better 24-48 hours after treatment.
When I got home I slept and mostly ate soup. It took a month overall before I was eating somewhat normally again. No worries though, I had padding to spare. Unfortunately all the weight I lost after treatment jumped right back on over the past 3 years…..
Let them allow you to take a nice, long shower after you are disconnected. It will be the bestest ever shower you have ever had.
CALL me any time if you need to. Everyone's journey through IL-2 is different. Regardless, wishing you NED. IL-2 is still worth the grief of trying. I would do it again without hesitation.
Aloha,
Kim Ke
-
- March 13, 2013 at 2:03 am
Hey, best of luck. Remember each bag brings you closer to the end of treatment.
Don't forget:
Topex spray – good if you develop a sore throat / ulcers. Tastes like crap but will help numb your mouth / throat. Need an RX though. They can get it for you at the hospital.
One Drop – the japanese drops for odor……
For skin the oatmeal baths and cream they gave me worked well. Your hosp. probably includes that with your treatment.
The skin rash wasn't uncomfortable for me, but my eyelids and nostrils were raw from peeling. There was an eye ointment that lubricated my eyes which became dry, and soothed my eyelids / nostrils.
Take all pre-medications prior to treatment, including the immodium. If you wait until you think you need it, it will be too late. I threw up about 45 min. after my first dose. I don't remember throwing up after that, just hellascious runs by the liter…….
After the first few bags, your blood pressure may drop too low to get out of bed. When mine dropped into the 50/30's I wasn't allowed to get out of bed. The ECG cords didn't stretch into the toilet area so I was officially tethered. Have your porta potty right at the bedside ready for use. The spritzer bottle / peri bottle works great to rinse when raw.
Wear pants that easily come off (obvious reason).
I wore a sports bra which was comfortable for me. I didn't want the girls flopping out everywhere or the headlights turning on unexpectedly when I had people in my room.
Mostly I slept. I couldn't eat after the first day. I was too bloated and nauseated. There was no where for food to go! I did drink ensure which helped for a bit. Don't worry if you can't eat or drink though. It isn't worth the stress and you will begin to feel better 24-48 hours after treatment.
When I got home I slept and mostly ate soup. It took a month overall before I was eating somewhat normally again. No worries though, I had padding to spare. Unfortunately all the weight I lost after treatment jumped right back on over the past 3 years…..
Let them allow you to take a nice, long shower after you are disconnected. It will be the bestest ever shower you have ever had.
CALL me any time if you need to. Everyone's journey through IL-2 is different. Regardless, wishing you NED. IL-2 is still worth the grief of trying. I would do it again without hesitation.
Aloha,
Kim Ke
-
- March 13, 2013 at 2:03 am
Hey, best of luck. Remember each bag brings you closer to the end of treatment.
Don't forget:
Topex spray – good if you develop a sore throat / ulcers. Tastes like crap but will help numb your mouth / throat. Need an RX though. They can get it for you at the hospital.
One Drop – the japanese drops for odor……
For skin the oatmeal baths and cream they gave me worked well. Your hosp. probably includes that with your treatment.
The skin rash wasn't uncomfortable for me, but my eyelids and nostrils were raw from peeling. There was an eye ointment that lubricated my eyes which became dry, and soothed my eyelids / nostrils.
Take all pre-medications prior to treatment, including the immodium. If you wait until you think you need it, it will be too late. I threw up about 45 min. after my first dose. I don't remember throwing up after that, just hellascious runs by the liter…….
After the first few bags, your blood pressure may drop too low to get out of bed. When mine dropped into the 50/30's I wasn't allowed to get out of bed. The ECG cords didn't stretch into the toilet area so I was officially tethered. Have your porta potty right at the bedside ready for use. The spritzer bottle / peri bottle works great to rinse when raw.
Wear pants that easily come off (obvious reason).
I wore a sports bra which was comfortable for me. I didn't want the girls flopping out everywhere or the headlights turning on unexpectedly when I had people in my room.
Mostly I slept. I couldn't eat after the first day. I was too bloated and nauseated. There was no where for food to go! I did drink ensure which helped for a bit. Don't worry if you can't eat or drink though. It isn't worth the stress and you will begin to feel better 24-48 hours after treatment.
When I got home I slept and mostly ate soup. It took a month overall before I was eating somewhat normally again. No worries though, I had padding to spare. Unfortunately all the weight I lost after treatment jumped right back on over the past 3 years…..
Let them allow you to take a nice, long shower after you are disconnected. It will be the bestest ever shower you have ever had.
CALL me any time if you need to. Everyone's journey through IL-2 is different. Regardless, wishing you NED. IL-2 is still worth the grief of trying. I would do it again without hesitation.
Aloha,
Kim Ke
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