The Little Things That Make it Easier

 
“When I was on chemo, just taking the pills could make me sick. I found that drinking Sprite instead of water made it easier to get them down.”
 
 

Spearmint gum. That's my secret. When the coughing spells or the nausea come on, I go for the gum, and it seems to work. I have it stashed all over: in my car, in jackets, all over the house so it will always be handy when I need it. I really don't think about it anymore; it's become habit. But when Bob wrote in, I thought that it would be worth it for us to talk about again:

"How did you all learn to work around the Oxaliplatin and Cisplatin cold sensitivity and neuropathy? How about that Erbitux rash — what worked to relieve it? How about nausea — what was the best treatment? I'm sure that there's a wealth of experience out there that can be shared."

We all learn little things that make it easier to get through our treatments. When I was on chemo, just taking the pills could make me sick. I found that drinking Sprite instead of water made it easier to get them down. Chocolate would also calm my stomach — that was a happy discovery. I had the intolerance of cold that comes from the chemo drug Oxaliplatin. I never found anything that would make that any easier. Same for the neuropathy, that tingling in your hands and feet. Anything make that easier to deal with?

These latest treatments have given me insomnia. Usually, I sleep like a rock. But these nights, I wake up about 4 a.m. and can't go back to sleep. I don't know if that's related to the treatments or my mental state or what. But I have realized that as bad as daytime TV is, there's absolutely nothing on in the middle of the night. There are a lot of infomercials. I wonder who they think is watching? People like me who can't sleep but are too groggy to turn off the TV? I haven't found anything that will help me sleep better. I'm hoping that at some point, I'll just be so exhausted that I'll get a full night's sleep.

I know that you all have found your own tricks for chemo, for radiation, for surgery. So let's share them. What do you do to get through the bad times? Let's help each other out here.

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Heh, heh. Thats funny about t.v. I used to figure you could probably get the most accurate figures for drunks and drug abusers from Nielsen A.C. by getting the figures of all stations combined that were on at 3:30 a.m. Unfortunately, as you and I have discovered, that figure would overstate the problem because it includes cancer warriors who are up at that hour as well.

So, did you buy anything at the $19.95 store? :-)

Sent by Tom Clarke | 2:05 PM ET | 03-16-2007

The middle of the night is a great time for those gentle, comforting sit-coms of the fifties and sixties. They can usually be found on Nick at Nite.

Sent by Christy | 2:08 PM ET | 03-16-2007

Those spearmint candy "leaves" were good during my chemo. Wonder why spearmint works? A B-Complex helped w/the neuropathy - check with your doctor first. I know those blanket warmers are usually only kept in the ER but a warmed blanket makes the cold more tolerable. If you get cold at home, just put your blankets in the dryer for a bit and they are toasty warm. I have not found anything real good for insomnia - I have used Tums (calcium helps), melatonin and Benadryl but these last two can leave you feeling drugged. I always just hope I will catch up on my sleep eventually. I think the best thing to do is not be shy about telling your doctor about side effects or problems you are having.

Sent by Clarke | 2:15 PM ET | 03-16-2007

There are no pills or treatment for the neuropathy. My oncologist warned me early during my treatment for Hodgkins Lymphoma nine years ago that the nerve endings could repair themselves over time, or I could have neuropathy the rest of my life. I was lucky. It was a slow process but over six or seven years, the neuropathy has pretty much disappeared. All one can do is pace themself. Cold weather and physically overdoing it by standing in a long line, shopping, or walking too much, can accentuate the discomfort.

Pack away the heels and wingtips for awhile and opt for the comfortable, sometimes ugly shoes. Wear shoes around the house as well because the pain intensifies when something lands on bare feet, or the bed leg. On the days I had to take prednisone, I had trouble sleeping at night, so I had a prescription for a mild and non-addictive sedative. And, I instead of infomercials, try cartoons which are on 24 hours. I rediscovered the humor and artistry of Bugs Bunny and Tom & Jerry. And, one more thing... Thanks for writing your blog, Leroy. I have encouraged my cancer buddies to read it.

Sent by Sue | 5:39 PM ET | 03-16-2007

Ginger tea and/or ginger snaps for nausea works for me every time. However, I never found anything to help with the cold sensitivity and neuropathy associated with Oxaliplatin. I tried to keep exercising fairly regularly and kept gloves in the kitchen so I could get in the fridge.

Sent by Kathy Shapiro | 5:42 PM ET | 03-16-2007

Leroy, I have the same problem with sleep. Get to sleep fine, then wake up at 3:00 am. Tried a lot of things, but the one that worked was Ativan, .5 mg before bed. Now I sleep through 8 hours, no problem. Ask your doctor.

Sent by Urs | 5:43 PM ET | 03-16-2007

I buy ginger gum which is sold as an aid to motion sickness. It helps a lot for the general queasiness of chemo. For neuropathy I take L-Glutamine. It is a powder that body builders use. I take 10 grams mixed in juice twice a day starting three days before chemo and continuing for about a week. It really works, and my oncologist says there is no evidence that it interferes with chemo drugs. My final tip, shared with me by my great oncologist, is to take Claritin 24 twice a day to combat bone pain from Neulasta and Taxotere. I start it the day of chemo and continue it for the next 7 days. Tylenol Arthritis helps, too. But even with all this, chemo sucks!

Sent by Mary | 5:46 PM ET | 03-16-2007

For the insomnia issue, make a list of all of the movies you have ever and always wanted to watch and then rent them. After my last surgery, I had the same insomnia issue you had. I stayed at parents house for my "recovery" period and there was a train changing station about a half a mile down the road. I finally went back to my own house after about three days of ceaseless train whistling which started about 3AM every morning. Are you familiar with the Negro spiritual about the morning train? "I am leaving on the morning train" Pretty scary lyrics when you cant go to sleep.

My doctor prescribed Lunesta for the insomnia. I don't take it often because of the side effects. See if your doctor will prescribe 5MG Xanax. It didn't knock me out, but it helped me cope with my overly attentive mother, LOL. I have one of those "Would you like a sandwich and some soup" every hour mothers. Great lady. My dad is 86 yrs-old and lives in a "geezer-freezer" state of mind. He tells me I am like a cat. "You will always land on your feet regardless of whatever bad things happen to you". Thanks for that coherent moment comment, Dad. You can go back to Mars now!

For the numbness and tingling, I think my doctor prescribed Lyrica. I can check my prescription records. Whatever it was, it worked really well.

Senna is a pill that will give you that "get up and go" feeling if you know what I mean. Just dont go out in public after you have taken it. "Sudden accidents" could occur and they aint the kind Allstate covers.

Humor. Make up jokes and funny comments about your cancer when your friends visit you. Laughter is the best medicine and it is cancers No. 1 enemy.

Hopes this helps!

Sent by Larry Hamm | 5:47 PM ET | 03-16-2007

A couple of suggestions. 1) I had a great accupuncturist, 2) L-Glutamin for nueropothy, 3) Lunesta to get me through the nights 4) If your insurance covers it, Zofran, if not, compazine works well too.

Sent by Terri | 5:49 PM ET | 03-16-2007

When going through chemo, not only do you not want to eat but nothing tastes good. One thing I found was a simple lemon pudding, from scratch, made with whole eggs and fresh lemon. I would make it extra tangy and it always tasted good and I got the added boost of protein. Just Google lemon pudding and you get a ton of recipes but simple is better.

Sent by Jenene Koegel | 5:50 PM ET | 03-16-2007

Sleep and anxiety = ativan. (also an anti-nausea)

Chemo taste from Adriamyacin = jolly ranchers.

Sent by Jen | 7:30 PM ET | 03-16-2007

I did have amazing results taking a vitamin B complex for neuropathy. For the cold sensitivity I found avoidance was the best practice. I've been on Xeloda again recently and find that as long as I eat when I take the pills I can avoid feeling sick. Once again I am overwhelmed by what we have all learned to accept and deal with. In spite of everything I'm off to DC for the weekend trying to think about larger issues than myself. Enjoy!

Sent by Dona | 7:33 PM ET | 03-16-2007

As far as sleep goes, I had the same problem... I became a 4am ranger. My shrink prescribed medication that helped: Trazodone. She said that it's an ineffective anti-depressant, but an effective hypnotic (sleep aide) and she was right.

When the mental chatter keeps me from getting to sleep.....the "what next", "what ifs" and the like, I take a small dose of ativan to put that squirrel in my brain to sleep. As we joke in the BCO chat room, "Better Living Through Chemistry". Sometimes you gotta do what you gotta do to sleep. It helps us heal.

Sent by Nancy K. Clark | 10:34 AM ET | 03-19-2007

Thank god my doctors prescribed the drug called "marinol"..legalized pot..without it i would have been hospitalized for vominting and dehydration from the "red devil and cytoxin! I tried all the other anti nausea drugs that they give you for home but nothing worked until that lil' brown round pill at 900 bucks a bottle..but the good news..the insurance co. Paid for it!! Now that's swwwweeeeeeet according to my 3 sons! :)...yes mom was in lala land for the first 2 months of chemo! Then came taxol..marinol couldnt help the bone pain associated with that one !

Sent by Marianne Dalton | 11:05 AM ET | 03-19-2007

Eat and drink before chemo.

I found immersing my hand in running hot water helped to get a vein up.

Take mints as some drugs give you a nasty taste in your mouth.

Some drugs produced side effects as they were given so i would make records as I found it easier to bear knowing when t was going to end.

I had a cold cap which is best described as being like a swimming cap under which is plastic tubing through which is pumped water/antifreeze. It is cold and can give you a headache so you may be advised to take paracetomol before hand. They have to put the cap on about 45 mins before starting the chemo drugs and for a similar amount of time after the last addition. This means that you end up staying there longer. The cap has variable success at keeping hair and also success can be influenced by how well it is fitted. Gauze may be placed over your ears to prevent them becoming too chilly where the cap touches.

There are ways to try to help yourself and to be ready and anticipate possible symptoms. Do contact them quickly if you feel sick etc rather than waiting til the next cycle as they may have something to make you feel more comfortable. Some people suffer more than others but the nurses do try to alter the medication to improve matters. Some symptoms may not occur til nearly the next cycle, so watch out and record in your diary. yourself. I used to have a bedside table of gear set up ready each time

Things like:-

drink lots of water (I had epirubicin and it colours your urine red for a couple of days)

keep a sports sipper bottle at the side of the bed so you can have a drink without having to move much or sit up

try sports drinks with re-hydrating salts (Lucozade Sports)

try eating ginger foods or sniffing peppermint ? can get peppermint oil from pharmacys. Can also get ginger cereal/cake bars in the UK, called Elevenses, which are useful for nibbling if a Ginger Nut is too much hard work

keep a "diary" of temperature, tablets taken, if/when sick, side effects etc and use to compare for each day/ cycle, also to show oncologist. I could also be forgetful aboit what I had taken and when so keeping a record helped me to avoid having to remember it all

speak up soon if tablets not easing nausea as they can try you with others or prescribe pessaries (useful when you can't keep anything down) You can also take more than 1 anti emetic at a time if they are of different types, so might be useful to take type a then type b 3 hrs later, then type A 3 hrs after that etc etc so keeps levels up in your body

keep eating/ nibbling even just a little

try grapes, sliced banana, tinned or fresh fruit, frozen pineapple chunks etc as steroids can cause constipation. Nice and easy to eat and keep at bedside

thermometer - monitor temp (checking for sign of infection)before taking such as paracetomol (as will lower temp )

watch out for thrush or oral thrush (try corsodyl mouth wash)

sucky sweets for yukky taste in mouth. Some suggest freezing pineapple chunks and sucking on them

headache tablets (I used to get bad ones for a couple of days)

sleeping tablets (just for a couple of nights as the steroids kept my mind awake when i was shattered)

You may also be affected by smells from cooking or bathing or hubby's aftershave

First Few Days After Chemo

Rest lots.

Take care of yourself, take it easy, even when you start to feel better as you can experience sudden fatigue

Let others know if they can help.

My friends used to email me so when I was well enough to go on the internet messages from them were waiting for me. It made me feel very cared for. Sometimes people feel they shouldn't contact you as you wont feel up to it, but you might feel that no one cares as they haven't rung. Let them know what you prefer so they can help you.

Effects can be cumulative on subsequent cycles, so you may become more tired as time progresses.

Some people experience anticipatory nausea, for which such as Diazepam/Lorezapam can be prescribed for the night before treatment or just to take a few hrs before chemo.

Theer are a number of products to help with disguising eyebrow loss.

Some are like a mascara , some like an eyeshadow and others like a pencil. A stencil kit may be useful. As a glasses wearer and having a fringe, I found my loss of eyebrows less noticeable to others.

You can get scarves with fringes attached- or Buff do some stretchy cotton tubing "scarves" which can be worn in a number of ways. Being cotton and stretchy they aren't too slippy and are quite soft and comfy to wear. They are worn by such as snow boarders so come in trendy designs.

Sent by JJ | 11:07 AM ET | 03-19-2007

Have you tried melatonin for sleep?

Sent by Charla | 11:10 AM ET | 03-19-2007

Leroy,

We must all experience insomnia during chemo, but mine lasted 7 1/2 years! After chemo was over, I still couldn't sleep at night. Nothing worked, not even prescription drugs. Until now. I made a drastic change in diet (thanks to The China Study) and became a very strict vegan. I'm sleeping like a haven't slept in years, I require less sleep now and I have all this wonderful energy. My sister, who has just finished treatment (chemo and radiation) has followed suit with the same results.

For nausea... well there is an illegal drug that works wonders. But I mostly relied on my prescribed drugs for relief. I remember craving salt and sugar, which I consumed of course, but I'm sure didn't help me in any other respect.

My other side affect was massive heartburn. Awful! Prilosec worked, but so did my recent diet change.

I hope you feel better soon. We are all cheering for you, Leroy!

Sent by Carol | 11:11 AM ET | 03-19-2007

My nurse recommended Atavan for the wake-up-at-4-in-the-morning thing. I haven't tried it yet, but she said it would last for just 4 hours so that I could still wake up in the morning and not be groggy. But, I'm still white knuckling it. I just lay there in the dark, blaming my sleeplessness on every little sound I hear in the night. I have been fortunate enough not to suffer with any of the other symptoms you all are talking about. Except the nausea that came with radiation and chemo combo, and that required anti-nausea medication. I slept a lot that month.

Sent by Stephanie | 11:13 AM ET | 03-19-2007

A glass of milk help to go back to sleep. Because of hot flashes, I have a miserable time sleeping. My oncologist gave me every sleep med I wanted to try (and a couple more). I found .5 mg of Ativan does the trick most nights. If you have time for a nap during the day, who cares if you sleep during the day, rather than at night? I'm surprised at how well I can manage even after only a few hours of sleep. And no, I never get tired enough to sleep better the next night. Our bodies are working on a different plain now.

Sent by Marcia | 11:14 AM ET | 03-19-2007

You always seems to pick a subject that we can relate too. Last night I had so much pain and one irritating "jumping" nerve in the middle of my back, just below my neck. I tried everything. I rubbed it with aspercreme, slept on a bag of frozen corn, took an atavan ,then another. Finally I was so miserable I literally screamed I wish I was dead! I have NEVER had debilitating pain..that is where I couldn't do anything. After Taxol, it lasts for 8 days. Everyone tells me I'm nuts that Taxol is an easy drug. Vicodan does nothing for the pain so I quit talking it. Hot baths and showers seem to hlep a little. Also the nuropathy is now in both hands and feet, not only the toes but the bottoms of my feet. Does this go away? The only thing I've found to quench my thirst is a Coke or a hot cup of green tea with lemon. I think I'm just tired of being ill. Any ideas on how to get your good, positive side to come back out?

Sent by Patti | 11:15 AM ET | 03-19-2007

Hi Leroy:

What a brilliant idea to share information. My ipod goes to bed with me every night. Sometimes I listen to music and sometimes to audio books, but it sure lulls me to sleep. When I'm really anxious and must have a good night sleep than 1 ambian sleeping pill works. For the neuropothy the nurse in charge of chemo suggested squeezing rubber balls the size of tennis balls.

Can't wait to read the other suggestions. Thanks.

Sent by Jacqueline | 11:16 AM ET | 03-19-2007

Here are a few of the things i've learned so far along my cancer journey...

Mashed potatoes were the answer when i couldn't get any other food down, they sit ok in the stomach. Small sips of gingerale, especially a "natural" or "organic" brand (they seem to have more stomach-settling ginger) help too.

Homemade veggie soup (if you can find someone else to cook it, fantastic) is a good way to get the vitamins & nourishment you need to conquer the worst parts of chemo. Make sure everything is nice and mushy.

Eat small meals, often. And for some reason, triscuts were good, you can kind of suck on them until they get mushy if a sore mouth is an issue.

I've heard that red dye can help heal a sore mouth, popsicles, gatorade etc. I drank a lot of gatorade, small sips through a straw. I was never without a drink nearby, usually water, always with a straw.

Write everything down - what you liked to eat, what tasted bad, etc. That way you don't have to start over each treatment cycle. It can be tough to remember through the chemo blahs.

If you're able, try to go for a little fresh air each day, it makes the worst parts a lot better. At the worst points i had to literally lean on someone to walk down the driveway, but it made me feel like a new person.

Sleep in a different place for naps - a couch in the sun, a different bed. That way your own bed is only for sleeping at night... It seemed to make it easier for me to go to sleep at night.

Sent by EJD | 11:19 AM ET | 03-19-2007

Thanks for the spearment gum idea. Just popped some now to help with some nausea at the moment.

Other things that help me are the anti-nausea medications (Zofran for me). I stay on top of the doses by not waiting to feel sick to take it. I take it ontime while on the chemo.

Also, weird as it sounds, it helps for me to eat little bits of food throughout the day - carbs and protien. Some women will understand, but it's the classic morning sickness feeling that is countered with constant eating. Somehow, I still tend to lose a pound or 2 during chemo week (not always a bad thing....).

Finally, don't push it - get the needed rest and accept empathy from friends and family.

Sent by Jenny G. | 11:21 AM ET | 03-19-2007

I have been dancing with stage IV colon cancer for the past eight years. When I first began treatments I was more worried about losing my hair than anything else. I look back and find that rather amusing now. My hair came out in tufts, not all at once...it is the one side effect that I have complete control over. I can keep my hair cut short on my own, put on a fun cap, or be a blonde, brunette or red head all in one day!

Some of the other side effects haven't been as easy to tolerate and have taken some practice to manage. I learned to quell the nausea with ginger tea and hard ginger candies, to counteract fatigue with Ritalin (which works the opposite in adults), and to communicate often with my treatment team when the side effects become overbearing. I've discovered that the difficult side effects make the easier ones more pleasant to deal with. When I first took Xeloda, I thought that cracks in my feet were terrible. I lathered my feet with crack-creme at night and then wore thick socks to bed. At times the cracks would get so deep that I would have to pull the sock fibers out like splinters. Then I started taking Oxaliplatin. Neuropathy, in a way, can be a blessing. Once you can no longer feel your feet the Xeloda cracks aren't nearly so bothersome!

To offset the neuropathy I've discovered that heat helps with the circulation and if I sleep with an electric blanket on my legs at night the tingling sensation is much less noticeable. I think that as we become seasoned in living with cancer as a chronic condition, we also become well versed with anecdotes. I have gloves by my fridge, in the car, and in my purse. I have little SOS kits in strategic places in case of emergency. Each contains a pair of gloves, sunglasses, a light blanket, magazines, a book, a tube of crack-creme, ginger candy, peppermints, Tylenol, band-aids, and last but not least - CHOCOLATE! I don't have any good tips for a night of sleep but look forward to hearing from those that do. Hoping you get a good nights sleep soon, Leroy. Congrats on your RFA and here's hoping you experience a very long dance with NED.

Sent by Suzanne Lindley | 11:24 AM ET | 03-19-2007

Leroy,

I don't know how flush you are, but you might get a Tivo that will record all your favorite programs. You can watch them when you are sleepless and zip through the commercials.

Sent by Diana Kitch | 11:41 AM ET | 03-19-2007

For Bob — Lots of herbal tea. My preferences during chemo were mint, ginger, or lemon-ginger. I brew it on the weak side, and sweeten it slightly. My husband always had a mug of tea by my side and I found it to be the best way for me to keep up the high level of fluid intake that the oncology team advised, as well as temper some nausea, and ease that dry throat feeling.

Sent by Sheara | 1:52 PM ET | 03-19-2007

Hey Leroy,

Now we'll need somebody to sort all these remedies so we can find the one we want when we need it! I'm currently taking Xeloda, which mostly isn't too bad. In addition to cancer I've recently had 2 deaths in my family so I've been pretty blue and have been having trouble sleeping ever since my initial diagnosis in August 2006. I finally agreed to try Zoloft (which has worked for me before) and it has made a world of difference. Better than Ambien and longer lasting than Benadryl. When I am awake in the middle of the night I often get out of bed to avoid disturbing my husbands sleep and wrap in a blanket and read. If I don't have that much energy I turn on NPR just barely loud enough to hear and those British accents babbling on about the world cup or cricket lull me gently back to sleep. :)

Sent by Katie | 1:53 PM ET | 03-19-2007

Strangely, I did not have insomnia I did not have time. Side effects from chemotherapy (5-FU and Leucovorin the gold standard for Stage IIIA rectal cancer in 2000) kept me in the bathroom all night most nights for seven months. I listened to music, read countless books, periodicals, newspapers, and when I emerged out of the bathroom I often went on the listserv, www.ACOR.org and found comfort, friends and information on this web site.

What got me through—Hagann Daaz raspberry sherbert, mashed potatoes, water, tea and the realization that this chemo, as is all life, is temporary.

After chemo, I connected with a brilliant integrative doctor in New York. There started a rational functional medical regimen including vitamins, minerals, herbs and empirically studied therapies which rebuilt a shattered immune system. I do comply, still, although the regimen has changed over time.

Sent by Deborah | 1:56 PM ET | 03-19-2007

Thanks all for writing in - and keep those comments coming. I posed the question about the Erbitux rash because I've yet to find what I'm looking for. I tried 1% topical hydrocortisone cream, which actually seemed to reduce the swelling, but my oncologist says that the hydrocortisone will lower my immune system response and I could experience secondary infections around the blisters. Shucks. The search continues.

As for the neuropathy, I did try acupuncture with electrical stimulation also applied. It made a huge difference after one treatment - from dead numb feet to completely ticklish in 30 minutes, but the effect didn't improve much after that with subsequent treatments. But some sensitivity was a big improvement over complete loss of sensitivity.

Sent by Bob Maimone | 1:59 PM ET | 03-19-2007

What is it with the 3 a.m. wake up??? I also use Ativan to combat that. I am going to try the L-Glutamin, I have tried other ideas with no luck so I am game!! There is so much relief just knowing you are not crazy and others fell just like you!! God Bless you Leroy.

Sent by Sheila | 2:00 PM ET | 03-19-2007

Leroy- I heard a great one about one aspect of cold sensitivity - when you have to sit on the (inevitably) cold toilet seat, take a hair dryer and heat it up a little before you sit down- then you don't get those shooting pains in the ——- much better!!!!

Sent by Alice Williams | 2:01 PM ET | 03-19-2007

As I was beginning my chemo, a friend who had been through it before sought me out and eagerly shared her personal way of fending off mouth sores: fruity popsicles (the kind we used to get as kids, off the ice-cream truck, with the double sticks). It had to be that kind, she insisted emphatically. And I had to eat 2 or 3 a day.

I never took her up on it. Instead, I followed my doctor's advice and swished my mouth out several times a day with a solution of water, baking soda and salt.

I didn't get mouth sores. Was it the baking soda and salt concoction? Or was I perhaps one of those lucky people who just weren't susceptible to them?

That's the problem with so many home remedies. We just don't know if they really work. But I do know, if I ever have chemo again, I'll be mixing up that baking soda cocktail. "It couldn't hoit!"

Sent by Carl Wilton | 2:03 PM ET | 03-19-2007

Doing Cisplatin and Navelbine, 5th week out of 16 straight. My favorite snack when tummy out of whack: salt and vinegar chips dipped in strawberry low-fat yogurt. What a taste trip, even with metal mouth.

Sent by Reid Douglas | 2:04 PM ET | 03-19-2007

I'm interested that several people take L-glutamine. I do, too, but not for bulking up or neuropathy. It was prescibed by a naturopathic physician, he said, to protect the small intestine from the toxic effects of chemo. I am taking other supplements he suggested to protect liver, kidneys from toxicity boost the immune system and inhibit tumor growth. I am also receiving traditional accupuncture.....Something seems to be working, for one round of chemo seems to have zapped the spread, and the primary tumor hasn't budged since June in spite of a dire prognosis.

Had a fairly easy time of chemo..no hair loss and one episode of vomiting after deximethazone was decreased because I could not sleep. Have taken one or two prescription "sleeping pills."

For non drug-induced sleeplessness, a cup of warm milk sweetened with molasses or honey plus reading something soothing and pleasantly boring like COUNTRY OF THE POINTED FIRS, works for me.

May have to do chemo again. Will remember spearmint gum! Thanks, Leroy.

Think of you all every day. Cheers and Love ?-

Sent by Anne C. | 2:08 PM ET | 03-19-2007

Waking up at four in the morning may also be a function of age. As we get older, our sleep patterns change. We tend to wake up in the middle of the night after five or six hours of sleep. History confirms this. In the old days, people got up in the middle of the night, renewed the fire, spent some time awake, and then went back to sleep. It was known as "the two sleeps." What works for me, aged 67, is to get up, make a sandwich, read in bed for a half hour or so, and then go back to sleep. It always works. I am especially careful about trying to get eight hours of sleep every night, even if it's broken, because of the positive effects on my immune system.

Sent by Jack | 2:10 PM ET | 03-19-2007

I have become somewhat of an insomniac. Unfortunately (or fortunately) I can ill afford to spend the day yawning or sleepy as I am in a PhD program (at 56 yo). Have tried melatonin and Benadryl and when they worked they left me sleepy my doctor recommended Rozerem- an RX,non-narcotic and it worked great! keeps you asleep. thought the info might help can be checked out with your M.D. of course.

Sent by Sandra | 2:24 PM ET | 03-19-2007

Thank you Leroy and everyone!

I'm another one finding L-Glutamine helpful for neuropathy it was recommended by my oncologist a few months ago, after getting neuropathy from the weekly Taxol I started then. She has me taking 10g 3 times a day, the day of chemo and each of the next 4 days. It has not made the tingly/numb area on my foot from last summers Gemzar/Cisplatin go away, but it stopped the expansion and intensification that was happening to that spot and also greatly reduces the new hand & foot problems from the Taxol. Have tried various B-vitamin combos & doses in the past, with no help.

For nausea...anything ginger. Never going long without putting something in my stomach, but never putting very much in at a time. ("Grazing") Drinking Kefir, which is a sort of yoghurt drink — unsweetened, unflavored is the one I like best. Its not only food & treatment for nausea, it also helps with the yeast infections on my skin and in my esophagus. Oh, and always drinking lots of something - water or whatever - the day of chemo & the next few days. Lots!

I'm 5 1/2 years out with ovarian cancer, have had many kinds of chemo and some radiation. The longest I've been off treatment was less than a year right after the initial surgery & chemo I did end up having to retire from my beloved job a few years ago, but I'm still very much living my life. (Most days.)

Sent by Ann | 2:25 PM ET | 03-19-2007

Hi all,

Michael here...

Since I don't have cancer (was a caregiver), I can't tell you anything about the medical side effect stuff...

But I can say to you night owls...

Can't Sleep?...NETFLIX.

You can have an arsenal of movies, that you've always wanted to go see, but never did (c'mon, you all have that list!) delivered to your door to watch whenever you want and keep them for how long you want.

Also, for those of you who are artistic (Melody was VERY artistic, and I am a musician), do something with your passion. I would see her make a tapestry or turn on the lights in her art studio and start painting. Pour yourself into your art, your passion...hell, you have the time! I'd even get up with her and turn on my recording studio and kinda like keep her company (we would be in different rooms, but both awake and up at an ungodly hour together). She liked when I did that, it made her feel "not so alone" in the middle of the night. SO CAREGIVERS...TAKE HEED, if you can, (without killing yourself because you have to get up early in the morning and start your day) get up and keep them company!

To Larry: Great post! You are definitely a funny man! Keep your spirits up!

Sent by Michael Caregiver Survivor | 3:09 PM ET | 03-19-2007

For nausea, anything with ginger helped. (But now, ginger reminds me of how I felt then...Yecch!) Nothing tasted good, but I could eat scrambled eggs, saltine crackers, grilled cheese sandwiches. During radiation, aloe vera gel felt good, though my radiation oncologist said it didn't really have any positive effects. After surgery, a recliner and blankie, my cat, and lots of painkiller drugs along with a good selection of DVDs to watch when awake.

Sent by Doris | 3:10 PM ET | 03-19-2007

My childhood favorite Luden's Wild Cherry cough drops kept me from coughing after my tracheal resection, but it also gave me cavities. Use sugar-free whatever if you are mainlining cough suppressants.

Sent by Genevieve S. Edwards | 3:16 PM ET | 03-19-2007

For nausea, I had ginger snaps and ginger candy (I found them at a health food store - you can get ginger "chews", or gin-gins hard candy). I also got some essential peppermint oil from a naturapathy place. Just a few drops on your hands, rub together, then place your hands on your face and breath in gently. Ginger tea may help as well. What really helped was when Aloxi came on the scene last year - it was a great anti-nausea drug and long lasting.

When I was on Oxilaplatin, I also got a strange sensation in my jaw when I would take my first bite of food. Sometimes it even felt like my jaw would lock up. I found that I needed to eat very soft foods, like pudding, yogurt, and soup, for the first few days after a treatment.

Like others have said, you really can't prevent the neuropathy and cold sensitivity reaction. I kept garden gloves (with rubber grips) by my fridge, made sure I ran warm water for awhile before washing my hands, kept gloves by my back door where I let my dogs in and out, always wore socks, etc. My husband had to take over some food prep - it got to be that even slicing a room temperature vegetable could be too cold. I also found it helped to keep bottled water out at room temp, and to drink from a straw (and sometimes keep gloves on if it was a chilly day!). Mainly - you just have to avoid the cold if at all possible! Unfortunately - I started treatment in February of last year! I found it was harder for me to get warmed up if I did get cold. I walked down the block to watch the St. Patrick's parade (I live in the central Michigan area so it was still cold!). I thought I was dressed warm enough, but for the walk home I felt like I was walking on electrical currents! I was cold the rest of the day!

If it gets really bad, your doctor may have to take you off. I had the folfox6 regimen for Colon cancer, I only had Oxilaplatin though for 6 treatments. Then I had an allergic reaction during treatment and he took me off that immediately. He told me he has yet to have a patient make it to all 12 of that regimen for colon cancer with the oxilaplatin (I continued the 5-FU). The neuropathy has mainly worn off, though I do have some pain in my feet in the mornings, and my hands tend to cramp a bit when I type a lot or crochet for too long!

Try to avoid "chemicals". A well-meaning relative gave me a special hand lotion that is supposed to warm your hands. Only, it takes 15-20 minutes to work, in the meantime I could have just put my hands under warm water! Also - I wasn't sure I wanted to be putting something that has a chemical reaction like that onto my skin! I switched to Burt's Bees products for lotions and cleansers, and wore gloves and socks at night after putting on lots of lotion.

Sent by Kelley E. | 3:27 PM ET | 03-19-2007

When on chemo, I always woke at 3am, also. I found this was a good time to email friends and family. It helped me to feel connected and less alone in the middle of the night.

I wore cotton gloves around the house for the finger discomfort.

Nothing worked better for the nausea than a weekly visit to a gifted acupuncturist (much more relief than any of the meds for me) Also a tea, yerba mate, helped my digestion some along with ginger.

Connection to spirit and your own divinity, (even while your body feels ever so less than divine), is the best medicine in my estimation.

Also believing there will be an end to the madness of the disease is ever so helpful!!

Sent by Kathleen A. | 3:29 PM ET | 03-19-2007

Great Idea sharing tips!!

Ginger snaps kept me nausea free through chemo. Thanks to all my friends from church who baked for me, and always showed up just when I needed them.

Whenever I had symptoms I would say, "I know the chemo is working to kill the cancer because I sure feel like crap."

My husband, who was a psychologist before he died of brain cancer, taught me to "reframe" my views. Bless his heart.

I could not eat bland foods because of the chemo taste. So I drank tart lemonade and ate spicy foods. Lemon drops were good too.

I still, after almost 5 years have some neuropathy, but it has eased up some.

Most of all hanging out with other survivors, the people who "get it" helped me cope. Thanks Leroy for this great outlet for all of this.

Sent by Elizabeth Hendrix | 3:30 PM ET | 03-19-2007

I don't have cancer (that I know of). This website has helped me understand how unique the experience of cancer treatment is. So here are some suggestions that have worked for me and my counseling clients. I offer them with the understanding that they might not work in cancer recovery, but with the hope that they do have some value.

For sleep, breathe naturally and try making the in and out breaths take the same amount of time. Once achieved, slow the breath just a little, keeping the breaths even. Say or think "Breathe in strength, breathe out fear", or whatever words fit for you, with each breath in and out. Another strategy: count backwards from 1,000 by sevens. This can be challenging enough to distract you and boring enough to move you toward sleep. Acknowledge any thoughts that interfere, then resume counting.

For neuropathy, the newspaper columnist Dr. Gott recently recommended veterinary liniment. Our local animal feed store has had quite a run on it since then!

Thank you, Leroy and all, for teaching me so many important things.

Sent by Wendy Roe Hovey | 3:35 PM ET | 03-19-2007

During his first set of chemo treatments, my husband got a nasty case of shingles which left him with lots of nerve damage & pain in his right foot. His doctor prescribed Lyrica and, once they reached a high enough dosage, I am happy to say that it really works. Lyrica is fairly new I think some oncologists also prescribe Neurontin. We have tried many things for my husband's insomnia: Benedryl, half of an Ativan tablet, Ambien. Nothing works dependably, but getting some physical exercise seems to be helpful in aiding sleep. My last recommendation for humor and diversion is Netflix - they've got a great number of comedies, classic and contemporary, and lots of musicals! Laughter is wonderful. Hope one of these is helpful for somebody! Thanks for the tips about spearmint gum Ill get some tomorrow and well try it out on my husband's nausea. Kytril, Ativan and Compazine aren't working so well.

Sent by Betsy B | 3:37 PM ET | 03-19-2007

Insomnia is by far my worst thing at this point as it is 2 am right now. I don't fight it any more. Instead I stay up, do bills, finish a task, read other peoples blogs! This way there is one less thing to do tomorrow. Best thing is for me to go for a walk (too cold right now). Nighttime is has its beauty and tranquility. Everything seems to be in its place.

Sent by Reuben | 3:38 PM ET | 03-19-2007

A few tips and words of advice on neuropathy, nausea, and sleeping:

NEUROPATHY:

For your feet, good insoles (or good shoes) make things better. I also got a pair of nice looking slip-on shoes that I could wear at school and work, because I found that if I wiggled my toes, the tingling would go away, or at least diminish in intensity. But with laced shoes I couldn't take them off fast enough in the middle of class/work. So the slip-ons made it a lot easier, I would just slide them right off whenever the tingling started, and wiggling the toes (or sometimes scratching the bottom of my feet) made it feel so much better!

As many others have mentioned, there are no medicines for it, but either the neuropathy recedes overtime, or your body grows accustomed to it. I had my last chemo about 4 months ago, and it seems to be slowly going away.

Experiment with heat and cold, I found that putting my feet in the shower with warm water felt really good. It didn't make the tingling go away, but the feeling was more enjoyable than I ever remember. Pamper yourself whenever you find those little pleasures, whatever they may be for you. They make your days more bearable.

NAUSEA:

For the nausea, hot tea, mint water, and cinnamon water helped a lot (just boil some water with a few mint leaves or cinnamon sticks, then add sugar to taste). I usually left a thermos by my bed, and had a few sips in the middle of the night. It seemed that keeping a little something in my stomach made the nausea less recurring. Salty crackers went really well with this just a few of them. Cheez-its, Gold Fish, or Sun Chips were also wonderful. Lastly, I found that jello would make the nausea disappear at the moment, but it would invariably make me vomit a couple of hours later.

If you are taking medicine for the nausea, watch the times between pills closely (I kept a small note pad next to my pills) I found that if I took some EXACTLY as prescribed, they worked. For others, I would shorten the times a bit...30 minutes or an hour (per my doctors advice). So I am not encouraging you to overmedicate, but ask your doctor if those times are flexible, and keep a log. Soon you'll learn what combination or time frame works best for you.

When you begin eating more, I suggest you also keep track of what you've put in your stomach. You'll find that your body reacts differently to different foods. So avoid those that seem to upset it (you'll notice it faster if you write them down).

SLEEPING:

I have more words of encouragement than of advise on this subject. If it helps, your body will go back to normal after treatment. But while on medication, a few things that helped were:

Have a small snack in the middle of the night, and hydrate your body some Gatorade, or hot drinks such as tea if your stomach is too sensitive should do.

Take a warm bath, even if it is the middle of the night, your body will be very relaxed right after and it might help you get some extra sleep.

I would advice you against taking sleep medications unless you absolutely cannot get any sleep at all. You create a dependency, and if you use them for too long they have to up the dosage or change it to a different one, so avoid this if you can. Rather, see if any of your nausea or pain medication is the kind that causes drowsiness or sleepiness, and adjust the times you take them so that they match your bedtime.

If all else fails, and you don't feel like reading, a good audio book is always better than those infomercials in the middle of the night. Have someone in your family check them out at the public library, because they're expensive to buy!

I hope this helps. I'm probably leaving some stuff out but I can't think of anything else right now.

Oh, yes... Live Strong!

Sent by Juan Pablo Martinez | 3:50 PM ET | 03-19-2007

If you're having a hard time swallowing the nausea medications, try compazine suppositories they work very quickly. Ask your doctor for a prescription. Also try, with your doctors' help, to find something that will allow you to sleep you wont become addicted and its very important for your mental state.

Sent by Cindy | 3:53 PM ET | 03-19-2007

Hi Leroy,

Here are a few ideas that I have found helpful:

Ginger sources used for nausea include ginger organic tea crystallized ginger chips — small and hard pieces like candy and melt in your mouth soft crystallized ginger that is chewable, and Vernors brand ginger ale that is the only ginger ale that actually tastes to me like ginger.

For sleepless nights I have found 2 CDs that are soothing and relaxing and actually put me to sleep. One is called

"Wind & Mountain" and the other is "Introducing Reiki" - both are all music but not the kind of music that engages your mind, so you can just drift into it - that is the key for me.

Sent by Merry Marcotte | 3:55 PM ET | 03-19-2007

For nausea I love Zofran. I got rid of sleepless nights by walking every day and NOT napping. It is hard at first but helped in the long run.

Sent by Heather Z. | 3:57 PM ET | 03-19-2007

In September 2006 I began a series of CHOP-Rituxan treatments for non-Hodgkin lymphoma. My sleep disorder began with the first 100 mg dose of Prednisone, and lasted more than a year. During that time I took the antidepressant Celexa, to counteract mild depression. At some point, about 6 months after the treatments ended, I began taking Ambien then Ambien-CR, to sleep. These worked fine, but left me groggy. In January of this year I read an article, altogether accidentally, about how Celexa and other anti-depressants may provoke sleep disturbances, while Ambien and other sleep aids may arouse feelings of depression. So, I stopped taking both. After a few weeks I began sleeping normally. I still have intermittent disturbances, but the normal rhythms are mostly restored. While I am grateful for all of the drug options available to us today, sometimes, maybe less is more.

Sent by Anna Harmon | 4:24 PM ET | 03-19-2007

My wife had been undergoing treatments for breast cancer. The first set of chemo drugs that were used cause a great deal of nausea. Compazine helped a great deal. She would take one when she felt the nausea coming on, and it pretty much wiped it out.

As for eating, she has acquired a taste for packaged macaroni and cheese. It's one of the few things that actually taste like anything to her.

Sent by Jeff Kash | 4:25 PM ET | 03-19-2007

Insomnia: 1) lava lamp 2) cool down (lower body temp is conducive to sleep) 3) curl up on a couch near the computer and have NPR.org play the latest "All Things Considered," etc. — interesting enough to divert me from worrying, yet not so "loud" as to keep me from falling asleep if I can (if nothing else, I learn something).

Sent by LDP | 4:27 PM ET | 03-19-2007

I have neuropathic pain for surgery. They gave me a capsaicin cream to rub in and said if that didn't work then they did gabapentin, or pregablin. I think its likely there would be some payoff in side effect tho.

Sent by JJ | 4:28 PM ET | 03-19-2007

Neurontin (aka Gabapentin in my country) for Neuropathy. Has some side effects: little nausea, dizzyness. In some cases (mine for example) nerves do repair (for me it took almost three years).

Sent by Marco | 4:52 PM ET | 03-19-2007

My brother found nausea relief from nibbling crystalized ginger candy.

Sent by Nancy Nerenberg | 4:53 PM ET | 03-19-2007

A suggestion that might help w/ the insomnia & will help w/ the cold sensation: my daughter gave her Grampa an electric mattress pad for Christmas. Same theory as an electric blanket except it's on the bottom of you. It must be plugged directly into the wall outlet, not w/ an extension cord. My Dad says it's the best gift he's ever gotten. He sets it on "2" about 1/2 hr before bed & it stays on that all night. Apparently these can be purchased at many retail/dept stores - daughter says JC Penney's had the most variety.

Sent by Ellen Ballard | 5:33 PM ET | 03-19-2007

Leroy - I just this afternoon read an interesting idea for sleep. 1 Tbsp apple vinegar in 8 oz of water just before bedtime. I'm going to try it tonight.

Here's a question— I love all your readers' suggestions re all this. i don't have cancer but would like access to this info if necessary in the future.

How about writing a book. "All you ever wanted to know about cancer but hoped you'd never have to ask?"

Sent by Linda Hilsen | 9:52 AM ET | 03-20-2007

When I was going through treatments, I figured I might as well get my money's worth and I asked questions about diet, skin, rashes, insomnia...all the time. Why not? This is not a time to suffer unnecessarily.

I loved the dietician and she was so helpful to me. My #1 favorite hint when I could barely eat was to put barbeque sauce on everything. Apparently, the taste buds that work the longest are the ones for sour/tart. SO, eating sour things helps stimulate the appetite. Limeade, lemonade, barbeque sauce got me through many meals of carrots and mashed potatoes.

Sent by Robin Smith | 10:12 AM ET | 03-20-2007

I don't see any comments from you on eating healthy. I know how scary it is to wonder if the cancer will come back. I just had new mammograms done and they did a retest as they could not believe my cancer was GONE.I changed my eating to almost all organic and took cecium to make my system alkaline. I have read that alkaline bodies cannot substain cancer cells. I gave my sister paw paw to take after her surgery and radiation to kill off the 3% they say nothing can kill. It is that little bit that can come back in already stressed body. Get a mini trapoline that will do more for you than other exercise.

Sent by Patty | 10:17 AM ET | 03-20-2007

This may not work for everyone, but when I can't sleep I take 2 slugs of cherry liquid benedryl. It is relatively harmless and seems to do the trick. I had a friend who had pretty good success with neurontin for neurapathy but it apparently does not work for everyone.

Sent by Becky | 11:54 AM ET | 03-20-2007

I, too, suffered from nausea and the tingling/senstivity to cold/numbness of fingers and feet. For nausea I found a slice of fresh lemon in hot water helped or any lemon, lemon drops, etc. I, too, used gum all the time. Also ginger cookies settled my stomach. The side effects from the Oxaliplatin you just have to suffer through. I didn't find anything helped other than I wore gloves outside. Living in Wisconsin I also had to protect my throat from breathing in the cold air and had to cover my mouth and nose with a scarf.

Every morning, after I get to work, the first thing I do is check your commentary. It has helped me so much. Thank you!

Sent by Kathy | 11:56 AM ET | 03-20-2007

Chewing peppermint Trident gum helped my extreme acid stomach more than prescription strength Prevacid: I read of this suggestion , research-based, but thought it was so silly I didn't try it for weeks. When I did I was pretty amazed, it works !

Thanks for a great, and very helpful, column.

Sent by Nancy O. | 11:07 AM ET | 03-21-2007

My mother finished chemo leucovrin and oxilipatin-she has numbness and tingling in feet and cold sensitivity-
By reading your notes it as opened our eyes to other things we can do. Continue the good dialogue and I will continue to visit this site-Thanks- You dont know how much

Sent by margie Stratton | 1:30 PM ET | 03-26-2007

What are the best things for mouth sores? I see the water/baking soda/salt but is there any other ideas?

Sent by Debbie | 10:54 AM ET | 03-27-2007

For insomnia: 1 MG lorazepam, (generic for ativan) plus 50 MG of trazodone at bedtime. Neither lunesta or ambian worked for me.
Neuropathy: finished chemo 7 months ago. Tried neurontin, didn't help. Now on lyrica, which isn't helping Higher doseage might make a difference.
Check with your doctor about megase (sp?). It's an appetite stimulant.

Sent by Roberta | 2:19 AM ET | 05-09-2007

I read somewhere that Biotene toothpaste and mouthwash work to prevent mouth sores and dryness. I'm using the toothpaste, mouthwash and gel and have had no issues (fingers crossed - 8 weeks on Taxol, 4 to go).

Sent by Shannon | 8:09 PM ET | 05-28-2007

On my 7th week of Taxol for breast CA after mastectomy. The nite of chemo and the next night after, I wake at 4 and do not get to go back to sleep. I have to be at work at the hospital at 7 so this is bad news.Have to work because I have to have insurance to buy more Taxol!
I drink a V8, Slim Fast and eat a banana every day this helps with getting not so tired every day somehow.

Sent by FayeGolden | 11:05 PM ET | 06-20-2007

I'm about to start 3 rounds of Cisplatin and Gemzabebe for Stage 1A lung cancer which has been surgically removed, but there was prominent lymphovascular invasion present. No pleural invasion. Margins were clear. Can someone please fill me in on what to expect from this drug as I'm in Houston, TX and have to get back and forth from N. Carolina via plane travel. VERY grateful for any insight.

Sent by Letha | 11:13 PM ET | 07-28-2007

I had six sessions of taxol and carboplatium, five hours each session for ovarian cancer, stage III.....a scan shows no sign of the cancer, so guess I am in remission.....very grateful....however, had severe neuropathy starting a month after treatment....is getting better with a big dose of neurotin every day....problem is have lost my sense of taste about three weeks ago....can spell everything, just no taste.....help.....Barbara

Sent by Barbara Loftus | 5:58 PM ET | 08-07-2007

Sorry, with the neuropathy, I make mistakes typing.....I can SMELL everything, but no taste....spend lots of time sniffing the peanut butter jar....doctor suggested using zinc logenges, lemon flavored....I can get that and the essense of some food....have lost too much weight between chemo and now this....I don't seem to find anyone else with this problem....would appreciate any kind of info.....thanks.....Barbara

Sent by Barbara Loftus | 7:04 PM ET | 08-12-2007

My stepdaughter, who lives in Houston, has cancer; because of the treatment, she is sensitive to hot and cold. We got her some silk glove liners from Cabela's, and she finds them useful.

Sent by Libby | 11:53 AM ET | 02-14-2008

Sticking maxy pads to the toliet seat help with cold sensitivity and can easily be replaced.

Sent by Vicki | 8:31 PM ET | 03-08-2008

Great posts. Thank you. I have newly diagnosed stage 4 colon cancer (I've known for about the last 2 1/2 months). Reading these posts really give me some ideas of what to expect and how to work with it.

Sent by Tim | 12:46 AM ET | 04-20-2008

My mother just started Erbitux two weeks ago for stage III colon cancer and her feet have started to hurt when she walks. She does not have sores on her feet, although there is a little redness at the balls of her feet. Has anyone had this symptom and can anyone explain it?

Sent by Cathy | 10:00 AM ET | 04-24-2008

I just want to say thanks to all those who posted their recommendations! I'm putting together a care package for a coworker who will be going through chemo very soon, and now I know exactly what kinds of things to put in it. :)

Sent by L. C. | 7:49 PM ET | 07-01-2008

I have just started Taxol for a recurrence of breast cancer of 25 years ago. I was on Arimidex, didn't work, on Cytoxin,methotrexate, and 5FU. Then just switched to Taxol--I have not gotten any nausea from the drugs, but the sleepless nights are the worst. I can sleep for up to 4 hours then it's over for the night. Some nights, I can't sleep at all. I did get severe muscle pain after the Taxol treatment, but it's going away. My blood counts have remained very good--so far. The cancer was breast cancer that metasized to the lining of the lung--not in the lung, but it created a lot of fluid build up; causing me to get it drained all the time. Thankfully, that has subsided, but what a trip this has been. To make the stress level worse, our daughter who lived with us, had a stroke and died last year. We are also dealing with a law suit over that. God bless all of us who are fighting these battles.

Sent by Ardis Steele | 11:17 PM ET | 09-11-2008



   
   
   
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