Not sleeping and agitation???

[Kimfish48]

Hey, guys. It's Kim again. Sorry that I keep sending separate posts with new symptoms that mom is having. Wish I could have included them all in one post to save you the trouble. I guess the first couple of cycles of chemo are the ones that are the scariest -- and right now, she's really scared.

Was wondering if any of you have experienced this.....by way of background, my mom sleeps long hours because of her depression and because of all the psych meds she's on, etc. She's already on a sleeping pill called Imovane. I've seen that several of you are on Ativan. Given my mom's drug tolerance, Ativan would be like a fly on an elephant's back for mom. Anyway, ever since her first infusion, she's been sleeping less and less each night -- no biggie because she was sleeping too much anyway. The night before last night was a bit worse and then last night was very, very bad. Even with the Imovane, she didn't sleep a wink and said she's never felt this way before. She said was was extremely agitated and thrashing around, etc., etc. And today she's so exhausted that she's slurring her words. She's seeing the oncologist tomorrow for blood work because second infusion is on Friday. I've asked her to be assertive with her oncologist re: getting something EXTREMELY strong to sleep because she says she can barely stand up and won't be able to tolerate chemo if this keeps up. She used to be on halcion (a very strong sleeping pill -- don't even know if they still prescribe it). But she definitely needs something of that ilk -- something that strong.

I know chemo speeds up your metabolism, so I suspect that this agitation and sleeplessness is somehow related to that. Would love to hear about your own experiences and if you felt (feel) the same way mom does, what drug was prescribed for you.

Many thanks and once again, sorry for the trouble.

Take care,

Kim

[Muriel]

Kim, I don't remember all of your mother's symptoms. Wish you would post a history in your signature. Maybe Ned will tell you how. So, let me tell you what people I know get with chemo and how it works.

For NSCLC, chemo is usually carboplatin and taxol or gemzar and cisplatin - one platin and one of the other two (taxol or gemzar). Sometimes they get a third chemo, too. The chemo "cocktail" often includes anti-nausea meds that may last for 3 - 4 days or last only that day or so and are supplemented with additional anti-nausea meds as needed at home. Decadron, I've been told, helps cells absorb the chemo "poisons." Benadryl or some other anti histamine is often given to help avoid a reaction to the "poisons." After those are infused, the "real" chemo drugs are given. With some drug combos this can take 5 hours or more.

Some of these things may be your mother's problem(s): Some anti nausea drugs can make you sleepy. decadron or a like drug makes it difficult to sleep. (I cleaned the basement the day after chemo once and then slept for a couple days). Some anti-histamines cause drowsiness, too. Some (all???) "anti-cancer" drugs can cause nausea. People react differently to each of drugs in the chemo infusion.

It's important to eat something. I liked mac & cheese and ice cream - not together, tho. Water is extremely important. Encourage her to drink as much as she can. Also, stale gingerale can help nausea. My friend fixed this for me: Add about a tsp. or so of sugar to the gingerale. The bubbles go away and it tastes really good.

Well, I wish your mother luck with all of this. Keep asking questions and let us know how she's doing.

Muriel - a 7 year NSCLC survivor.

[Kimfish48]

Thanks, Muriel. And apologies that I don't have my mom's history posted. I just joined and things are going at breakneck speed, but I will have to learn how to include that history. Bottom line:

- my mom -- 70 years old; not in good shape; severe depression and other mental illness issues.

- very aggressive colon cancer last year and she beat it

- then through CAT scan follow up on colon cancer, they found a mass on her lung

- initially they thought it was colon cancer that had moved to her lung which gave her about 6 months to live

- Much to everyone's surprise, it was a brand new primary lung cancer (lousy luck to get 2 serious cancers in one year, but she did smoke for 50 years so it wasn't a huge surprise).

- Staged 3a Squamish cell.

- Just had a lobectomy few weeks ago -- removed lower right lobe of right lung. Unfortunately trace amounts of malignancy in several lymph nodes -- hence the Stage 3a diagnosis.

- A few complications with surgery and 7 weeks recovery at home (in central Ontario)

- First chemo infusion last Friday of Cisplatin, Vinorelbine, and Vinorelbine Tartrate

- Went up north to be with her at infusion and spend several days after that

- She's ALWAYS been nauseated for years (her Achilles Heel), so they've given her the gold standard in nausea drugs. About 4 different ones and then another one PRN

- Much to our shock, after the infusion on Friday, she's been pretty darn good. Virtually no nausea (the drugs are amazing), a bit of fatigue, and still having some pain (particularly nerve pain) from the original surgery

- No huge problem eating either -- Carnation Instant Breakfast, Ensure, fruit cups, occasionally a small portion of a normal dinner, popsicles, gingerale, and more

- Next infusion (of the two "V" drugs only) is on Friday

- She's having 4 3-week cycles (so 1 month total).

- Only other side effect was that she found she was sleeping less and less as each day went by after the infusion.

- Culminated last night into a full on thrashing, agitated state with absolutely no sleep. I know chemo increases your metabolism, so it must make many things in your body race (your pulse, adrenaline, etc.) so I'm thinking that might be it.

- She's seeing oncologist tomorrow for blood work and is going to ask for a stronger sleeping pill or for something that addresses this agitation and sleeplessness (because it really weakens her for chemo).

- I'm going to call ahead tomorrow and warn nurse of this new and weird symptom that needs to be treated (although I realize everyone reacts differently, everyone is on a different drug, etc.)

And thanks for that interesting hint re: the gingerale!

Hope that background helps. All in all, she breezed through her first week until last night and today. However, I know chemo is cumulative, so her symptoms will probably get worse and she's prepared for that. I just hadn't seen anyone complain about sleeplessness and agitation, so thought I'd throw it out there.

Thanks for responding and caring, Muriel!

[Joppette]

Kim,

Hi there! It's the Decadron steroids. I was manic and couldn't sleep in a major way. The ativan helped, but like Muriel, I got some big cleaning projects done because I was so hyper from the steroids.

Like Muriel said, they start your Mom with a Decadron, Benadryl, and anti-nausea meds. Then she gets the chemo. The benadryl made me sleepy, but the Decadron made me hyper as heck at the end of the day.

So I didin't sleep for a couple of days and then I crashed and slept like a baby for a few days. That was actually a good thing.

Judy in MI

[Muriel]

I always felt the sleeping was a good thing. Even if you're not vomiting, even slight nausea can be really unpleasant. It sounds as tho. everything really is going just fine for her. Do make sure the Dr. knows about the sleep,etc. problem tho. Maybe he can cutback on the decadron or add something else to help her sleep.

It's really scary - as you now know - when you first start chemo. You just don't know what's normal and what is a problem or what might happen next.

I was 64 when diagnosed (June 2003), so was somewhat younger than your mother. I didn't start chemo until 2.5 months after surgery, so it was much easier for me. At 3 - 4 weeks, I think I was still taking pain meds. Give her my best wishes.

Muriel

[Kimfish48]

Muriel, thanks so much for your kind words. Mom is definitely going to talk to the oncologist tomorrow -- you can't heal and tolerate chemo if you can't sleep. Even if it is temporary. I really appreciate you sharing your experiences with me.

Mom is definitely starting chemo earlier than the average person, but I'm going to take that as a good sign -- she may be staged at a 3a, but the tumour was reasonably contained and we believe the trace malignant lymph nodes are on the same side of the chest, which gives her a good, fighting chance. As a result, I think the oncologist wants to get fighting those nasty little cancer cells asap.

And mom would completely agree with you re: the nausea. For some reason, she's suffered with it all her life. When she goes shopping, in crowds, when it's too hot, in the car, etc. So we really expected horrible nausea this week. Yet she did really, really well until last night. So as you and Judy have said, those nausea meds must be incredibly jam packed with steroids.

I totally agree with you re: chemo being so scary because everything is new and you don't know what's normal and what's not. To be honest, that's where I get frustrated with my parents. I need to know EVERYTHING. I pick up information like a sponge and I research, research, research. I believe information is power and god knows we need as much power and control as possible over this disease. To my frustration, my parents are different. They take it day to day. But that leaves them open to the kind of fear and concern mom had today because she didn't know her reaction last night was "normal." In other words, it leaves them open to being "blindsided". To be honest, I've always been the assertive one in the family and have always been her medical advocate. I think they just assume I'll do the research and reassure them and I always do. Sometimes it's a big burden to bear and sometimes I get frustrated because they could do it themselves and they're not even interested in reading other people's experiences. But to be fair, they've only known about the pathology for 3 weeks or a month and I've had the pathology report for 2 months. That was also a heavy load to carry when they knew I had it -- yet they didn't ask any questions. They just waited for their meeting with the oncologist. Anyway, I guess everyone handles this situation in a different way and I need to respect how they want to handle it.

Again, many thanks for your note and kind words. I will definitely give her your best!

Bye for now,

Kim