Starting Chemo, November 2013 Group

Wallymama and Ellen, I hope I didn't seem insensitive with my comments about your work-related posts -- I know your work days are not 8 hours of sunshine and roses, I'm just envious that you're both back to that part of your lives .

Waiting for my turn in the BGC......

Pat=  LOVE IT!! I want one too!  Glad you got to get out and feel normal and good again!!!  Wishing you well with the radiation to come.

LOVED the rose and sentiments Paulette!  And tips for these hands and feet...I am currently in couch mode with ice and socks and lotion for my heels...they are the reddest and hot to touch!  Hurts to walk!  Hands were peeling after the 3rd round, so that's old news...and they aren't hot and red...hope it goes away tomorrow I have to get bloodwork and wear shoes!  owwww!!!

Planning to go to matinee with my husband tomorrow before bloodwork, hope my energy can do it...was feeling dizzy and weak today...

Want to fast forward to next month and feel good!

good evening everyone.  I am sorry to hear some of you are suffering with side effects, and I hope you get some relief soon. Virginia, shoveling and this bitter cold just makes everything worse!

Pat, you are right about getting out and joining the world.  This morning I had to run a few errands with my daughter.  We shopped at the mall and went to lunch.  It was good to do normal,things for a change.

I am trying to sleep but my body can't decide if it is hot or cold!

Pat - Love the scarf - Any adornment to make the old noggen feel half normal is a good thing!

Bec /Audrua/others- Great notes regarding the effects of taxotere/taxol - It is appreciated by those of us who are next up. And thanks for feedback regarding leasons. They sound like they are 'typical'.

Question for the group - How much are people sleeping and how are you sleeping? I am sleeping about 12 - 16 hrs/day and when I sleep its like I'm in a coma - very hard to wake. My blood counts are low, but not transfusion level low so I would think that is why I am so tired, but was wondering if others are experiencing the 'coma' effect I seem to have.

JAB

Hi --

Quick questions re Taxol, then I'll get caught up after the work/school rush and a fun dentist appointment:  Has anyone read anything about weight gain with Taxol?  It seems to me that I've read somewhere about fluid retention, but now I can't find it.  Second, with my my premeds at yesterday's infusion, they skipped the Benedryl and Pepcid because I "did so well with the last two infusions."  Well, I've been sneezing a lot since about 4 this morning.  I don't feel like I have a cold at all, and even when I do get a cold, sneezing is not usually part of my repertoire.  Do you think it's related to lack of Benedryl?  

Thanks...back later.

Jab, yesterday I got up,early and spent most of the day shopping at the mall. I was so exhausted when I got back yesterday afternoon, and I tried to nap but I couldn't.  I have never been a good sleeper but this experience has made that worse.  I cannot sleep without Ativan and even then I wake up sweaty.

Bec, I could be wrong but I think the benedryl  is for a rash type side effect. 

Pat, that scarf is a really nice idea.  I can't wait until i see some hair coming in.

My husband wants us to spend a few days in Florida when I am done with chemo.  This winter has been especially harsh.  So far with taxol, SEs have been minimal. I can't see going down there with cracked heels and hands.  We would be using our points and I don't want to waste them if I am going to be miserable. What do you think?  

Just got home from my 1st taxotere/cytoxan combo infusion. A little disappointed that they didn't dose me up with Benadryl -- nothing, and I mean nothing, makes me sleep like Benadryl does. Oh well...I have my own here at home. :P  The nurse practitioner (who has been through breast cancer herself,) personally thinks I will have an easier time with this than I did the adriamycin/cytoxan. We shall see, but so far most of her predictions have been correct. She also told me that the weird hoarseness I've been experiencing over the past week or so is yet another known AC side effect, just one that not everyone gets so it doesn't get mentioned so much. 

I'm going back tomorrow for a blood transfusion; hemoglobin was down to 8.1, so we decided we might as well go for it. 

Jab: Re: Sleep. This whole breast cancer thing has completely ruined my normal sleep schedule. I've always had something known as "Delayed Sleep Phase Syndrome," which basically just means that "normal" sleeping hours for me were from about 2 in the morning until 10 in the morning. Now I get sleepy soon after my husband goes to bed, am often asleep by 12:30, usually wake up around 4 or 5 in the morning cuz I have to pee. May or may not go back to sleep THEN...I try to, but it doesn't always work. If so, I wake up again around 7 when husband leaves for work. I usually stay awake then, but not always. A nap MUST happen sometime after lunchtime, regardless, and I sleep about 2 hours then... sometimes another nap around dinner time. So yeah, basically I'm getting my sleep in stretches of less than 4 hours each and my body doesn't know when it's supposed to be sleepy and when it isn't, and it doesn't like to go more than 6 hours without napping....if I don't nap I not only get fatigued, I get emotional and depressed and teary. Then when I *do* sleep, it doesn't feel.....right. My dreams aren't right anymore, and sleep feels like a hot and uncomfortable place instead of a restful and comfortable place. (That part of it is most likely anxiety related.) 

Funny, the BEST sleep I get is on weekend afternoons when my husband is at home and awake. Security, I suppose.

Jab -- Love your Freudian (or Fraudian haha) slip there. That was awesome.

What I have found that does help my sleeping is to, unlike the common advice about routines, switch it up a bit.  Somehow if I sleep *differently* I sleep better. So this time I might take an ativan before I sleep, next time, I might take a little swallow of children's benadryl, the next time, a bit of melatonin, the next time just wait til I'm sleepy enough to drift off on my own. I switch blankets, from my very heavy comforter to a lighter but very warm fleece blanket I got for Christmas. This time I might let the dogs sleep with me, next time I might shut the bedroom door and banish all the animals from my room. Sometimes I'll sleep with both lamps on in the room...other times, turn one, or the other, off. (I have NOT wanted to sleep in complete darkness since I was diagnosed; that's something I plan to deal with when I'm done with treatments.) We have a spare room that no one ever sleeps in, and I've been considering spending a night or two in there, just to see if that shakes things up a bit. Sometimes I leave the tv on and the volume up just a bit (Turner Classic Movies is  great channel for this.) Other times, silence.  I seem to sleep best if I don't get into a  sleeping rut --  it confuses the dreams, I think.

I'm REALLY hating the dreaming thing. I was a lucid dreamer before all this, but apparently I cannot dream lucidly with drugs in my system. Wondering if I'll *EVER* have lucid dreams again.

smrlvr, Audra, lisa, jab: I didn't get my period after chemo #2, so think I entered my chemo pause with its pluses like no constant hormonal roller coaster, PMS or cramping, but on the other hand minuses like night sweats that disrupt my sleep. I keep getting up sometimes 3-4 times a night to change my clothes and use the bathroom. Many times I can fall back to sleep quickly, however once in a while I just lay there half asleep, but not fully awake to get out of bed for hours. When I get to this stage I just do my stretching exercises to pass the time. After I tire myself out, and feel more relaxed I usually fall asleep faster. I also end up drinking a cup of hot tea, warming up my magic bag and then going back to sleep. I just started to use Ativan (1 tab) right before bed time to see if that helps with a better sleep. Before chemo I used Melatonin (1-2 mg) but stopped because it's an antioxidant that can counteract with the treatment. I plan to use it after when I am done with chemo, because it lowers estradiol / estrogen levels and my tumour was ER + so that would be beneficial.  

hi....I have been in a coma day which goes between no sleep for days.....cant even think. Fell yesterday and know I broke my foot...meds and sleep....sleep and meds....lol...

My doc said I could go ahead and use the melatonin sometimes and not worry about teh antioxidant effect because I'm not using it continuously, and I use really tiny amounts of it: We split the pills into four pieces and I take only one. It really does NOT take a lot of melatonin for me to get knocked out. So....probably no worse than my coffee, since I *have* been known to drink an entire pot of that in a day.

Honestly it's the benadryl that probably gives me the most peaceful sleep.

Switching up the sleeping "habits" is extremely easy for me because my husband and I sleep in the same room sometimes, and sometimes we don't. My sleep schedule has always been so "off" from his that we got into the habit years ago--before we were married lol--of spending a goodly number of our nights "apart." 

I've always found that the worst thing you can do is lay in bed and TRY to sleep. If it's not working, it's not working. Read a book, play some games on my tablet, do something else until I simply cannot hold my eyes open any longer is what works for me.... trying NOT to go to sleep, I guess it sort of is, really.

When all else fails, I can turn on one of the cable news channels--CNN for me, but any will do---and play this little game. Close my eyes. Listen for a word that begins with the letter "A." Once I hear one, I listen for a word that begins with the letter "B." And so on. This turns the tv sound into a true droning sound, and I stop listening for *context* altogether, and am only listening for the next word I need. I generally fall asleep before I ever get the letter "J."  Seriously. I have several of these little "make myself fall asleep" games, but this one has been my go-to game here lately because it works quite well.

My hot flashes....if that is indeed what they are...really haven't involved waking up covered in sweat so far. I just wake up because I'm feeling overheated, and start removing clothes. I'll start out cold and wearing sweat pants, house socks, a sweat jacket, and a warm toboggan, along with tee shirt and underwear. Sometimes by the time I'm done I'm wearing just the tee shirt and underwear. This kind of sucks when I wake up again later, half naked, COLD, and needing to pee.  The joys of this just never end, do they? :P

I've felt better tonight than I have for any other chemo-night. Dunno if it's a harbinger of good things to come, or the calm before the storm. I'm hoping for the former.

So now I have to update what I said last night about hot flashes: At some point in the night I woke up and was hot enough to have to take off the (very thin!) little hat I was wearing, and it's STILL soaking wet, so my head was covered in sweat, if nothing else. Still wearing all my other clothes though...hmm.  Actually it *could* be that I was simply sweating out the fever I'd had for the past couple of days.

Otherwise, my first night on taxotere/cytoxan was a huge improvement over any of the first nights after A/C. I fell asleep at the crazy hour of 10:30 -- hence why I am sitting here typing at 4:51 in the morning -- but it was a pretty good sleep. I feel rested and refreshed. Last night didn't involve ANY nausea or heartburn or distress of any sort---AC always did on the first night. Of course, I'm sure it'll get worse when the steroids wear off, but for now, I've got no complaints.....and I get THREE weeks instead of two weeks before doing it again.

Oh and this is feeling good despite my hemoglobin having dropped to 8.1.  I'm off this morning to get my neulasta shot and then to the hospital for a blood transfusion. I may come home able to leap tall buildings in a single bound. You never know.

Yesterday, by the way, we completely forgot to put the EMLA cream on my port. My husband felt awful about it, like it should totally be his job to remember. Have I ever mentioned how awesome he is? In any case, as it turned out it was no big deal. The nurses even asked me if I wanted them to put some on and then wait a little while for it to take effect and I'm like.... my rule is, so long as it's not going to hurt like a biopsy, I'm not concerned, and I could immediately tell which nurses had never had biopsies themselves (they laughed,) and which had (they made comments like "I heard that," and "Good rule!") lol.  As I said, it was no big deal; accessing the port without numbing cream felt pretty much like getting a shot even though my port was stubborn as ever (we have to recline my chair alllll the way back and then I have to turn my head as far to to the left as possible to get blood from it EVER.) Afterward, during chemo and such, it stung a little bit once in a while, but not even enough to cause my eyebrows to lift. 

Today for the blood transfusion I reckon we'll remember the cream though. Accessing the port two days in a row could, I imagine, be a little sore (though it doesn't FEEL sore right now.)

@Phebe I had HORRIBLE mouth sores after my first two chemos and chewed ice both times. My second two chemos, we did something different, and it worked; I've had exactly two mouth sores since then, and one of those was gone within a day. Here is what I did:

#1. Instead of ice, I slurped a chocolate milk shake constantly during the entire infusion. It might not help but it's certainly more pleasant than ice.

#2. I took a quart sized plastic bottle and to it I added 4 cups of water, 1 tablespoon of baking soda, and 1 tablespoon of salt, put the lid on, and shook til well mixed. I rinse with that as many as 1 times per day. I keep it in the bathroom and rinse with it every time I walk into the bathroom, including when I have to go in the middle of the night, and *especially* right after I've eaten anything.

#3. As much as possible, I stick to a fairly bland, non-spicy diet. The one time I did get mouth sores after starting this plan was when my tummy was feeling a little TOO good and I got adventurous and on night 1 ate some spicy crab cakes, and on night 2 ate some General Tso's chicken from the local takout, and on night 3 ate tacos that my hubby had made and had added extra spicy picante sauce to AND he put black pepper on the tomatoes (wtf dude?) After that I DID get one sore on my inner cheek, and almost got a sore on the side of my tongue, but both went away really quickly.

Hi ladies,

It's my day #4 after my 3rd chemo. My biggest SE this time round is an overall DRYNESS plus a bit of nausea (prescription meds: Emend, Decadron, Zyprexa) as well as Neulasta joint/ bone pain (Aleve 1x1 + Claritin 1x1). The dryness starts with my nasal passages, then it is effecting my voice that is currently horse and then it continues with the lining of my digestive track giving me the big C. For my mouth I'm using Biotin toothpaste and a baking soda / salt rinse. For the C part I am increasing fibre in my diet like dry prunes, goji berries and high fibre cereal. As far as my dry and bloody nasal passages I use NeilMed Nasogel spray. I experience dryness also on my skin especially my finger tips that are cracking and my face that constantly needs to be moisturized. For both my face and hands I use a Canadian product called Boreal Body Lotion by Green Beaver which contains Labrador tea and shea butter. For the cracked finger tips I use Polysporine for kids. I am also putting shea & cocoa butter on my scalp. And did I mention that I am drinking a lot of fluids?

Any other ideas for dryness?

Paulette: So sorry to hear about your fall. How is your foot?

Virginia: I am glad that you are doing much better with Abraxane. Are you going to do rads this time round?

Jab: How are you feeling after the dog attack? Getting better? What did the DR give you for that?

Amazon- no rads for me - I had them on 2007 and the cancer came back in the same breast - so just my implant exchange and I am done.  I will go back on tamoxifen for 5 more years even tho the cancer this time was triple negative - my first cancer was triple positive so she sees a Bennie in going back on the Tamox.  I am fine with it bc it scares me to do nothing at all.