Starting Chemo, November 2013 Group
Comments
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Mikesgirll - my first AC took about 2.5 hours. My next infusion is tomorrow and I am going to ask that they slow down the cytoxin. It gave me an awful headache the last time. My headache was worse than the nausea!
Also, they didn't use a drip on me for the A. The nurse pushed it through with a big syringe. Did anyone else have that experience? -
My first TC took me 3 hours. That was without blood work. -
smrlvr, I didn't really think about that being what she was doing, but yeah, the nurse sat and held the thing instead of putting it on the drip. I figured she was just observing me very closely to see if the stuff was going to make me explode or melt or something.... -
Hi all,
I've decided that Day #6 is just not going to be my day, but that's okay! If I only have to write off one day every two weeks -- which has been the case so far -- then I'm good. I did go for a walk this morning, and even though it made my mind feel better, it wore my body out. I can't wait for it to be tomorrow!
Mikesgirl, I'm doing dose dense AC, and my treatments have been about 3 hours each time. I get my blood work and doctor visit done the day before, so the three hours includes checking in, pre-meds, pushing the adriamycin, then the cytoxen at the quickest drip. (I've been able to handle the weird sinus pressure that comes at that rate so far.)
On the subject of time, I'm told my first taxol will be 6+ hours. For those who've been down that road...why??????
I agree with Audra about the scene in the infusion room. Ours is organized into many mini-rooms of four patients each, all facing each other. You can close the curtains around your chair, but I feel like that would seem a bit antisocial! My husband and I were pretty chatty with everyone the first time, and I mostly read magazines and did crosswords the second while my husband went off to schedule all my taxol appointments. Last week I was glad I brought my laptop because the guy across from me was buried in his, and the two other people were trying to sleep. My mom is coming with me next time which should be a hoot for all involved!
Welcome to everyone new! This group of women is the best. -
Amazon, so glad you got a temporary parole! And real food! Yippee! Also, thanks for the great comeback. Beyond the thoughtless cousin, everybody does seem to like to say we look good. Mostly it's just a little irritating, but when you really don't feel good, it's kinda demoralizing, as if how we feel is irrelevant.
Today is a low day, I'm fighting a cold and feeling sorry for myself. We get to do a little of that don't we?
Continuing with my science experiment. Yes, I have hair. No, I wouldn't appear in public with what's left! -
Hugs Pat! I'm having a low day too (TY for commenting before). I'm interested to see how much hair I lose over night... Might not be able to handle the shedding and will most likely cave and have my sis shave my head again...
Here's hoping for a better tomorrow
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Boy am I glad that the center where I get my infusions has private and semi-private areas with the chair facing a window that looks out on a rooftop garden. Actually a quite pleasant space to visit with the person who drives me to Denver.
When my husband was getting infusions locally it was a totally different story. That place felt like a cattle call, with large groups ushered into rooms with lots of chairs. His first time there, the lady siting with the guy next to him talked loudly for an hour about her irritable bowel syndrome. That was followed by another women talking about how her husband had all but abandoned her because of the cancer. Really depressing. We learned fast that earplugs/headphones were a necessity!
Ellen
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Lisa137 -- my "bluegrassharp" username refers to the fact that I play an autoharp (you can see part of it in my avatar) in various pick-up bluegrass gospel groups in the Loveland/Ft Collins area. When had my outpatient port surgery, I took my harp with me to help my surgeon avoid placing the port where it might hit the instrument
I also scheduled my chemo treatments on Mondays to maximize the chances that I'd feel good for weekend jams, and church, too. (So glad to be retired before the BC challenge hit.) Have you been able to continue to play bass during/after surgery, chemo...? Music is truly healing! -
My chemo infusion area reminds me more of a giant hair styling salon than anything else, with maybe as many as eight aisles (or more? I'll count next time) of chairs. Each aisle has two rows of chairs, facing one another, but there's enough space between them so that we felt kind of "intimate," despite the large size of the room and the possible capacity. Close enough so we *could* chat with our neighbors, but far enoough away that we could lower our voices and be on our own, too. All the recliners are this pale powder blue color, which is probably why it reminded me of a hair salon. They've got a nice selection of books though, and each recliner has a TV of its own, with its own remote, and they've got coffee and snacks, etc., and the nurses go out of their way to make sure you have anything you might desire, and they were super nice to my husband, so all-in-all, I felt pretty comfy there.
@Bluegrassharp: That's so cool! We don't see the autoharp played much in my area (eastern North Carolina,) but it, and the dulcimer, are more popular in the mountains, so we get to hear them when we go to festivals and such in that area.
I haven't played since my surgery--had a while there where I wasn't supposed to pick up anything as heavy as my bass, haha, and then a little while that it just would have been impossible if not inadvisable---I had all the lymph nodes removed from my left armpit, so, reaching that left hand up high enough to note the bass would have been a painful stretch. I could play now though, and hopefully will get the opportunity to some during the Christmas season. So this week one of my goals is to pick up the bass and play along with some CDs (or my husband if he's handy and feels like playing one of his instruments) because at this point, my surgeon actually said that working my left arm that way would be good therapy. (Although I sincerely doubt he's ever played upright bass, so I'm not sure how he could know that lol.) Someplace on youtube there's a video of a local tv show we did with the band we used to play with....if I can remember to try and find it, I'll send you the link. Remind me: I forget EVERYTHING lately. You can probably relate to that :P
I didn't have a low day, but I did have a fairly "worthless" day, meaning, I personally, was fairly worthless. After all our traveling around to do Thanksgiving first at my husband's parents' house on Thursday, and then my mom's house on Friday, we spent yesterday cleaning our house, and I woke up TIRED this morning. My husband, however, got up and cooked yet ANOTHER turkey--just a little one---and some stuffing and gravy, and I nuked a can of lima beans lol, and we had leftover pie (pumpkin and chocolate) from my mom's house.....and then just my husband and I and our "kids"--- our two dogs and our cat---had a very relaxed and simple Thanksgiving Sunday dinner of our own, and it was the best, because it was right in our den and I was fresh from a shower and wearing my pajamas and comfortable as could be, and able to take a nice nap afterwards. I think we may make that a Thanksgiving weekend tradition; it was NICE having something just for us, with no stress or tiredness or need to get operate on someone elses' schedule. So yeah.... I basked in having dinner cooked for me, and napped, and made a nuisance of myself on Facebook, and generally accomplished nothing worthwhile.
It was a good day. -
Going to Target to see about scarves and hats. I take the wig off as soon as I get home, so at home I just want something comfy. Today i felt less achy than the day before, so hopefully tomorrow will be a good day! -
I am glad I am not the only one that has had "boob" pain. It feels like twinges sometimes to a heaviness at other times and usually a few days after chemo. -
@Bec: You know, I think that this morning I ws posting something at the same time you posted your rant, and somehow, until just NOW, I missed it -- page didn't refresh, maybe? Anyway...
That has to be one of the most beautiful rants I've ever seen, and I've seen a LOT of internet rants in my time.
And just so you know:
I'm tired of waking up just not feeling like ME, and I'm right there with you on that having the stomach be JUST queasy enough to not be right, but not queasy enough that I really want to take something to make me feel sleepy just so I can EAT...like I need to eat more at this point anyway, gah!
I am absolutely tired of the icky tongue and the fact that IT is the reason my diet coke doesn't taste good...no big deal except I'm out of everything else right now except water and dammit I don't WANT to drink water right now. I want to drink something that tastes good.
LOL at the difficult to peel clementines. I got grumpy this morning because I was TRYING to put the salt on the spice shelf, but when I did, the pepper fell off....when I put the pepper back up there the paprika fell off, and then the meat thermometer AND the salt fell off, and I said a couple of loud and very un-lady-like words that brought my husband into the kitchen wanting to know what in the world I was doing. "Bitching," I said. "I am bitching." "Oh," he replied. "Carry on then."
I'm sick of not having removable body parts, but I'm not quite sure what to get and I'm tired of being immobilized by not being sure what to do....not just in that situation but EVERYTHING. That's not ME! I'm impulsive, I'm decisive, I jump into things and worry about the consequences later..... but these days I stop and think and wonder "should I take a tylenol or an ibuprofen," and spend an hour with a headache pondering which medication to take because I can't freaking make a decision. Gah!
And what IS it with HGTV anyway? It's like the only thing on tv that I can really watch because I don't have to actually WATCH it for one thing, and for another, I can mostly be pretty sure that they aren't going to do anything that upsets, stresses, or depresses me, but they seriously need some new episodes of some of these shows. I can only watch the cute Irish couple purchase their new home in Spain just so many times before I want to strangle them both and tell them to stop being so picky.
And on and on.....and I'm only on my first week. Just *think* how grumpy I'm going to be when I get to where you are! I'm going to be intolerable, insufferable, and probably quite detestable.
It was a beautiful rant, and I'm actually glad I saw it NOW instead of earlier, because NOW was when I needed it; now was when I could read it and go "YEAH! EXACTLY!"
So as weird as it is, thank you for being cranky. I needed that.
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Hello, I am with the December chemo board. I thought that I was going to start in Nov., but too soon after surgery. I was wondering if you ladies could give me some info. on the AC chemo. I have my first chemo on Thurs. I noticed that Bec65 wrote that she is having dose dense treatments and she feels it in her sinus area. I think that I am having dose dense as well, I need to check. Also, someone wrote about headaches from it. Any recommendations and info. on this will be greatly appreciated.
Kim -
smrlvr and lisa - the Adriamycin is given IV push (in a bug syringe) because of the viscosity - the way the dosage comes (probably not pre-mixed) means that they have to inject it in because it is too thick.
On the Taxol and first time infusion - they are checking for reactions, subsequent ones should go faster if you have no problems.
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Ok yall...I know we are getting big.....and busting at the seems cause EVERYONE here ROCKS!!!! but....GeeeOssshhh....I take a day and do really odd nesting cleaning to my house...for the first in WEEKS...and yall....chattttttttaaaachaaataaachat!! lol! Give a girl a break....OK...NOW THAT IM up at stupid 3am....lol.....not even steroid induced...yet...coming in about 6 hours..so BEWARE! lol......What a bizarre day!I cant wait to read what yall been going on about! Give me a few....and MAYBE I can read them before I get so brain fogged......before my brains become....that nasty smell we keep smelling!
Hope and pray everyone is well at this hour...EST 3:43 am~ Anyone else up! or perhaps our Aussie friend is on during her daytime!
Love!
T~ -
be warned nite time rambling!!!how many of us does this!!????? !arrrrggggg....be warned and fast forward!!!!!...!up at 3am...tis 5am and cant sleep ....glad i can just speak to the air and you can jump over me!!!!..feel asleep at 11pm...weird for me! now I'm awake...time to stop and listen to the small tinkllng of life!!!!!!!!! its soooooo foggy outside....can't see across the yard! Sweet dew dripping off the trees! Gonna spend time reading what yall wrote today while I was crazy nesting before next chemo dose! I guess won't sleep much with the dex steriod dose staring in few hours! so....if you choose to yall will be encounted or enchanted by my rambling notes to come! lol...if u don't want to enjoy my quiet rambles jump off now!!!!! cant do new paragraph on phone w/o it going nuts!.....so bear with till i go inside w the computer!!!!Am not looking forward to round two of chemo. ... but like all things in life ....shoud be another interesting experience! so please excuse my ramblings! ! ....kinda neat how beautiful the fog is!!!!! crickets chirping among the dew drops....if I could paint a picture you would find it quaintly refreshing!....quiet sounds...my puppy sniffing at the odd smells of the nite...drip....drip...drop..off the large oak trees! a bull cow mooooos in the distance as the world sleeps. Crickets chirp....among the dripping fog. a distant frog makes its mating noise......quiet peace before the dawn....lol...ok...I boared u enough! gonna read...pray for you all and send my love to each of you! peace for this week of CRAP! We will overcome and learn to enjoy every peaceful moment! just random thoughts as the newspaper deliverer peeps throw out the daily newspapers.... fog is becoming a creature...drifting through the night....cutting off all vision....as the rooster crows summoning the daylight....lol...funny how when death attempts to shut out the light if life how you focus on the small things of life!!! to all....look upon the little things and ENJOY! !!!!! HAPPY DAY TO EVERYONE! !!! -
kjfromca - not everyone gets the weird sinus feeling with Cytoxan. They can run it a bit slower, but since that did nothing for me they told me I could take Claritin before treatment. Wait and see what you reaction is if any, if it is really uncomfortable the medical staff should be able to do something about it. Do not take Claritin without asking your MO. -
Yes, yes, yes. My beloved coffee tastes so weird I've stopped making it. This morning I made a cup of green tea. DEVINE!!!
Joy in the little things ladies!! -
Green tea, huh? Hmm. I'll try that; I know we have some on hand! -
Lisa, you are the best ranter ever! It felt so good to laugh and cry at the same time! (I am going to laugh FOR DAYS about your take on HGTV house-hunting whiners!)
Thanks, SpecialK, for the taxol info. Can't wait! My nurses at the infusion center also told me that adriamycin is pushed b/c of its toxicity. Something about how if any "backflows" onto skin, the skin is killed. This definitely made my husband scoot his chair back.
I hate to admit it, but I know I can here, that I'm glad my kids and husband are back at school/work. I'm feeling like a couch day without anyone fussing over me.
Pat, yes, we sure do get to have low days! How are you today?
Wallymama, my husband made me coffee this morning that actually tasted good (he's such a gem!). Now, of course, the fat from the milk is making my tongue taste scummy, but it was good at the time. Thanks for the tip on green tea.
I'm going to call my mom now. I'm sure she's been worried sick since my husband told her yesterday that I was resting in bed. I NEVER rest in bed.
Good vibes to everyone for an okay day! -
@Bec I try to practice my ranting regularly. Honest, I do. I find that when things build up, if I can bitch about them in a *funny* way, I wind up actually feeling better about them. That's got to be better than letting it build up and depress me, right? And I must say, you really are a first class ranter yourself! Keep at it. It was awesome.
Also on that note, I would like to just comment that I truly hate the taste of Biotene. Original Cool Mint my butt. My maalox tastes better. -
bec - that is another reason many oncs prefer a port for Adriamycin - it is a vesicant and can do serious damage to both skin and veins. If anyone receiving in this group has any stinging or burning sensation while receiving it, make sure you speak up!
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Thanks about the Biotene Lisa. I won't bother with it. (The gum isn't too bad.) Actually my taste buds seem to be ok (except my coffee..sigh...). It's smells that are making me batty. The dogs were just bathed yesterday and I an smell them today. My hubby's soap gagged me. I walked outside and smelled cinnamon (made me sort of hungry actually). Always had a good smeller but this is ridiculous. -
The biotene would probably taste good if I werent' on chemo tho. I mean... DIET COKE tastes horrible to me right now, and I have no desire for coffee. The only things that taste like they are supposed to are fruity/tangy things, things with tomato sauce, and chocolate. -
That's funny. I don't even like chocolate and I was actually thinking about stopping at Godiva on my way to the doc's!! On the plus side (and that would be ALL my sides) I've lost 7lbs this week. Not sure if that's a good thing or not really. But I'm still taking it as a positive. The little things. -
Hi Everyone!
Have anyone returned back to work while taking chemo? And if so how did you do going back as far as feeling well,and how you felt about your appearance especially if you lost eyebrows, cause hair you can always cover up? -
Lissy2304- Another place to go scarf/hat hunting is Charming Charlie. .
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Or you can get a free scarf here: -
I've now found that Diet 7UP doesn't taste *awful.* It's not good, but it doesnt' gag me. So that's something. -
I have gone back to work. I went back 1 week after chemo and will work up until my next one on Friday. I plan to work as much as possible. I'm not tired at all, just was tired and the big D the first week then back to life as normal, I go and do everything I did prior to chemo, just bring hand sanitizer everywhere. My hair started falling out on day twelve and I wear hats and handkerchiefs.
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