March 2011 chemo-lounge
Comments
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Shansen - VERY IMPRESSIVE - writing from the chemo chair! Means you are doing great. Drink in that lovely chemo, it is working it's magic and killing all those icky kanser cells. Remember to layer in those drugs...at even a twinge of queasiness. The coconuts are a bonus, by the way, in puking. You can rest those little babies right on the toilet and not even feel them. Then, call Maria to hold your hair!
It's all good! Hang in there, sisters!
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Yes, fortunately I managed to stop myself from saying "are you freaking crazy?" when my DH told me about his MIL. I said instead, "that was nice of her" and changed the subject! I'm glad he's going, I hope I manage the stress appropriately and don't take it out on him. I've done that before and that makes me feel even worse, especially when he tries so hard to be everything I might need. Think we'll take the laptop and some DVDs to watch during treatment. I think it would be hard to concentrate on books. Next weekend starts the NCAA basketball tournament, so that will be fun to watch.
Love the coconuts/tupperware discussion, girls! Also, found another use for them. i was reading in bed and just rested my hardback book on them, couldn't even feel it and it was the perfect distance away for my nearsighted eyes. DH and I got a kick out of that.
I'm glad most of you are doing so well and hope those of you that aren't get relief soon. I am going to play ostrich this weekend, put my head in the sand, forget about cancer and chemo. I'm going to get a big dose of all the fun stuff next week, so figure I might as well take a vacation while I can. The weather is gorgeous, I get to ride my horse for the first time in weeks, and so I'm going to focus on positives. I'm going to cook up some good stuff for the family for the next couple of weeks, also. I love to cook and grocery shop, so that should be a good diversion. I *might* even have to have a real margarita at my fave Mex restaurant this weekend since I will not be drinking as of Monday and I doubt Mex food is going to sound good after chemo...
Cheers, girls, have a good one!
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anniemomofthree - can't believe doc kept the emend in the back pocket. my copay on that one was almost 200 bucks so I think at least psychologically, I convinced myself it was a miracle drug.
I really didn't get hit till day 3 (first day back at work of course) and am now thinking it was the comedown from the steroids. Think I'll try the suggestion of tapering for 5 days...I was so hot to get off of them because they were making me very "aggro" and my mom was in town (which will make me act like a brat anyway). But if I could avoid trying having to lay down by my desk again, it will be worth it.
Anyone else feel stomach bloaty from the steroids or chemo? I've barely been eating but my pants are tight just in the stomach.
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supersally,
I am a Jan girl who stops by the March lounge (you are all so fun, and the drinks are great), I have found Mexican to be my comfort food (ok, not until day 5 or so), seems like I need something spicy to wake up those taste buds. No margaritas those, trying to save the liver for chemo.
Good luck next week, I have chemo next friday and will be 2/3 done!
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I've been up since 130 a.m. this morning and unable to get any sleep! I think these steroids are crazy! I'm going to try the Ambien or the Tylenol Pm to try to get some sleep tonight. 24 hours since my first chemo and feeling pretty good. Felt a little upset stomach when Zofran needed to be taken again, but that's about it. I feel very lucky after reading how difficult it has been for some of the March ladies. I am crossing my fingers that things continue to go smoothly.
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Shansen-are you doing the acupincture for a particular reason? What I mean is do you tell her you ant nausea relief or calm anxiety or a certain pain? I am interested in how that works but wasn't sure what to tell them -or even find out if they are good at what they do or have a license ect?
Kym I am going to read up on the parp inhibitor thing before I see the onc next week.
Mdg-thanks for making such a great thread and keeping us all connected,
I swore I was going to stay offline because I am just making myself nuts trying to figure things out before I really know anything,,,
I do have a couple of tips from my dentist-I got my teeth cleaned before I get started into drugs. She suggested adding additonal flouride wether in a mouth rinse or a flouride heavy toothpaste, This will help the effects of chemo on your tooth enamel. She also said the Biotene is a great product-I have seen that mentioned many times. She also said all dentists have an anesthetic spray and cream if mouth sores get too bad. She told me to come and see her at the first hint of trouble. She is also going to "whiten" me up for free next year when this whole thing is over. Best news of the week. Knee surgery went great-I will be able to dance at the lounge now while I downing my umbrella drink!!
Hope you all have a great weekend -I am sending out cancer free thoughts to all of you.
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Hi lounge lizards (or is it lushes?!!)
Lilylady-my husband is a dentist and agrees with what you were told, although my onc didn't think it was necessary to have my teeth cleaned ahead of time. To me it just seems like a good idea to get all those things out of the way so you can concentrate on THIS.
I've had a bit of a crying jag the last 30 minutes or so. Everything is getting so close now, with port on Monday and chemo starting Thursday. I called the gal that cuts my hair this afternoon (yeah, that was a good idea-call on Friday to get in when exactly?) and no one answered. My usual procrastination catching up with me. Then I realized I had called her cell phone not the shop. So an hour ago I called her again, but she wasn't planning to work Saturday morning. Then she called me back and she'll cut it at 11:00. I know I sounded so pathetic on the phone (Uh, I don't know if you heard I have cancer? And I need a hair cut before I have surgery Monday?) but she was very nice (she's only 22 or 23-her mom and I are the same age). No one will be in the shop when I go so that will help a little bit too. So it will be quite a change when I go back to school Tuesday with my new 'do that will change again in a few weeks.
My poor DH didn't know what to do with me as I just cried on his shoulder, then realized I had gotten snot and mascara all over his shirt. What these poor guys have to put up with!
Okay, it looks like I'm done with the tears now. Funny how sharing/writing about it is so therapeutic. Trying now to take my own advice to keep calm and carry on. Deep breaths. And Ativan. And Ambien.
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hi all
Glad some of you are doing so well with treatment. For those of you that are having problems (like me
) my best advice is dont be afraid to call the doctor...they are used to getting phone calls at all hours and they do have other meds that they can use! I also discovered that having the phone number of a 24 hour pharmacy is a huge help.Feeling good today..took me about a week to feel somewhat normal again...going to a try and have some fun this weekend.
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Want to keep mu updates current for those of you getting ready to sit in the chair and enter the lounge.
Its 8:30 am and I slept pretty well - up a few more times to go potty but the naseau (i better learn to spell that before this is over) but I ma having a cup of coffee this am and feel fine. For me I think the loopy drugs are hard - next time Ill pass on the Ativan and just stay with the decadron and steroid in the pre-drip and emend for 3 days and coppazine and zofran post drip. I am kind of surprised at the different doctors keeping things in their back pockets or waiting until symptoms arrive. My Infusion lady said the thing she liked about my Doc was she gave you all the tools in her aresenal and if you didnt need then great. She said she thought mny Dr patients did better overall with the naseua tackling it this way so for those of you getting started go in armed with the information and ask.
I am still fuzzy with the Claratin and why they would help with the bone pain from the Nelasta shot I am scheduled to have Monday - any thoughts on that? My infusion nurse had not heard of that yet.
So at this point my biggest discomforrt is loss of hair coming and the "foobs" or "tupperware" . I am going to have these nasty ladies for a year before I upgrade to ziploc. Sigh.
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Thanks to all for the support her so far. I'll gladly be the lush. If a few others follow (looks like it's you and me cello mom of 5). I have more info and insight at www.caring bridge.org my handle there is pippi ( some other bc lady took me name already) the nerve!
In any case my first of many chemo's is friday. Besides drinking lots of water anything I should be doing before Friday at 2 pm?0 -
Shansen,
My 4th chemo is friday, I will be thinking of you. Besides drinking lots of water, dresss comfortable, and relax. Treat yourself to a good meal out this week/weekend, since next weekend you may not feel like going out. I am sure you have all your post chemo supplies and drugs ready. I also use a note pad to log my meds post chemo, I find it hard to remember when I last took a med without writing it down. Good luck, you will do just fine.
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Huskerkkc - I promise you the worst bit emotionally is the waiting for it to start. Once it has you can manage it. I am now day 10 and it pretty much went like:
Day1 - 2 fine
Day 3 - feely yucky - badly constipated
Day 4 - 6 lay around whinging like a girl, no energy to do anything
Day 7 - 9 on the mend (but can't be far from the bathroom)
Day 10 - feel normal (sore mouth but hair yet to drop out)Now I know what to expect I can plan for next time
Good advice on writing down the meds - I completely lost track. Also write down what works for you the first time so you can repeat it after that.Good luck everyone starting this week
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hello Ladies! It is now post 7 day after my #3 chemo anf finally starting to come back to earth. Sorry I can't seem to answer right to every single person, but for those of you still dealing with SE, we can all notion it's no fun. I was taking my anti-nausea medicine like every 2 hours day before and yesterday until I just felt plain dehydrated. I still did not talk my Onc/ into the Ativan, but I am telling them next time so I can just get some sleep the first week after. I am so glad for those of you who have your chemo started downhill, Yes it is true # 1 and 2 seem to be a little worse. Even though after 1 you can pretty much figure you have it all down hill pat with a little routine to how your body reacts. So sorry for you that are having vomiting issues! Glad to see they have given you better medication. Yes I agree maybe we need a Marij/ card. We would all be a crazy family than. Lol. Everyone take care have a nice rest of your weekend. Remember to set the clocks up so we can loose an hour of well deserved sleep. Take care my chemo buddies.0
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Hey ladies. I'm copying my post from the Fab Feb Chemo Babes...Had my AC #3 on Thursday (postponed from Monday because of the weather). I'm feeling OK. A little tired tonight, but that's maybe because I decided to back down from the Decadron (steroid--makes me irritable and unable to sleep) and adding more Ativan (was only taking one at night and rx says every 4-6 hours!). So far no other SE's.I had my head shaved yesterday after my neulasta shot. It's really kinda irritating. Like sand paper on everything, and pillows, sleep caps seem to rub it the wrong way. My future stylists have done everything for free, so I plan on making them a delicious flourless chocolate cake coated in ganache.I did purchase a bottle of Aveda Shampure, which is super gentle and smells so good, and they gave me a generous sample of a leave-in conditioner from the men's line. My scalp was pretty dry and itchy, and it made it feel much better. Another difficult weekend with my daughter (it ain't over yet!). My father is in town and he and my mom are coming over for breakfast tomorrow morning. We'll see how she does when they go. It hasn't been pretty, though she left grandma's this evening without too much fuss. I just never know what to expect and it's exhausting. I'm sorry some of you are feeling like poop or worse. My sister sent me a fun birthday package with yellow "CRIME SCENE DO NOT ENTER" bandainds. I wore one over my port and the nurses got a real hoot from it. I plan on wearing the crazy magenta fright wig to my last session. Woohoo!OK ladies. Having a hot flush. Hat off.Cheers,
Michelle0 -
Tomorrow we start a new crew of gals having cocktails. This week's roll call:
Dizzyakira: (Kim) 3/18
Migallen (Mignon) 3/18
CKelly (Chris) 3/16
Kymn 3/17
Supersally (Barbara) 3/17
Huskekkc: (Kristy) 3/17
I wish all of ladies a good week....I know it's hard, you WILL get through it. Please keep us posted on how it goes!!! Hugs!
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Hi, Please add me to the "lounge" I will order a Diet Pepsi. Love the name and reference to drinks:)
I am scheduled to start chemo on 3/16. The meds they are giving me is adriamycin and cyclophosphamide every 3 weeks X 4 then followed by paclitaxel weekly X 12. I am still getting used to the abrevations for things.
One of the meds that I am supposed to take beforehand is backordered. Hmmm don't know if that will affect my start date.
I have a port and am wondering will they just move my shirt aside to access the port? I won't plan on wearing a turtle neck. Or will they make me change into a gown?
I want to order some hats, has anyone tried or looked at headcovers.com? They seem to have a large selection and the prices are very reasonable. And speaking of hair loss, I am looking forward to not having to shave for awhile.
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herbnstan: I added you to the roll call in the lounge. Best of luck to you on 3/16 for your first cocktail. Glad you came to the lounge for some support and fun during chemo.
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herbnstan - I got some stuff from headcovers.com - very reasonable - came quickly - I was happy with the stuff
Penny0 -
herbnastan,
At my chemo clinic, they access my port without me changing, I usually wear a tank top under my zip up sweatshirt or big shirt and they do this very descretely. Our clinic is open, they have curtains they can draw, but I have never seen them used. Dress comfortably in loose fitting clothing. Good luck, the first is the toughest, with not knowing what to expect.
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Hi ladies - I've been laying low on the board this week. Between work and napping, I haven't had much energy for jumping on. Then I was overwhelmed trying to catch up on everyone's updates (we're a talkative bunch). I'm mostly feeling myself 9 days out though I SO miss my lattes and my wine and my tummy isn't quite right/ settled and I am also feeling some precursors (maybe?) of mouthsores. I have a question for those who already have their ports. Were you able to exercise soon after or did you have to lay off exercising? Just curious since I expect my port to be scheduled to be put in in the next week or so... Sweet dreams to all.
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Anybody doing dose dense? If so,was it your choice?
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lilylady,
I am doing dose dense. I got two opinions before I started and both had that recommendation. I am grade 3, but also TN (as I see you are) and that may be why. The chemo mixes were a bit different between the two, but both were similar to what I've seen on the boards and in my research. I am also part of a clinical trial, but even without I would have been dose dense.
I get my port tomorrow morning so am up and anxious. But I'm less worried about the port than the start of chemo on Thursday. But it's one step closer to being done. WE CAN DO THIS, CHEMO BABES!
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silia-
I got my port in about 9 days ago and the soreness has just finally gone away. The incision is very small...but still there's stitches and quite a bit of soreness in the neck from when they work the line through (as well as some quite colorful bruising). I think you probably could exercise, but not sure you'll feel like doing a lot of jumping around for a week. I did a bunch of walking but nothing much more exciting (no spelunking or anything).
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Silia: I got my port in a week before chemo so I have had it now for 2 1/2 weeks. I got mine in my arm not my chest (my PS refused to let me have it in the chest). It was sore for about a week. I did do some cardio working out about 5 days after - the elliptical but did not use my arms just to be on the safe side. I do workout on the elliptical 5 days a week now with my arms and have no problem. I still do physical therapy twice a week from my BLMX and have no problem. The port doesn't hurt at all now. Barely know it's there.
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It's Day 5 for me, and I feel like I'm finally seeing a bit of light at the end of the tunnel. I'm trying to decide whether to taper the Decadron (took 2 yesterday) or drop it cold turkey just to get it over with.
Lilylady: also doing dose dense here for the AC part. I was given a choice of every two weeks or every three: the two factors that played into my decision were 1) that I have a grade 3 aggressive cancer and it seemed from everything I've read that a dose dense therapy can be more effective at smooshing the buggers before they get going again, and also that 2)I was going to be getting Neulasta anyway because I teach small children and have young children of my own, so my WBC ought to be able to handle the two week schedule.
Interesting to hear the "port news" from those of you dealing with them - they discourage them here, so I will be getting it in the arm each time. I was initially disappointed not to get one, but we'll see how it plays out.
Hmm - breakfast time. Eggs, potatoes or chicken soup? They are the only three things that appeal.
Take care, all.
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On my way to first TCH treatment this am. Can I have an ameretto sour please??? Wish me luck!
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kriskat,
sliding a drink dow the bar...I'm heading to port placement sugery in about 20 minutes. Appletini's anyone?
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I am day 5, today and feeling so much better (not perfect, don't get too excited)! I tapered decadron (none today so far) and used the compazine periodically. Also, tylenol PM at night. Strangely, I am getting a headache every evening despite what drugs I'm taking. My best times seem to be about 5-8 PM at night, I feel almost normal. The thing that is getting me is this fuzzy-headedness. I hate it. I feel drugged all the time. Perhaps this is the chemo brain? Fortunately, I haven't had the bone pain with the neulasta.
I am going to google some of these other drugs that I wasn't offered (emend, zofran) and see what particular cocktail will get me through this.
Like Shansen mentioned, I am dreading the upcoming hair loss...dreamt about it at length last night.
One thing that has been huge for me is exercise. Just getting some movement and fresh air has cleared my brain the past couple of days. Believe me, it was a SLOW walk, but it felt great.
Good luck to all facing #1 this week (and beyond). It's good to have a lounge where we can all compare notes.
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Got my port in 6 days ago. It is in chest. I am still tender there. Like if my kids want to sit in my lap I move them over to the other side. I had some sort of reaction to something, I am thinking it was the blue stuff they used to clean me with before inserting it, cause I had a rash on my chest. I am still experiencing some itching around the port site as well. I had my lymph nodes removed on the right side and as the nurse said "they are putting poisen in your viens, we want to save your other arm." I am nervous for the first time they use it, but excited for how easy it will be to use. Oh I have been feeling like something is weighing down on my chest, not sure if that is in my head or what. i will definetly be bringing that up to the onc.
As for exercising, I ride a stationary bike and have been fine with that. Of course it doesn't really involve the arms. I still can't lay on that side very long to sleep.
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Maxine0 I too got really bad headaches and they thought it was the chemo but now tha I am only on herceptin I know its from that. Ny onc nurse looked it up and it is a side effect, usually goes away after 3 days and Tyl is enough to help.
About the hair loss...I am very vain and was so worried about social events witha wig. I was lucky to find one that everyone says looks like my original hair ( I just kinda guessed and bought it site unseen on-line) It is a bit shiny...nobody has real hair that shiny, but I like it. at home I'm all cammando and have discovered how "free" it is. Makes you re-evaluate whats important in life.
How come my leg hair comes in faster than my head hair? And yest found a chin hair????
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