February 2011 chemo pals
Comments
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The nurse told me that women who get seasick or had a lot of nausea during pregnancy are more likely to get nauseous from the chemo treatments. I fit in that boat.
I finished my infusion yesterday at 12:30 and the Aloxi was given via IV. By 5:30 the nausea just hit like a strong wave and I spent 4 hours lying on the bathroom floor trying to throw up, without much success. It felt miserable, even water made it worse. I took Zofran, but it had no affect. Maybe it was too late at that point? I didn't try the Ativan after that, because I thought it was for anxiety.
I was hoping to sail through, but nix that idea. Though I feel better now, a call to the doctor today is in order.
Sorry to write such a complaining post and to worry anyone who hasn't gone yet, but it does help to compare notes. Have a great day everyone and hang in there.
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I too had the same problems as you had mama. The next TX I talked with the doctor about it. I take the Comazin, Zofran, and Lorazepam all together. I know this sounds like alot of pills to be taking, but it did so the trick for me. I had very mild issues after that but man did it ever make a difference. Trust me your not complaining. Im glad Michelle created this topic so we can try and get each other thru this. Hang in there. I do hope it gets better for you.
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Babyswim, I went to 0 with my WBC after first treatment. Had to stay in, wear the mask....not fun but found things to do at home I hadn't done in a while, curl up with good book, clean out sock drawer......For my second treatment I've been taking all meds and eating better, hopefully this will help but NP said if I'm prone to do it the first treatment, I'll probably do it the second. I can do this for 2 months out of a lifetime!
For nausea I receive Decadron, Aloxi and Emend in my drip pre-chemo then I have a mixture (done by pharmacist) of Benedryl, Ativan and Haldol. I took it through day 4 and did fine with only mild nausea on day 3 ( which I have spent in bed sleeping both treatments). As with others, the onc told me to let them know if I needed something else. They DO NOT want you to vomit!! catch it early on!
Everyone have a blessed day and weekend and remember....."put your big girl panties on"!
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Kathie,
I do have Ativan but haven't taken any. I started having a little chest pain the day before chemo, so that's why they thought it was the Decadron. They also gave me Benadryl and Prilosec IV before chemo started. Those all seemed to help with the chest pain. It just seems I traded that for more nausea by cutting down on the Decadron. I also got Aloxi and Emend and pretty much took Phenergen for the past 2 days around the clock. No throwing up though! That's at least one good thing.
I'd also like to say thanks for those who suggested Clariten. My SE's from the Neulasta were definately not as bad this time.
I saw someone mention something about kids and losing their hair. I wore a scarf around my 6 year old nephew before my hair fell out. He acted a little leery of me for a couple of hours but then he was fine again. I then let him cut some of my hair off. He seems to be dealing with it fine now.
What does everyone drink after chemo? I typically only drink water, but I find it hard to do the first few days after chemo. I'm feeling dehydrated...
Melanie
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Hello Ladies,
I've read with great interest you all's varying experiences with chemo, nausea, feeling bad then feeling better. Makes me feel like I'm surrounded by people in the same rocky boat, a comfort.
I want to clarify something, that I was given four prescriptions for nausea stuff, and I took all of them over timed periods the first few days. The paper says, "Follow this schedule following each chemo treatment," and the list ends in three days. Well, by the time I read that, I had gone into Day Four of eating all the drugs, and that's when I realized there was no need for me to continue unless I wanted to. I also started up one of the pills a day late, which is a medicine they give with the chemo, Zofran...after two days I could begin that one in pill form.
My other three pills were Ativan (hated it), Phenergen, and Zantac. The one pill that did right by me and didn't practically blind me was that med with chemo Zofran. So, for the next couple days, after mindlessly continuing nausea drugs, I just took that one pill, and it did really well with any remnants of reflux and whoozy and I began to "come out of it." The others I dropped entirely. It could be some of the drugs I take are diff from you all because I have Restless Legs Syndrome from a back injury after a car wreck broke my back in three places, so some drugs make them worse, so perhaps my diff.
When I do my chemo again, I'll take them all again as scheduled, but I think I'll skip the Ativan... I think it's what made me feel so crazy and out of it, and I do have that option with some of these drugs I do take another tranquilizer anyway, Klonopin, for panic disorder. The point of this dissertation is that I am on chemo AC of ACT, with T coming in a few weeks by itself. And I just didn't want anybody to think I was swearing off all nausea drugs! No, I'm following instructions... it's just after three days, I'll switch over to just one drug.
I am just over one week from my first chemo, still stare at my hair and memorize every detail (it's past my waist) and I believe I will do better this time with the medicines, and I have a great thermometer now so I can make sure I don't get too high a fever. So, I have a QUESTION: I understand from Safari's experience that a high fever can indicate an infectious process going on in the body that needs to be checked out, but I also am wondering does a high fever ALSO suggest my blood counts are way too low? And did anyone else feel the body pain and aches and fevers I had? For me, that was the worst part of this whole thing. I have plans to ask doc for pain killer beyond what I already take for my busted back, specifically for those body pains that kept waking me up. Such agony.
I ask because there was a moment a few nights out where I felt I almost died. I've had fevers from pneumonia and flu and stuff like that, always a nightmare, but the ones I had two nights in a row a couple days from chemo were the worst of my life, I felt desperate, body aches were unreal, and my husband when he saw me drag into the living room at 3 a.m. (he was watching a TV movie), he was quite alarmed at my appearance and dispair.
I don't know why I felt I needed to splain all my drugs, but I just worried people might have mistaken how I quit my nausea drugs after five days, especially when my paper says I could have stopped them after three days. And I certainly needed at least one of them for five days. And I plan to take them each time of chemo as directed. I just initially had confusion that antinausea stuff isn't needed for the whole two-week trip, rather at least the three days, and beyond that is choice. I imagine each clinic does things their own way, tho.
GG
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Good morning ladies! The snow is falling fast and furious here, and so is my hair. I donned a baseball cap this morning, something I only wear when I'm working (I'm a pastry chef, so a hat is required).
Jean~ I am definitely going for the early Twiggy look (minus the heavy eye makup). Got my fur trapper hat at the ready and a few oter options.
Anyone have recommendations for soft cotton swim caps? Do they exisit? I want one to wear in the pol with my daughter and to aqua-aerobics classes. The rubber or silicone caps seem like they'd pull on lingering hairs.
I didn't have a god night's sleep last night. Tossed and turned the whole time. I know it's the Decadron, so, like last time, I'm stepping it down to one tab last night, one this morning and that's it 'til next round.
As for when to take your meds, I had the nurse make me a chart. She put in the names of each drug and a tick mark when to take on each day (Breakfast, Lunch, Dinner, Bed). I took them exctly as she indicated. I DID NOT WAIT for syptoms. I'm a wuss! I only took the Compazine once as it was indicated "as needed" and I didn't need it. I added Claratin, Tylenol or Aleve and Senekot to the cocktail. Today, day 5 of round 2, I only took a morning Decadron (last one), Claratin and 2 Aleve. I'll continue the Claratin and Aleve through to next chemo. Day 10 was when I had the lower back muscle spasms.
I think I asked this question before. If so, blame it on the occassional chemo-induced "cheese-hole" in my brain. Have any of you, or are any of you fabulous ladies opting for a DIEP flap or SIEA flap reconstruction? I am only having MX on right breast and surgeons think I'm an excellent candidate for either. That's what I'm hoping for, though I know it's a long surgery and recovery. Any thoughts to share?
Sorry so long-winded. It' the steroids! Hope everyone has a calm and SE-free Friday.
Cheers,
Michelle
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NeyNey, I am so glad to hear I am not alone in the low white blood cell boat. I am not at zero, I am at 1.6 (1600) with daily Neupogen injections and they want me to be over 10 before I can stop with the injections and resume normal acivities (ie go out of the house w/o a mask and have regular contact w/ others) I hate being housebound. Very hard to do my job from home :-)
I have already cleaned my house from top to bottom, cleaned my refrigerator and alphabetized my pantry :-) now what? A friend suggest a write a book about "Johhny's 1st Swim Lesson" and donate some of the profits to BC research. That sounded interesting to me. I miss all the smiling faces of my little swimmers and being away from the pool.
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FEC-D Start: Jan 28 2011 Cycle 2/6 Day 8 (14 days to next chemo)
Hi all..hope everyone is doing okay. A pill chart is an excellent idea. Prior to my first chemo session the pharmacist at the cancer centre spent half an hour with me going over all the drugs and side effects and gave me print- outs of everything. He also printed a schedule for me for my anti -nausea pills.. mine were ordered for the first 3 days. Now that I am on round 2, I write down every pill as I take it and times because I honestly have trouble remembering if I have taken them.
As for chills and fever, although my temp always remained normal I had very bad chills and fever the first round which alarmed me and a mini meltdown ( crying) and I'm generally pretty tough. It sure alarmed my husband. Round 2 wasn't quite as bad..some cold and hot episodes but much less severe..but I confess I did not take the decadron on Day 3. Week 2 of round one I developed a tooth infection...and still no fever. Was on antibiotics and finally had the tooth pulled 2 days before my second chemo last Friday.
Ironically, I get air sick, sea sick, was nauseated through pregnancy but have had no nausea really with chemo. Just not much appatite for the first 2 days which is fine now, although I only crave certain foods. I have had trouble drinking fluids as they taste the worst but always pop a candy or something right after water as it tastes awful. I am using magic mouthwash this time as my mouth got very sore last round. I am longing for a return of my taste buds as I miss a good cup of coffee, although I still drink it. I had switched to Folgers Hazelnut coffee last round which was good but this round it isn't as helpful.
Hope that comparing some of my symptoms to some of yours helps some of you feel you are not alone in what you are feeling.
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Hi everyone,
Feeling much better today, just queezy and headachy- but I went to work and have been sipping on chicken brother and SOBE lifewater drinks all day. Plan to convince my husband to give me the Neulasta shot after work. He's a physical therapist so used to dealing with medical issues.
Babyswim - I hope those white blood cells start multiplying! Probably a good idea for you to avoid the little kid-filled swimming pool, and maybe focus on your potential children's book?
Michelle - I can give you some feedback on the DIEP, as I had the bilateral mastectomy and DIEP on Jan 12th. It's a rough surgery and you need to be healthy going in, so think about taking a break after Chemo. But in the long run, it's such a relief to have your own skin and tissue, and not have to worry about implants rupturing or needing to be exchanged. Did you have specific questions? I was given the book "Breast Reconstruction Options" which outlines all the options, what's involved, and recovery periods. It is one of the most useful books I read when pouring over the choices. I will be happy to send it to you if you PM me your address.
Take it easy today everyone, stay strong.
Laura
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Melanie Ann, I found water to taste rather terrible for almost a week after my 1st chemo tx and I am a big water drinker. Diet Canada Dry ginger ale and cherry gatorade also both tasted off.
Among other things, my sister dropped off a 2 liter bottle of generic lemon-lime soda, and I started drinking that and it is what tasted best and satisfied my thirst the most. But only in small sips. Now I am 9 days past my 1st tx and most everything is tasting okay again. Altho I notice I particularly like spicier food than previously.
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Chemo - TCHx6 starting 2/17/11 cycle 1/6 day 9
Hi All,
Dogeyed - the Phenergan will also knock you out so be careful with it. They gave it to me after my BMX when the Zofran didn't work and I remarked on how I felt "fuzzy" as I was drifting off - my family just laughed because apparently there were hand motions that accompanied my comment.
Just back from my first post-tx blood draw. The Neulasta did its thing in spades. My white count was 4.2 prior to the tx last week which is normal, today it is 18.5. I wish I could share my white cell bonanza with those of you who need more! This also explains the aching!
Michelle - check out www.luxurydivas.com for some non-rubber/latex swim caps.
I'm off to run an errand!
Kathie
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It's interesting how different meds affect us all, because Ativan has become m'friend......taking one at bedtime is for me is more helpful than taking a number of the others throughout my day.
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Just had a hot shower and shampooed my hair intending to hit the salon for the buzz cut. Lots of hair came out, but I chickened out on the buzz. I think I'll wait a few more days. We're having a fierce snow storm with super-high winds. I ran to the grocery store, and I thought all my hair would just blow off before I got home! I could just picture a cloud of hair swirling away from my head. LOL.
Michelle
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Well all I am about bald. But what I cant figure out is how come Im still shaving the legs, grrrrrr. I wouldnt have any issues with giving up the leg hair, lol.
I hope everyone is doing better today. Im starting to feel human again. Im not so wiped out. Take care all and have a fun filled Friday!
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Hello all! Today is one week since my first treatment and it was (finally) a very good day ... the last six really sucked but ... it's behind me and I have a better idea of what to expect ... I have read all of your posts and thank you for the tips ... that Emend really is aweful so I'm going to try the suggestion!! LOVE OPTIONS!! LOVE LOVE LOVE that all of this information is shared!
Thank you all ... hugs and a smile! We're doing it!!! We're getting through it!!!
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TheFuzzyLemon - so glad you are feeling better- that 8th day is wonderful to feel good again.
Paula I'm with you if we lose our hair it is not fair that we still have to shave our legs, that should be a bonus for us CHemo girls.
I have very little hair left very thin can see my scalp throught the hair in most place and a few bald spots not pretty but it is part of the package found I love the beaubeau scarfs for home they are very soft and comfortable and do not need to be tied around the head - the wig comes off as soon as I am home, I have to remember when I take off my coat in the morning that I am not wearing a hat and the "Hat Wig" stays on
My kids are older but I think those with young kids will probably need to hear from you that the medicine that is making you better might make your hair fall out but it will grown back. It will be hard to hide it and it is better they hear from you than worry about it.
Water has been tasting funny off and on although not usually in the first day or 2 - i find on the off days lemon slices help or drinking tazo organic green tea works( not as sweet as some of the other to me). I have also sucked on gin gin hard candies before drinking the water - the ginger flavor allows me to drink water again.
Hope everyone has a good night...
Jean
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I did very well with my first CMF treatment and thought it would be a breeze, BUT after my second tx last Wednesday, I feel like I've been hit by a truck! Very tired and shaky. My WBC didn't come up to where the onc wanted so I think I will need a neulasta shot next week. Don't know much about it as far as how often it's needed. This is discouraging, since I had bc 10 years ago (a different kind) and now go through chemo again. Guess I'm being a baby.
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Golfergrandma;
Hang in there! So sorry you have to revisit this trying experience! Baby? No way! Survivor, fighter, believer, anything BUT baby! I am told that my treatments may have varying reactions - you never know. I assumed the first would be the worst but my onc told me that there is still meds in my system so following treatments may be more harsh in terms of side effects. Hang in there!
Just a note on the Neulasta, I get it automatically the day after every treatment and WBC counts have been fine. Make sure to take claritin for a few days as bone pain was harsh for me and I am 37! Claritin worked though - just an FYI
I am 2 days out from my second treatment of TC and just feeling kind of tired and blah but ok. Just so very sad as I have lost most of my hair and trying to get the strength to go get it buzzed today
Trying to stay as positive as possible! 2 down, 2 to go and I do have FABULOUS wigs and wraps, just wish I had my life back.Thinking of you all today and always!
Mary
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Hello all! I felt pretty good yesterday....Then today, wiped out....is that something that anyone else has experienced?
I also have a sore throat...wondering if I caught a bug or if its part of the process.
I get the Nuelesta shot 24 hours after each treatment. It was so funny when my husband gave it to me!!! It was BLAM! Didn't even give me a chance to talk it over!! I still laugh pretty hard when I think about it...make sure its given very slowly. I hear it Burns like h.e.double toothpicks if you don't...
I hope everyone has a wonderful weekend! -
Glad to hear that others are feeling better - fuzzlemon and golfer grandma, I hope you feel better soon. Take it easy and take care of yourselves.
It's my day 3 and after an early afternoon nap and 45 minutes on the bike trainer I feel like myself again. Neulasta last night preceded by Zirtec antihistamine, and so far so good. My girls (ages 6 & 8) are having some laughs trying on the wig I got in the mail from a friend who went through this two years ago. They immediately wanted to french braid it. They know my hair will soon be gone but at least they're having some good laughs from the wigs and scarves which keep arriving in our mailbox. I like the "biker chick" scarf which I'll upload as my avatar - though still have my hair underneath!
Have a great day everyone.
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Good evening everyone. I'll be so happy when Monday morning comes and my kiddo will be back in school. It's been a long week. February break here, and I had chemo #2 on Monday. I'm doing well, it's just that I've been stuck inside with a whiney kid all week. I've taken her to a few places to do fun kid things, but she has such a hard time when it's time to leave the fun activity. Usually there's a horrible tantrum--lying on the ground screaming and kicking an getting the looks from other parents. It's just exhausting for me. Xanax please!
I just realized that in one week I turn 51! All I want for my birthday is a new right breast! LOL! No, actually I'd like the toilet in my upstairs bathroom fixed. That would make me happy.
I'm going to go watch some stupid cooking show and listen as the hairs scatter around me like the needles falling off Charlie Brown's Christmas tree.
Michelle
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Good evening ladies!
I am so excited to report that I am 2 days out from treatment #2 and feeling pretty good! Little tired and blah but I'll take it! And.... I finally went and had the head shaved! It was the most difficult thing I have ever had to do but I am SOSOOOSOSO glad I finally did it! I feel so much better! That was just an unnecessary week of torture as most of it was gone already! So.... A weight is lifted and I just wanted to share that all with you! I feel like that was perhaps the final hump and things can only get better - right?! The fear of the unknown is what gets me! Now I get to wear my fabulous wigs, wraps and baseball cap and no anxiety of the hair loss!Hope you all are feeling better and have a fabulous weekend
Mary
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Hi Safari;
I am starting TC on Monday 2/28th. Kind of nervous of the unknown. Can't wait to have the first one under my belt. Any advice, tips for a newbie? Bringing my husband, a blanket, ipod, and hopefully some courage. My name if also Mary!
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M1nn1e,(Mary) I will keep you in my prayers as you begin your chemo Monday. It felt good to finally begin mine this month...I'd been diagnosed in Dec. and with all the testing, doctor visitis, ect., it seemed forever before I started chemo, which is prior to surgery for me.
I also took my husband and teenage son with me so they knew and understood what the process was all about. They saw I was in no pain and were even joking that I got the "good" chair, which was a lounge type thing that reclined with a pop up foot rest. They were also able to listen to the nurse explain lots of details about my treatment and what to expect before, during and after.
You've probably checked out the posts on "Tips for getting thru Chemo" and "More tips for getting thru chemo".......and while it's great to be prepared, many of us find that we are presented with some side effects but usually not everything, so please try not to allow that to overwhelm you.
For about 5 days after my 1st chemo, I felt rough, but I honestly have had the flu and felt worse. So it is very very doable. My consistent advice to all of us going thru this is "Be kind and gentle on yourself!!!!!!"
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Well its good to see that everyone is doing better. There is the light at the end of the tunnel. Its just that sometimes when your at the beginning of it, thats hard to see. Continued healing for us all.
Well I think I made a huge mistake and jumped on the techie bandwagon to soon. We went for new phones yesterday and I let my son and salesman talk me into to much of a phone for me. I do good just turning on the computer let alone doing it on a phone. But if I can learn how to weld 2 pc of metal together I can learn an Iphone. Let the games begin, lol.
Michelle if I lived closer I would have hubs fix your john for ya. I love that hes so handy. He can fix lots of things around the house. He was a huge help to my mom when a flood distroyed her basement. He was so good to her and remodeled almost the intire basement himself. I love him for that.
Have a great Sunday Ladies!!!!
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So finally it is decided!!! My wound is healed and I will be finally starting my first Chemo tomorrow...!!! M1nn1e --- Hang in there, we are starting together... let's see how it goes... I am anxious to get my first round over with... I will be starting at 8.30 in the morning (Jordan time-- that is New York time +7) --- So I will keep you posted... Safari!!! I am so happy you are feeling much better.. you and mamaoftwo are encouraging me with this whole hair situation... I guess it's time I tell my kids...
Love to all- Salma
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Just checking in and it seems like everyone is doing well. Will be thinking of you ladies starting chemo this week and hope SE's are few for you. I have A/C #3 tomorrow as long as my blood counts are up where they should be.
Snowing here this morning and I am getting very sick of snow this year. Think it is making up for last year when we didn't have much of it... Looking forward to spring and summer..
Hope you all have a great day.
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Safari - Thanks for the kind words of encouragement - they meant alot! Still shaky today, but better. Wish I could have had the neulasta shot the next day, but no. Have already heard that I need to take Claritin after to help with the bone pain, but don't have a prescription for it. My onc will be out of town next week when I have the shot. My hair is shedding like crazy, but not coming out in clumps so I don't know what to do. Such a mess! Am tempted to have a buzz cut just to get rid of the hassle. Was fitted for a wig a couple weeks ago and will order it tomorrow. Have lots of hats, but not very many scarves. Appreciated the tip on a buzz cut vs. shaving. You are all in my prayers as we continue our bumpy ride!
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golfergrandma The claritin is over the counter medicine.....
Well I just had to call the doctors office as my left ankle and foot are swollen. Didn't do anything so don't know why this happened. I am just hoping that it doesn't cause them to not do my 3rd treatment tomorrow. Oh well they told me to sit and take it easy with my foot elevated...
Cindy
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Need a good book to read, helps me fall asleep. Anybody read something they loved lately? Thanks! Took my first dose of steroids this morning, waiting for the 3 pot of expresso side effect, nothing yet.
Salma, good luck tomorrow!!! I'll be thinking of you. Let me know how you do. What regimine are you doing?
Divine; Thanks for all the well wishes and advice. The flu I can deal with, so if it's that easy, I'll be fine! So nice your teenager came with, my daughter is 16 and doesn't want to know anything about it. I think she's in denial, poor baby, it really scares her. My 10 year old son is totally ok with everything, even helped me pick out a wig! Maybe its a gender thing?
xoxo Mary
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