Anyone on just Taxotere and Cytoxan?
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Has anyone had lipsores? I have completed 3 of 4, 6 days after. This one was different too. Night sweats are terrible. I dont know if this is because of chemo or menopause. Bone aches, headaches, awful taste in my mouth. Still have half my lashes and brows. I have to go see the nurse practitioner today as to not have my mouth get out of control. I have had tremendous family support. I live in FL and have had my sister for round 2 and my daughterinlaw and grandaughter (age 1) round 3. I have not cryed nearly as much. I praise anyone who has to do this with young children and no support. I will pray for you daily. I have met so many people on this journey who are so much worse off than I am. I only wear the wig when I meet clients (real estate broker). Picked up a new client in the airport when he asked me why the scarve. I shaved my head after 12 days of first treatment. I have had some funny things happen along the course and try to keep humour a daily part of life. Laugh Laugh Laugh.. I know I got this dreaded disease for a reason and I am sure God will show me the way. When sitting in the waiting room I close my eyes and imagine a baby laughing and bingo theres an instant smile and endorphins release. I talk to fellow chemo patients and share experiences and different stages in our life and diagnoses. I had one lady outright hug me in the store. She is terminal with stomach cancer and I felt like an angel was with me. Get your PH balanced, cancer cannot grow in a PH balanced body. I am ready for round 4, my daughter and grandaughter (age 4) will be with me for a week. I am on the 25 yard line 1st in 10. I am going to score on the next possession. God Bless you Sisters. Hang tough.
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Hello, all,
Day 6 after tx #2. And, I feel so stupid. When I started this, I figured I'd have the chemo on my Friday, then rest. It didn't occur to me that that wouldn't be when I'd need more rest. So, I think I have to change my schedule. The Charge Nurse said it's possible, I think, but I've been told so much, I'm silly. I have 4 tx, and I'm halfway done. I don't want to mess anything up but it makes no sense for me to start feeling bad just as I return to work.
I started headache, itching, total exhaustion, and some stomach cramps yesterday. Itching--I'm taking 2 Benadryls at a time. Also, just not sleeping well at all. Just feel crummy now. Worse today. I'm guessing (based on last time) that it'll be worse tomorrow. Sorry, I'm not whining, I'm just trying to figure all this out.
So, has anyone else been able to change the schedule to accomodate the bad days? (I knew NOTHING going in to this.)
Also, has anyone ordered wigs online?
I bought one locally (only shop in town) and think I'm getting the runaround. Naturally, he has my $, but just wanted to know whether others trust online, or how you go about doing this.
More information I NEVER wanted to have, but I know none of us ever wanted this situation.
Best to all of you, stay strong. Thanks for any tips you can throw my way.
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Nancy - it IS hard to figure it all out. Just about the time you get through all 4 treatments, you'll have it all figured out!
My experience is that I need about 5 days to get through the worst of it before I feel like joining the human race again. Day 1 (the day of treatment) and day 2 aren't too bad, but day 3-5 are the really down days for me.I ordered a wig through the mail but sent it back. For me, I really need to see what it looks like on me. But I have heard of other people who have ordered them online (ex.: tlcdirect.com) and they liked them...Good luck with that!CHJ0 -
PAlady
Thanks so much for the info. I am 42 also, I think too young for this stuff! How bad has the TC been for you? Does everyone gain about 10 lbs. on TC? My onco said that the weight goes away shortly after treatment ends. I don't love the idea of being bald and fat! Are you receiving 4 treatments or 6?
I really appreciate the advice. There is so much info. and options that it can be overwhelming.
Debbie
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Hi girls! This'll be short, just a few shout-outs. Today (3#) was really long. I had ANOTHER reaction to the taxotere today; same as last time but I caught it quicker since I knew what to look for. Got even more Beandryl and I'm fighting keeping my eyes open. I got to my cancer center at 8:30 and didn't leave until 3PM-- long day! I think I'm heading to bed once the kids are bathed and in bed, if I make it that long even.
debap: I'd go fot he TC-- less cardiotoxicity than the AC. I'm doing TCx4 and am doing pretty well, minus my adverse reactions during infusions. The SEs are doable-- not pleasant, but not debilitating (so far). I have one more to go. I plan on posting some tidbits I've learnbed along the way like others have done once I get through the next week. My worst problems have been constipation (which I seem to have under control now), and the bone aches on days 3-5. I'm ging to try some Claritin this time to see if that helps with the aches. I had a second opinion on treatment also-- both rec. TC. Not doing oncotype b/c I'm er/pr-. I'm doing a year of herceptin since I'm HER2+ (also another reason everyone wanted me to do TC, b/c herceptin can cause cardiotoxicity and doing andra. with it would be a double whammy). I have gained 5 lbs so far-- not happy. I eat pretty well and exercise on a treadmill 2-3 times a week when I can. I think it's mostly b/c I'm not working during all this, so I'm much less active than usual.
goldilocks: N= neupogen? I'm assuming since Neulasta is given only one time after infusion. I've heard conflicting reports on how long neupogen is given. My onc says 10 days after chemo. Others I've heard say until counts go back up to safe level, which is usually less than 10 days. Nausea pill use is variable. Most of the nausea I've heard from poeple's reports is worst a few days after chemo so maybe they take there's for 3-5 days. My Aloxi given as a premed seems to be working very well so far and I've not needed any anti-emetics at home.
emerald coast: I have not had any mouth or lip sores. What kind of mouth care are you doing? I use Biotene toothpaste and mouthrinse 2x/day every day. And I use a rinse my onc recommended (1 tsp baking soda per 8oz. water); I swish and spit with this about 6 times a day for the first two weeks after chemo (starting the day of chemo), and the last week I slack off to about 4 times a day.
nomadnan: Day 3-5 are my worst days, too. I get chemo every Wed.; I start feeling achy Friday night thru Sunday (Sat. my worst day), but am pretty much better by Monday. I also liked getting my wig at a boutiqure b/c I could try it on and see what it looked like. I was surpried that what I'd originally though would look good didn't when I put it on.
Benadryl is taking over... see you all tomorrow.
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Hi goldilocks, I noticed you're from Dallas too. I'm having my second TC tomorrow at Baylor Regional in Plano. Where do you go?
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Thanks, CHJ...you're probably right.
Last time, I had my worst days 7-10. Why I didn't think that would happen this time is anyone's guess. So, most tend to repeat with each session?
I see everyone else is also investing heavily in Benadryl. Right now, I have itching all over. Last time, I had itching on the backs of my hands, and tightness. No rash, just itching. Now, I have a rash--or is it just because I've been scratching. I've heard: go to the doc if you get a rash, and I've heard the opposite.
Interestingly, one question I had for my onc doc was whether I will get weaker and sicker and worse with each tx. He said, not necessarily, but some people do. 3 days later, the nurse pract. told me: the effects are cumulative--you'll get weaker and more tired. You can see why I'd be frustrated.
I get better info on here. So, thank you for answering my silly little questions--I'm just trying to get through.
Best to all of you who are doing the same thing--you are all so helpful and an inspiration. I appreciate your help and hope I can return the favors.
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Day 1 post chemo...went to work, felt fine...after work got the shot...feeling a little tired now..took the steroid, and tylenol PM. Had the BM this morning...not going to do the stool softner tonight...just try my usual tea and reading the newspaper in the morning.
Took the claritin for the shot.....
Glad to hear from everyone...I hope everyone gets lots of shuteye and zero SE...Stay strong all..
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Oh i have to add my onc said same thing--- "You should expect 1st tx should to be same as 2nd" and I had much harder time 2nd especially days 3-7!! and here Ii read on all these blogs similar situations, i think tx is cummulative, although i hope i'm wrong and tx3 is eaisier
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Good morning all. Slept really well thanks to the benadryl post-taxotere reaction yesterday. I'm feeling sad today though b/c I read last night before bed of a death of a fabulous BC author here in DE. You have to understand DE is such a small state that everyone knows everyone. Even though I never met this woman in person, we e-mailed several times. She was a huge inspiration to many DE women, and mnay of the things she wrote about we've all been through-- her tx center was the same as mine, and many of her docs were some of the same as mine. And her book was so good I carried it like a Bible through many stages of my journey and have read many of the books she suggested, etc. She was dx Aug 2004, and was stage 4 by Sept. 2005. She had 3 daughters ages 18-21 and a 6 year old son (only one year older than my dd). She died at home Monday, she was 48. It's the first person I know of that has died from BC, and it's just hit me hard. So tragic at her age, and it sucks that this awful disease has taken such a vibrant life away.
So some quick shout-outs...
Nomadnan: I hear some SEs are cumulative with each tx, like the fatigue. I have found this to be true so far, though not drastic each time yet. Other SEs may not be. My onc said things like bone aches can be the same, or just a little worse each time. About the itchy rash... I'd call your onc just to be on the safe side. Plus, maybe you can take something like Benadryl to help you feel better. I think the taxotere can give this SE.
SharonS: Please keep me posted on how you feel the Claritin works for you. I am really curious as I've been following closely what others have found so far-- all positive I might add. I get my shot later today and plan on taking some Claritin tonight. I had not used it with the previous 2 rounds, so this will be my first time trying it. So if it works, I'll know!
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Hello everyone. I just heard abouth this message board the other day and have found it to be great! Just had my first TC treatment yesterday. Doing much better than expected/fearded - but know I am early into this. Onc says since I am "young and otherwise healthy" no Neulasta shot for me. Will add it in if we find a need but after hearing the comments, I like taking the wait and see attitude. Trying to stay positive and do everything I can to help. Really appreciate all of you sharing your experiences!
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Hello all. Posting a bit late today. I was in so much bone pain this AM that I had to take tylenol and darvaset together to just get a bit of relief. Called the dr and they said that this sometimes is common for those having to take chemo for the 2nd time around. They say that your body remembers and sometimes it may make it worse. Great! So, didn't go to work. I was scheduled to go to a awards breakfast for being in my job 5 years, disappointed cause I was looking forward to the breakfast. Guess I'll have to go somewhere that has breakfast all day. I can't cook due to getting somewhat nauseated. I however don't have any problem eating the food once it is cooked. Onc will be checking my blood today and hopefully won't need any more shots till the next chemo round. I really hate pain, so walking today is extremely challenging. I hurt from my lower back into my hips. Dr says it will subside, I just need to rest.
Believer0711: I am here in Richardson and take the treatments at the dr office. Had my surgery and reconstruction at Presby Plano. So far I have had great dr's, staff and been treated with humility. It seems like that is rare these days.
I'm keeping it short today, need to go get labs done and come home to rest. Hubby stayed home to help me. He really can't do much, but it is consoling to know that if I need something he it here. This is day 7 and still have my hair, however my head is itching and sensitive. My mouth is constantly dry, but gum seems to help with that. Hopefully I will feel better tomorrow and plan to go to work. I am not going to let this get ahead of me. I will remember that I am the only one that can decide ultimately whether I am up to working or not. I need to remember not to push myself so hard.
Ladies you keep me going, thanks for everyone sharing what they are going through. I always look forward to reading everyone's messages.
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Hi all! I gained 20lbs!! I hope it goes away like magic, but somehow I doubt it! Hang in there!
Lou
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I blogged about having a good cry the other night so I thought I would share. I must have cried for 20-30 minutes! And I don't cry like that EVER! In fact, my husband said he could not remember the last time I had cried that much. I didn't even cry that much when my dad died. And I think that was part of it. My father died 6 weeks before I was diagnosed and I didn't ever really finish grieving. Anyway, I guess I needed to do it although it makes me feel weak. But its done and hopefully I won't need to do it again.
Just wanted to check in and say that I spent another day in bed and on heavy Darvocet due to Neupogen shots. At least it was only 1 day this time! There's the silver lining! Still feel achy but am ready to chalk that up to chemo overall and next Friday is round 4 and the last one! I think I will celebrate that afternoon with loads of something liquid and hopefully alcoholic! Fingernails are finally looking weird. One looks like it wants to come up - sure hope not!
Hope all of y'all are doing well.
Thanks for listening.
Wendy
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Hi All - Day 2 for me went ok. I am doing the claritin thing. My legs started feeling a little bit sore after dinner...kind of like after a long run...so not too bad. I am hoping that Day 3 goes ok as I want to take a road trip to see my son run in the ODAC Indoor Track meet. He is a jr at Bridgewater College and will be running the distance medley relay, and the 5K. Hope everyone's se stay away.....and we all sleep well.
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Hi ladies, done with 2nd TC today!!! Yeee-haahh! I didn't know I would get this far, but I did. Thank You Lord!
Wendy, you're on your last one - I'm so happy for you!!!
Goldilocks, I almost went to Dr Hampe in Presby Plano, but due to insurance issues, that didn't happen. Is he your doctor? If so, he's the most gentle, wonderful, caring doctor!!!
Hope everyone who had their treatment today are feeling well. Sleep tight tonight!!!
God bless,
Aurora
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-Kathy the story brought tears to my eyes-thanks for sharing
-Aurora It sounds like you are doing pretty well, I'm so happy for you!! and I'm coming for leftovers tomorrow ha ha
-Sharon I hope day 3 is fine and gets you to that track meet
-Wendy Sounds like you are a bundle of emotions, so happy for you it is closing in on the end of tx--pray it is easiest of all-all my onc nurses say the nails happen towards the end-hm
-I had a fabulous morning at the gym,(wore my pink bandanna/no wig) rode the bike---an 81 year old woman on the recline bike next to me reached over and touched my hand and said, "I had it when I was 60" we talked for an hour she was so sweet & lonely she shared losing her husband 2 years ago--angel
--we attend same church so I told her I will look for her -my evening was not so hot- metallic taste is worse yet, I had bad gas & what seemed to be constipation & then diarrhea, I took the compazene and I felt better, yet my head every night is cold seems to throb (I even wear a fleece hat at night) and the head aches --I feel like I'm having most of the side effects to some extent and I just can not wait for that week 3 of humanity again!!! Will take ativan need sleep tonight!!!! God Bless All
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Good Morning: I've been very tired this week - more so than this period during the first 2 tx's. I think it's about day 8 that the Neulasta starts to come out from the bone marrow. Monday night I was so cold and couldn't wait to get to bed.....same for the next few nights. Thurs I felt better and I had more energy.....tho my lower back is achy now.
Had to have my head shaved again last night....it's growing like mad in areas. And it's all white - UGH. Eyebrows and eyelashes have thinned but are hanging in there along with the nails......
Believer: Hooray for you! You're half way done and can start to see the light at the end of the tunnel.....
Sharon: Maybe you'll be one of the lucky ones and have minimal s/e's.....my first tx was a piece of cake and tho each tx brought on a few more s/e's they still haven't been as bad as they could have been. Thank God for small favors!
Wendy: You and I are heading toward our last tx next Friday - I can't wait to get this over with but now starting to feel a little apprehensive about radiation - I pray that we'll be among those who say "gee, this is a cake walk compared to chemo"....... I'm glad you were able to have a good cry - they say it's good to get it out.
To everyone else - have a wonderful Friday..........
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Hi all,
Wendy & Trina, I'm happy for you but I am SO jealous of you coming down the home stretch. I knew this would happen, since I'm behind schedule anyway because of being sick, and then I'm getting 6 x TC instead of 4. I'm scheduled for tx #3 next Wednesday, and then I'll only be 1/2 way done. I'm looking so forward to spring, but it'll be chemo until May. I'm so bummed about all of that.
Wendy - you just go ahead & have a good cry if you want to! I've had a cold for more than 2 weeks now, and there are times when I feel like crying, but I resist because I don't want to get the runny, stuffy nose more than I already have!!!
How ridiculous is that??40Something - I loved your gym story. It's also great that even though you don't feel all that well, you are still going.
To everyone with the lousy se's - hang in there! Enjoy your good days when you have them. It will all be over before you know it!! Even for me...
CHJ
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Hi all! Briefly out of the Bendaryl fog, soon to enter the chemo fog for the weekend. No bone aches yet today (started the claritin last night); it usually starts tonight for me, so I'll see how it goes.
Wendy, Goldilocks, and 40 somethingmom: Hope the SEs don't keep you down for long. Hang in there.
Crying's good... and needed along this hellish journey, so let it out!
I've also heard the nails seem to go at the end. Ugh!
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Off in 15 minutes to my 3rd round of tx. Wish me luck and no vomitting - yeah that's a pretty nice thought for the morning, but you guys are family and know the feeling.
Can someone tell me about this Claritan regiment before the Neulasta shot. Going in for the shot on Sunday. Yes, it put me on my butt and in pain the last time, but I didn't have to return to the hospital so I'll just suck it up and do it again. I prefer laying on my couch than a hospital bed.
See you ladies in the afternoon. have all good days.
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Morning all!
Am feeling a bit better today, and did come to work. The onc upped my pain meds and said that I need to keep on a very rigid schedule so I don't feel so much pain. He said that not to worry about getting addicted, lets just focus on managing the pain. That made me feel good. So, my hips and lower back still hurt. Thing is I can not move around without being in total agony. Hope to be feeling better by tomorrow, of course that is if I don't have to go get a shot today. The shot I know is to help my white blood count, but there needs to be a better way
. I do like the dr says, I just know that this is the place to vent. My hubby is so patient and I don't want to be a grump. I haven't put on weight so far, but it has only been a week since the first round. I have however started developing chemo brain. I'll start a sentence and then just forget. I then remember 20 or so minutes later what I was saying. Any ideas on how to keep out of the fog? Have a great day all. Believer, my dr is Gressler in Richarson. Very personable.
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sitting in the chemo factory now...have laptop and broadband wireless. yup, I'm a techno junkie. Doing some work before they give me the Benadryl mix - then I'm out like a light.
The port is plugged in and I'm waiting for my lab results to come back before they really start the show.
goldilocks: the chemo fog - I have decided to just pretend I meant to do something or say something odd from the chemo fog. Then i email my friends about what happened so they can share in the laugh. You can always say "chile, I don't know what the hell I'm saying I have chemo fog". Folks don't seem to get so pissed when you say that.
I did find one great about having chemo today - I got out of attending a god awful political banquet tomorrow night. Ticket sales are going slow (and yet they haven't clued in that their banquet is exactly the same boring event as it has been for the past 10 years) so they called me yesterday afternoon to see if I would attend. I'm telling you in felt really good to say "oh I'm sorry I can't attend because I'm having chemotherapy on Friday and will be too drowsy to leave the house this weekend". It took the guy about 2 minutes before he could reply. Whoosh, slam dunk, I'm outta that event.
OK lab results are still not back..this party needs to start soon. Princess can't lie here all day
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Lab results are back. White Blood count is 3.1 - they say that's good so I'll go with it. Red Blood count is at 11.1 - they're debating now if I will need a Procrit shot. never had one before and the nurse claims that there is no se from it. Not sure I'm believing that - haven't had one shot in my tummy that hasn't resulted in some se.
Party is about to get started. Waiting for the drug dudes to wake up and fill the IV bags.
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50 mg of the Benadryl mix is now flowing through the port. Sleep will begin in about 20 minutes. Lesson learned from the 1st tx - never answer the cell phone while under the benadryl influence. Whew, you have no idea what committments you are making and agreeing to.
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Taxotere is flowing now through the IV. 1 hour wait time.
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Bdatlanta: You crack me up, writing while infusing! I am losing the battle much faster today-- tired earlier this round than the others. I'll probably be off for a nap soon. Oh well! I'll wake up sometime Sunday or Monday I guess. Having trouble typing well, too. The Claritin thing: take 10mg once a day, starting the day of the neulasta shot (I took my first dose last evening, got the shot in the afternoon). Continue taking daily for up to a week. I've heard most can stop taking it sooner, like after 5 days. Since this is my first time trying it, I'll let you know how it goes. I didn't get awful bone aches before, but they were enough that I figured I'd try the Claritin this time just in case the aches were going to get worse. Good Luck!
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Great news everyone. My blood work was good, so I don't need to take any more neupogen shots until the next round. Sure am looking forward to not having the bone pain. Granted I understand that I will be still losing my hair, but that doesn't hurt. I will just be bald and beautiful, without bone pain. The people here at work say I look a bit pale, but I am eating good and just trying my best to stay healthy.
I work with alot of paper, so I have been wearing gloves to prevent cuts, germs, etc. I really forgot how dirty paper can be. I also have the antiseptic gel to use. Trying to stay health and on top of it. Hope everyone has a good weekend. Bdatlanta, keep the faith!
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still here at the chemo factory ;(
didn't fall asleep from the Benadryl. I was like a 2 year old - just fighting the sleep monsters. I won! (for now anyway, the sleep monsters will win all week).
Got the procrit shot. Question: is it necessary for them to stab you so hard in the tummy? I had to give the nurse my rule: tummies may not have nerve endings but they have feelings and this shot is feeling like a lot of pain. I really wanted to say "back up crazy stab and run nurse".
Now the Cytoxan is flowing through the IV.
Crazy as this sounds...but I'm having a nicotine fit. Made my nephew raid the candy machine for chocolate candy bars and spearmint gum.
Just had a funny chemo fog moment while receiving chemo: went to the bathroom and unplugged my IV. When I came back in the room I decided to stand and type this post (butt is getting cramped lying in bed). So I'm just typing and typing away to you ladies and my nephew says "hey don't you need to plug back in". I was like "plug what? no, I'm good, the laptop is still charging". He was like "no goofy, your IV". Oh shit forgot about my ball and chain. LMAO.
Oh yeah, got a bonus gift today. Some woman who runs one of the cancer outreach programs here came by with a hatbox full of hats. My nurse told her about my baldness and out of whack body temps. So she came to my room to show me her goods. First she started pulling out all the chemo hat styles from the 70's, when wearing a turban like hat was chic. I looked at my nurse who is close to my age and was like "huh?" Then the lady pulled out hand knitted hats. Not trying to rag on hand knitted hats but if its not the Christmas season, one shouldn't be wearing hand knitted hats out in public. Plus knitted hats have all those holes in them - not sure I need filtered air hitting the scalp. So I settled on a really cool bright pink fitted hat. Snugs the head very warmly. And it was free. Bonus!
KathyL: thanks for the Claritin tip. Will try it on Sunday.
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bdatlanta - you are really funny giving us the minute-by-minute action from chemo-land!! When I went in for my first treatment, one of my coworkers told me to take my Blackberry. Now, I have that thing from work, and I never use it. I've tried to turn it in because I have no need for it (I'm not in an on-call type of job) but my boss told me to hang onto it. I usually just keep it in a drawer. But I took it to chemo, and emailed a bunch of people while I was getting infused. It was hilarious, because I'm not that good at using it anyway, and with the Benedryl making me groggy and those tiny little keys, it took me forever to compose a message! But I have to admit, it made the time go faster.
CHJ
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