Anyone on just Taxotere and Cytoxan?
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Thanks for the encouragement Otter and congrats on being through and finally seeing light at the end of the tunnel. Yes, I am counting down and am half way through. I know I can do this but its very hard to stay positive sometimes
I do eat the fresh veggies and fruit but I wash them very well. I can taste the fruit better that anything else. What's better than a ripe sweet watermelon......no seeds of course or a plump red juicy strawberry......yummy. Making my self hungry now. Sweets seem to be it. Chemo hasn't destroyed those taste buds.
I am one of those that burn once than tan. Not so with the chemo. I actually forgot a couple weeks back to stay out of the sun and did get a good burn it hurt and I did not feel well. The dr scolded me for it when he saw my arms.
Well gotta go make dinner and feed the critters. Hope evrybody enjoys their weekend
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pmwelser
ladybugcyndi
RJ62 and anyone else who is Triple Negative-
Didn't know if you've been to this website for Triple Negatives:
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Hello everyone. Just back from a conference in DC. I wasn't sure I could go cause last week I developed neutropenia (WBC was 0.9!). After a couple of injections of neupogen, it went back to normal. This Friday will be my second TX, I really hope I don't have increased SEs because to be honest, the SEs after the first were not that bad. The NPrac asked if I wanted to try neurolasta during the next treatment but after reading all the posts about the SEs I'd rather take my chances with neupogen; my SEs were minimal and three Advil made them go away. The thing that bothers me the most is the uncomfort I have under my arm where I had the lymphectomy. It drives me crazy! If I put my arm up, the annoyance goes away. Any ideas. I try ice snd that seems to work
Wayne
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Hello everyone. Just back from a conference in DC. I wasn't sure I could go cause last week I developed neutropenia (WBC was 0.9!). After a couple of injections of neupogen, it went back to normal. This Friday will be my second TX, I really hope I don't have increased SEs because to be honest, the SEs after the first were not that bad. The NPrac asked if I wanted to try neurolasta during the next treatment but after reading all the posts about the SEs I'd rather take my chances with neupogen; my SEs were minimal and three Advil made them go away. The thing that bothers me the most is the uncomfort I have under my arm where I had the lymphectomy. It drives me crazy! If I put my arm up, the annoyance goes away. Any ideas. I try ice snd that seems to work
Wayne
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Wayne, I don't have the answer, but I know what you mean about the armpit pain/discomfort! It seemed to me that about a week after each treatment it got bad and then improved until the next TC. I also had neupogen, but on a scheduled basis to prevent neutropenia rather than treat it when it happened.
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Hi Revkat,
What was your schedule of neupogen?
Maybe I will suggest that I do that
Wayne
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I had 5 daily injections begining 3 days after chemo. I have no idea how they decided on that, I know there are some others who have had shots from day 2 to 10.
I meant to tell you in the previous message that my family got really tired of hearing me complain that my armpit hurt after surgery. It does get better.
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Hi all, just found this web site. Diagnosed on March 11 with triple negative BC. Had a bilateral mastectomy on April 1 (some April's Fool's day, no). Lymph nodes were negative. I am the 4th in my family with BC so my onc recommended 4 tx of taxotere & cytoxan, spaced 3 weeks apart. My 3rd tx was on June 17 and I ended up in the hospital for 3 days. Initially my onc thought I had a blood infection but all the cultures came back negative so I guess it was just a severe reaction to the chemo.
I meet with my onc on Thursday to discuss whether or not to continue tx. I am concerned that I will have another bad reaction. I've had Neulasta the day after every chemo - had bone pain after the 1st & 3rd but not the 2nd. My hair started falling out by the handfuls on day 10 after tx one. My husband gave me a buzz cut and I still have some of that but have lost underarm hair, nose hair and chin hairs (that's a blessing). I also have rosacea so have been dealing with lots more facial redness, dryness and pustules.
Is there anyone out there who has had a bad reaction to TC? Did you continue with your course of tx? One of my problems is that I am supersensitive to meds of any kind and can't take Benadryl.
In spite of all this, I feel that God has blessed me with a wonderful onc and a huge support group of family & friends.
Genieruth
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Thanks RevKat. How were the SEs after neupogen?
Also, Genieruth, what were your SEs like after tx 2?, and how were they after neulasta?
Wayne
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Uh oh. Today is the hair letting go day. It's held on until day 19 from tx #1. I'm trying to keep a sense of humor about this!
I think most of you have already gone through this so I just thought I'd put my hand in for a little commiseration! Anyone else to the just-starting-to-fall-out stage? I've had it cut to about chin level, but it's thick and now that it's coming loose I'm not sure what to do. I'm not going the hard-core shave route because I'm hoping that, like Otter, I won't lose every single bit....but I'm thinking maybe just a general hacking off all around, like a mental patient in a movie type of look. I need to go take a shower but I'm dreading what I'll find stuck to the tub. ICK! Maybe I'll just go outside and brush it vigorously and let the breeze blow it away. Oh boy. This is NOTHING compared to chemo s/e's, which I'm getting anxious about again with tx #2 being this Wednesday. (How many things can I worry about simultaneously?) Perspective! 0 -
Hi Catlover,
I am on day 13 and still waiting for the hair to fall out! Every morning I wake up and check the pillow to see if my hair is there or still on my head. I actually have trouble sleeping worrying about my hair!!!!
I too cut my hair fairly short, 3-4 inches left, to get ready for chemo. I too was planning to take the "hacking" option versus shaving since I too am in denial that all of it will actually fall out!
My next tx is next Wed so we are just a week apart. So far my SEs have been minimal so the hair falling out thing is the biggest one that I am facing thus far!
Last night I told my DH that this whole BC thing is really hard when I am so "high maintenance" and care a lot about my appearance. The idea of being bald, having my foobs "under construction" and having gained a fair amount of "stress weight" is all more that I can take some days!
You are not alone and sometimes perspective is hard to find! I hope that I can keep my sense of humor when it is my turn to let go of my hair!
Valerie
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Catlover,
I too was trying to hold out like otter but think I might go ahead and shave it tonight. Today is day 26th since 1st treatment, 5th day out from 2nd treatment. I was hoping to keep the scraggly stuff around base of neck and by ears. At this point I think shaved would be better then just barley there. And about your treatment #2, so far this one has been way better then 1st and 1st wasn't bad. Stop thinking about it and enjoy the almost normal days you have left before Wednesday.
Genieruth,
There have been a few that had bad reactions, hopefully they will reply to you. I can't remember what they did afterwards.
Otter,
Well I'm doing a lot better this go around. Don't know if it was infusion ice-packs, B6, udder cream or all combined. Last time I was red and sore for a few days by now but am happy to say think hand and foot syn skipped me this treatment.
As much as you research everything, was it onco decision to put you on Arimidex as opposed to Femara or Aromasin? Or did you both mutually agree on it?
Enjoy the day, Karin
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Valerie, I know what you mean--I'm typically "high maintenance" myself about what I look like! Don't you think, in a way, it'll be so much easier to not have to worry about what our hair looks like for a few months? (Are you doing 3 or 6 treatments?) I bought a couple of cute hats online (not the traditional chemo-scarf looking things), and I have a couple of bandanas, so getting ready will just consist of slapping on lots of mascara (I hope the eyelashes hang around for a while...I don't know how to put on fake ones) and plopping one of them on. I have a wig too, but I doubt I'll wear it much--summertime in TN is not conducive to wig-wearing.
I was having crazy dreams about my hair falling out for about a week, and doing the exact same thing, checking the pillow every morning! My head got kind of sore, like when you take it down from a tight ponytail kind of feeling, a few days ago, then yesterday when I combed it after washing it, more was left in the comb than normal, so I had the "uh oh" moment. I told my crazy husband and he said, "Can I pull it and see what happens?" I said sure, as long as he didn't get grossed out by what wound up in his hand! Gotta laugh, right? I think I may ask him to play Flamboyant Hairdresser this evening and let him cut it short all over. Who cares if it looks bad--I'll be covering it up anyway. Karin, maybe you'll be shaving your monk 'do at the same time? Thanks for the encouraging words about the next treatment....I'm trying to do "mind over matter" and just decide that all of them will go as well as #1. Same for you, Valerie!
OK, I'm going to take a shower now......gulp.
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Day 21 of tx 1.
Oh, the hair, the hair! Catlove and VGB, I can completely commiserate. I let dh do the buzzing thing over the weekend. I just couldn't take the mess anymore. I still have about 1/4 inch in most places, but there are definite patches missing. I have opted to do wigs since I am still working and meeting with clients everyday and Erie is a lot cooler than TN. It is not so bad, but I do look like my brother without the wig. I will have to send him a picture. We never thought we looked much alike. Who knew?
I am getting ready for round 2 tomorrow and will be packing my goody bag tonight. Thanks to everyone for all of the great advice about ice and udder cream and also to RN Karen for the info on the triple negative site. We are truly a rare breed.
Good luck and no SEs to all who are getting their tx this week.
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I'm glad to hear most of you are doing better (except for the hair thing, of course).
Karin, I had read a report from a study (the "ATAC" trial, I think) that said women with ER+ PR- tumors like mine did very well on Arimidex. The comparison was to Tamoxifen, though. There still hasn't been a published report of a head-to-head study of the 3 aromatase inhibitors. The "FACE" clinical trial is doing that with Arimidex and Femara, but the results will be under wraps for quite awhile yet.
So, except for that report on the ATAC trial, I let my onco decide. She said she didn't think there was any real difference between Arimidex and Femara, and she liked to start with the drug that had been out for the longest time and about which there was more known. That sounded logical to me. I also got the impression that if I had trouble on Arimidex, she would be willing to switch me to one of the others.
The 3 aromatase inhibitors aren't exactly the same. I think Arimidex and Femara are non-steroidal drugs that bind reversibly to the aromatase enzyme. Aromasin I think has a steroid structure, which makes it behave a little differently in the body; plus, it is an irreversible inhibitor of aromatase--it binds and does not let go. I've read that sometimes if a tumor becomes resistant to Arimidex and Femara, it will still respond to Aromasin, because of that difference in chemistry.
My excuse for not updating our TC schedule is that I've had a nagging headache all day today...
otter
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I had my simulation and tattoo today. They suggested rather than tattooing at this time, to mark it and cover it with tape. They said sometimes they had to make adjustments once rad was started and you could only be tattooed once. Once they are sure everything is good, they'll tattoo then. I am scheduled to start on July 7, with will be day 13 of my last treatment, if my blood counts are up. I'm guessing they know enough to think the counts will be high enough. I will have blood work just before we start. This finishes me up on Aug 20, 4 days before school starts.
I hope everyone is having a good day. I am looking forward to Wednesday, my last tx, and hoping that se are a minimal as they have been up to this point.
Lee
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pm, that is hilarious that you found out you look like your brother with the hair gone! For some reason I found that really funny. I don't have any brothers, so I guess I'll just look like a random guy (or maybe my dad? Eeek!). I told dh he can cut my hair tonight and I think he's actually looking forward to it. Easy to amuse, apparently. I guess I'll just have him clip it all over to maybe an inch or so....? I put on a bunch of eye makeup so I'll feel like I still look at least a little bit girly. (If a 44 year old can look girly, that is.)
Everyone, feel good!
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Lee - I am right there with you waiting for Wednesday to be over and start growing hair again.
Karen
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Hi Catlover,
I am doing 4 total tx so I have 1 down and 3 more to go! You sound a lot like me....I bought a bunch of new eyeshadows and am hoping my lashes hold on so that I still look "girlie" even at 48!
So I have 2 wigs, here in Northern CA it is hot but I really like my wigs, a bunch of hats and a bandana...no scarves for me! I even bought some "fringe hair" to wear with my hats! The good news is I love Halloween and dressing up so I am looking at this as one long "costume party".
Otter, thanks for the info on AIs as this will be next for me and I will be speaking with my onc about this at our next appt!
Hi Lee...glad to know things are going well and you are almost to the end of chemo! I still have my tats from my rads 2 yrs ago ....was thinking about having them removed. I do no know why they couldn't use "brown" dye versus black so that they blend in with freckles better!
Wishing everyone a good night!
Valerie
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Catlover - I had blood work done around day 10 after each tx. White blood cell count generally would be at the lowest point between days 10 and 14 during a 3 week cycle without having a WBC booster shot. Re: hair loss ... just keep telling yourself that this is a sign that the drugs are doing what they are supposed to do. It will come back. If you have your wig and/or hats and scarves, it might be easier to get a buzz cut now and not watch most of the hair come out. I lost 90+% of mine - looked like a fall-out victim until I cut the remaining longer hairs. I'm now 8 weeks out from my last tx and have enough hair that I am going topless more often now.
Genieruth - I had a reaction on TX#2. Onc stopped the taxotere and changed me over to Abraxane for my final two treatments. Know another gal whose insurance wouldn't cover Abraxane for her so she's finishing up on CMF after her reaction to taxotere. Amazingly, lots of people just get extra benadryl and do finish up on TC. Glad my onco and insurance gave me the option for an alternate drug.
Valerie & Catlover - you also might want to wear a satin-type sleep cap to contain the hairs that do come out while sleeping. Sure is easier than cleaning up a mess. As for looking "girly" - check with your Cancer center or local American Cancer Society to find out about their "Look Good Feel Better" program. Lots of cosmetic companies have donated make-up to the program and each participant gets a kit to take home.
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Genieruth - I had reactions after rounds 2, 3 & 4. I was hospitalized after round 2 because they thought I had an infection, # 3 onc changed some meds but still ended up with a reaction - stayed at home but was mighty sick for 24 hours. #4 I was admitted to hospital for chemo instead of going to outpatient clinic - started steroids 12 hours before chemo, gave me Benadryl. I had only a slight reaction after #4.
Deb
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Genieruth - I had a bilat mast 3/06/08 with tissue expanders, negative nodes and am on the same regimen as you - 4 tx of T/C at 3 week intervals. I've had some of the usual se's but the only adverse reaction was an unusually serious return of my eye inflammation condition I've had for years. After 2 weeks on oral steroids, it was much better although still active. That was after my first tx 4/22. Further tx's were in question but my onco decided (with my consent) to go for it and it's been fine. I guess the eye thing will continue until chemo's over but it's not nearly as bad as it was. I too feel blessed to have my family and md's. I wouldn't change any of them - not that I could change the family.
Catlover, VBG, pmwesler,Valerie and anyone I missed - Hair loss is still the worst. I guess because it lasts so long and I'm so uncomfortable in my wig. At least, as others have mentioned, it's great not to have to shave. My hair loss started day #14 of tx #1 but enough held on until day # 18 for some family events. I never found much on the pillow but those dreaded showers! It really was a relief to have it buzzed short by that time. Hair loss is depressing but as my bald dh and balding ps have said, mine will return. How long do we have to wait? I wonder what the average time is? I haven't had the courage to ask my onco.
Catlover - where did you find your hats?
VBG - I'm not sure where you are with foob reconstruction. I'm not done but looking better. It's been 3.5 months which seemed like forever when I started but has really gone by quickly now that I look back. So glad there are you friends out there who understand. You had me laughing. I had rads 5 years ago and completely forgot about the tattoos. I just checked and some are still there even though I had the bilat mast. Not Fair. And mine are bluish gray. I can't wear eye makeup except for my eyebrows and know I would look much healthier if I could. I want to look into tattoo eyeliner when this is over. Does anyone have experience with that?
Otter - I'm sorry about the headache. Do you see much improvement yet with other se's? I want to see you well!
Tx #4 tomorrow - last one. Off to get another glass of water. They had a really hard time finding a vein last time and I don't want a repeat. I'm taking popsicles with me this time along with the ice water. My mouth se's were so much better after finding out about keeping one's mouth cold during tx and I want everyone to know. Thank you all for the advice.
Good night to all,
Sandy
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Wayne, tx 2 was a little harder than #1 - just more bone aching, no energy, no appetite and it took a little longer to feel normal (about 1 1/2 weeks instead of 1 week after #1). The worst thing was the lack of taste buds. I also developed sores on my tongue and in the corner of my mouth. I didn't have much pain from the neulasta after #2 and Tylenol took care of that.
Genieruth
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Deb, thanks for the info. If my onc recommends continuing chemo I will ask about Abraxane. Wish I could take Benadryl - maybe there is something different I could take. I'm anxious to avoid another repeat of the reaction to tx 3.
Genie
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sandym, except for this silly headache and some general weakness, I'm doing pretty well. I am really, really glad that I'm not looking at another treatment this Wednesday, though.
My dh and I just watched "Breast Cancer Diaries" on LINK TV tonight. I had no idea it was on, but had been wanting to watch it and just stumbled over it while checking our DirecTV schedule. It was very touching--it really was a video diary done by a 38-year-old woman dx'd with Stage II BC. She taped her experience from before her surgery all the way through chemo and rads. It brought back a lot of memories.
OK, here's the TC schedule for this week and next week. Some of these dates are calculated from dates of previous treatments. I'm too late to congratulate TN-Michelle, who had her last chemo tx today!:
Week of June 23 (this week):
Mon. June 23: TN-Michele (#6-done!)
Tues. June 24: delmonica (#5 of 6), sandym (#4-done!), deecsw (#2), pmwelser (#2), LizC (#2)
Wed. June 25: beachmom13 (#4-done!), Kfalls (#4-done!), catlover44 (#2)
Thurs. June 26: Senora (#6-done!), Tigwin (#5 of 6 TAC), RJ62 (#4 of 6)
Fri. June 27: RNKaren (#5 of 6), nmjohn (#3), chloecat (#1)
Week of June 30 (next week):
Mon. June 30: collector (#3), SusanDL123 (#3), katiesmommy (#3), Stickerlady (#2)
Tues. July 1: nobody?
Wed. July 2: Lenny (#4 of 6), Boo307 (#3), VBG (#2)
Thurs. July 3: robink (#4-done!), Skarem (#4-done?), rogam (#3) Debbiem425 (#3), judianna (#3 of 6), ggrose (#3), youlooklikeyouneedabeergirl (#3), BBLady (#2)
Fri. July 4: nobody?
TC warriors, fight on! Seriously, I hope those of you with tx's tomorrow have a smooth day, and the rest of you have minimal SE's.
otter
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Deb - sorry you had bad reactions but I don't feel alone after hearing your experiences. I took steroids the day before tx 1 but had such violent headaches that my onc recommended just having the steroids in my pre-meds. If that would prevent the severe reaction, I could deal with the headaches.
Sandy - I elected to not have reconstruction - I am 67 years old and have been married for 47 years. My sweet husband said my boobs were not me and that they were not the reason he loves me. I love the suggestion of taking popsicles to chemo - I've had the ice on my hands and feet but no one ever said anything about drinking ice water, etc. during chemo. The mouth se's have been one of most difficult things to deal with.
Thank you both for everything. God bless you all!
Genie
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Genie, I didn't take popsicles, but my chemo nurses did offer small cans of fruit juice with a cup of crushed ice each time. I don't think they were doing that to prevent mouth sores--it was just one of the few perks they had to offer in the bare-bones infusion center where I was being treated.
Nevertheless, I always made sure I had a cup of crushed ice to suck on during each infusion. It wasn't a real experiment, so I have no idea if it helped. The Taxotere caused my mouth to be very sore and my tongue was swollen 3 to 6 days after each treatment, despite the crushed ice; but I never got any actual sores in my mouth. I was careful to brush my teeth at least 3 times a day with an extra-soft toothbrush and mild toothpaste; and I rinsed several times a day with a salt/soda water solution during the sore-mouth phase. I suspect those helped more than crunching on a few pieces of crushed ice. Keep in mind that the chemo drugs are circulating in your body for one or two days after the infusion, so whatever you do for a few hours during the infusion might not be enough to really help.
otter
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Yes, I'm done! #6 was today. Now I'm both tired yet full of energy from the steroids - how can that be? Congrats to you others finishing this week too!
It was a strange feeling to be sitting in the chair watching the last few drops from the I.V. drip down. Like it was the last of a safety line. But a good feeling too.
Sure was disappointed to hear I have to keep the port in for up to a year, for blood work and of course in case I need to use it again for more chemo. But I'm not going to think about that. Just assumed it would be taken out sooner rather than later.
My head looks like a newborn's, with very short soft fuzz all over, even around the temples and above the forehead (those two places just happened this past week). My 12-year old son calls me "caterpillar" and likes to rub my head. I'm hoping to be out of the scarves by my birthday in late October; have no idea if that's a good timeline or not.
I took the kids with me for the first 15 minutes today, to let them meet my oncologist and see the chemo room. They also got to see the lines get started in my port. They were very interested and glad to see everything.
I'm starting to read the rads threads to prepare for that next step, but for now I'll be coming here just as often as I have been.
Good luck everyone with tx's and se's. Hang in there!
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TN-Michelle -Congrats to you, and I know the feeling of the loss of a safety line. I finished my chemo on Apr 30th and will finish rads next week if all goes well and I too have that feeling of being on my own after this, but will just try to live a day at a time..
I am feeling more like my old self these days, getting back to my running and my hair is coming back....I told my dh this morning that I am going to think of my hot flashes as watering my hair to make it grow faster.
Really the hot flashes and waking up at night are my biggest problems now and of course the very red foob and scar
I wish everyone here a good day and limited se
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sandym, I got my hats from a website called (I think) Hats With Heart. There are a lot of really ugly ones there, but if you spend a little time searching around there are some cute ones. The ones I got look like normal hats, but they just come down a little farther and cover you up a little more. Valerie, I'm also not doing scarves, but just bandanas and whatever hat looks reasonable....I think I've seen too many made-for-TV movies about Tragic Cancer Victims wearing scarves and lots of gray makeup around their eyes, know what I mean?
DH did a great job on the coif last night--it's about an inch long all over and very comfy. I had the dramatic makeup on the eyes, so I did still look girly afterwards! Every little bit helps! I do have some little caps to wear at night that my 84 yr old grandmother knitted for me. DH said when he saw me sleeping in it this morning, I looked like a little newborn in the hospital nursery. I seriously doubt that, but at least I'm not worrying about hair all over the pillow (and I do appreciate him being so sweet). So far the shower is the place where mine comes out the most. Just trying to catch it before it gets past the drain cover and clogs everything up! Yuck.
So happy my DD (who lives 12 hrs. away) is coming to visit next week! She was bummed that she wasn't here to cut my hair, but I told her a style wasn't important. She would've spent an hour trying to make it look stylish & cute, only to have it drop out shortly thereafter!
Thanks for keeping track of us all, as usual, Otter. Good vibes to everyone!
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