Anyone on just Taxotere and Cytoxan?
Comments
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bd - you are a riot. Thanks for keeping the rest of us entertained, even through the crappy stuff!
Tomorrow is a busy day - I found 4 of us lined up for the chemo cocktail: me, debap, jt1945, and swimmer60. Who else? One more tx means one more step toward the end of this stage of treatment! Good luck!!
I made my first appt. with the rad onco, for May 2, which is 5 days before my final chemo. I just want to keep things moving!! It took so long for every step of my tests and surgery and getting started with chemo, that I don't want to have any delays in getting radiation started and done with!!
Later!
CHJ
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CHJ and others: Good luck tomorrow. One more step towards being done!
BD: Girl, if they don't take you in that group, they are missing out! And I can't believe your rads group can't find a more convenient time for you especially since it's due to a work conflict-- that sucks. Hooray for the ability to shower now. Why do they bother to mark you up if you have tats now???
Gotta run. Tomorrow I have to tell my office I'm not coming back. That should be a mess.
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chj127: I am so happy to hear you say that your 3rd was the "best so far". I am holding onto that and envisioning an easy, reaction free treatment. No room to complain though, I only had to have 4 rather than 6 treatments. Our last will be such a relief! Do you have to have radiation for 7 weeks?
goldilocks: I haven't had any problems falling down. Please make sure you check on that. Is your onco easy to get access to?
algw: Maybe shaving your head won't be as traumatic as you expect. I didn't cry, just thought of it as inevitable. I was hoping it would be liberating, but not so much. I have to say though that it has cut down the time it takes me to get ready in the morning. Now I jsut have to coordinate my hat to my outfit. My son had a PICC line for part of his treatment. His lasted for a little over a year, the miracle PICC line! There is a greater risk of infection but you don't have to be "under" to have it put in and they just pull it out when you are finished with it. You also have to flush it and put heparin in daily. Very easy though.
kathyL: I am so exicted that chocolate will taste good again!!! I know exactly what you mean about standing out with the bald head. Nobody would know at all if it wasn't for the hats.
bdatlanta: Do you think the bloating has to do with the Taxotere? My onco said that in some people the capillaries don't work as well causing fluid retention. The steroids are given to help, but some people gain about 10 lbs. I guess before the steroids people would gain 20-30 lbs. I think that if we have to be bald, sick, have deformed breasts, we should at least lose weight!! Not feeling particularly attractive right now! There must be a support group that is less uptight, seems a little stifling. Let us know how you make out.
Good Luck tomorrow chj127, swimmer60, and jt1945!! (I hope I didn't miss any Wed. chemo girls)
Debbie
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Good luck to all the Wed. chemo gals--may you have minimal SE's!
I see my onc tomorrow, then have the 4th/final chemo next Wed., the 23rd. Except for being really tired on days 4 & 5, the SE's haven't been bad after tx 3. They gave me a prescription with a 2x dose of the steroids, but I took them the same as for the 1st & 2nd tx--it's hard enough coming off 2 steroids, yet alone 4!
Steve - I hope Kathy's first tx went smoothly and that not having steroids before and after works okay for her.
DCMom - you asked about the "bee". It's actually for spelling "bee" from long ago days! Are you in VA? Is the DC for Washington?
I've been using tea tree oil on my toenails 2x day, which may be why I haven't had the sensitivity I had last time. I also put it on my fingernails once a day. I've noticed that neither set of nails is growing much so I don't have to trim them as often.
Sleep well everyone!
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Support Groups
I joined two different support groups neither of which had an intereview criteria but have to admit that when I sought out a group initially, I did get that same response. Apparently some groups are more structured with specific start and stop dates and what I will all a "closed" group - they start together, are expected to attend each meeting, and go through it together without adding anyone new. The two I participate in are what I call "open" groups - people come and go depending on their stage in treatment and availability - we do have a facilitator who keeps things moving but it really is OUR group and we talk about whatever we need that night rather than follow a preset program.
You may be wondering why I joined two groups ... the first that I try not to ever miss is a group at a local cancer support organization that is specifically for women currently in treatment for breast cancer. It meets twice a month about 10 minutes away from my home. More importantly, it is the most relevant for what I need right now - in addition to all of you, of course! The second one is a general breast cancer support group through the American Cancer Society which covers the full range of newly diagnosed through 30 year survivor, meets monthly, and is about 30 minutes away.
Bottom line is you want a group where YOU feel comfortable. Keep looking until you find the one that works for you.
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This is otter, reporting in on day 13 after TC treatment #1.
So, I'm sitting here watching reruns of Law & Order, and I'm absent-mindedly tugging on the hair at the nape of my neck (like I've been doing for the past 2 or 3 days for some reason!) and .... a tuft of hair comes out.
I'm shedding! Soon, there will be otter fur all over the place.
Oh, well. Actually, it was kind of funny. I tugged a few more times, and more tufts came out. How weird.
otter
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Debap,
thank you for wishing us all good luck for those of us that our doing chemo tomorrow. Has anyone got Aloxi as an antiemtic during my treatment. And then at home I am taking Zofran and Lorazpam. I hope by the weekend I will feel better. I have my appt with the radation people on Monday the 21st then last chemo on May 7th. then 6 weeks of radation and some where tamoxfin. Just want to get this all over with. I tried a support group but could not connect.Wanted to talk with someone that is actually going thru treatment. If anyone knows of a group in the East Bay in CA Please let me know? this posting has been great.
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All the Wedneday girls...good luck tomorrow...I hope it is very uneventful !!!! NO SE's For the Wednesday Girls !!!!
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swimmer - Yes, I get Aloxi in my drip. I have both Compazine and Zofran at home to take as needed, and I generally pop a Compazine or two in the couple of days following chemo, but have not really had issues with nausea. Constipation and indigestion, yes - nausea, no. After the 3rd tx, I found the perfect compination of laxitive & stool softener to fix the constipation problem, so I'm happy about that. Still playing with medications for indigestion. I'm planning to try Prilosec this time & see how that goes.
Yes, debap - I will have radiation after chemo also. I think my surgeon said something about 33 treatments, but I guess I'll see when I meet with the rad guy on May 2.
About support groups - yes, I think they help also!! This forum has been a Godsend for me. When I was dx'd in 1994, AOL had just started up and I found a chat room where there were about 15 women. Wow, that was a great group too. It was a real-time chat, and we met on Monday evenings. They were awesome. Back then, I also found a local support group for "younger women". I was 39 at the time, and was the oldest in the group of about 18 (not all 18 showed up every week, more like 12 regulars). It was led by a licensed social worker, and she was perfect for the group. The women ranged in age from 25(!) to 39, and most were in their early to mid-30s. This time, I have been "fortunate" to have a friend who is going through it at the same time, with all the same doctors. We are on the phone several times a week, and she has been my other primary support. She is taking me to chemo today. Plus, at work, we have about 8 survivors who meet sporadically for dinner (for the past couple of years), and we have been emailing and calling each other. It sure helps to talk to people who know exactly what you are going through!!
Otter, sorry time is about up for your hair. It's only temorary, it's only temporary, it's only temporary!!
See you all on the other side of the tx today!
CHJ
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otter: I'm right where you are. Pulling the hair out in tufts for 3 days now. Buzzing it tomorrow. My hair used to be nice and shiny and bouncy - now it's just lying there, lackluster, dry and limp - clearly, it has given up and is waving the white flag. It has served me well for 45 years and never complained - through pigtails, french braids, Marcia-Brady-long and straight, short and sassy, perms (a hideous one at that!), a punk phase, highlights, curling irons, hot rollers, flat irons,etc.......Farewell.
I hope it will come back better than ever!
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Swimmer - try a google (or similar) search for the following combination of words and see if something sounds interesting and is nearby: "breast cancer" "support group" "East Bay"
I too get Aloxi prior to my chemo drugs. It's done the trick for me - no nassua through 3 treatments. Yeah!
Steve - what was the story regarding the steroids (or lack of) for Kathy? Did they do it as an IV before the cehmo drugs or did she truly not have them? Hope she did well.
One more session down for many. Congrats.
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Morning,
Wishing all the sisters minimal se!
BD: For your interview for joining the "support" group, wear that orange hat you so proudly showed us a couple of weeks ago. Then make sure you have your "day" PJ's on, AND the good slippers. If they are so very serious, then they really may not be worth your time. I'm glad to be a part of this support group, even if it is virtually. You are tons of fun, and make me smile. Thanks for being here. I do hope you find what you are looking for, just keep searching, it's out there.
Ok, so I really am starting to feel better. (I do have mouth sores just on the inside of my lips. No one can see them, but the do bother me sometimes). Of course that always happens just before the next treatment. I am however looking forward to getting it behind me. #4 is next Thursday, last one.
Believer: It was great meeting you. Sorry we didn't really get much time to visit. Maybe some time we can just hook up for coffee?
Believer and I went to the LGFG thingy last evening. I am interested in hearing what experiences others have had at their LGFG meeting. Me personally, I was a bit disappointed. After researching it and some of the comments I had read early on, I thought it would be more of a sharing/hands on experience. We were pretty much a captive audience for a sales pitch for a store that operates locally. The speaker was not a cancer survivor, but her model was. The model really never shared anything. She was there to be the model on how to wear a wig, or scarf. Most of us were already in the wig/scarf or cap(me). I know that since I have done this before I am a bit braver to expose my head, but it seemed to make others uncomfortable. I was a bit surprised at the presentation. A friend went with and that made it fun. We were given a bag with a variety of makeup, and creams. The speaker pulled out her makeup bag and showed everyone how to apply makeup on her model. We just sat there and observed. There was no inner action. Funny, I guess that since were were adult females most of us wear makeup and probably know how to apply it. It was more like a cosmetic application class, with no hands on. At the end, the speaker said "hope you enjoyed your FGFB and playing with your makeup".
Alright, the food was good, and I got to meet Believer, and spend time with a friend. I personally think the program needs to be revamped to better help those interested in really Feeling Good AND Feeling Better. Just my opinion, but my friend also thought it was boring. No inner action! Sales pitch for their wigs! Believer, I may probably have a different opinion than you. I just hope that others were able to get something out of it, or others have had better experiences in their area.
Rambling.....Happy Wednesday.
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algw..The Picc line is put in while you are awake. I kind of freaked when I'm laying there and they said I'd be awake. The only thing you feell are a couple if prickes when they cut the little entrance. You dont feel the feeding of the tube into your vein at all. It goes fast and before you know it it's done. It took about 3 days to heal and I don't feel anything anymore. I did not have antibiotics.
The Dr. that did it told my this can only stay in 6 weeks. so when I was getting chemo I told them what he had said and they kust grinded. So who's right? It takes 12 weeks for my treatment.
Evie
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Good morning, all--
Goldilocks, I'm sorry to hear about the LGFB class. I was thinking about signing up for one, even though it would be a 2-hour drive because they're held at the center where I get my BC tx. I was kind of wondering, though--if you've already lost your hair and have figured out the headcover thing, that part isn't so important. And, for me, makeup has always been a challenge because of extremely sensitive skin (decades before BC) and an aversion to looking "made-up." I didn't want to drive all that distance to hear a sales pitch and come home with a sack of goodies I couldn't use. Maybe I'll skip it.
I wanted to say something about the schedule and the effects of the steroids we get with our TC regimen. I have a script for Decadron, but I'm not supposed to start taking it until the morning after my chemo tx. Then I take it twice a day (8 mg BID) for two days. I do also get Decadron in my i.v. as a premed on the tx day. I was told not to take any before my tx.
My SE's from the Decadron after my first tx were minimal, as far as I can tell. I think some of the things I was attributing to Decadron were actually from the Taxotere. Taxotere is known to cause major swelling and fluid retention, which can be life-threatening in someone who already has a problem with fluid retention. As some here have experienced, Taxotere can also cause serious allergic reactions, as well as "mild" symptoms like a skin rash and a hot, flushed face.
I got the hot, flushed face, and it came an hour or so before I was scheduled to take my next Decadron tx. Then it went away. I also gained SIX POUNDS within the first 12 hours after my TC infusion...but it was all gone a day later. I think that fluid retention was due to the Taxotere, since I continued to take Decadron for another day after that.
I think Decadron is our friend. After reading quite a bit about the Taxotere SE's before steroid pre-treatment was used, I would be afraid not to take my Decadron as prescribed. Maybe I'm more sensitive to the Taxotere SE's than usual. I sure hope not, because I want tx #2 next week to go smoothly!
Sending hugs to everyone, especially those going to chemo day-camp today...
otter
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Otter: just because my experience was not what I thought it should have been, every area may have a different program. I was just not impressed. Please don't cancel because of what I said, you may want to call to find out what they do. I don't want to discourage anyone from the FGFB program. I just am sharing what I experienced. I really am interested in other sisters experiences. Please share and hopefully you have had a better time than I did.
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algw and otter -- I'm with you on the hair. There is a part of me that is fascinated by the way I can just pull it out and another part that is horrified. When I woke up this morning I thought a lot must have fallen out overnight because it felt so flat. And it may have fallen out, but not off, I wouldn't know because I haven't touched it yet!
I just want to say that I have the best teenage daughters (3 of them!). They have been so encouraging about the bald stuff and adamantley say I can go around without a wig or hat and I won't embarass them! I don't know that I will in public much, but it is so nice to have their support. My husband, on the other hand, is having a much harder time with the idea of a bald wife. He's really very supportive, this just seems to be a tough one for him.
Hoping for a good day for all.
revkat0 -
Hi there,
I'm beginning to wonder what it is with the wieght gain in some of you. I keep loosing everytime I go in. Hopefully it's because of the NO appitite the entire first week. Or maybe it's the tons of water I drink. My body doesn't know what's up because I NEVER was a water drinker.
revkat..It's nice to have the childrens support. I have it too but the problem with the embarrasment is ME. Can't get passed it. I don't like "Hound Dog droopy eyed" looks.
Blessings to everyone today...few s/e's.
Evie
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BD .. you are too funny .. you sound like you have an "offbeat" sense of humor, much like myself. As for the going naked on top .. I have to give you credit, that is ballsey. I got tired of my once thick main falling out and shaved it on Saturday .. I have yet to venture out w/o a cover on, but do enjoy running around the house w/o anything on it.
Otter.. no more tugging .. that's how mine started, then what do you know? I'm shaving it ... I had to confess though, once I started pulling on my hair, it was kind of funny to see how much came out .. all I had left after I shaved it was little sideburns .. I pulled those on Sunday and had a hand full ..oh well, I guess they all have to come out one way or the other...
Goldi.. I haven't been to one of the LGFG meetings yet, everytime I go to see when the next one is, its months away. The hospital where I started my treatment at, has them the first wednedsday of each month. Of course, the National Cancer Institute works with them, so I don't know if that makes a difference or not. The problem with it is that its 3 hours each way, not feasible to go to really. Sorry it turned out to be such a dud for you.
Aw, so I am one day away from TC#2 tomorrow. I am looking forward to getting this one over with so I'll be that much closer. Has anyone else experienced the sloughing of skin on their hands? I had that great little itchy rash that taxatere can have with it and used the carmol 10 lotion they suggested. It helped with the itching, but now my skin is literally peeling on my hands. Its horrible looking! Good news is, chocolate tastes good to me today! One of our sales representative brought in a bag of chocolate for us, primarily me since she said she knows how much I love chocolate .. broke my heart to tell her I hadn't had chocolate for 3 weeks now. When I tried one, it was so good ... Of course, after treatment tomorrow, I'm sure it will go away for 3 more weeks ..
Best wishes to all having treatment today or tomorrow ...
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Revkat .. you know, when my husband saw my shaved head, he looked totally shocked and stunned. I mean, he knew I was going to do it, but I guess having seen me with thick curls for 21 years, it was a little much. I told him "it looks horrible, I know, you can say it cause its the truth. but its okay, it will grow back." I'm not sensitive about it at all. Our son is in Iraq currently, just left last week. I have been sending him "hair loss 2008" updates. When we talked on Sunday, it was pitiful to hear him when I told him I had shaved it. I just reminded him, remember all those times I shaved your head for you growing up and even when you were home on leave? I didn't like it, but I did it .. Of course, he does not want pictures sent to him .. although we are keeping a photo diary as I progress through my stages of balness.....
artsee... I haven't gained either and like you, it could be due to the fact that the first week following treatment, my appetite stinks.
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Good Afternoon Ladies!
OK, here's the rundown on tx#2...
First, Kathy and the nurse kicked me out because they said they don't need me hanging around and asking every five minutes "How you doin'? How do you feel? Are you ok?" I don't think I would do that, but since they were kicking me out anyway, I left. I have to say, though, we are blessed to have some wonderful ladies and a great doctor running the show at our onco's office. They make Kathy laugh, which is critical for her when she is nervous.
When I got back about four hours later, they told me she was sleeping (I guess dreaming Benadryl dreams). I found out later that she had an instantaneous reaction when they started the Taxotere flow. I've read that several of you have gotten this, so you know what I mean. So they hit her quick with a steroid shot (don't know what it was) and some Benadryl. And according to Kathy it cleared up very quickly, although she was real drowsy afterwards. She told me the whole episode lasted about 10 seconds. The nurse was watching her every second, and before she had a chance to say she was feeling funny they had already shot her up. Thank god these ladies know what they're doing and what to expect!
Other than that it went very smoothly. She was a little worried about being too wired to get a good night sleep, then fell asleep on the couch at 8:45 watching American Idol (which usually puts me to sleep too!) Other than having to get up once to go to the ladies', she had a good rest. Today she feels a little pink in the face (still the steroids, I guess?) but she feels good. This afternoon she has to do her Neulasta shot. The school nurse is going to come over to the house to do it for her, since she can't get the hang of stabbing herself with a needle on purpose.
Her newly shortened hair is coming out, so bald is not far away. But her sister came over yesterday to give her a ridiculously overpriced Coach scarf, which she is very excited about wearing.
All in all, #2 went well, just waiting for the Neulasta bus to come by and whack her one. Advil worked last time, hopefully it will again.
SO I'll end with a question. I hear lots of talk about steroids, 2x, 4x, before treatment, during. As far as we know, Kathy isn't taking anything other than Emend for the first three days and the Neulasta. What are the steroids for, and who's getting them?
Steve
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Hello Goldie,
It was soo nice to finally meet you (and your friend) :-> We definitely have to get together for coffee or snacks!!! That will be wonderful! Pm me and we'll hook up soon!!!
I guess you're right about the LGFG. I also thought we would have our own mirrors so we can put makeup on and stuff. I was going to ask her, but ran out of time :-< But I must admit, I love the free makeup - Estee, Lancome, Clinique, Chanel, not bad
So those who have not been to the class, but are scheduled to do so, you might want to ask the presentor to do the hands-on before she starts. Just an idea.Take care sisters (and Steve)!
Love,
Aurora
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Hi Steve,
I took Dexamethasone (Decadron/Dexone/Hexadrol) on Days 2&3 only. It is a corticosteroid that helps reduce swelling, redness, itching and allergic reactions. Similar to a natural steroid hormone produced by the pituitary gland. I don't like the side effects, like being up at night and bloated feeling :-< Is Kathy taking any?
Aurora
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Steve: I take Decadron also, 2 doses the day before chemo, get it in my pre-med drip on chemo day, and take 2 doses the day after in addition to the Neulasta. As others have said, it helps with allergic reaction. I am a week behind Kathy and ladybug - I have #2 next Tues.
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Done with tx5 - went OK!!
About the steroids, I also get dexamethasone (decadron) and I take it twice a day,the day before, the day of, and the day after treatment. I got a brochure about it, which you can see at the www.taxotere.com site (http://www.taxotere.com/docs/pdf/breast.pdf). It does make me pink in the face, especially when I get up in the morning.
CHJ
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Steve: Dito w/chj.
Chj: congrats! Now enjoy the rest of the day. Proud of you.
Believer: Yes, we did get name brand makeup but some of the stuff in my bag was old, and had leaked. Had to throw part of it away. Oh well, I got to meet you and that was wonderful.
Cynthia
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Forgot to say - I'm going to Look Good Feel Better on Monday. It's probably a little late for me, but it was the first one that has been scheduled locally. I'll let you know how it goes.
CHJ
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Look Good Feel Better was a complete hands-on experience in my area. We each were given our make-up kits and had mirrors. The cosmetologist walked us through key points about the various steps of applying the make-up and we each got to try it out as much as you wanted. I've never been big for make-up so it was very helpful for me. Plus it certainly was nice make-up - all new and mostly big name cosmetics. No sales pitch at all. The gal didn't even give us business cards for her salon. Spent more time on the wigs than needed since all of us had already gotten at least one each. Appreciated the lessons on various ways to tie scarves. I would have been so disappointed if it had been all lecture.
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I did dex 12 and 6 hours before chemo 1 and 2 and twice a day on day 2 and 3 after....for 3 and the upcoming for treatment 4 (Apr 30th) I only do it after chemo...
so one week after chemo 3, I feel back to normal again...except the mouth funkiness and of course the hair....but today on my way to blood work, my hat was too big and I almost lost it - had the top down...so I just took it off and drove on.....it was great fun!
I ran 3 miles today with our athletic trainer....and didn't stop once...that hasn't happened for awhile...of course I was none too fast!
Blood work results...rbc and hematocrit down....no more procrit shot though...did you guys here that they won't give it to breast cancer pts anymore...new study says it increases recurrence...guess I better hit the red meat...
Have a great evening
Sharon
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1 down and 32 to go!! Just finished my first full radiation treatment. Man, did it go really quickly. I think I was on the table for about 6 minutes. I feel ok. Lathered up on aloe vera when I got home (forgot to take it with me but I only live 20 minutes away from the clinic). So all in all it wasn't a bad experience. Still don't like the head technician - he's a meanie, but the female tech was very nice.
had a big presentation today and I was so nervous because I did all the calculations during chemo days. So I was totally wondering if I had miscalcuated anything because of chemo brain - but nope I did everything right. Kicked ass and my client is very happy. The opposition...not so happy.
Catch up with you ladies later. I'm exhausted. I still have serious chemo fatigue.
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Congrats and great work, bd. Keep us up to date on the rads, it seems it's the next step for most of the ladies here.
Thanks for the feedback on the decadron everyone. I am definitely going to look into it. (Thanks for the link, CHJ). Kathy is definitely not taking anything the day before or the day after other than her anti-nauseas (and an occasional happy pill). I don't know if they are putting anything into her drip or not. It seems like this doctor waits to see if you need things before he gives them to you, although she takes the Neulasta regardless of her blood count. I have to check it out.
chj - Congrats on #5! just one more to go...
SharonS - I realize you're a professional athlete and all, but great work on running three miles! I'm in pretty decent shape, but with the "sympathy weight" I've been gaining it would be a job to walk three miles right now! It's almost like Kathy's pregnant again and we're both eating for two!
Later, ladies!
Steve
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