Anyone on just Taxotere and Cytoxan?
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Well it is 1 AM and I can't sleep - likely the Dexamethasone but could be being aided by two caffeinated diet cokes at dinner where no decaff versions were available. I had been a big caffeinated coffee drinking prior to my Dx. Interestingly, that was the first thing I lost the taste for.
Question about nails - for those who have not done the tea tree oil routine, what are you feeling or seeing? I'm getting manicures the day before tx, using clear poilsh so I can watch what's happening and them also using nailtiques nail strengthener. So far, fingernails are looking pretty good although there seem to be some vertical ridges on one thumbnail. Toe nails are looking relatively good too although my big toes seem to be trying to "talk to me" - not really pain yet I notice them when I didn't use to.
Otter and others new into Treatment - while I have only made it through 2 tx so far (#3 is coming up this afternoon - yeah, I am halfway donewith chemo), I find the first week after tx to be the worst and the third week to be the best in terms of how I am feeling. I line up as much support as possible from friends and family for the first week - having dinner delivered on four of the nights really helps. Turns out people really want to do something to help me feel better and since they can't actually help on the medical front they really want to do this.
Hoping everyone else is sleeping!
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Otter - Hang in there. I also get mixed emotions about the ladies who are excited to be finished. I knew this would happen, when most people seem to get 4 treatments and I am getting 6. I have 2 more to go, and many of the people who started on this thread when I did (and the January 2008 one) have finished their chemo and moved on to the radiation threads. It is exciting to finish, I know, and I will also be jumping up and down when I'm finally done (May 7, who's counting???) but in the meantime I'm depressed because it's still another month away and I feel left behind. So I'll still be here with you for a while. It's a tough road. And this is my second time - not fair!! That's one of the reasons I "get" to do 6 treatments...
And Otter, if you're at day 6, things should start getting better for you until the next tx. Everyone is different, of course (how many times have you heard that one on this board??!!) but with me, the taste buds started getting better after 9-10 days; my indigestion lasts about that long as well (too long, I don't like that one) and the aches subside after a bit. By the time you get the hang of it, it will be over...
In the meantime... C-Babe, yee-haw for you!!! Celebrate and be happy!!! (No matter what I just said in the previous paragraph
)BD - a whole week without a shower? Yikes. I don't like baths unless I have lots of time. Amazing how the medical people think they can run your life. I hope they get their act together and things start going more smoothly for you.
Kathy's husband - you are a gem for being there for your wife. It seems that the whole bc experience is harder on the spouses and family, because there isn't a lot you can do except be there. You can't ease the side effects, you just have to be supportive. My dh hates to see me suffer on my "down" weekend. I tell him I just need to get through it, but he SO wants to fix it for me, and he can't. So it's tough. But we've gotten stronger as a couple by going through this together. So will you, by the sound of it.
That's all, I need to get to work. I really appreciate all of you for sharing and being there so we can all vent or cry or celebrate together!
Have a se-free day, everyone!
CHJ
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Hi Ladies and Kathy's husband...Off to Chemo 3 in a few minutes. Last night dh shaved his head...it was buzzed...I couldn't believe it when he came up stairs...I thought he was down there woodworking....he's the best. My friends have the dinners all lined up for this week...I hope everyone has a se free day
Sharon
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C-Babe..can I switch with you ? A month from now I'll be done.
What's wrong with this picture? I'm happy for you really, and you'll have to keep us posted how the Rads are going for you.
My rads are probably goig to run into my July vacation and I just don't know what in the heck I'm going to do. It's planned for so long.
XOX and minor s/e's I wishing you.
Evie
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Otter...again I say...welcome to the "shity" club. It takes on a whole different perspective when you join it doesn't it?
Evie
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40something: I still have some minor steps to finishing my reconstruction, but the exchange is done at least-that's the biggie! I'm happy to help you/answer questions for you along your way. BTW, my PS did not put my port in, but she said she'll be happy to take it out and "clean up the area". I am thrilled as she does great work. My port is in until I'm done with herceptin next year, but it's nice to know she'll be the one tidying up the scar! Ask your PS about removal-many will take ports out when they do the exchange surgery (mine usually does it this way).
Goldilocks: I know you just did #3... are you doing 4 or 6 tx? It must be nice to know the end is in sight! What do you have left to do for reconstruction?
Believer: Good luck and congrats tomorrow on your LAST chemo! Doesn't that sound great-L-A-S-T!!! Herceptin day went well-so far feel fine and they tell me that's how it should go from here on out.
Debap: Your rash does not sound like shingles. I agree with Winnie, shingles is linear along a nerve path and not just a single lesion. If your son was immunized, he should be covered at least partially anyway.
Otter: I though the same as you-how bad can 4 rounds be? I can do anything for 12 weeks! It was an eye opener to say the least. But know this-it will end! Do whatever you have to to make it through-sleep aids, pain meds, etc.-it's not a time to play martyr. As I've said before, no one will give you a medal for being stoic and doing without something. Be kind to yourself and do what needs to be done for you to make it through. About the SEs: everyone is different (where've ya heard that before??) BUT for me-some came and went each cycle (bone aches, sense of taste, appetite loss), others gradually got worse each cycle and then remained (eye twitches, fatigue, swelling).
Bdatlanta: OK, I'd be a blubbering mess at my therapist after the day you had. I think you have every right to have input on your schedule, and should be included from here on out. As for the no-shower thing-WTF is right! They should be able to do the mini-mole permanent tats and not marker all over your body. That's crazy! I am so sorry you had a sh*##y day. Hang in there, but do stand up for yourself woman!
CHJ: I know May seems so far away... but it will be here before you know it. It sucks that you have to do 6 rounds instead of 4, but it's what your situation calls for to do the best job for you. Hang in there. Even though I done with the chemo portion (still have 13 rounds of herceptin to do and finish reconstruction), I don't feel "done" at all until January 2009; I'm here if you need to vent!
Kathy's husband: You have already gotten some great advice about TC here. I think your wife is very lucky to have such a supportive spouse. One thing I'll tell you from a wife's perspective is this: make sure you have a stress outlet for you. My husband often would bowl or play cards just so he could get out and bond with the boys and have a BC-free night ... and I encouraged it. Those nights my mom would be here instead, so he felt like he really could go and not worry about me being alone with the kids (ours are 2 and 5). It is SO important to care for the caregiver; don't forget that! You will be a much happier person, and also better able to support her. Best of luck to you both!
Gotta run, I'll write more later.
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Morning all,
Bdatlanta: You are so right about the days, and the pain and pretty much all of it. When I had radiation, I was required to go M-F for approx. 9 weeks. Burn? That was an understatement. I did however have more energy than with the chemo. I did apply Aquafor after each rad treatment to prevent, extreme burning. The radiologist also applied a gauze with that clear bandage that seals all the way around. That gave me the freedom to shower. This bandage seals and stays on for most of the week. Check and see if that can be used for you.
I have scheduled for tomorrow off. I am feeling really achy and it is painful to walk. This seems to be right on schedule. If all goes well, then I should be feeling better by Friday. Wishful thinking.
Prilosec has been wonderful for the heartburn. Started taking it daily since #1 and have not had a problem since. I do take it every evening, and plan to do so until the final round.
The eye twitching is happening....ohhhhhhhhhhh
Happy hump day.
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otter - I know how you feel - that's exactly as I felt starting out & reading about some people finishing ( I say 2 days before my last tx). We won't lie to you - this whole thing sucks, but you will survive it. Each one of us is different - bdatlanta says not to drink oj, yet that was one of the few things I could taste, so I drank lots of it.
bdatlanta - you are too funny, but now I'm even more scared about radiation than ever! Are these real tattoos that you can't wash? The only positive thing is at least you won't have to wash your hair in the sink ...
The more I read about radiation, the more scared I get. They say it's worse for people who sunburn easily too (that's me). Sounds like it will make chemo look like nothing at all. Is there anyone who doesn't get depressed over this?0 -
goldilocks - I am now way more confused about this radiation deal. My radiologist made it out to be not such a big deal. She said that I wouldn't feel fatigued until like the 4th week - that there was a build up of fatigue. She was also very casual about the burning issues. I burn easily in the sun and she acted like it wouldn't be such a big deal. That's the last thing I want is to do is to feel my skin burnt. I also asked her about wearing underwire bras and she said it wasn't a big deal. I'm going to take my own precautions.
The eye twitching - OMG don't even mention it. It drives me absolutely crazy. I had to stop therapy yesterday and just scream because of the eye twitching. All the docs swear that it will go away when all the chemo leaves the body - whatevah!
guitargrl - if anyone doesn't get depressed over this shit then they are smoking the seriously good stuff that doesn't grow here in the States. The tattoos aren't permanent. It wasn't like Miami Ink or anything. I think they will fade out over time. Its just one more reminder of the crap that you didn't sign up for.
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bdadlanta- my girlfriend is having her radiation having not gone through chemo SHE SAYS FATIGUE HAS NOT SET IN FOR HER YET; BUT-- she says her heart goes out to all of you coming from chemo, totally fatigued and now having to do the rads!!! what do they mean YOU WILL NOT BE FATIGUED UNTIL WEEK 4 HELLO YOU ALREADY ARE FATIGUED FROM CHEMO!!!!!!!!!!!!!!!
CONGRATS- C babe! headed toward the finish line!! I wish you 3 weeks of minimal SE's
GOOD LUCK to Jisman & SharonS on #3 this week
Aurora tomorrow #4 YEAH 3weeks of minimal SE's to you too!
Jisman- wonder what se will be like with the abraxane insted of taxotere, keep us posted
SharonS- I hope they give you those steroids, I think it is important! your husband sounds wonderful
I have had the red bumps on my head, not many and they do not itch just look yucky, I have not mentioned because, I guess I do not care since I cover my head wiht the scarf or wig anyway
My nails are actually longer then they have ever been( not doing the Tee Tree Oil, because of hormones in it), and I'm week two of my final tx#4! I did have the sore nail beds every tx and worried I was going to loose them but no lifting as of yet and I am enjoying & using nail polish on them since I normally have such short nails
KathyL- I did not realize with the herceptin you still had to use the port---bummer but being HER2+ thank goodness we have herceptin! I'm pretty sure tamoxifin is oral for 5 years
-- I have a council with a ps 1st week of May to discuss diep(new uses fat and veins, but no muscle) vs expanders and I will want to ask they take out my port as well, thanks for sharing. I am so impressed with you guys who did chemo and reconstruction together, I was too chicken to combine the two and I just could not make the decision so quickly.
CHJ/ Goldilocks you two both have been through this before I pray for you both DAILY!!
Everyone just starting out and joining this thread-- hugs Patty
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Question - I am in week 3 since first chemo - 2nd one is on 4/14. I actually did pretty well the first 2 weeks but the last 3 days I am sooo tired I can hardly function. I know fatigue is part of this whole thing, but I guess I thought it would start getting better now instead of worse - lots of folks say week 3 is the best. I am also having night sweats so bad some nights that I don't get a lot of sleep. My dh wants me to call onco but I think I am just going to get the answer "normal side effect". Any suggestions?
Deb
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Hey Ladies! Hope everyone is feeling well today!
Kathy's head is tingly/sore/wierd feeling today, I guess the inevitable is starting to happen. She has a hairdresser friend who is going to give her a pixie cut (she's a little lady, so it will look cute on her) then take the rest off when necessary. A friend came over this morning and took her for a nice long walk on a beautiful Hudson Valley day, so she's feeling real good today.
CHJ and KathyL- I know what you mean, I'm definitely the "fixer" in my house, physically and emotionally, and I'm a super handyman, but I CAN'T FIX THIS and it's bugging the hell out of me!!! So I just have to relax, and let her know that I'm available to help anyway I can. I try to get out with friends or my brother-in-law once in a while, but it's usually more relaxing for me to go out to the garage for some woodworking or car stuff. Or just listening to my Yankee game on the radio.
Jisman - It was a little awkward at first, but everyone in our neighborhood is so sincere in wanting to help, we've finally gotten to the point where we accept it and are so grateful. My wife Kathy is so well loved - and she should be, she's the sweetest person I've ever known - that everyone wants to do everything possible to make sure she gets better. It's been a real gift for us.
C-babe -Congratulations! It must be a huge relief to be on the downhill side of this thing! Stay strong and let us know how things look there on the other side!
Sharon - My oldest son's best friends have been threatening to shave their heads in honor of Kathy! She hasn't lost hers yet, though, and hopefully they'll smarten up before it comes to that.
A question for all - How many of you are doing six treatments instead of four? Because Kathy is node positive, onco said that the TC is right for her but she needs six instead of the usual four. Does that sound familiar to anyone?
All our best,
Steve
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Wow...I can't tell you how I was looking forward to a nice(deep) bubble bath or a shower that I can accualy get both sides of my body wet! I have a picc line that I have to wrap up in "Press and Seal", so I don't get it wet. It's a drag.
Now...I gotta wait some more because of "washing away of Tatoos?"
You must be kidding? This whole thing is going to last an eternety and I'm getting a little adgitated I must say.
Tx's are so different from one to the other. If I would have had #2
as my first one. I may not of retured to get more.(yes I would have, the dh would have pulled me back by my WIG) I think they are a surprise for everyone, even if we think we have the next one all figured out. I've read now that a few of you said #3 was good, but if only that would be written in stone. Again it all depends on what the almighty has in store for us that first week after tx. (be good now)
Glad to hear all that are finished are getting to feel better now that the drug has been running out of your body. Drink, drink, right?
My nails were hurting till day13 and today it's totally gone. See, another surprise.
Talk later, Evie
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BDatlanta...oh you made me laugh out loud !!! Thank you! I needed that. I had a rough night last night and was feeling the blues on day 7. Thinking this really sucks! Then you made me laugh with your post. Thanks,
C-Babe YEAH !!! Dex or no Dex YEAH you are done !!!! I just started my first last week, I cannot wait to be able to write last treatment.
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bdatlanta: you really need to join one of the radiation threads. Info there is definitely now underwires, preferably no bra, but if you need one it should be all cotton.
If I have to go braless, it'll be worse for the other people watching than it will be for me! Assuming I keep working half-time.0 -
40something: You are so sweet. Thanks for the encouragement. Sometimes you guys are the only saving grace I have. Dh is great, but having sisters that fully understand helps. I suppose that when I was told that I was going through this again, that drastic measures were pretty much the option. Yea, ok could have opted to just deal with one breast, but might as well "get'er done"! I think that waiting to do reconstruction could have been an option, but too late now. My surgery was in September and didn't start the chemo until February due to healing time and Ony lab report/delay/mix-up. Recovery time was/is still occuring. I think the most difficult thing was that because of the radiation I was not able to do the "tummy tuck" reconstruction. Now, because of the radiation I still will not be "balanced". Not to scare anyone, but once that skin is radiated(burned) there is scaring that occurs deep underneath. I didn't think that really was a factor, until this trip around. I was a "D", and didn't want to be flat. Figured that would play to much on my mind. I sometimes feel like a freak...no nipples, just scares....do have the look of boobs. HOWEVER, I know that this will all be fixed and I will at least have the look of "reality". Right now, we are looking at July.
gramadeb: It sounds like your blood count may be low. You may want to consider calling the onc.
I sometimes keep checking this site, gives me security. Totally understand the depression.
bdatlanta: You are a blast! WTF, are they scared to tell their patients that this is Not a picnic? I personally think that alot of the drs/nurses only get part of the picture due to being in different fields. The chemo group and the radiation group. A joint education for general side effects with both teams could better prepare and inform the patient.
Thanks for keeping me smiling.
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Steve, did Kathy have the oncotypedx test? some of the ladies with high scores are doing 6 tx of TC and I see some of the ladies who are tripple neg also doing 6 tx-- since I am hormone + can take tamoxifin my onc thought 4 was good and she stated there are no studies out yet that support 6 is more beneficial than 4 at this point-- I read up on the studies the reports came from the San Antonio Breast Cancer Symposium Dec. 2007 where they reported the bennifits of TC over TAC. You may want to look these up.
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Just woke up from a nap and it felt really good. With all this radiation stuff swirling in my head I forgot that I'm still under the magical fatigue of chemo.
So I sent a "help" call to my friends about needing some help with chores and food. The response has been overwhelming. One of my friends who live in DC is sending over a landscape crew to handle the amazon forest which is my backyard, another is getting a house cleaning crew to mop my floors, and they are all going to bring meals over.
That also might me why I slept so long today...I'm relived to have some of this off my shoulder. But, then another woman forwarded my email to her friends and lord knows who might show up at my house.
I'm off to "sponge bath" and then to dinner with friends. I'm going to have to check on that "press and seal" bandage stuff.
Gramadeb - I had night sweats really bad. I went from having no sweats, to night sweats, to day sweats. It will get better with time. Right now your body just can't control its own body temperature. My advice is to keep extra sleep shirts nearby so you can change your clothes without fully waking up.
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Hi Patty -
In the end the doctor didn't recommend the oncotype test for Kathy because she was already past the point where it would help. The stuff I read says that if you are er+ and node negative you take the oncotype test, and if your number is low enough you might be able to skip chemo, just go to radiation. We were so happy when Kathy turned out to be er+, then devastated when she went in for surgery and they found out she had 4/20 nodes. Her original diagnosis was two small spots around one centimeter (back in January). It turned out to be one tumor 3.8 cm! So it's 6x TC, then radiation, then tamoxifen (assuming chemo-induced menopause isn't permanent). She was Stage IIb/IIIa (we still don't know for sure, different books say different things). All of this was a tremendous shock, since she has no risk factors, no family history, and regular mammograms and checkups. But it's too late to worry about that now. We have to deal with what we got. And keep praying that this all works.
Thanks for the help.
Steve
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C-Babe, congratulations on your "graduation"!!! I'm right behind ya-- yey!!!
Otter, Tigwin -- first one seems to be the hardest for me, mostly because I didn't know exactly how my body will react to the meds. Make sure you let your doc/nurse know every side effect you have. In my case, the worse se's happened at night or over the weekend, so I had to page the doc almost every other day. He said not to be shy, so I called him or the nurse all the time :-> So, my second and third were so much better! Except for sensitive skin and fingertips, everything was good. Hopefully your next rounds will be easier!
Atlanta, you are hilarious!!! Your great sense of humor is helping you (and us) deal with this :-> Keep posting so we know how you're doing ok? Btw, enjoy your dinner tonight!
40some, KathyL, SharonS, Evie, CHJ, gramadeb, guitargirl, Jisman, Goldie, Steve's wife :-> --- I pray you're all doing well!!! I hope I didn't miss anyone
.Question for all -- anyone doing the 5-yr hormone after chemo? I think that's the next step for me. My period has not been back since end of Feb, so I think I've menopaused. Aarghh!
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Steve,
My onco told me to plan on 6 treatments of T/C when I started out, b/c my oncotype score was high (33) and he felt that we should plan on being aggressive, even though I was node-neg. Midway through, he said his "gut feel" told him that four tx's would be sufficient -- this occurred right after I insisted on a re-test of my HER2neu status using the FISH methodology rather than just IHC showed me to be definitely HER2neu negative. So, I'm happy, relieved, and fairly comfortable since this was all "insurance" anyway with a small, early tumor, clean margins, and no nodes, to be followed by radiation and hormones.
Best of luck to you and Kathy... she is lucky to have you!
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Steve- yes, it's been a while since the beginning of all this since I thought of it all again, so many variables and so individualistic for each diagnosis, yes yes node + is not for onco testing, especially with the size involvement like your wife, 6 seems to be a safe guard to me, my girlfriend who is tripple neg and gene + did the 12 rounds 6AC 6Taxol--but I am so convinced the TC is much better and especially than the (A )which we all know is not good for the heart.
Hey Aurora- I have went into the chemo induced menopause too, does that mean we take tamoxifin for 5 years or the one for post menopausal women Amidix suppose to be better (sp?)than tamoxifin???
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AURORA...you sweet thing. Boy, what a wonderful surprise in my mail box today. Thank you so much!!!!!! I already have all my keys transfered and it looks mighty fine in my new black Accord. :>
Didn't need to do that, really. You derserved what you got and if DH needs a gift for you, the "mother" is still for sale. HA!
I wish you all of God's gentleness and that his healing hand keeps you healthy for a long life ahead.
This wish goes out to ALL of us sister!!!
BDatlanta..The "press and seal" works but you still can't dunk under water like we all want to do. On the other hand if you ever wanted to know what a "left over " was like, wrap yourself up.Ha.
Love and hugs my friends, Evie
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Believer - my first time through I did 5 years of tamoxifin. During chemo back then my periods stopped, and I didn't have one for 6 months but then they came back, even with the tamoxifin. I tolerated the tamoxifin pretty well. I went into menopause about 4 years after I was done with the tamoxifin, so I'll probably get femara or one of those drugs this time. BC - the great adventure!
CHJ
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Hey everyone,
I thought I'd let you know, I found a great new hat website. It's www.hatsscarvesandmore.com. I ordered a "flapper hat" and it's nice & lightweight, hemp and cotton. It was just what I was looking for for the summer. The hat came in 2 days, and was nicely wrapped with a hand-written note! I am always on the prowl for a nice hat, so I thought I'd share...
CHJ
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Chj
..thank you for sharing that. Sounds cool. You mentioned your 1st time around. do you mind elaberating on that?
Thank you, Evie
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Evie - I was dx'd in 1994 with IDC on my right side - 2 cm, 1/21 nodes. Had a mast with TRAM reconstruction and 4 rounds of AC, followed by 5 years of tamoxifin. Thought I paid my BC dues, but then I got it on my left side this past October, and voila, here we go again!! It's a new cancer, not a recurrence of the old one. One of the reasons I'm getting TC instead of TAC is that they only will give you Adriamycin once in your life because of the effects on the heart. My onco also told me it's one of the reasons I'm getting 6 cycles instead of 4 (because of my history).
The first time I was scared. This time I'm more ticked off about it. Such is life.
CHJ
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Gee kido, sorry to hear that. That is exactly what many of us fear if not all. It's just so strange to me that you would get it 13 years later and then a different kind to boot. I still wonder why after one time and all these drugs does it rear it's ugly head back at us? I have a couple friends and family members that have never had a Mamo and they get nothing! Pisses me off somewhat. They need to be smarter than that but they get away with it. we've done everything and we get it/ go figure!
Hugs, Evie
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Finally catching up with all of you after tx #3 a week ago. This time I was sleepy after the treatment, a little bit nauseated day 2 & 3, then tired on days 4 & 5 after stopping the steroid and anti-nausea. On day 5 I managed to go water walking so took an afternoon nap. I was burping a lot and am using tea tree oil to prevent the painful toe nails I had last time.
Monday I took the Look Good, Feel Better class with one other person. I even removed my wig (first time in "public") in order to model different scarf arrangements. I learned about using old shoulder pads to add height under scarves. I finally threw away the concealer I've had for more than 25 years and am even starting to try powder and blush. It was fun, and now I have to remember to do the web evaluation. The volunteers are so great!
I got Crazy Sexy Cancer tips as a book from the library and may now order it.
Steve - It's good of you to be keeping up with this post for your wife. Re: the 6 vs. 4 txs, I had 6mm of node involvement in 1/6 nodes (and it had 2 negative nodes that branched off it) and got an oncotype dx core of 12. My onc said that if I hadn't had the +node, I could have avoided chemo, but she felt the dx score would have been higher if it accounted for the +node. So that's why I'm having 4 txs. Patricia has a good point about the number and size of the nodes that can influence the number of txs. At some point it's good to go with the experts after they've answered all your questions.
bd - I can't believe that the rad tech could be so cavalier! Stick up for what you need! For the eye twitching, have you tried tonic water? Someone told me that it helps with leg and foot cramps.
C-Babe - Congrats on the last tx! Hope the se's are minor!
? Does Prilosec help with burping? I tried the Pepcid AC over the weekend, but I'm not sure it made any difference. I still burp some now, though I'm not feeling gassy, so....
CHJ - thanks for the hat site. I mainly wear scarves around the house but would like to try a lightweight newsboy-type cap.
Hope we all sleep well tonight!
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40something: you don't HAVE to have a port for herceptin, but when I heard herceptin was for a year I decided to get one to avoid IV sticks every 3 weeks for a year (I so hate needles).
Gramadeb: fatigue is part of it all. When your cell counts drop, you can get pretty pooped also. I'd make sure you don't have a fever. The sweats are also normal, too I think, but again could be fever-related. If you don't have a temp., (for BC patients it's a fever if >100.5) and are still worried, it's never wrong to call your onc's office and ask anyway-that's what they're there for.
Artsee: not all the tattoos for rads are temporary. My center uses pinpoint permanent tats (they look like tiny moles).
Guitargrl and bdatlanta: how about wearing cotton camisoles with the built-in shelf bra? I wore them a lot after surgery and I still like to wear them. So comfortable, and give some support.
BD: you've got some great friends! I am so glad to hear you're getting a break on the chores.
Have a good night all!
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