Anyone on just Taxotere and Cytoxan?
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Wow, otter, you DO know how I am feeling!! Aging parents are tough to deal with. My folks live in a place way up in the mountains that is hard to get to, and we've been trying to get them to move for a while. They finally put their house up for sale, but of course, the market is tough right now. We will probably have to find them a better situation sooner rather than later.
And yes, I know I need to concentrate on myself, but it's hard. Fortunately all of us siblings do communicate and the brothers know this one won't be mine to handle. It's just that I'm usually the one who does handle things. As I told a coworker, if not for my health situation, I would have already wrapped things up at work, packed my bags, gassed up my car ($$$) and I'd be on the road. {sigh} I'm just not in charge this time, and I need to let it go!!
Thanks for the support!
CHJ
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I'm with you all on the aging parent thing. My mom (who basically lives with us, although she has her own kitchenette and bathroom) fell and broke her hip three days before my surgery! The upside is that she has $$ for care and we have been able to find good folks to help her. The downside is that she gets depressed and I really don't have the energy during chemo weeks to deal. Oh, and I mentioned the 3 teenagers too, right? And my mom thinks they should care for her. Which they are willing to do, but not on a beck and call basis (one does her laundry, one helps her at bedtime, one stays with her on Sundays). So if I do feel well enough to go over and visit with her for a while, I get to hear how my kids should do more. Ack.
Sorry, wrong thread, I guess I should go over to the moan and groan thread. Didn't realize how cranky I was getting about this till I wrote it down!
But on the T/C front -- day 9 and I am feeling pretty good. I hope everyone else who had treatment last week is coming out of the fog and that it goes well for all who are on this week. I have had some tingling in toes and finger tips, but it's off and on. The onco put me on B6 (100mg 3xday) this round and I notice it less. But then all my side effects (except the heavy tired legs) have been less noticible this time.
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CHJ-
Just sent up a prayer for your Mom's surgery and recovery, strength for your move and your final treatment, and for your brothers and the church folk who will be stepping into help. I trust knowing they are there will help ease some of your burden.
RK
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Sorry I meant I will ask the onc again if I will lose my hair. Sorry about that. And thanks again.
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clcady, we knew what you meant. Now, tell us what your onco says about the hair when you find out.
otter
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Tbirdkim - chemo is very much a personal and tough decision, but I decided to go with it as well as rad. I want to do everything I can to make sure this demon doesn't come back. At 55, I still have a lot to live for - especially seeing my kids married and grandkids, which I"m not sure will every happen (they're 30 and 26). I also had micrometastic node involvement, and the onc. left both decisions up to me. By doing both, he said it would decrease my chance of reoccurance from 15% to 3-5%. It hasn't been anywhere near as bad as I was afraid it would be. It does help to have support of those around you, and I have that. I'm not sure I could have made it without my husband, kids and friends.
chj127 - I'm also right there with you parents- mine are 84 and 91, and my dad has some dementia, and although the dr. won't dx him with Alzheimers, I know that's what it is or will be soon. They have finally stopped driving and my sister and I know we have to force a decision about their future on them. My sister is great with helping out - she usually took winter duty and I took summer duty because of our jobs. Unfortunatly, her husband has an inoperable brain tumor and takes up all of her time. She doesn't want to leave him alone for a very long period of time, and he can be a hinderance when trying to take care of them. My parents were both very ill with the flu, and recurrance of the flu just when I was dx. Fortunately, we were able to get them well before my surgery and treatment. I am sending a pray that your mom does well.
debap - for the most part the information that the LT gave me is the same here, but I'll include it to save anyone from trying to find it
*keep arm clean, use gentle soap, avoid scrubbing arm, and keep moisturized
*wear gloves for dishes, cleaning, gardening
*use caution with kitchen tools, scissors, pins
*use electric shaver
*be careful with manicures, don't cut cuticles, avoid acrylic nails
*use sunscreen/insect repellent
*avoid hot baths/showers
*keep pet claws trimmed
*no blood pressure, draws, or injections
*avoid tight clothing
*wear proper fitting bras (straps don't dig into shoulders)
*wear jewelry on the opposite arm (can pinch skin or trap bacteria
*use opposite arm to carry should purses an briefcasses
*watch for infection
*exercise - lumph fluid moves with movements (I asked about weights, since I used them. I was told to back up, start low, and increase in increments of 2 lbs anytime I have not had any problems
*change limb positions oftem
*return to activity gradually, use arm as you normally would, gradually increase what you lift, be cautious with repetitive activity
*maintain ideal body weight
I had my 1 week post tx 1 appointment with my onoc. today. He likes to do this to check blood counts since he doesn't automatically use neulasta (probably for insurance reasons). My white count was low - very low .08 (yes, the decimal is in the right place), so I'm now a member of the neulasta club for each treatment as well as on an anitbotic for a week. And to think, I was doing fine, since I haven't really felt bad.
Boy, this was wordy. I hope everyone has a good day. Good luck to all getting treatments this week.
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Hi All, Sending prayers out for all of our parents..amazing how many of us take care of our parents ...you are all very good women to respect your parents so much. My mom lives with me and it is hard sometimes but I would not change it for anything. Dad lives down the street and is over often. Nice to have them here during this time. Hang in there with all the parent stuff. Try to take care of your self and have someone help out with parents.
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Hi Ladies, hope everyone is doing well today. Kathy's a little cranky with the kids today, and didn't sleep too well last night (the sweats) but is otherwise doing well.
clcady - My wife Kathy has very fine, pin-straight hair. When it started to go on day 14 after tx#1, she had two friends come over and cut it very short, maybe 1/2 inch left all around. It's long enough that she feels comfortable going out in public with it, and to church, and sometimes will put a little goop on it for a spiky do! She is now at tx#2 +15days, and doesn't seem to have lost any more. Yet. In fact, it almost looks like it's trying to grow back. We don't know if that will continue, but she feels like everyday that it doesn't come out in clumps is one day closer to it growing back for good. I know everyone's different, but that's our story for what it's worth.
Hi Jisman (Hi Neighbor!) - Yup, we're over on the west side of the county. Kathy got her work done at Putnam Hospital, we were very impressed with the doctors there, nothing but good things to say about them. The nurses could have been a little more attentive, but all in all they too good care of Kathy. Good luck today!
Regarding parents - Kathy's Mom is 80, a widow, and lives alone in a very nice building in the Bronx. But she needs to see Kathy every once in a while to make sure she is still feeling good. She is very relieved when she sees her, then gets very nervous when she doesn't see her for a few days. But thank God her health is good, so I shuttle back and forth as often as I can to bring her up for a visit. She's a big help with my youngest, even though Kathy won't actually let her do any housework.
tbirdkim - Kathy's situation was also different than yours, she had node involvement so it was never a question of whether she would have chemo or not. For her it's 6 tx's with TC, then radiation, then tamoxifen. Assuming her periods continue, which is up in the air right now...She has continued her normal cycle these first two months of treatment, so who knows. She's a little edgy today, maybe it's coming again...
I'm out...
Steve
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Had to comment on parent topic. My mother is 92 years old. I was so afraid to tell her about my bc - my dad died 40 years ago and all of my sisters have moved to other states. One sister moved back to Minnesota for awhile then developed a peritoneal mesothelioma and died 7 years ago. So I have been pretty much my mothers caretaker for many years and she relys on me for everything. She currently lives in a nursing home.
Once my hair fell out I got the courage to tell her. She took it well, far more understanding than I gave her credit for. Her only questions - "did they get it all" and "you won't have to go through chemo again". Of course, we all know these questions are hard to answer once you are diagnosed. But for her sake, I told her I would be fine - she gave me a big hug, kiss and told me she loved me.
I am so thankful now that I did share my diagnosis with her. I will always remember the big hug and kiss - her way of reassuring me.
Round 3 is next Monday. More of my hair stubbles are falling out and my new gray fuzzies that appeared over the last week and turning into bristly stubbles - feel more like whiskers than hair. So much for hoping they would continue to grow!Take care all
Deb
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Deb - I know how you feel. My mother's last sibling (there were 7) passed of bc 2 years ago. My lump was found in December, and I waited until March to tell her. It was very hard, since despite our differences, we are close. She's been good, very positive and supportive. We try to help my dad understand, and sometimes it's much harder. He notices little things like when I got my hair cut super short. We had talked about what I had done and why. About 2 hours later, he looked at me, said you've gotten your hair cut. I like it. I try to get to their home every couple of days, just to prove I"m ok. I went there the day after my surgery, on her birthday, for a very short time. Fortunately, between my sister and me, we have 4 grown kids, who have been wonderful with stepping up to the plate and doing things to help - cut their grass, take them to the store, etc. They keep saying Nan and Pap, we just wanted to see you.
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SharonS,artsee and chj127
Thank You for a swift response, it's overwhelming. I've been out walking (and thinking) this afternoon. Asyou know its alot to think about , right now I think I'll just open a nice bottle of Cab.
Thanks again
Tbirdkim
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Apologies to Steve, kathys hubby and beachmom, I just scrolled back and found you responses as I said this online/chat stuff is a new animal for me
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Hi everyone. Hope all are feeling OK. I've read the posts. Not too much to add today.
Debap: I am still premenstrual (lucky me! And probably a good 15 years from menopause). Anyway, chemo really messed up my cycles. I started chemo in January, had a period then for about 2-3 weeks! Skipped the entire month of February. Had a period mid-March (during chemo), and then didn't get another until 7 weeks after that one. Weird! So, "chemopause" really did not happen for me. Guess I should be glad my BC is hormone recepetor negative-- it would take something major to turn my hormones off!
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Hi All,
The infusion center has called to remind me of my 9 am appt. My onc's nurse called to find out if I had any last minute questions or concerns but I couldn't think of any that I hadn't seen the answers to here or in my teaching book.
An evening dose of Decadron, a touch of Ativan for sleep then we leave the house at 8 am as we live outside the city limits. I look forward to reporting minimal SE and if there are more than so be it. As I have learned from you, my new teachers...this is doable!
Later!
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Good luck, Robin! We're all right there with you, holding your hand
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Robin, you are probably more prepared than any of us were!! You will likely find that getting chemo is not a big deal. I wish you no adverse reaction, and the fewest side effects ever!!
CHJ
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chj127: I think it is really true that "when it rains it pours". I guess we all need to find healthy ways to deal with all of this stress.
beachmom13: Thanks for the info! I called a LT for an evaluation b/c I have some slight swelling in my wrist. Hopefully not lymphedema. I only had a few nodes removed (sentinel).
robink: Good luck tomorrow! I stock up on popsicles, fruit, ginger ale, and fudgsicles. Some people like root beer and angel food cake. I also eat baked potatoes, sweet potatoes, aparagus, beets, and broccoli. To me, the "bad taste" is the worst se. It might help to have food and drinks ready so you don't have to think about it.
Tbirdkim: This is such a hard decision. Were you tested to see if you have the breast cancer gene, or did you have the oncotype test done? They might help you decide. Also, a second opinion is always a good idea. I have had 3 treatments and have not had any tingling fingers.
Have a great night ladies!
Debbie
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Hi all - Last Chemo is complete....exam with onc was fine...he said I am doing great. Chemo day was good, but long...then I came into work b/c my runners wanted to call recruits...they are so excited for next year, and it makes me happy!
Hoping the rest of the week goes well for all of us...Next Wed we start planning for rads. tomorrow is the last nuelasta shot - YEA!
Sharon
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HOORAY FOR YOU, SHARON!!!
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Having the steroid high so thought I would check in - that also means this may be long as I seem to be more chatty!
Tbirdkim - I, like several others, chose chemo even though my onc said decision was up to me. I was ER+ and node negative, so did have the added benefit of the Oncotype Dx test result. While recurrence rate was estimated at less than 10% and chemo would likely provide a 3% incremental benefit, I had decided to go aggressive with treatment - I have lots of years ahead of me (hopefully) and don't want to look back and say, "I should have done chemo". Some may call me crazy but the key is that I am at peace with the decision - and that goes a long ways to helping me make it through. I have been blessed by fairly manageable side effects. No numbness in the fingers and toes; sorry to report that two in my local support group have had problems and said that B6 is helping. As already mentioned, everyone seems to react a bit differently so there really are no guarantees (other than you will lose most of your hair with TC).
Robink - you've got a great attitude for heading into chemo. Stay positive. That is a big factor in helping you through. And say yes to all offers for help - people really want to help and they can't do anything on the medical front so take them up on other offers - dinner deliveries, grocery shopping or other errand running, etc.
Clcady - If your onc tells you that you won't lose your hair, ask her/him where that information came from. It would make me very suspicious of the person's knowledge of the side effects. You may also want to look at a web site that seems pretty good on chemo drugs - http://www.chemocare.com/ . My onc told me he could only guarantee two things - almost complete hair loss and my nails would get funky. Turns out that my nails are doing fairly well after keeping them manicured (I go the day before chemo when my WBC are at their highest and use clear polish) and then overly Nailtique or similar for treating brittle or soft nails. Hair was mostly gone by my second Tx.
Chj - you are doing the right thing. Fortunately you do have brothers. It is there time to step up. May even set a new model for the future. Things may not be done they exact way you would do it, but your folks will be supported. Take care of yourself. Somewhat akin to what Covey used to call "Sharpening the Saw" - bottom line is if you don't take care of yourself, you won't be ABLE to take care of anyone or anything else.
Beachmom - sorry to hear about your WBC level. I assume they started you immediately on the neulasta. Be very careful to avoid anyone who is sick - even with the antibiotic!
Sharon - congrats on making it to the chemo treatment finish line!
I, too, am now done with chemo treatment. Hoping the side effects continue to be relatively manageable. My parents (77 and 76) came up from Florida to help - and to make sure I truly was doing ok. They have had their own health issues but ended up healthy enough to make this trip. Meeting the radiation onc on May 8th to plan all that.
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Jisman, congrats on being finished! You just had your last tx today, right? I admire you for being brave enough to say you're "done with chemo treatment" even before the SE's from #4 have set in. I hope they are mild this time. And, I'm happy to hear you haven't had the nail problems. That was one of the things I had not imagined until I read these BCO boards.
Robink, we will be waiting for you to report in tomorrow when you get home. Or, you could do what a few other brave women have done (bdatlanta was one), and give us a play-by-play from the infusion center. I haven't had the nerve to try that, although one of the other chemo patients told me last time that the wi-fi signal is pretty good in the infusion center. OTOH, they always put that darn i.v. cath in the back of my right hand, which limits how much I want to move those fingers. It's all I can do to tear open a bag of dark chocolate M-n-M's.
SharonS, congrats to you as well. It sounds like a mass migration over to the rads board. I stopped by there earlier today and saw lots of familiar names. Some were already well on their way to getting pink.
It's getting late, and there's no Decadron to keep me awake tonight. I've stopped itching from the hives, so I don't even have an excuse to take a Benadryl. I'll just snooze drug-free I guess.
See y'all tomorrow. Hugs to all.
otter
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Hello all. I'm not on a steroid high and I have no clue why suddenly I'm not sleepy or tired. Maybe spending the last 3 days sleeping 15-17 hours a day, I've finally gotten my fill of sleep.
Congratulations to all who have finished. I would certainly like to be in your shoes right now, but I've just started.
Yes, Jisman, I did start neulasta immediately and have already been severly reprimanded by my daughter for going into Target to have the script filled. I've been sticking pretty close to home (it's hard to sleep comfortably out in public), and guess I'll stay that way for a bit longer. I had hoped to return to school after the next treatment, but now I'm second guessing my decision. I don't want to get sick and prolong this "joy"any longer than necessary. I have plenty of sick leave, even with being off since the end of March, I have about 100 days left, but I miss the kids. Ok, I miss some of the kids and most of the adults.
Otter, your M&Ms sound terrific. Maybe I'll try it next time. I took chocolate pudding cups with me. And I totally forgot about my dh. I'm sitting there, happily eating away on some of my favorite things and he had nothing. Not that I wouldn't have shared, it's just that our comfort foods are not even close to the same. Maybe that's why he didn't close the box of KKs today?
Goodluck to all tomorrow, and again, congratulations to those who have finished.
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Congrats to Sharon and Jisman! Kathy, who's heard all about you lovely ladies, is very happy for you both, extremely jealous, and hopes we keep hearing from you as you move over to rads. I guess that's the next logical step for most of the ladies here, and we have as many questions about that as we've had about the chermo. Well done, ladies, and may you sail through the next few weeks se free!
Steve
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Hi all. hhi has started a thread called chemo... a bit ago. She's scared and can use our help. Can we give her a bit of encouragement?
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Tbirdkim.. If you look at my info at the bottom of my post, you'll notice ours is pretty much the same. I too am a stage 1, grade 3, no nodes and triple negative. If it weren't for the grade 3 part, radiation would have been the course of treatment for me. But being a grade 3 and triple negative, made it near impossible for me not to do chemo. Grade 3 is the worse type of tumor and is most likely to come back if not treated with chemo. Add to that, we are triple negatives, so that takes some of the weapons of choice out of the arsenal so to speak, for us. Chemo is a personal choice and not an easy one. Having said that, with all the side effects and other bs that goes with it, give me chemo hands down. I would not change my decision, no matter how horrible the se are .. and believe me, I have had my moments. As for the tingling, I have had that, but it has not been to the extreme of not being able to use my hands or havine less sensation in them. With TC #1, my hands and feet were very sensitive and tingling. We added vitamin b6 to my daily regimen and it did the trick. So if the numbing is a concern, ask your doctor about adding vitamin b-6 to your routine in advance. Sort of a pre-imptive strike so to speak. After TC#2, the sensation came back even though I was still taking the vitamin b6, but only lasted a couple of days. And again, it wasn't so bad that I had difficulty typing at work, which I do a lot of. They did tell me if the vit b didn't help, they could use neurontin as the next course of action. I didn't need it and have managed quite nicely on just the vit b.
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Hi All,
I'll have 1st of 4 T/C on Monday. Does Biotene mouthwash a few days ahead of tx help or avoid mouth sores? Will get some today. I'm a stress non-eater, so don't want mouth sores too. And I'm just getting over a canker sore too.
Is Neulasta given tx day or day 2? Advil for bone pain? Claritin? Have nausea/constipation meds, and hydrocodone leftover from April mast. too. Stocked up on popsicles too.
Wigs just arrived from Paula Young. Hairdresser friend will help style them next week. Family wedding mid-June, so wanted to be ready. May get a few scarves too. Hope being ready makes fallout easier?
It's great to have this support as we all go thru this. You gals are all great! Best of luck to all.
Will await further s/e tips and progress reports.
Janice
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Hi all! I try to keep up with all your posts, it is kind of hard. Those of you who have had the itchy/rash thing. I had that after last tx. I would be fine, then my arm would itch, I would scratch and hives would pop up. I would use hydrocortisone cream and it would go away. Then it would happen somewhere else. After about 3 weeks, it stopped altogether! All this weird funky stuff, we have all been through. So glad I had all of you! Well my hair is now long enough, that I can actually almost pull it. Not sure what color it is, but know there are lots of greys that I did not have before. As far as Onc saying you would not lose your hair, mine said the exact same thing. What a crock! Be prepared! I was not and that is what caught me off guard when my head started to really hurt and the hair came out in clumps. Well Good luck to all still struggling. Life does get back to normal, keep that in your thoughts.
Lou
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Hi Craftygal
I also have chemo on Monday - I will be thinking about you and everyone else who gets their cocktail on Monday.
I don't know if Biotene will prevent mouth sores - but it does help relieve the discomfort when they do happen. I use a salt water rinse when my mouth gets sore. I use Biotene toothpaste and an extra soft toothbrush and haven't had a whole lot of discomfort with mouth sores.
Stay on top of the constipation meds and drink lots of fluid - exercise if you feel up to it.
Glad you are prepared with wig - I bought 2 wigs before the big fallout and some scarves. Can't stand the wigs so wear scarves all of the time. My co-workers tease me because I bought alot of scarves and they come to see me first thing in the morning to see my new fashion statement for the day! It will probably be an emotional time when your hair does start falling out - even though you know it is going to happen, it still brings tears. You will feel better once it is done and you can move on to the next step.
Take care -wishing for minimal se's next week.
Deb
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Craftygal: I am done with my TC chemo. My mouth care regimen worked beautifully-- I didn't get a single sore the entire time. Here's what I did faithfully, starting the day of chemo #1 and continuing until 2 weeks after last chemo...
1. Biotene mouthrinse and toothpaste twice a day
2. Rinse every 3 hours while awake with a baking soda rinse my onc suggested (1 tsp BS to 8 oz. water). I mixed up 12 oz each AM and swished 3-4 times every 3 hours throughout the day. If I woke up at night, I rinsed with this also.
I know it sounds tedious (and didn't taste the greatest) but it worked! Good luck.
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Welcome, craftygal,
A couple of quick answers: (1) Most of us, I believe, get the Neulasta the day after tx. I'm thinking that I have heard of others who get it the same day, but I believe that would be the exception rather than the rule. (2) I bought some Biotene mouthwash, but I have to admit I'm lazy and have not kept up with it. I have not had any problem with mouth sores, but that's just me. There are lots of se's, and it seems like we all get them in different combinations. Best of luck on Monday!
CHJ
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