August 2010...anyone starting chemo besides me?!
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Taxotere vs Taxol--I saw somewhere that the latest studies showed (I THINK) 6 weekly taxol vs 4 bi weekly taxotere came out the same for treatment, but had fewer side effects (maybe dosing is lower?) I know the article is on this site, but I don't know what part of the site those articles are on. I have to find them by going back out to the web and searching. I do know it came out after I had my first chemo, so that is with in the past month or 6 weeks.
It is definately scary. Sometimes I wish I could be the person who just looks at the doctor and says 'OK'. And really believes that doctor would never make a mistake, and would always be having a good day, and would always keep up with all the latest. But alas and alack I will spend a couple of hours a day finding out about every possible treatment, the pros and cons, etc. I am kind of mentally done with the chemo part (protocol has been decided , is in progress, and appears succesful), and moved on to the completion of the reconstruction and the long term effects of chemo. With a side order of what to watch for in the case of a recurrence or met. I worked on the diet stuff in August (no wheatgrass enemas for me thanks.), and didn't find anyting reasonable that was so different from our normal diet here, so though I am still looking at that, I could not come to any conclusion that required change, so I moved on for now. (always open to your ideas and suggestions!)
Best wishes for a better day for all!
Hi GINGERBREW. Thanks--drove me crazy that I couldn't find you! Does anyone know if there is any index other that by name? It gets so hard to follow the thread sometimes..........
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Ladyinbama
Just wanted to send you a quick hug. I cried when I read your comment about being married. I've been married 6 yrs. My ps (whom I fired) I think secretly hated women. He drew all over the place with black permanent marker so post op I looked like I'd been sewn up with thick black yarn. They gave me a sanitary belt to pin the drains to so I could shower; you can imagine how sexy I felt. My dh had to help me shower and empty my drains b/c I'd get sweaty and weak (and I'm an RN). I fell apart one day and made a similar comment . Did he ever think I'd look like this a few years later.. He said in the same tone of voice (unintentionally) we use when my 5 yr old is being particularly stubborn "I didn't marry breasts, I married you honey". It's still awful but it helped because I realized I didn't marry him for any of his body parts and if the tables were turned I would still adore him. You do look awesomel!!
Carolyn
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((wherria))
I am so sorry that you are having such a difficult time. It sounds awful! I don't know if you'd want to but would treating you inpatient for a day or so be an option? Maybe if they could give you the antiemetics or steroids IV for 24 hrs it would make a difference? I know the insurance co. tries to get as much done as possible outpatient but your onc may be able to make a case, especially since you are high risk for dehydration. Wish I could think of more to help. You can only do what you can do but I hope you're able to continue treatment. How many more treatments do you have?
Carolyn
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ckptry: Thank you for the suggestion. I hadn't thought of that. The first thing I did when I woke up this morning was to take a Kytril (it's a lesser known, but powerful anti-emetic), hoping to ward off the serious nausea. So far I'm a little nauseous, but not the sweaty, shaky, weakening kind that I had all day yesterday. So I'm keeping my fingers crossed. As for the risk of dehydration, I'm drinking lots of Gatorade or Pedialyte because the diarrhea has been relentless. Also the bone pain has started to set in this morning. I will see how I do through the beginning of the day, and if it starts to feel like it will be a repeat of yesterday I will call my onc and ask about your idea. Thank you.
And thank you to everyone who expressed sympathy and concern. I'm using every kind of meditation and visualization I know of to stay in a positive frame of mind, because I know that when things start to go badly, it's very easy for our minds to sort of resign themselves to the fact that the se's will be bad, and I think that can result in actually having worse side effects than we might otherwise. I don't want to create a reality in my mind that doesn't have to be.
Some people have mentioned having chest tightness early in the Tx cycle. I absolutely think that if you have any question at all about it, you should contact your onc, but I will share my experience. I have had terrible chest tightness each time, but we figured out that it was from the bone pain in my ribs from the Neulasta shot. This is a very common place to have bone pain, because it is primarily in your long bones where bone marrow does its thing. It can make breathing deeply VERY painful, and it seems like there's no comfortable position to lie in. Just my two cents.
LadyinBama: YOU ARE SO BEAUTIFUL!
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wherria,
gotta run to get the kids but just wanted to add I was thinking in terms of your next chemo treatment too, maybe inpatient with close monitoring as opposed to having to skip it. Talk to your onc if the symptoms get worse b/c if you do get dehydrated and your labs are a little off it may help them make the case for the next chemo. (of course I hope the kytril works and today goes easier!)
Carolyn
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Thank you all, it helps to have people who understand. My DH too said he didn't marry me for my hair or my boobs, but it is still demoralizing in a way when you lose two of the things most associated with your femininity and sexuality. I'll adjust. I went out this morning for the first time as a bald lady. I have some really cute hats, so I think I was pretty much rocking it
I'm with you on the wigs Sweeney. I've got one, but I doubt I'll wear it much.Lizzy: On the Zyrtec/Claritin, I imagine I'm too late in answering, but I was told to start it the night before my shot and to take twice a day, once am and once pm, for 5 days. But then my pain didn't hit last time until day 7, so the nurse told me to just go ahead and take it for 10 days this time. Hope you are enjoying your LGFB class. Mine was a lot of fun and you get the coolest makeup, stuff I could never afford to buy like MAC, Clarins, Bobby Brown.
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I don't know if this will help anyone, but I use this clock as a countdown to my last day of chemo. I look at it during the day and seeing the time pass makes me feel better:
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Hmmmm.....that doesn't seemed to have worked. It should show the countdown to 12/1/10. well, you get the idea.
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Zachsmom - I have a calendar on my fridge that I put together and I mark off each day as I get closer to finishing.0
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I'm having a better day today, physically at least. I had a pretty good sleep night, but has anyone noticed the WEIRD and constant dreams you have the days following chemo? Maybe it's the steroids or something.
But while I did wake up a lot at least I was comfortable enough to sleep. My shoulder and neck are feeling better - it's still there but getting better. Port site feels okay but I notice a couple of teeny dabs of blood or something on the little sterile pad I have over it to protect it from the bra strap. but no swelling or anything so I think I'm still okay........
This is bizarre, but this time I haven't had the nulasta side effects I had last time. The first time they were minor, second time they were pretty bad~! This time they haven't been so bad. Maybe because I took a claritin that first day?? I also took a tylenol yesterday and one ibuprophen (I know...not supposed to do the ibu...) but I wanted to sleep and it's helped things. I still get those weird jabs of pain in my thighs or hips and yes, my breastbone is VERY sore if I touch it.
I should just make a worry list for each day.....I constantly worry about the chemo side effects.......long term, and short term both. Every little cough, worrying about infection, organ damage, whatever. I just need to let it go!
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Well, I did it! Last night I got my husband to buzz off my hair. It did feel oddly freeing. When else in your life would you voluntarily shave your head? I have probably 1/2 inch of stubble all around but still shedding. It is actually sort of cute, I will take a picture tonight when I get home. Makeup and earrings help me feel less boy-ish and I'm wearing one of my knit hats today. LadyinBama you look so cute with your shaved head and your husband sounds like a great guy! My husband and I will be having our second wedding anniversary next month but it is 2 days after a chemo day so I imagine I won't be up to celebrating much. I realized last night that sometimes I forget that this is all rough on him too. He is generally a very positive person and is really good at making me laugh so I don't always realize it is hard on him too.
I hope that everyone has a good day today, wherria I hope things get better for you!
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Hi chemochicks, I have no good reason or physical negatives but feel very weepy today. The only thing that might explain it is that I'm waiting with baited breath for Onco to call and give me the results of blood test yesterday, in particular the liver enzymes. Yesterday should have been my second infusion and all is on hold until tests come back. In the meantime I am wearing a pink bandana on my head and still have hair on my legs and my peach fuzz still remains on my face. If ya'll didn't know, this whole thing sucks. There I said it. Thank you for letting me get that off my breast, only here can we say these things and it will be understood. I feel better now and will go on with my day and will catch up with you guys later. Maybe I'll have good news if you want to call chemo good news. Have the best day Ladies.0
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onemonga- i just sent up a wish to the universe for good things to come your way. You deserve it.0
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Hi all,
I have my 3rd AC tomorrow. I 'm still taking zofran form the last round, I just can't seem to shake the nausea but at least there is stuff that helps. I feel bad b/c I had a fight with dh the other night, I'd been nauseous all day and I'm having trouble keeping up with the housework so I feel overwhelmed. He tries to help but to be honest he's awful at it; he cleaned the bathroom once while I took a nap and when I came downstairs he was wearing rubber gloves and hosing off the shower curtain in the backyard over the kids slide (wonder what the neighbors thought that was about!)...while my unattended 3 yo decorated the den in baby wipes. I just feel like I have such a short fuse lately so this can't be easy for him.
I think I'm really upset b/c my 3yo asked when her hair was going to come out. I thought we'd explained things on their level but how can they possibly understand....
onemonga I'm so sorry you have to wait around for results, sending lots of hugs and positive vibes for good results. I agree, this does suck. (did you mean to see 'get it off my breast' instead of chest? just wondering b/c I've had some weird slips lately, told my dh something was in the chemo instead of kitchen the other day.
Carolyn
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I heard about a free cleaning service for cancer patients. Here is the link:
http://www.cleaningforareason.org/
p.s. I can relate!
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So, I'm going in for TCH #3 today, and I woke up with a sore throat. 1/2 the cast got sick in the last 3 days and I was singing great last night, but now I'm scared. Are they going to let me get chemo if I have a sore throat? If I have to postpone it, it will really throw off my schedule!
Scared!
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Sweeny: Thanks cutie girl. Carolyn: I really meant to say breast, just trying [in vain] to be funny. Thanks for the hugs and vibes. Still waiting, trying not to pick up the phone and call knowing that when the test comes back the Onco will call me. God love DHs, their heart is in the right place but sometimes they just don't get it. My Darling DH offered to fold the clean laundry for me when I was feeling like crap and even though we have been married almost 25yrs. and I've folded the towels the same way for all that time so that they would fit on the shelves, he did them totally different and I had to refold them after he went to work. I know, small thing considering the larger scheme of things. I'm cleaning the house a little today since the my cleaning lady is comming tomorrow and you know the saying "I don't want her to think I'm a slob". Went to Granddaughter's first soccer game last Sat. and she ran to me and yelled out LOUD " Monga, you've got your wig on" Oh, the horror and comedy of it all.
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Carolyn: I know it's not funny to you, but I laughed out loud when I read your post. I can see your DH standing back there hosing down the shower curtain while the baby runs wild. Once my first husband was going to clean (I was sick or something) and instead of washing dirty dishes or vaccuuming, i.e.,taking care of the obvious dirt, he spent the day cleaning the oven. They just don't have a clue.0
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Aw onemonga I thought it was funny that you said "get it off my breast". Humor always helps me feel better. I am sending good vibes your way for good test results so you can get back to the chemo. When you think about it I guess it is kinda funny that we are all so adamant about getting our chemo but at least for me it helps to have a set schedule and any deviation from that would be troubling. So lisasinglem I am sending good vibes your way too that you are not too sick for today's chemo. I don't think just a sore throat would be enough to stop it but I imagine they check your blood counts (that is what my onc's office does) to see if you are well enough for treatment.
ckptry Sorry to hear that you are overwhelmed and that you are worried about your 3yo. It is hard for her to understand this stuff but hopefully when she gets older she won't even remember the time when mom had no hair. I know it is stressful when husbands don't do household chores properly but the idea of hosing off the shower curtain over the slide in the backyard makes me laugh!
I have AC #2 tomorrow, is it bad that I'm sort of jealous of you ladies who are already on treatment #3?
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Hi guys,
I did laugh at the time, wish I had thought to get the camera, but you know it's tiring when you're not feeling your best. One of my friends said well if he acts like he can't do it he won't have to, but I don't think that was acting! I'm afraid to push b/c who knows what he'll clean in public next ;-)
onemonga I did think the breast was on purpose (and funny:-) but my thinking's a little foggy lately so just checking...
ladyinbama I can relate to the oven, lol . DH will step over 17 toys to spend 45 minutes washing the dinner dishes (not that many, I think they're sterile by the time he's done) ...and we have a dishwasher! Helps to hear others are clueless.
Carolyn
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Sweeney: OMG, I think we had the same LGFB consultant and perky is a little subdued a description! My oldest daughter actually commended me at the end of the evening for not smacking the PERKY little 19-year-old who cajoled and insisted that I (who have never worn make up a day in my life) had to put on my eyeliner myself. Seriously though it was a fun night even though I probably still won't ever wear makeup but I can tie a scarf several different ways and if I lose my eyebrows I know how to reapply them with pencil so they are where they should be!
To all those not feeling well and struggling, I say.....Just keep going and don't beat yourself up! And all of our lives are so much more than breast cancer...enjoy the little things where you can find them.
Positive vibes to all who need them.....hope everyone is having a better day today than yesterday!
Debbi
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ckptry: I'm sorry you're struggling so much with the nausea. I will think good thoughts for you that it gets better with this Tx.
onemonga: I'm also holding good thoughts for you regarding your test results. More waiting!! UURRGGHH! Sometimes I think chemotherapy should be called patience therapy! And don't feel bad about being weepy, or think that you have to have a physical reason, or any other reason. What your body and heart are going through is reason enough. We all have weepy days, and sometimes they just come out of nowhere.
jsw19: Can't wait to see a pic of your new buzz. It is freeing. I agree.
momtomygirls: Thanks for the cleaning referral. I'm going to check that out. I (and my somewhat cluseless dh) could really use it.
lisasinglem: I hope your throat gets better soon, and congrats on singing great last night!
I haven't been good for much of anything today. Still feeling pretty crappy, and now the muscle spasms have begun. They usually last a good week to ten days, and I was really hoping I wouldn't get them this time. I would try acupuncture if my insurance would pay for it. My mouth is also starting to feel sensitive, and I'm hoping like crazy that I don't get those awful mouth/throat sores again.
I did manage to take my dog for a walk today. As you all know our other dog, Bixby, died recently, and Marlow, our other one, has been acting very depressed since then. He doesn't want to play. He's afraid of our backyard. He's not eating. And he vacillates between sticking to me like glue and hiding out in an unoccupied room staring out the window. He's usually a high-energy, attention-seeking, youthful pup, but he's obviously in distress. We don't usually walk our dogs b/c they get plenty of exercise in our backyard, but I've started walking Marlow every day since Bixby died to give him extra fun and attention and distract him from his sorrow, so I don't care how bad I feel, I consider this an extremely important responsibility.
Good vibes to everyone!
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Oh, I forgot to say something I've been meaning to say for a long time. Those of you who are going through all of this with small children to take care of are heroes (or heroines, whatever). And you all sound like you're doing such an amazing job of it. It's inspirational and enormously admirable! On behalf of your little ones, thank you!
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Working most days, taking care of my three year old, going to the gym everyday and divorcing my husband to marry the love of my life.
Shoot me.
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wher - I think there's a new pup in your future! Maybe not now, but something to look forward to down the road when you're well - a new pup for Marlow!
I try to get those longer term things to look forward to carry me through......Short term, today's been a revolving door of friends. Feeling really blessed today - my friend brought dinner, then our associate pastor (he's 88! and still works out several times a week at the gym =:O stopped in to check up on me, then a friend stopped by and offered to bring my daughter to the library with her daughter. While she was here she gave me a few presents - a BC bracelet that I really like and an inspirational book, along with some grocery items.
It is said that God doesn't close a door unless he opens a window and I guess this was my window today.......
Body's feeling kind of low, but spirit's feeling blessed.................. 0 -
GOOD DAY CHEMOSABIS!
Onemonga: waiting is awful...you know I was there a few weeks ago. Any news yet? I hope you get cleared for take-off!
Lisasinglem: I was going to try to start with a sore throat but it had pretty much disappeared before chemo. My nurse said it would show in my blood, as elevated wbc's (1st tx) but you could probably safely try. Perhaps it was the stress of singing and you don't have an infection? Good luck.
Speaking of LGFB, the class was cancelled today because the cosmetitician was hospitalized. The other problem: inner city, big hospital, humongous parking garage was FULL! As I drove around the streets being told from one parking lot attendant to another, I could not park *there* by the time I got in I would have been 1 hour late anyway
One parking valet told me 'parking here is only for oncologic' and I explained I AM oncologic and he said I would have to find somewhere else to park and plead my case to the parking authority or pay him $10 to go in for a 5 minute shot!!!!!! Of course, even if LGFB was still on, I would not have been going in over an hour late! The hospital gave me a free pass for Mr-You-Don't-Look-Oncologic and apologized that if they had some prior warning, they would have had other plans for us. On top of it, he told me the big garage is not safe and why they let so many people park in there is beyond him!!!!!!! Thanks for armageddon talk, pal!!!!! The only SE: fatigue!!!! I think I need Zachsmom's schedule! Stay busy, no time for SE's. I am bored!!!
Ginger: hair for the birdies! Perhaps that is why the crows are at my house?! They know what is coming?!?!?!
Wherria: so glad you have another dog. I know Bixby was quite a loss but it is always nice to have pets around the house.
Ok...going to take roids and ride the bike!
Your FEARLESS Leader!
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i will be starting TC in approx 2 weeks. i'm scared...really scared. i'm so thin and i get sick a lot in the fall/winter. any advice???
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Lizzy and all- I am starting Monday, good I guess. (c: I thought it might be delayed yet again because I found out that my DH has shingles! Turns out it's okay as you have to have direct contact with the rash and he will not be going topless! Also, he will have been on medication for a week. I don't have any signs of it, thank goodness. So, freaky! Away I go. BTW, I did decide to do TAC and it's 6 times every three weeks if you want to update my stats. I got three head coverings from a friend in Seattle delivered the other day and it was a nice surprise, my first ones. Pretty cute. Off to make lists. Peace, A
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Adey--Congrats on the start date!! Finally the waiting is over. Don't worry about the shingles, my son got them the week before I started chemo and within 4 days on the meds he was all scabbed over. There were no problems being around him whatsoever.
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Shira: Sorry you meet the criteria to be here but we are happy to have you! there are so many resources on bc.org at large also. My chemo nurse simply told me the other day to get the masks to wear at work or, in your case, on the trains, subways and during cab use etc... . Aside from that you might need to talk to your onc about the use of ecchinacea (an herbal immune booster) and, without siting a plethora of scientific evidence, eating as much protein as possible to help the wbc's reproduce under the affects of neulasta is very beneficial. There is so much information out here but most of it is just good common sense. I wish you the best. Feel free to hang out with us and "share" as needed!
Adey: finally joining us!? Congrats on your first date. Good times, good stuff! How many txs?
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