August 2010...anyone starting chemo besides me?!
Comments
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Lizzy! Glad to hear from youre being seen by DR (not that we dont do a good job ourselves sometimes but we didnt go to school for 10 yrs to learn it lol)
Funny story- my cell broke and i havent been able to make or recive calls or texts since the day before xmas, it was the holidays so i didnt think much of it, most ppl have DH's number if they needed me but one of my good friends (since we were in middle school) was trying to get ahold of me she, she couldnt and got worried. She still lives back home in washington and so she looked up the hospital near me and called to see if i had been admitted, she knows my husband is a cop but not what department, she was calling around here asking for my husband (she called the city police but hubby is a sheriff with the county) she even was msging my friends on fb (of course i havent been on FB for 2 months so there werent updates on there or anything) asking if they heard from me ect... i finally got the message and called her last night. Of course she had assumed the worst. I feel so bad my friend spent part of her xmas holiday thinking i died... But i gave her my husbands phone number so if she ever cant get ahold of me she can him!
Just makes me realise that she is a GREAT friend, and truly cares!
Debbi- Good luck tomorrow! Hopefully the d and c works cuz spotting and bleeding for 4 months SUCKS (depo used to do tat o me)
Sweeny- glad to see ya, how'd the visiting with family go?
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sptmm - I have the numbness too, mostly in my feet and ankles. Joy! What is up with your EKG? I have my first post-chemo echo test tomorrow, hoping everything is ok. I think I have them every 3 months or so while on herceptin.
Lizzy - good to hear from you! I am exercising but really its a bit pitiful. I make it up the hill, huffing and puffing and complaining the whole way. I went with my daughter today and she kept asking me if I was alright, at one point she thought I was crying. I wasn't, just having a hot flash and huffing and groaning all at the same time!
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Okay i am gonna lay it all out there-
My younger sister is a heroin addict (she is 25), she still lives in Washington state, She started dating this guy who held her down and injected her the first time to get her hooked. I suspected he was abusive because when i would call and talk to her i could hear him telling her what to say in the background... Anyhow i got a call a few hours ago that my sister is in the hospital because he beat her severly (huge black eye and multiple bruises on her body) He also cut her behind both knees TO THE BONE luckily he just knicked one of the tendons not through it. ANd deeply cut her arm. She is in the hospital and he in jail- BUT OF COURSE SHE DOESNT WANT TO PRESS CHARGES
They want to release her today, but none of my family want her at their houses for various reasons (no space or they dont want her detoxing in front of their young children)
I am going crazy here!!!!! Of course i cant call anyone (my new phones come in tomorrow) so i am in the dark.
Update: she was released and wants to call him in jail to "tell him that she's okay and she loves him"
WTF- i know its hard being in the cycle of abuse, but beng on the outside looking in i wish there was somethin i could say or do to make her OPEN her eyes!
Okay just had to get all that off my chest cuz i am going stir crazy here
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Texas: glad your friend finally found you and boy, she must have been happy. As for your sister, it is a very sad thing. i am sorry your are going through this.
unfortunately there was much trouble accessing the port so now i have an arm iv. i can't bend that arm so i am one handed typing now.
Hopefully they can access the port tomorrow but signing off now...goodnight pals and sweet dreams to all.
Sptmm: good luck tomorrow...i hope it is a success
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Sweeney - I do finally have hair growing in. Joy! And in the last couple of days I realized it has color, too. (For awhile, I could feel it, but it was really colorless). I'm not sure WHAT color yet, and I'm hoping it is not gray!
Lizzy - I'm wishing you the best over the next couple of days. I'm glad you were able to get out last night and that they are taking good care of you.
Texas - I'm so, so sorry to hear about your sister. Did she find a place to stay? The cycle of abuse is really addictive in the worst possible way. And since she is the only person who can actually do anything about it, it must be maddening to watch. I'm praying for her and you. All you can do is let her know she is loved and hopefully sometime soon she will believe it.
Edited to add: I was REALLY excited today because I was able to walk home from the coffee shop (UPHILL) and then walk up the stairs to my apartment. I live on the 8th floor, and this used to be a daily occurrance for me - I would walk up and down the hills for an hour and then run up my stairs. Well, today, I walked 20 minues and then walked very slowly up the stairs, but I was SO EXCITED I was dancing down the hallway to my door feeling like Rocky!!
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Has anyone else read Lance Armstrong's book "its not about the bike"? It is very insightful about the whole cancer experience. I am about 1/2 way through and can't put it down.
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Texas - sorry to hear about your sister. First, I think her addiction to her boyfriend is far more damaging and serious than the heroin one. She cannot detox from the heroin until she gives HIM up completely because he will not only continue the cycle of severe abuse but also of her addiction. If she can't even press charges against him for nearly killing her, she will not be able to resist heroin if he's pushing it. I know this is really difficult and it sounds cold, but she has to make up her own mind and be strong by HERSELF before it's even worth someone coming beside her and helping her get away from him and break her substance abuse.
Heroin is horrendous. My cousin has been two years in detox from it......
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Is anyone else like going NUTS with hot flashes?? I started tamox two days ago and I dont' know if it's that or if it's still the old hot flashes I was having since the taxol!
I think my hormones are all wacked out. I haven't been able to sleep at night because of them! I sleep in a cold room and I'm constantly waking up all sweaty or freezing!
ON another note, the side where I had my port out, that arm is driving me nuts at night. I'm glad it' s not my mastectomy arm but still! I have numbness in some of my fingers and pain all down my arm in the middle of the night. IN the daytime it's fine and when I go to bed it's fine. It's after I'm in bed for a while. I can't get comfortable when I wake up and I'm constantly moving and shifting to try to get it in a good position. Once it is, I can fall back asleep........
I don't know what this is all about. I'm thinking and wondering if it's because I now have range of motion that the port is GONE and those muscles have been affected and are being used again.
I'm having new year's day brunch here - decided this yesterday at my mom's house. So I have to shop tomorrow for that and put together a decent but simple menu!
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Cal - My sleep sucks because of the hot flashes.
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Texas: I'm so sorry about your sister. I can't imagine how difficult that is. Hopefully she'll "wake up" and get away from him before he can hurt her again.
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Lizzy: I'm so glad to hear you are in the hospital and they are taking care of the infection. What a scary situation.
Cal: I was reading on another thread here about hot flashes getting worse with the tamox. I've been having a hard time sleeping lately too. Not due to hot flashes though. I'm not sure what is going on with me.
On exercise: I can run 4 miles without stopping for a walking break now. Once I did it once, it has made it easier to do it a few more times (3 times total now). I am 9 weeks post my last chemo and 9 days past my last rads. My legs and feet are super sore but I keep going. I haven't lost a pound though.
On hair: I'm so impatient with the slow growing hair and annoyed with the stares. I feel like since I'm done it is time to move past the stares. Yesterday I was drooling over Emma Watson's new haircut.
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Hi All,
Thanks to everyone for submitting their news. It's touching and inspiring and helpful to read everyone's highs and lows.
Here's my query for you all. I finished chemo (six rounds of taxotere, carboplatin, and herceptin) five weeks ago and I'm feeling slowly but surely stronger and stronger. My tastebuds are back and my energy is up. But, the side effect I'm still struggling with is water retention. I continue to have significant swelling in my feet, legs, arms, and hands (less in my torso and face, I think). Diuretics have done little good. Acupuncture has done little good. I'm told this is a reaction to the taxotere. I think I had a little water retention during chemo (it's hard to distinguish weight gain from fat vs. water, at least at first), but I've had a lot since the end of chemo, and it's going away super slowly.
Do any of you have experience with this? Is there anything I can do to reduce the water retention / edema? I'm exercising quite a lot, drinking plenty of fluids, and not eating a lot of salt.
Thanks very much!
Katherine
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JoyKK - I have fluid retention and am about 5 weeks since last chemo (TCH). Mine seems to be distributed all around, less so in my lower legs than in my arms. It seems to be getting slowly better. I have also read that it is a taxotere thing and just takes time to improve if the diuretics don't help. Did you ask your onc about it what did he/she say?
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Ann - four miles!? WOW! I don't know how many miles I go because I just go around and around the property.
I tried one of those step things that tells you how far you've gone but I don't think I did it right. I'm thinking of driving my car from the front to the back of the property in order to see how far that is and then estimating how far I'm going.I love my kids wii fit balance board! It incorporates strength training which i think is good after chemo since we've lost muscle mass... And they're learning a lot about health from it. My 6 year old came into the kitchen and told me he needed two teaspoons of mayonaisse because he "lost" 1 calorie doing a certain exercise and he "wants the calorie back that I lost!" LOL!! We had a discussion about foods and calorie burning and exercising that put his mind at ease, etc. It's a pretty neat thing - we have a gym in town but I can't afford to join it, so this combined with running is going to be great!
I packed up the Christmas stuff simply cause we needed the space again here! It's nice, but I think that combined with moving bins in the basement to get the things we sold this week and packed up, ARE my workout for the day!
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Cal: That is exactly what I did. I drove around the circle of our development and it turned out to be 1 mile. So that makes it easy to calculate.
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Hi Omaz,
The oncologist and his nurses have said the fluid retention just time to abate and that it could take as long as two or three months (but he did prescribe diuretics, which I've now completed with little effect). I gather it's a reaction to the taxotere. I was hoping someone would know of a cure and, if not, that I'd at least get the benefit of knowing I'm not alone in this experience, and that's clearly the case and some comfort!
Best wishes,
Katherine
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Hi Joy--I also have fluid retention due to the Taxotere--they say it is one of the SE that happen to very few. I had really bad fluid retention in abdomen/face/neck which came about 1 week post my last chemo. My Doc did not prescribe diuretics--he said it would go down with time. I went for an appt to hosp about 2 weeks ago and they did say that it was indeed fluid retention and only time will take it down--it sucks, I wish there was an instant fix as I feel pretty self-conscious of my face/neck. I did see some people recently who said it looks to have gone down--I was pretty happy when I heard that
You are not alone but unfortunately, I haven't heard of a fix. Someone told me that the more you drink--the faster it will go down but Nurse told me that was not true. -
Lizzy - How are things going?
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rachel - I am wondering if the fluid retention probelm is underestimated, many of us seem to have it.
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Omaz--You are probably right--Doc originally told me that only around 6% of people will have severe fluid retention from Taxotere--but I have met a few people that have similar issue. I wish there was something to help but doesn't seem like it. As I mentioned, my Doc wouldn't prescribe diuretics. I am hoping that now that I am feeling much better from chemo--I can get out and get more exercise and perhaps that may help. I know that some of my weight gain is not just fluid
Lizzie--Hope you are feeling better and they are treating you well at the hosp! Hopefully you are out for New Years.
Sweeney--Not sure if my headache is Tamoxifen based or that the kids are home from school! I have taken everyday and I don't seem to be having any major issues. Granted it is only about a week. What happens if you forget it? Does anyone know? Not that I have YET but I am guessing that I will at some point.
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Good evening chemosabes and radicals-
Reporting live from the hospital where the swelling has gone down a bit and the color is getting a bit lighter. All things considered I am probably looking at a few more days in but so be it. At least when I leave this will be under control. Also I got the surprise of my life today: my PS popped his head in! Yesterday he was on vacation and I guess he was scheduled to come home today. I really did not expect to see him, so not only was it a pleasant surprise but, it was also so nice to know he is here in case the TE has to be removed etc... .
Omaz: your post about the walk was funny in a moderately sad way! I also heard good stuff about Armstrong's book. If it is that good I will pick it up. Let me know.
Lisasinglem: That is such GREAT news! You must be euphoric. I look forward to your posts about how you are doing post-chemo because you live in one of the most beautiful, albeit hilly, cities. I knew the breathlessness with chemo must have driven you bananas simply based on your location. I am so happy you were able to do a workout again. That is just great.
Calamtykel: hot flashes! That is pretty much why I did not realize this boob was getting infected because in the middle of the night when I wake up with hot flashes, throwing the covers off, on goes the fan, I was not aware I was spiking fevers as well. As for the arm pain, it might just be the muscles adhering to the tissues and nerves, reestablishing connection once again and finding it‘s place again. I imagine this might take a few weeks but then again, this is just an idea.
Ann97: Is it my imagination or were you the very same woman who thought she would never make 4 miles again only a few weeks ago?! WOW....you put that goal quickly behind you! Good for you. What a feeling of a sense of accomplishment.
I must say, however, drooling over hair is a bit of a caveat! Seriously, the hair takes the longest to come back for most...or at least to reach a point of satisfaction with it. I am not even done, still have 1 to go and I have pieces over my ears that are 2+" long and the rest is in less varying lengths. It looks fab!
JoyKK: fruits, vegetables (not cooked in butter, oil, fried etc...) steamed and good ol' granny smith's with a cup of black coffee will help the water get out. Beyond that, the conversation on water consumption vs. retention looms long and large as it always has.
Sptmm: How did it go today? Thinking of you and hoping you had success.
Rachel: Like most meds, it is probably ok if you miss 1 day. We are all going to miss one day occasionally for reasons unknown. You do need to ask your doc but they will probably tell you to just take the next one at regularly scheduled time. The headache could be connected if you missed it perhaps but I might look to the kids being home first!
As for me, the swelling is going down the slightest bit and the color is getting slightly better. I also slept today for like 4 hours! That felt great because last night it was 1.5 hours. I am glad to be here, in capable hands and getting this thing under control.
All: thanks for your concern-it means the world to me.
OK, well, I am actually eating regular food again....not a lot but enough. I am going to have some cereal.
Have a good night all.
PS-finally got the port accessed and things are looking up! This also means I can bend my arm again so I am 2 handed typing again!
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Lizzy - You sound relaxed, good to hear from you and glad things are looking less pink!
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On hair- Lisa- my hair came in colourless too, almost clear. It was a weird, as if there was no pigment in it at all. So I dyed it. I've dyed it twice now, but I'm an early grey haired gal so I've dyed for a while. I think I may have been one of the first on this thread to finish chemo tx (I finished Oct 13th, if I remember correctly??). Anyway, since then I now have more than an inch of hair and I'm pretty sure within the next couple of weeks I'll actually have that Emma Roberts (Hermione) look going on. What I can say was that I obssessed over it for the first six weeks and then bammo it just started growing and fast! Also it doesn't seem thinned at all. Still very thick. So there's hope gals!!! It's coming! Hang on!!
Rachel- I did miss a pill already and I can tell you what happened- I panicked! Ha. For sure I'm going to forget now and then. But I've put the bottle beside my toothpaste and makeup and that will remind me in the morning. At least I'm hoping so. And I definitely agree about the kids being home and potential headaches, I realized that for the last seven months I've been largely alone during the day. It has taken some serious getting used to having the kids home over the break. I've defintely felt my energy drop.
Ann- 4 miles??!!! I couldn't even do that pre-cancer!
Legs/Ankles/Feet and Pain- my feet and ankles are KILLING. I know I've heard some of you mention this. Could we just do a little poll- how many have this SE right now? I'm going to talk to my onco about this at my next appt for sure. I'm still exercising but the pain is pretty bad.
Lizzy- So glad you're feeling good. I'm sure you're keeping the nurses entertained!
Texas- You've got so much going on right now, I hope your sister is okay and that she can find the help she needs. But be careful to take of yourself too- it's not selfish to think that way. Your positivity always blows me away. I hope your sister gets the help she needs, but not at your health's expense.
ALL- has everyone watched the new BCO promo video? Get out the kleenex gals. It's a tearjerker. It took me back to those initial moments of diagnosis where I was terrified and didn't know where to go. I still remember that so clearly. My first post was just an outpouring of terror on my part and so many women answered in a matter of minutes telling me I wasn't alone, I wouldn't have to do this by myself, it would get better. I still go to the "Just Diagnosed" board and post reassurances to newly diagnosed women.
Night all. Sleep tight.
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p.s. FLUID RETENTION- so much. I look doughy. I hate it hate it hate it. Just wanted to add my two cents.:)
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sweeney - My face is puffy and I don't have eye brows and my hair is short and under a cap, the man stocking the shelves at the store today said 'Hello Sir' to me. That is a first! (What kind of steroids were those...!)
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Omaz that's funny and terrible all at the same time!! My worst moment was when my 7 year old took a photo from the shelf of her and I when she was an infant, she was looking at it intently and said, "Mom, is this really you?" I started to cry. I've changed soooo much. But I'm working so hard to get back to looking like the "real" me.
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sweeney - That's so hard! She is at a young age, maybe hard to understand what is happening. Even my 14 (almost15) year old daughter has trouble understanding all this. Such a deal.
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Sweeney: kids just don't know. It is hard for them to comprehend the concept of time.
As for these nurses, not only are they wonderful but they are also very entertaining so we are keeping each other entertained! Honestly, if laughter is the best medicine, I will be better in a few minutes!
Omaz: that was a sad anecdote but, at the same time, your delivery is fiercely entertaining! Go back in a few weeks and if you remember the worker say "excuse me, miss!" That will make you chuckle and it will feel really good and not because he meant to hurt you but just because it will be pretty funny!
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Omaz: In fact, in a related story, I had a condo in a community some 8-9 years ago where the cherub of a condo association manager decided that when we came over to talk to him, which would always be about issues because he was a jerk so it would not be social, his 450+ lb ass would answer the door in his granny pants with his man boobs hanging out and nothing else on! Of course he was doing this to keep us from coming over! I was so disgusted I made a motion at the next meeting to appoint a videographer to follow any tenant going to his apartment to discuss issues as a form of meeting minutes! Man boobs quickly put his clothes back on! What a gross idiot. Then he got a mail order wife from Thailand and I am sure you can entertain yourself with thoughts of the rest of this story!
In any case, everytime my mother came to visit, she would almost always run into him and would say "excuse me, ma'am!!!!!!!!" Needless to say, this would rile him up!
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Sweeney - The first oncologist I saw told me it's not a big deal to miss a dose of tamox-------
good to know since I'm sure I'll forget sometimes!
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