TRIPLE POSITIVE GROUP
Comments
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Ooooo! The board makes me feel all wacked out feeling like on some psychedelic drug. Lol!
Sol-exactly! Thanks for the synopsis, gave me a chuckle.
Rozem- don't worry about the family, just get yourself taken care of. Don't let that stress ya out. Hope you do better real soon.
Jennifer- lol! Love the names. I still have to name my port. Any suggestions?
Pbrain- didn't noticed steroids that much on first tx. Unless it was the steroids that gave me the unbearable headache noting to extend them out like this time. But the Ativan helped. Lol!
Good night all, hope everyone is able to get some rest and the board clears up in the morning!0 -
Soltantino I finished chemo Jan 20th 2011! Not only am I a non believer, I'm a Jewish non believer
I would demand they take some of the saline out. It sounds like they are filling you too fast. You should not be in that much pain. I know the first time I had discomfort my PS told the nurse that I could come back and get some saline removed. I didn't because the Aleve worked for me and I was fine in 24 hours.Pbrain everyone reacts to steroids differently. I was fine. Had no sleep issues. Wasn't ravenous or moody. I might of had a slight energy buzz but nothing more than drinking a Dr. Pepper would have caused.
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mstori - I suggest portabello, portfolio, or sporty, import while you have it - export when you remove it, or support because it is there to help you!
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lago - Do you know what your total dose was for the steroids for each treatment? I always wondered if my dose was a bit overzealous. Did you get them pretty much all at once?
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pbrain, re steroids: When I've had them in the past for a few days after a bee sting, I had moments of wanting to kick in my dryer when it buzzed, and such. BUT with chemo, I've had more steroids than the nurses have ever heard of (the allergic thing) and this time being cranky and mean didn't seem to happen as a result. I did notice if I was trying to do too much in general, I'd be quicker tempered and have lower tolerance of .. say, the dog refusing to stop bugging me. But that wasn't necessarily steroids. So, hard to say how steroids will affect you... wishing you no problem!
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Rozem I don't know a thing about what u'r going thru, but I' sorry it's so hard on u. Please listen to the girls and talk to i'r Dr.
I just call my port this stupid thing--not original I know.
Oh and feel the magic after I read u'r first post I wondered did u make any brownies tonite?
And I loved sterids I worked 12 hrs the day after and 8 the following day with loads of energy, by the 3rd day I sat on the toilet all day and collapsed for 4 daysthen start it all over on Monday again. But I knew the system so I really only worked for 2 days a week.hahaha and it was always the same for 3 yrs. I kew exactly what I could do then I'd collapse
Yes the stupid screen is my fault I wrote to the mods to help me out--but as I said before I controlled everyone's computer--1sr step to hacking--my goal for 2 yrs.
Oh Pbrain I had something to either asku or something, but it's out of my head, Oh Oh I think this was for u---The couple of wigs I got were from the a=ACS and they have all their wigs in small. med and large--buz I have a big head literally and the large were perfect. And so many colors and styles that some are lovely.
Ad zi can't stop wstvhing the weather channel--It's a mess. So anyone if u'r in it's path please take care of u'rselves.
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Having trouble sleeping here - sandy is making it sound like my house will blow away! So.....when im up late, I start thinking BC crap. Wondering what is considered "a lot" of hot flashes in a day on tamoxifen. Anyone know?
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Shore: I have been on Tamoxifen for one year. I do not have any hot flashes now (maybe odd feeling of warmth). This leads me to believe that it isnt working. I know Tonlee felt the same. My onco, however says that not everybody experiences SE's.
What I didnt realise was the SE of fatigue with long term Tamoxifen use. Has anyone experienced this? Have felt fatigue creeping up over last fortnight. Last night I was too tired to cook dinner.
I havent posted for a while but I am thinking of you all. Those coping with chemo, operations and now Sandy.
Liz
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Hubby and I are politics junkies so I don't mind a good discussion but probably this forum is not the place.
Kayb: I'm going to look at that articel from Ucla However I feel that they may be non partisan in theory I'd bet they are very partisan in paractice. I'll withhold final judgement until I read the article. ;-)
Re: echo vs MUGA. Thanks for the info. I've only been getting echo's and sort of wondered about not doing MUGA.
Re: Hair. I shaved my head before my lumpectomy (a few weeks before starting chemo). I didn't want to have to deal with long hair with an arm the doesn't work well and I figured I was going to lose all the hair eventually so away it went. I actually am loving my new short hair. (It has been growing slowly now for 3 month.) I plan to keep this look. I have a close friend who went through chemo etc. 5 years ago. She told me she never looked at her bald head. Covered the mirror when she took a shower.
Re: Exercise. I am 3 months post chemo and 2 months post radiation. I still do not have much get up and go. When walking uphill I go at a snails pace. I'm trying to get motivated to jump back into my stretching and resistance exercise routine but it is going slowly. Just when I have a week that looks good to start I catch a cold or there is some family emergency that takes up the time and gives me an excuse to sluff off.
Peggy
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Kay, I'm so sorry to read the women from your group received that kind of reaction from their elders. Ugh. Just ugh. They're fortunate at least to find a group with caring and compassionate survivors...well, I know at least one of you are
Jack,
Yes. The fatigue was really bad the first several months of Tamox for me as well. Either I grew accustomed to it, or it went away. (I think a little of both.) However, I take it at night now with dinner, so by bedtime if there are any fatigue like SE I am going to bed anyway!
If you are concerned about "if" Tamox is working for you....ask for a hormonal panel. That way you'll have all the information. It may show you are in menopause, or it may show you have high levels of estrogen, but not enough to start your periods....I'd want to know that personally, since there is no way to determine who Tamox works for until and unless the cancer returns.
As far as hot flashes. Never, not even chemo hot flashes, can touch Ooph hot flashes. I have at least 10 a day, and mostly sweat between my breasts and on my belly....which is weird.
I was hoping they'd slowly diminish, but SpecialK had a hysterectomy years ago and had hot flashes all along.....
Kitchen, good to see you!
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I think it's important to continue monitoring hormones. My hormonal panel this past spring showed me in chemopause. Last month, my period came back after over 2 years on tamoxifen. The hormonal panel now shows me out of chemopause. I am very glad I didnt switch to an AI yet!
Jen404... your idea to have a surviving and thriving group is great! It helps to surround yourself with folks who are fitness and nutritionally focused!!0 -
kaybe I think I was the only one here that didn't have issues with steroids. I had 4mg tablets of Decadron, 2 taken the night before chemo, 2 the morning of chemo and 2 the evening of chemo. I don't need steroids to think most drivers are stupid. That's why I like public transportation.
Shore if you have to ask the question "what is a lot of hot flashes" then you are probably having a lot… especially if it's effecting your sleep.
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Thanks Lago - Maybe your steroid presecription was a better dose and dosing schedule - Mine was higher and that might be why is was harder for me - I was prescribed 4mg decadron, 5 pills the evening before, 5 pills the morning of and then at least 10mg more in the chemo premeds. Did you ever get steroid red face? I got it each time.
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OK, I don't just get Herceptin, Before my Herceptin they give me for some reason
Zofran 8mg , Pepcid 20mg, Benidryl 25mg, Decadron 8mg
Herceptin is last after all of this drip is done my Herceptin is 480mg
By the time I am all done it is about 2 1/2 to 3hrs total every 3 weeks. Is anyone also on the stuff other than the herceptin?
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No red face. I think my face filled out a little but I looked great that way. I used to kid my onc about that. I have a very long narrow face. Steroid face puffed out the sagging skin therefore softening the frown lines. Told her I was going to look like shit when chemo was over because no steroids to puff out my face.
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lago - I got the puffy face too but I didn't need it -lol.
Ang - I didn't get any premeds with the herceptin. Is it possible they forgot to change the premed prescription after you finished chemo? Or did you ever have a reaction to the herceptin and they are trying to prevent that happening again?
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Omaz- had reaction when on if i can remember either cytoxon or taxol cant remember. But you would think just on herceptin that they would try it with out the other stuff. Hmm maybe I will ask next week when I go in.
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Omaz - I got 16 mg day before chemo, 20 mg day of chemo, and 16 mg day after chemo. Quite a bit of zip from that amount!
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dance - yeah! zippey-do-dah
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kayb - I'm not far too behind you with about 20 hotflashes in a 24 hour period. Awake 5 to 6 times a night. Since stopping Tamoxifen I now have maybe 12 in a 24 hour period. Now waking about 3 to 4 times a night. Much more managable, but still not great. I can't imagine one every 30 minutes. Good grief.
15 in a week? Please. Can't believe that is what is considered severe per the studies!
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ang - I get no premeds for my 3 weekly Herceptin. It runs through in 1/2 hr and I have had no problems from that. At the end I've even talked them into only running a 50ml flush instead of the whole bag they hang.
Having said that - my centre staff are so inefficient that I'm still always there for nearly 3 hours...
Hot flushes - I have had not a single one through this entire chemo/Tamoxifen journey. Was feeling lucky until I found a research paper that seemed to find that women who got them are less likely to recur :-/
Jenn0 -
Seriously consider Paxil. It's generic now. I picked mine up yesterday and it was 10 bucks for a month. I'm 1 year post-menopausal and 2 years since my last period. No real hot flashes to speak of yet.
Now I hope the AI's don't make them start...
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15 flashes a week is 2 a day. That is not severe. Are you sure it wasn't a misprint and they meant 15 a day?
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I'm getting at least 8-10 flashes per day. I'm looking for signs that tamoxifen is working, but I know this might not even make sense. My last herceptin will be next week and I guess I'm a little freaked feeling that tamoxifen will be the only on-going thing protecting me at that point. I know rationally,that the chemo and herceptin were the big guns, but I'm not rational chick I used to be!
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Well, I took Celexa and Lexapro before starting Paxil and they did nothing for me. My primary care doctor was treating me for anxiety, and it was like I was taking nothing, just getting worse. Then she put me on Paxil and my anxiety is so well managed. I had no idea why I wasn't getting hot flashes until I saw the trial report on the front page of breastcancer.org! Different SSRIs don't work for everybody, but heck, I'd really try it just to see. I know so many people who struggle with the flashes. I'm now a Paxil zealot!
Sol, I am not too versed in electrophysiology, but it looks like your heart rate was getting pretty high. Your average heart rate is normal (90 BPM) if you are a little older > 60 yrs, but some questions--do you get nervous at the doctor? A little white-coat hypertension? That definitely contributes. Also, anemia could be a factor. When was your last CBC?
Ask your cardiologist what he/she thinks. Maybe they'll put you on a beta blocker. I wouldn't stress too much about it. They are really just looking for changes in the contraction of the heart muscle with herceptin.
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TonLee I try to check in now and then. Your forum is so popular that it is hard to keep up.
Peggy
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Jenn28: I vaguely remember that study about hot flashes and recurrence. Are you going to stick with Tamoxifen or an ooph. So many hard decisions. My periods returned 3 months post chemo. They are now every 4 weeks, regular, but very scant so am hoping they will soon fizzle out. Im pretty sure I'm perimenopausal. This is not ideal in terms of being menopausal and able to take an A.I, but it does mean that my hormone levels should be alot less than pre dx (my logic there only!)
Liz
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Wow! The board has been busy! Thanks Cami for fixing it. Lol!
SpecialK- so it will be portebella. Like that! My port has a name.
As far as the hot flashes, I'm not there yet, so can't contribute. But I'm trying to absorb, so when the time comes, I will be ready. Pbrain- I may need you to remind me of that med. I swear I copy and paste so much info from you all, it could be a chemo how to book! All proceeds to everyone! Lol!
Still feeling rather liberated with my head shaved. Just a little itchy. The top is still about an inch or so long, but the back is going shiny! Lol!
Hope everyone is okay that are in this storms path, and aftermath as well.0 -
shore there is a chance that you might have only needed surgery too. Will there's alway that "what if" you're in pretty good shape to beat this given your aggressive treatment. There are women with mets that just do the hormonals and are under total control… that's how powerful the hormonals are.
Kaybe I guess getting all sweaty 15 times a week is a bit intense. I thought that number included mild flashes. I only get mild flashes now that chemo is over. During chemo I got moderate to mild. Never got drenched. So if I got 15 a week it's really no sweat (pun intended).
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For a lighter note, Just wanted to show TonLee my "Hat Hair" 0
