Calling all TNs
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Laurajane - I am on the 12x weekly Taxol and so far so good! SE's have been bloody nose only in AM and tired the fourth day out - oh and my nails are breaking more so than ever before. Other than that I am doing pretty good. I have only 5 left so almost 2/3 of the way done!! Good luck tomorrow!
Not sure about the DD taxol!
Wishing everyone a great week!
Kelli
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workmother - I am on taxol x 12 weeks and use claritin every day. Onc said not sure what it is about it that helps with the bone pain but it cant hurt you so I take it every day. I also take steroids for 3 1/2 days after infusion to help with the bone pain. The first go round was a little rough because I was not using the claritin or steroids yet. the last two have not been bad. Today is day 4 out of 3rd Taxol and only a little achy. No neuropothy.
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I ended chemo three years ago and I have slight neuropathy in my left foot, under my toes. It went away in my right foot and finger tips. My oncologist had me take vitamin B6 and B12. Not sure if it helped but I took it any way. The body aches finally went away over time. The cold made them much worse so I tried to stay warm.
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a quick drive-by post:
BC is rare in 3rd world countries because they die of other causes at younger ages. The data is skewed. If you look a the data based on age, young women in 3rd world countries get BC at the same rate as US women do.
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got my last fill today and I hurt... I usually can stay at work after but today I had to go home so I could take something.
Thinking about all of you!
xxoo
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Regarding side effects, I don't know why we even bother to mention some of the other side effects we get, as they just look at us like we're nuts, and shrug it off with "never heard of that before," or "no, not a side effect." Unless they've had this crap, how the heck would they even know. My onc (who I love dearly) didn't even know that Taxotere can cause permanent hair loss on about 5% of women who take it until I showed it to her! That was tremendously reassuring as I sat there with a full head of hair and knew I had 4 DD taxotere's ahead of me! Fortunately, I got my same old crappy fine, straight hair back - I was soooo hoping for thick curly hair! Oh well, for a while there, I didn't even think I was going to live through that crap, but at least I'm still here!
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Ladies
I am just getting awakened to the fact the TN is the worst kind and it will come back over and maybe in another place. I was freaking out a couple days ago but now I am just numb. I don't share this with my family but they go to this site and read stuff. I am not sure they and I understand how bad this TN is. Can someone please tell me the statistics. I am having my second lumpectomy tomorrow to get clean margins, did not get it first time. Also atypia in right breast taken out and a port put into my arm for chemo, which will begin early September. In order to have some hopes that this will never come back - will it? What is the statistics, how bad is it? And how to they test women - blood or what? if there is no lump how would they know where to check for cancer? I heard that blood tests don't reveal much about cancer. Does anyone know how they can figure out if cancer has come back. Thanks to all you wonderful people.
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Lovelyface...I think you are really freaking right now and that is OK..but you will need to really look into the information out there about TN..it really isn't a death sentence...yes the reoccurence rate is higher than the er-pr positives..in the first couple of years...your cancer is in situ which is a really good thing...trust your oncs...talk to people here...believe me..you are not going to die tomorrow...or probably not for a long time yet..hang in there...
When I was diagnosed 17 months ago I thought I was dying in a matter a weeks..nope..I'm still here..hope to be here for awhile too....
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laurajane: Good luck with your appointment, but you should know that most dr's scoff or are uneducated as to supplements and most haven't done any research on it. My dr's are very progressive and cutting edge and it isn't the norm. Many onc's say taking any supplements will destroy the ability for chemo to work and that just was not the case for me. It is important to allow that 72 hr window of time at the minimum before taking any antioxidants. The MagO7 will help clean you out if you have constipation and this I found out from my nurse, the dr had never heard of it! Again good luck and I hope that coming to this board will help you with any SE's you may have. Hugs!!!
Pauldingmom: Good luck and sending you many good thoughts. You deserve some good news!
Nanababy: I am always amazed how others will discount our own self knowledge of our bodies! I tend to be a loud mouth and pushy sometimes and it really helped me get the care I needed even though I didn't have the means to afford it. I used to be quiet as a mouse, but there is power in speaking up and knowing yourself. Good luck with the rest of your treatments. Taxotere should do some major damage to those cancer cells!
Claire: I have so many little aches and pains since chemo. Melatonin has been wonderful for sleeping. Only bad side effect is crazy dreams when you first start taking it, and it's really difficult to wake up in the morning, especially since I stopped drinking coffee in the morning! I read somewhere that Melatonin can help prevent recurrence of breast cancer, but I forget where I read it.
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Michelle: My last two fills were umbearably painfull. Thursday cannot come too soon for my exchange! Hope it feels better soon.
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MBJ..so you used to be a quiet little mouse?? I find that hard to believe
! I do read all of your posts...and agree with most of what you say....still not sure about taking the antioxidents during treatments though..I wasn't allowed to take anything at all...but as soon as I was done..well..my kids and DH make fun of my vitamin "dish"...I think I take about 14 supplements per day..plus green tea...and exercise...but..and this is a big BUT...I still drink coffee, wine, enjoy pasta and steak now and then...And Nannababy..it really ticks me off that no one would listen to you....ok..you are young but still...I want to know..did you ever go back to the doctors that said it was nothing and tell them about your cancer...maybe you should so maybe they won't screw up the next time a very young woman comes into their offices with breast cancer concerns..
LMR..I have that thick curly hair you want so badly...I was hoping my hair would come in straight!!! Always want what we can't have I guess..but..I'm glad you did get your hair back...
Had my bone density test today..of course they wouldn't tell me anything..so I got a little bitchy and said something about how I was going to go run 5 miles and if I broke my leg it would be their fault because they didn't tell me NOT to...
Guess breast cancer brings out the best in all of us..ha ha..
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MJB..good luck on Thursday! New boobs..right? That is so cool!
Michele..when do you get yours?
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Ha Ha Claire about the grocery store..where I shop there is a pick up lane so when you buy your groceries they send them out on a conveyor belt and you go pick them up in your car...during chemo (and sometime afterward) I was petrified that I would drive home and forget them..when I did remember them sometimes driving home I would really have to concentrate on how to get home...chemo brain does suck....
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Titan: My onc and my main dr both told me chemo stops working after around 72 hours and that afterwards it's just waste, so, I say yes to the antioxidents after chemo has done it's job! They are really big on the alternative supplements at UCLA with a whole division made just for this purpose. Hard to believe, but I never even spoke until I was, I don't know, in my 30's! LOL! Now you can't shut me up! BTW: I constantly am racking my brains to make sure I don't leave something somewhere. It could be anything. Hopefully, I don't leave the hospital without my new (and hopefully improved) breasts on Thursday LOL!
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Workmother: I just completed my fourth Taxol, although mine is every week (12x). So far I've felt a world better than I did on the AC. My oncologist suggested taking "loads of" electrolytes and Vit. B6. I also take L-Glutamine, which was suggested by people on other forums and not my doctor. I have a weekly accupuncture session which helps with side effects and energy.
So far, so good. I hate the benedryl and steroids they give me to prevent the allergic reaction, and negotiated with the doctor to reduce those as low as he was willing to go. Generally, I feel fine and exercise regularly and have normal days.
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MJB, Sometimes I have to skip reading some of the posts because this thread gets so active. I forgot if i have already asked, but do you go to UCLA for tx? I didn't go there for tx, but I have gone there for all of my follow-up and wish I had been under their care during my tx.
I am sort of the same as MJB, I was quiet and in the background most of my life. In fact, it wasn't until around BC time that I finally piped up. Now I think people wish I'd hush.
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Put me in there with the "quite" group. Always in the back wanting to just see what was going on and taking in the information. Now forget it. I just dont care anymore. If people dont like what I have to say then dont listen. We all have voices and should use them:) Have a great day ladies.
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Hugs and good thoughts Lisa.
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lovelyface: I just read your thread, and TN is not a death sentence, however, since they didn't clear the margins they are giving you chemo and there are other things you can take to up your odds. There is something called AHCC which ups your natural killer cells, Pycnogenol (pine bark extract) which is a very strong antioxidant and a potent free-radical scavenger (quoted off of the bottle), Wobenzyme with Vit C helps to break things down in your system to help your resistance, Milk Thistle is a liver tonic and very important for providing nutrition to the liver before having surgery and after having chemo, MSM strengthens your joints and skin structure, IP6 supports your natural cell defense, boosts NK cell activity and protects from free radicals. Magnesium, selenium, Multi B's, Vit D3 with Vit K, all very much needed while undergoing treatment. I have gone into debt purchasing all of these products and many of these are found on LifeExtensions.com and breastcancerchoices.com. Eat organic, eat lost of protein, stay away from red meat, sugar, caffein, processed foods and fats at least while you are undergoing treatment and the cancer cells are still possibly in the body and drink lots of purified water. ((((Hugs)))) and best of luck to you with your chemo.
Meece:I received my Oncology at UCLA and had my surgery at UC Norris Cancer Center. I am on MediCal and UCLA's plastic surgeons wouldn't take my insurance unless I went to a county hospital where they volunteer, which I was terrifed to go to. By the time I was almost done at UCLA I found Norris and have received incredible treatment there. Where did you go?
Sorry, ladies, if I am repeating myself with the supplements, but we need all of the help we can get
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MJB, I went to CBBC for tx, but as soon as I finished rads, they ignored me. I didn't even know I should go for follow-up anywhere until my Gyno told me about UCLA. Now I go there for just about everything.
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Heidi, thanks for the links!
Workmother - I agree with Smith & Lynne, leg pains are the worst Taxol SE for me. Neurapathy is just starting (after #3) but it's not too bad yet. Hopefully it stays that way! Hope your treatment went well today!
Nannababy - Great news, keep it up!!
MBJ - Good luck tomorrow, you must be soooooo excited!!!
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lovelyface- concentrate on the In Situ factor---- it's preferable to IDC. Neither is a cakewalk though.
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MBJ~ Can't wait to hear how it goes!!!! Thinking of you!!
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Had my first Taxol today do I take the L-Glucosamine now or wait 72hrs. I have only a limited amount of questions I can ask my never available oncologist. I probably won't get a return call from her nurse for a couple of days.
Kad -22- I'm so happy to hear you are doing so well. Are you taking anything to help with ES?
JenC -Claritin really helped with my bone pain after nulesta shots, I'll ask tomorrow. I called today to ask my onc about what I could take because I had my first Taxol today and her nurse told me I should continue to take the Zofran. I slept for several hours after I got home from the steroids, benedryl and probably because I was so wound up from my fear.
Mitymuffin- Congrats on your 4th taxol. What kind of electrolytes? I love hearing that there is a possibility to feel better than I have on AC. I'm seeing my new acupuncturist on Friday.
MBJ- I'll be thinking of you on Thursday, hoping everything goes extremly well for you. How exciting to get your new breasts. I want your doctor. LOL. I would love to fly out and get a second opinion. I am curious as to weather I could receive the contact info. You can PM me if you don't mind. I actually had tentative plans to go out there. I wanted to wait and see how I felt on this Taxol.
Titan- I can't think of anything that would taste better to me right now other than a glass of really good red wine. I'm scared to because of the Taxol I got today so I will probably dream about it.
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MJB, I went to a consult with UCLA's PS and they wanted an enormous amount of money to fix me up. And insurance wasn't going to cover it. I went to a private PS, and ended up paying under $700 out of pocket for the first surgery, and less for my second. It's all about how much your PS and staff want to get involved with presenting their bill coding correctly to the insurance companies. I was on MediCal for the last couple months of tx, due to my insurance being cancelled because of an ugly divorce. I think that is why my provider waved bye-bye. I sure don't think much of them. They have never tried to follow up on me for any reason. You'd think they'd be curious if their tx worked, and for how long.
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Laurajane..I certainly don't want to sound like an wino or anything..but my nurses and the onc said that a glass or two of wine during chemo wouldn't hurt..they said it would calm me and my stomach..I never even took an ativan at all...I didn't really drink much because it didn't taste that good..I think it was more the act of doing something "normal" having wine, having dinner...that kind of thing..putting the chemo aside after I was home and trying my hardest to forget about it for two weeks...
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Are you guys for real? Chocolate beats wine anyday! 0
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Even in Utah, I was told wine was ok in moderation.
Dang it, Heidi, I lost my taste for chocolate, except for dark chocolate. So sad.
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Hot flashes anyone? Had the Taxol today and I keep getting these unexpected heatwaves. I checked the air conditioning and its running right.
Titan- I agree. Normalcy is something I and probably most of us crave.
hhfheidi- I only occasionaly think about chocolate, it's usually after a nice Italian dinner. A small piece of extra dark chocolate goes so nice with a nice glass of good red wine.
retrievermom- I've pretty much lost my taste for sweets in general. Homemade lemon sorbet seems to work well getting rid of that crisco metallic coated mouth taste that our good friend chemo gives us.
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Laurajane, I hope the Taxol goes well for you. The AC was so miserable that, to me, this is a blessed relief in comparison. I've had no nausea and so far just a toe twinge or two and a bit of fatique. My doctor was vague about the quantity of electrolytes. I bought some powder electrolytes at a local whole foods store and they make water taste like lemonade. I have noticed that sometimes I get cramps in my feet at night and the electrylytes help. I also take them while excercising. The accupuncture helps give me energy, and may help with side effects.
I don't know if one should wait 72 hours before taking the L-Glutamine, and would be interested in what others of you think about that.
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