Calling all TNs
Comments
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BTW- I always had straight hair but now I have a little wave on top. How long do you guys think these post chemo changes in our hair generally last? And, for the record, I plan on keeping my hair short also, as I have gotten a lot of "Gosh... why didn't you do that sooner, it looks great?" comments.
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Agree Heidi..our common thread is that we are TN'S...and I like that we can all support each other no matter where we are in our journey..just diagnosed, in the middle of treatment, end of treatment or trying to find our way after treatment...I like the information people post on here about TN...I like all the wonderful women who post on here...I like laughing at your posts. I like that though this is very serious *s**llt...we still find time to laugh..it's cool.
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Tiffany - the crazy curls are something to deal with......I had straight thick hair, with a lot of body. Now I have Shirley Temple curly hair that is very thick. I decided to keep the curly look, but learn to work the curl. The hairdresser evened out my hair, then she thinned it out and showed me how to handle my curls. It also required switching from products meant for straight hair to curly hair and learning that the blow dryer is only used for a short time. My pictures is outdated by 4 months - I really need to step in front of a camera. But I have to say I like the curls and it really is easy. The back is working it's way down the nape of my neck, I can actually tuck hair behind my ears and the top falls nicely over my forehead. Now I just need to work up the nerve to add highlights again.
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I'm taking my poodle head for color on Thurs. I wore my hair short 20 years ago, but I've never been curly before, and I'm not fond of the grey/brown mix of colors this has turned into. I wouldn't mind short if I could spike it.
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My hair has come back with a wild wave on top due to ginormous cowlicks on either side of center. It's pixie cut short, but kinda looks like that Gwen Stefani faux-hawk/curl thing on top. It's a really nice dark grey with silvery highlights. If I'd known my hair was this color, I might have stopped dyeing it a decade or so ago! I really hope it stays like this and I'll keep it chopped short - I can't believe how many compliments I've gotten since I ditched the scarves. It cracks me up that people think it's a 'do and I'm doing absolutely nothing to it!
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tnbcRuth: From what I have heard from other tnbc gals, some sort of Taxotere, Taxol, etc is the one main chem that is necessary to kill our kind of cancer. Yes, there are lots of side effects, but from what I have heard, usually Adrimiacin is the worse of the three: ACT. sorry, I have a friend who refused to finish and follow through with all of her chemo and she has mets and I get scared for other people. I did 6 weeks of Taxotere/Cytoxan, and from what I understand it's no where near as harsh as starting with the A. The worse side effect for me has been the chemo brain, but I think that's a given with all of the chemos. Is there a specific side effect that you are concerned with? I did alot of alternative stuff to combat the harsh chemicals and would be more then happy to share, if you are interested. Hope I am not intruding, as I know it's a very personal decision and not my call to make. I just get very atttached to all of you here on BCO. Hugs.
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Thanks Titan and Jenn3 - and everyone - for your support !
Its 2:30 in the morning and my constipation and decided to change to diarreaha. Simply put I have one sore butt!. Of course the addition of heartburn is the cherry on top. Ill probably be working from home again tomorrow, can't sleep now and will be a mess again in the morning. Watching Fraser reruns....(((HUGS))
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riley- my hair is doing exactly the same as yours! I could have wrtitten your post.
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barbbasile: sorry you are having such troubles! At least your job lets you work from home so you can get additional rest as you need it.
riley: I have cowlicks beyond aything I have ever experienced before. Add the 100+ degree high humidity weather we are having in Los Angeles, and not even the Straight cream can save me. It's a bit too long now to just slick it, but again when I try and blow dry it, even on cold, it's just one frizzy mass of I don't know what. Crazy chemo hair. Sigh!!!
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Hair hair hair. Yep - mine is coming in too, very nicely and dark thank goodness. I've always had superfine and superstraight hair and it's coming back with some SASS. I kinda like it. I do find myself staring (in the most girl-crush way) at Jamie Lee Curtis whenever she comes on tv now. She can ROCK a short haircut. I sometimes venture topless now to the grocery store or around just with friend (an aside: but not to work yet.... most everyone at work outside HR still doesn't know... shows you how much people do not notice about others. Hmm, there's a lesson there). ANYWAY... (leftover chemo fog tangents) people keep commenting on how nice my head looks and how they like my supershort do. It's disturbing how many people think they have 'lumpy' heads, and willingly share that with you.
I too like how we can throw out any old crazy random thing out here. And I like it's a TN thread. I finished with chemo but I read through the ones that are going through it now and feel for you. I'm only a few months out and wouldn't have made it through (as well as I did... still SOMEWHAT sane) -- if I didn't have this and my chemo thread sisters to rely on, because every goofy crazy off the wall SE that I thought I was having, someone else already had. There's some comfort in that, and being able to VENT.
Wishing everyone a great SE-free day!
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Swiftbird..sass hey? I think that may be a common trait among tn's...I think we all have alot of sass...hair and everywhere else!
I kinda told this guy above me off at work today...dang..he is not doing his job...he turned a little red when I was done with him..it felt good..I'm DONE with being meek..that is not me at all...and especially not NOW...I feel like I have been through enough s**t..
Call me Thelma or Louise or whatever...it was kinda fun..!
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WAY TO GO TITAN!!! I feel the same way I have learned my lesson life is too short to sit back and be someones door mat!
barbabasile- I am so sorry I remember being a blister from one end to the other ugh! I actually went and found my sitz bath they gave me after I had my daughter and used it to soothe the blisters. It seemed to help. Stay hydrated babe!
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Oh yeah Tiffany..I remember those sitz baths from having children..heavenly! Dang it but they made me go home!
Barbasile..I see a sitz bath in your future...do it!
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Barbbasile - it will get better, although I know right now it sure doesn't feel like it. I used to call the constipation "cactus butt" because that's what it felt like. Then after those cactus needles tore me up the loosey goosies started. In all honesty, sometime soaking in a warm bath with epsom salts helped soothe the area. I know it's disgusting to talk about and with anyone else or in another form it is probably TMI, but that's what we're here for.....to help each other out. I hope you feel better soon.
Titan - I'm with you, I have found that I speak up more and say things I normally wouldn't say. Two months ago while car shopping I was at a dealership and the salesman didn't seem to be taking me seriously and wasn't paying attention, I looked him straight dead in the eye and said "Joe you don't seem like you want to sell a car, should I leave?". He seemed mortified, apologized and was much, much nicer and attentive. He still didn't make the sale due to some other customer service issues I noticed while sitting in the dealership, but the "old" me would have just walked away and not said a thing. It actually felt liberating. I wasn't rude, but I said what I felt.
We're having beautiful weather down here, hope the same is happening for all of you!!!
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Hi Gals - Thank you all so much for your encourging posts. Today I was so hoping to be better and able to actually go into my office. I awoke to a bloddy nose and then the hersey squirts started again..I was in tears. I can't go anywhere without a diaper for fear of a sudden accident. I am getting a stiz bath and will try it today. I feel humiliatied and depressed..BUT I WILL NOT GIVE UP! Next week I start on Taxol. I know its been mentioned about the SE's from Taxol before, but I was on AC and dealing with those. Ok, so can you give me an idea of what to expect and what I should do? I am scared again...(((hugs))
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Barbbasile: I did weekly taxol and found it very tolerable. I had head-ache, very mild back ache now and again, but a tylenol would take care of it. Fingernails and toenails suffered, went brown and thickened and were a bit sore to press down on; I lost a few toenails 2 months after I finished. Had a very mild bloody nose a few times. Some abdominal gas. Some dry skin and redness and itchiness on my hands towards the end. No neuropathy to speak of. I generally felt very well and went about my everyday business. Best of all, by week 6 my hair started growing back. Sending you good wishes that you'll do fine too!0
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I wish I had never, NEVER told my sister about chemo brain because now any mistake I make if it's wrong day of the week, forget someones name, call her when she told me she'd be gone, forget to pick something up at the store, the littlest, simpleist thing, SHE MAKES ISSUE and laughs and says, "oh Juanita, you are having a hard time today aren't you." She's made more mistakes in her lifetime then I ever have. Now on top of fighting cancer and all the se's from chemo, I have to try and stay on top of things when dealing with her because she is going to pounce in attack if I make a tiny mistake that anyone at any time, chemo or not, can make!! And the bad thing is, she's retired and I have to rely on her to take me to chemo (my husband has to work but I'm arranging it that chemo is done afternoons so he can pick me up when he gets off work, so she only has to take me then) and later she will have to help take me to those 33 radiation treatments 5 days a week as that is an hour or so away for me to drive. Grrrrrrrr. I don't like being dependent on people especially her. I've never let her be real involved in my life and now, another thing cancer has caused. I hate this miserable disease and I'm kind of bummed out today. Have my 2nd AC tomorrow and she is taking me. Whoop!!!!!!!.
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Barbbasile: I am sorry you have felt so bad with AC. I had a lot of the same digestive problems with AC, heartburn, etc. I havn't had any of those problems with Taxol. For me, Taxol has been easier. I have some aches and pains, and my fingernails look weird. I havn't had too much neuropathy. I have more energy than before.
I hope you will find Taxol easier also. It sounds like you are almost finished with AC. Hang in there!
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Barbasille: If you do ice baths for the hands and feet, you can save your fingernails--I wish someone told me this prior to doing chemo. Glad the AC is almost behind you! I was a recluse for the last year to to all of the unpleasant SE's from gas, bloating, burping, farting, literally turning green--it's no fun but it doesdo it's job and you are almost to the other side. Hang in there!
Jwaterlilly: The American Cancer Society and many hospitals can provide free transportation for cancer patients! Just because you have cancer doesn't mean you have to have people around that you don't care for. It's worth a phone call. I know there are some people who think that maybe this is the oportunity to work through your stuff with someone, but I have found when it comes to family, friends, co-workers, etc. There are those who love you and those who don't and it's rare that that ever changes with time or illness. You need people who are in your court and support you. Good luck with your treatments.
Titan: Oh my, girl! I know what you mean--I won't take sh*t from anyone anymore, yet I do have more compassion. I have less patience with people who don't pull their weight though.
Swiftbird: You crack me up! Love your spirit!
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barbasile~ I second the recc for epsom salt baths. I had booty issues too. Thos baths helped a lot. Taxol is WAAAAAAAAY easier than AC. I did 12 weekly treatments. I was one of the few who was queasy but I didn't vomit (as opossed to AC where I puked 12+ times a day for 72 hrs post-tx).
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MBJ, please tell me more about rthe ice baths for hands and feet as I will be doing Taxol next and want to avoid those nail problems. How often each day and for how long in the water? Thanks.
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Jwaterlily: I didn't do them because I didn't know, but I am sure there are others on here that have used them--Sugar?
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What does SE mean. I'm sure I should know but I can't bring it consciousness....
The hershey squirt and other silly names for our intestinal problems made me laught so hard! Sorry, but as a very 'proper' person, its so funny to know others are enduring the same rediculous misery we have no choice in.
Is my hair all going to fall out again with just Taxol? With just the A/C, it is staying in. Mbj, no prob....I just haven't made my final decision yet. IF I can line up back surgery before the end of the year, I want to do that first. Cancer free or not, with a bad back, there is no quality of life for me. I need 3 disc replacements and ins is paying at 100% right now
AND private disability would just continue. Oh what a blessing the cancer has been....hahahahahahahahah 
Regarding fingernails, I lost 9 of 10...but this time I took in a huge 'cold pack' and wrapped it around my fingertips during chemo. 5 coats of toenail polish have kept those nails in check. I don't want to know how they look underneath~
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jwtr: Don't assume you'll need a driver to rads. I took myself every day. For me, it wasn't a long distance, but I was also driving back and forth to a nearby city an hour away several times a week. Everyone is different, and you may not feel really fatigued until the end of rads and after. And to your sister, I think I would reply, "at least I have an excuse, what's yours?"
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Jwatrlily, I did the same thing with ice packs on my hands and feet for all four of my taxol treatments. I kept all of my nails, didn't even have any loosening or lifting. I would swear by it! I would bring my own ice from home in baggies. The chemo nurses helped me keep them in place with towels. It is uncomfortable to sit there during the entire infusion with these on, but well worth it!!
Cindy
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Barbbasile, I've just finished 10 of 12 weekly Taxols and found it much easier than AC, thank goodness. I've been tired some, and had some sore toes but that is all. I do take daily Vit B6 on the recommendation of my oncologist, and I take L-Glutamine on the recommendation of some posts on this site. I don't know if either have helped, but my SE's have been minor. Electrolytes have helped with night cramps in my legs (Onc. recommended this.) Accupuncture does help with the toe pain.
Yesterday I was "unblinded" from my clinical trial, and found I had been taking Avastin with the other chemo. I had thought so because I had so much more fatique on the Avastin/placebo weeks. I hope the Avastin is helpful.
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Yes, my finger and toe nail were put on ice during each Taxotere infusion and I didn't have any trouble whatsoever with my nails. I would highly recommend putting them on ice for ther enture duration of Taxotere infusion. Actually, I used clear nail strengthener, too, and my nails were never better because I took such good care of them at the time.
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Today's fare:
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Mity..glad you got the Avastin! I'm not doing any trials..not that I haven't asked about them...I read on a thread here that Tn's need to take chemo for life..not sure about that..all I know is that I would absolutely dread having chemo of any type again I would do it if I thought it would help..
That is something I don't understand..maybe someone can help me..you have your surgery, your chemo, your rads..and then that is it..why couldn't we have some ac or taxol maybe once or twice a year..maybe as a preventive..if chemo only stays around for one year..well..what happens after that...probably a stupid question..but curious.
As far as nail loss..I lost one toenail..my little toe..that was it...my fingernails went crazy..and they still are..and that's another thing...I regard fingernails as a sign of health...if they start breaking off I think I will start freaking.
Oh..Barb..I was talking to my DD on the phone and one of her roomates has diarhea and I said..oh the Hershey squirts huh? Needless to say..I'm a disgusting mom...funny stuff.
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Mity..glad you got the Avastin! I'm not doing any trials..not that I haven't asked about them...I read on a thread here that Tn's need to take chemo for life..not sure about that..all I know is that I would absolutely dread having chemo of any type again I would do it if I thought it would help..
That is something I don't understand..maybe someone can help me..you have your surgery, your chemo, your rads..and then that is it..why couldn't we have some ac or taxol maybe once or twice a year..maybe as a preventive..if chemo only stays around for one year..well..what happens after that...probably a stupid question..but curious.
As far as nail loss..I lost one toenail..my little toe..that was it...my fingernails went crazy..and they still are..and that's another thing...I regard fingernails as a sign of health...if they start breaking off I think I will start freaking.
Oh..Barb..I was talking to my DD on the phone and one of her roomates has diarhea and I said..oh the Hershey squirts huh? Needless to say..I'm a disgusting mom...funny stuff.
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