Calling all TNs
Comments
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Hello ladies. I haven't posted in a while, though I read regularly. The group keeps growing!! I had my LAST 3 monthly oncologist appointment yesterday. I have "graduated" to 6 monthly appointments. Another step in the right direction.
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Thanks, Teka. She's 9 weeks old and I've had her a week. She was a feral rescue and has already been spayed, tested for FIV and feline leukemia, and had her first set of shots. And even with that rough start, she's so affectionate, she just crawls into your lap and purrs. She won over my 7 year-old boy kitty, Imp, almost immediately. They sleep together and he cleans and grooms her just like a mama cat. LOL
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Gillyone: Congratulations!!!
Titan: Lol, he grew a mustache for a Roaring 20's New Years Party--looking pretty debonaire, no?
Riley: Your kitten looks like my crazy black kitty who is now 15 year old. I remember when I could hold her in the palm of my hand. So, so cute! Mine was a rescue, too!
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hi girls,
hey has anyone gotten really curly hair after the chemo treatments were done ?? Im so curly its rediculous..... I had curly hair as a child but notnthis curly.
How is everyone doing ???? i havent been here in a while.......
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I wouldn't call my hair curly, but it definitely has waves, bounce, and body. Since my hair has been stick-straight all my life, I really like it now and hope it doesn't go back to straight.
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My hair is not Shirley Temple Curly but it is much coarser. The parts that have been trimmed 5 or 6 times are really nice, the bangs have taken so long to grow are really the only frizzy parts that I have but that is because they have not been cut. They have grown much slower than the rest of my hair. All in all, I am very happy to have a nice full head of hair once again.
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sweetjolieblon,
the same thing sort of happened to me. I am brca1 pos so got mammo and MRI ev 6 months. mammo was ok, then 6 months later MRI showed something. biopsy said it was DCIS. I was relieved and researched and planned BMX and recon. unfortunately, the biopsy was innacurate. after surgery they found that right next to the biposy area was 0.5 IDC- TN.
I have read up a lot on TN and articles use words like "agressive" "poor prognosis" and it is scary. however, it is more complicated than that. TN has been underresearched until recently, so we know less about it. TN tends to get discovered at a larger size often with spread hence the worse prognosis. Within TN are 5 or 6 types of different cell types/cancers that behave differently - basal-like etc. They are not able to predict at this point which will respond best to which treatment. There is no oncotype score.
I try to remind myself that the numbers are in our favor, even for more advanced than stage I. And for stage 1 "poor prognosis" in one study corresponded to 15% recurrence at 10 years compared to 7% for hormone positive, that's still 85% that are recurrence-free and NONE got chemotherapy! I try to remind myself of these things.
True also that on a personal level, it's either 0% or 100% recurrence and all we can do is put all the chances on our side to tip it towards 0%.
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Thanks for the postive words of encouragement everyone. I try to keep busy. I am currently looking for another job. I want a challenge and plus I gotta get the kids future going.
I did notice while I was on vaction that my legs stop having that restless leg feeling. SO GLAD.
Question: Hotflashes for the ones that are 2 years out do you still have them?? I can take the tired legs over the hotflashes.
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I am in pain and so depressed about this back spasm sh*t. Can't do anything, can barely type. Pain is exhausting. Ortho appt this afternoon...compression fracture? Bone Mets? I don't know what to expect, except I've never had anyhting like this before in my life. Nothing I do gives me any relief. I'm feeling really sorrow for myself this morning. I want to swim, sail, and go to the beach... here I sit, unable to move my body without excruciating pain. This s*cks so bad. Never knew how much you use your back muscles. F*ck.
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HeidiToo, I'm so sorry you are in so much pain, my husband has a horrible back, lots of problems. The only thing I can suggest is taking Anti-Imflammatory pills like ibuphropen and doing the heat/ice every 20 min. I'm sure your doctor will give you some nice pain meds too. I bet you'll be back to yourself in a week.
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Heidi - I'm so sorry you're in pain! I hope the doc is able to get you relief FAST!!!
Fighter - My hot flashes finally stopped when I got my period back, 6 months after final treatment. Thank God because they were one of the worst side effects for me!!
Monisch - My hair is crazy curly too. I can stand it, I have to put so much product in it just to keep it "tamed"! The growing out period is not going to be pretty LOL
MBJ - Definitely debonair!
Gillyone - Congratulations on "graduating", has to be a nice feeling.
Suze - we wanna see your hair! Enjoy NYC
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Heidi, I am so very sorry to hear you are in such pain. I've had back problems since I was 17 years old, and there are days where moving brings tears to my eyes, it is a horrible thing. Chronic pain is worse, you can't escape it and the depression sets in. I would say don't jump to mets, but I know those are hollow words that offer no comfort. I hope you can get some relief from the doctor this afternoon - even if it is in the form of a stronger pain medication - and that with rest it eases up and you can get back to the things you enjoy. Thinking of you.
Fighter, I get hot flashes still, but I'm just 5 months out. I hate them, but they are mostly at night. It isn't just the hot that gets me, it is the feeling of my head "filling up," the slight disorientation, ugh. Hate them. I hope someone can help with ideas for you. And I hope you find another job soon - it is tough sometimes to make that leap - so good for you!!
Titan, thank you *heart.*
Riley, that kitty is just amazingly adorable! What a great way to help you move past all this crap, rescuing a dear little soul. I hope she brings you oodles of pleasure :-).
MBJ, I'll try and post a picture - but I don't know how!! I'll have my DH help me next week :-).
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I didn't get any curl or wave in my hair, weird.
Last day of rads today - yayyy!!!
I am so excited - DH scored tickets to "Wicked" in NYC on Saturday. I've been really wanting to get to the show, and it is a matinee so I don't have to worry about being all fancy schmancy (not that many do that anymore anyway.)
I also want to post an amazing story about my BFF - she is just the most wonderful person. She had trained for a relay triatholon - swimming - because she wanted to get over her fear of swimming in the lake. She hates deep, dark, murky water, and wanted to improve as a swimmer. So she dedicated her swim to me and her two other friends who had BC. Unfortunately, she couldn't do it, she panicked and had to be pulled from the water. She felt so horrible, really beating up herself. Well, last weekend at the lake, she was swimming in the evening close to shore, and heard a commotion on the beach - two little boys (10 and 7) were over 50 yards out and really struggling with the older one trying to keep his younger brother afloat. Without even thinking, she swam out there, she said the little one had about another minute before he went under for good, and with the murky water, would have been lost. She saved that little boy's life. We all told her she didn't train for the triatholon - she trained for the most important thing she could ever do. I am so very very proud of her. She is just the best. Anyway, just wanted to share.
Have a great day everyone - hot as all heck here in the northeast - someone send some cool breezes my way!!
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Today is my cancerversary...
7/7/09 dx Stage 2 TN BRCA1 just 6 days after my 28th birthday & 3 days before the ultrasound that told me I was pregnant with a little girl (20 weeks); 20 years earlier than I thought I'd get it...
7/16/09 first visit to MDAnderson in TX (900 miles from home)
7/31/09 began FAC chemotherapy at home (in KY)
11/26/09 delivered a healthy little girl (no induction or c-section)
12/10/10 began taxanes
1/16/10 discontinued taxanes due to neuropathy (Taxol) and allergic reaction (Taxotere)
2/19/10 BMX w/ immediate expander reconstruction (too thin for flaps) in TX
7/3/10 rejected for exchange/bilateral ooph due to low counts in TX
8/31/10 bilateral ooph w/ serious complications (4 units of blood transfused); exchange cancelled in TX
10/2/10 emergency hyst due to abscess at ooph origin points on uterus in KY
2/17/11 exchange surgery in INI am 5th generation that we know of to be afflicted with "female" cancer. My mother & I are the only survivors & the only ones tested for the BRCA mutations. We have a deletion of exon 17 on BRCA1. My mom was 48 at her dx & I was 28. My dx was made during an excisional biopsy with no anesthetic due to concerns for the baby.
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Heidi - Hope your pain goes away after the doc. Sorry to hear that you are suffering. To all the ladies there - continue posting , I enjoy reading and ploughing through this forum takes my mind off thinking about what I have in me.
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Heidi: I have had horrible back pain all of my life it seems so I am sorry you are in pain! Sometimes just moving the wrong way or a cough can throw things out of alignment. I never got any relief from an Ortho (though massage can help) but if you have knowledge of a really good chiro, they can be a life saver. I am usually sore afterwards, but I can finally relax and sleep after an adjustment. Gentle hugs to you!
Suze: Congrats on being done!!! Thank you for sharing your friend's amazing story!
biology: I come from a family where there isn't any BC but I am glad that both you and your mom have survived this! Hugs!!
Fighter: The crazy thing about my "hot" flashes is that my body temp is always really low and a "hot" flash is only at 98.3F making me drenched.
monisch: In my picture my hair is straight but that is lots and lots of product (Marc Anthony Straight from RiteAide is awesome) and a 1" flat iron otherwise I am Shirley Temple and then some. Seriously, I could have a loose afro with all of these curls. Never seen anything like it. Prior to chemo I had wavy hair.
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I'm exhausted. Been out all afternoon seeing doctors. Had an Xray (OK) and an MRI (results tomorrow since the ortho guy doesn't like the radiologist steeling his thunder, I guess). Anyway, I guess I'll be OK but I've never had to deal with this type of debilitating pain and it has left me *bushed*. Every move I make *hurts* dammit. Use to see a chiro (stopped when he could no longer adjust my neck) and still get regular massage. Hubby just went out to fill my pain meds so I hope to be in LalaLand soon.
It's cost me three days of teaching with the Nature Center and who knows when I'll be scurrying about on our sailboat. Small potatoes by many other's standards but I am such a lousy patient. I have no patience for being laid up, and this old ladie's body is beginning to piss me off.
Sorry for the gripes; I almost feel guilty when I compare myself to what some of you are dealing with. But, pain is pain and it stinks in whatever form it takes. Rant over...I think.
Thanks for listening.
PS- I started getting hot flashes again during (and continuing after) chemo also. Thought I was done with them, but obviously no such luck.
My chemo curls have also gone by the wayside and I'm back to my flat top look.
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I start chemo tomorrow TC...am anxious but trying to be busy. My husband has ot work so going with 2 chemo buddies....any suggestions on the perfect thing to bring....asked about penguin caps..my ncoloigst did not know about them and htis is BOSTON!!!!
Riley: I love your kitty.
Gillyone: Congratulations!!!
Heidi...so sorry..pain is so lousy...hope meds help.
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sweetjolieblon....I am going to start TC tomorrow ....some days I cna't stand it...other days I am better...haven't slept well except for one night since the diagnosis...got to take the steroids tonight...ah...we all are in this together and I wish we all were someplace happier.
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biology -congratulations!
painting - good luck tomorrow. Chemo is doable!!!
(((Heidi)))
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Heidi, I'm sorry you're not feeling well. I hope tomorrow's a better day.
Suze, what a fantastic story! It gave me chills. How wonderful that she was there and trained for her big moment. Even if it wasn't the moment she thought it was going to be!
Congrats to everyone finishing up treatment, and hope everyone still in treatment have no bad SEs.
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Painting- some things I always took to chemo: Hard candy to suck on to disguise the nasty taste when they flush your port (if you have one!). My reading glasses- the steroids messed with my eyes. A nice soft blanket- they usually have heated blankets, but the heat wears off and the blankets weren't very heavy. Granted it's summer ,but it is always cold in the infusion room! Some suggest sucking on ice chips during infusion to help prevent mouth sores. I did not do that, but religiously used Biotene toothpaste and mouth rinse several times a day and never got a mouth sore.
I hope all goes smoothly for you and wishing you mild SEs!
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Painting..good luck tomorrow! We will be with you in the infusion room!
Heidi...sucks about your back..doubt that bone mets would come on so quickly...maybe a pinched nerve or something...back pain SUCKS! I hurt my back golfing once (came on a couple of days later)..all I could do was lay there...
Fighter..hot flashes..yes..I still have them somewhat..not like they used to be though...I used to put a wet cloth next to the bed and when I had a hot flash I would spread it out on my stomach..it was kinda of a shock but I went from hot to "chillin" pretty quickly!
Suze..hey "soul"..how you doing..
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Size - have a wonderful time in the city. Loved the story.
Riley- I love Lucy.
Gill - Woo Hoo! I'm still trying to work my way to one month - always something.
Monish - my hair is naturally curly and I wish mine would come back straight! My girlfriend had hers come in curly, then it returned to it's natural texture.
Fighter - glad your legs have returned to normal, I went into chemopause at 43, seven years ago. I still have occasional hot flashes.
Heidi - Back pain is horrible, and for an active person, pure agony. Hope you are sailing soon.
Painting - I took a Snuggie. (then I'd picture myself in a TV ad) "with it's easy port access and hands free design, the Snuggie is perfect for chilly chemo rooms".
Biology - Happy Anniversary!
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Off to set out 11 year old's swimsuit for Culinary camp tomorrow. They blew up the oven, so they are going canoeing instead!0 -
Hi Tatyana- I was 47 when I was diagnosed.
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Thank you all for the advice, kind words, etc. We spent the past two days in a small room waiting to speak with members of our team. We are having scans done in a week with a follow-up consult with the oncologist. I appreciate all the time the Drs spent with us and they knowledge of recent findings in the field.
Despite the one positive node, our Docs are seriously considering skipping a node dissection because of the results of the recent Z11 study. Additionally, the radiologist is modifying her approach after hearing the results of a study presented at ASCO in Chicago. Basically, the presenters found radiation to breast tissue and nodes under arm and broncho... nodes actually improved PFS.
Our oncologist is considering a less aggressive chemo because of some pre-existing nerve issues. I'm a bit concerned about that possibility because I want to hit this think with all we can while we have a chance.
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Heidi -- I hope you are feeling better soon. Never thought I could say, "I've experienced something similar" on this board, but I have ruptured discs in my back on three occasions, the last so badly I could not stand. If it is a pinched nerve, the pain will subside with patience. The key to recovery for me was to spend a weekend on my stomach resting before beginning light PT. Within a couple of weeks, I was moving around well enough to intensify the PT and work on core strength.0
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OBXK - "Riley- I love Lucy"
LOL, I hadn't thought of that!
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Hello Gillyone,
I just wanted to say well done on going from three monthly to six monthly appointments. Keep up the good work.
Best Wishes, Sylvia.
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Quick question: Does anyone know what the average Taxotere dose is? On my trial, they were testing the 'efficacy of dosage' and I got the info today that I got 100mg-M2. Is that what put me in the hospital for 8 days?
Quick Gripe: (Heidi, don't read this) I must have hurt my back 6 years ago and it still hurts like a bitch! I've seen 100's of doctors, treatments of every kind and back surgery. Nothing has helped. I went from a golfer/sailor/runner to a fat miserable person. Pain pills for 2 years keep me functioning, but not near the level of a normal life. Is this really how its supposed to be? And 9 months later, the SE's remain. Nuts. just nuts.
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Hey Ladies,
It has been awhile. Chemo is taking its toll on me. I am on the AC and one more to go and then off to the Taxol........I am scared to death of the Taxol. Any words of wisdom to help me. I have tried not to come here because I have been so sick and down. I do not regret my surgical decision but now with the hair being gone, and no energy I feel like a useless, one boobed balded headed woman. I have no problem with the breast being gone when I feel good. The chemo has TORE my stomach to pieces. I have meds but wow they are just as bad. I feel like I can't breath and some is anxiety some is not. I have ask for another echo but the doc wants me to try some meds for other things first as he does not feel it is the heart. Ladies I know that most of this is temporary but I can't get my mind wrapped on that. I can't even wash my own dishes. By the time I get my umpth up to do it, I simply don't want too. I will be ok and then the next thing I know I am a weeping willow with no stopping it and then I get to thinking, is this going to last forever, is it worth it. I don't want to die but I swear it feels like the cure (hoping) is going to kill me first. I know people mean well when they say things are going to be ok, it won't last forever, but I don't have to tell you all that some of this stuff, feelings and etc. They will last forever. I thought it would be great not to have a period, but I never thought I would still cramp have breast pain and all the emotions (which is doubled now) but not get the relief. I CAN NOT STAND THIS!!!I have not read the other post (not that I don't have time) just don't do it. I am on the computer almost all day playing on my farms to take away the loneliness in my day, but when it comes to reading I just simply don't want too. I want to pray but I don't, I want to do alot of things but I just don't. I simply don't know what to do with myself. Thank you for being here to let me vent......I just don't like to bring others down, but I need to talk.
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