Calling all TNs
Comments
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Hi Ladies.
Heidi I agree with your way on thinking. I don't get depressed. I just enjoy life to the fullest everyday. My glass is always full.
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I'm coming up on my one-year anniversary of diagnosis and am finding myself feeling anxious for no particular reason other than that it has been a year. I thought I was feeling better, but find myself checking my scar lines now (no reconstruction). Elizabeth Edward's death made me afraid that I might have a recurrence, too. I'm sure I'll feel better after I'm past this hurdle, but it's difficult for me right now.
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rily - as per my point above, I had my onc appt. today. My doctor told me that I've now reached a milestone because I finished chemo almost one year ago. Hang in there!
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Thanks, Sugar! You guys are my support group!
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Sugar..yay on the good appt...I go 2 weeks from today but I'm going to move it to next week cause my dh and I are going gambling on the 27th...ha ha some things are just more important eh? I am also have the Vit D blood test done...6 mos. ago I was at 58..hoping to be in the 60's this time..or maybe higher.
Is anyone's breasts (those that still have them) getting bigger? I swear both of mine are expanding...maybe it is from constantly feeling them up... You all know about the old joke about the toilet paper don't you?
Hey Riley (still love that avatar)...very normal to be freaking out at one year...I felt that at one year..ok..the chemo is probably out of my system now..what it helping me now?? I guess the best thing is to just try to live as normal as possible...Exercise really seems to help us TN'S...do what you can....maybe we can't control a possible mets...but you know what..eating right and exercising can't hurt....it certainly makes me feel better...
I'm freaking a little also..2 years ago on 1/18/09 I rolled over in bed and not sure how..there was a lump there..I just want to get through 1/18//11...Two years ago I had a freaking tumor growing inside of me...I hate January...On a good note though..on 1/20 I will be 22 months out...
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22 months out - and that's a good thing, Titan. I am right there with you~
Linda
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Hi riley702
Just today I also found out that I am weakly progesterone positive 5% (not 2% as was previously told). A re-test is still in the works, but the prior addendum reads at 5%. At what percentage can one become hormone positive? I still consider myself a 99% TN, but was a little happier that maybe the aridimex I have been prescribed is worth taking.
I finished Taxol on 28th December, so it has been 16 days today. Has anyone experienced a strange sort of sensation on their skin 1.5 - 2 weeks after treatment? I can't even explain well, but it feels like every now and then, I have these feelings on my skin in areas, where the goosepumps or something gets activated. The nurse said that it is not neuropathy as that will only be on fingers and feet, toes, etc. She said it could be my hormones, which is scary. It is as if my body is defending itself from something. I am wondering - since the chemo drugs works on our skin, hair, nails, etc., maybe the skin layers are getting back to normal or something. Has anyone experienced such strange sensations? It happens on my calves, shoulders, arms several times during the day.
Riley - are you taking any anti-hormone therapy for your weakly positive ER+?
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Yes. you are Linda!..I like having you right there with me...feels good..oh..my real name is Joyce by the way...I am Titan because that is our high school mascot..and well..it just seemed to fit.
Lovelyface..I wish I could tell you that I felt those skin sensations but I really don't remember...basically the Taxol se's I had were achy legs...if I sat too long in one spot and then tried to get up I felt like an 85 year old woman..I had to walk it off...it took several months to get over that. I sometimes wonder if my poor brain has blanked that time out of my memory...
Oh yeah..I still haven't got my final path report..maybe I should...just to check out that er-pr stuff...I dunno..I'm still chicken...what difference does it make now? Maybe make me freak out more then I already do?
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Lovelyface, I started my 5 years of Tamoxifen on Jan. 1. My medical oncologist was a bit dismissive of my questions about being weakly positive, saying "if you're positive, you're positive, and should take it (the Tamoxifen)." I talked it over with my surgeon, because he's easier to talk to, and he said that generally, tumors that are between 3-5% hormone-receptor positive do benefit enough from the Tamoxifen to outweigh the SEs, and urged me to go ahead and take it. He said if I have bad SEs, I could decide if it was worth it to me to keep taking it. So far, I haven't noticed any SEs.
It IS a little odd that my surgeon is the warm, fuzzy one, and my medical onc is great but can be a bit prickly about being questioned.
ETA: I still consider myself a TN, too!
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Riley: My one year mark hit me really hard and the holidays were not much better. Seems to be very common here and we all seem to go through it. Hang in there and I am glad you are coming on the boards to share.
Sugar: Glad you had a good appointment and are doing well.
Titan: 22 months--yay for you!!! I never got my final path report either. Guess one of these days I will get around to it.
Lovelyface: I don't remember either. Maybe it's your hair follicles about to sprout?!
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I got my final path report when I went for my surgical follow-up. Nothing really new in it... just a more descriptive analysis of what I already knew.
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Sorry for the repeat but what is the information on the "free scarf". I have a friend just diagnosed with BC and I told her about it. I would like to send her the info.
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I got the scarf information. I used the search funtion on the website and found it. Should have done that before I posted my last post
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Oh good Swanny becase I can never remember anything since chemo, lol!
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Me too, I am blank most of the time. I do have chemo brain, as if menopause wasn't enough to destroy my memory.
MBJ - maybe you are right, maybe it is the hair follicles in the skin which is trying to sprout, that's why I have those sensations.
riley702 - How nice that you started your Tamoxifen on Jan 1st. This way it will be so easy to remember when you count your years - every new year will feel good as the old one passes.
I will be starting Aridimex pretty soon. I had heard that there was no generic, but I just picked mine from CVS and there was a generic for this. I just paid my usual $5 copy. I was very happy about it as I had expected to pay large sums of money for this prescription.
I just came back from doing a CBC, Oncology panel including tumor markers. I am a little nervous what if those tumor markers are off, of the baseline? I heard these tests are not really 100% true indicators, and that they could be off for other reasons as well. I think I will get the results via mail next week sometime.
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Oh yeah Lovelyface! Chemo AND menopause! My daughter told me that I was a B**t**h... I can't remember being that way...but then again if I was..well..I think I had a couple of pretty good reasons.
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Is this the one you meant?http://www.franceluxe.com/i/goodwishesscarves/GoodWishesScarves.html
Becky
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Becky, That was it. Thank you.
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Lovelyface: You will start growing hair in the places you don't want it first before growing hair on your head, so I am thinking this must be it. You are on your way! I am glad that the new drug won't be a financial burdern. From what I understand about the cancer markers they are just one small way to try and detect cacer and they aren't very reliable--Better to keep track of how you are feeling,making sure no other lumps appear, and keeping very in tune with what your body is doing. They ran all sorts of test on me prior to me finding a lump and I showed nothing at all!
titan: Chemopause/menopause--call it what you want it just stinks!
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MBJ...it does stink!
Lovelyface..MBJ is so right about the hair thing. I had it in some weird places too...You will probably get some peach fuzz on your head pretty soon...It so nice seeing there.
On another note, I called the onc's office to change my appt..couldn't get me in until Valentines day..I asked them if that was OK since I'm supposed to be seen every 3 months...They said that 2 weeks over was just fine and that they had to be able to fit in all the chemo patients first..I just sat there for a minute..thinking..oh..guess I'm not a chemo patient anymore...GOOD STUFF!
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congrats on your good checkup Sugar...I had my ultrasound and mammo. and they were good. The lump on my scar is either fat or fluid, BS took a little out today and will send if for analysis but thinks it looks ok. I have developed lymphedema... not too bad, but it is there. I have an app't next month with and LE therapist.... the gift that keeps on giving.... geeeez
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Good news for you too Kelben! I still get nervous going to the onc...I'm always afraid that they are going to find something...I DO listen to my body and I think everything is Ok but you never know...Since my diagnosis I have to be busy, busy all the time..if I have time on my hands I start thinking too much...or just get on here and blab away! 0
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Teka..I think high BP is a side effect of cancer! Just walking into the chemo facility makes my BP go up..They ask..is this normal..I would tell them that it is because I'm here and that I don't like being here! My DH would just kinda pat me on the head (bald) and say..now...honey..they are trying to help you...Poor man..he really was/is a good guy...he was pretty good with me during that awful time...We are starting to annoy each other somewhat now...I think that is a good thing..
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My blood pressure is always in a normal to optimal rage but yesterday I checked it myself at the grocery store on my way home from my checkup. It was very high...higher than I've ever seen. At the end of getting my groceries, I stopped over to the pharmacy and checked it again. It was still elevated but not as high. When I was pregnant, the doctor wrote "white coat" on my file. My BP has a tendency to go up when it comes to checkups and stuff. Nervous nelly here!
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Throwing in my 2 cents in just when u think u know everything the ball drops.
I was told TC (taxtoxere(?) and cyctoxin) was the best thing going for us TN's. I am just confused because I don't see all of us taking the same amount of treatment some take 4 and others take 6 so it's hard to predict progress.
Onc told me that we will be the first group of TN with the most survivors. So that's something to smile about. Focus on getting to the three yr. mark and re-claim your health! We can do.
sugar77- my heart beats fast everytime I see the DOCTOR now!!
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I was DCIS with 4 treatments
Maybe IDC has 6?
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I had IDC & DCIS both in the same breast, and had a total of 8 treatments, 4 AC/Cytoxin and 4 Taxol.
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4 TC every three weeks for me.
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Mine was invasive and I had four rounds of TC.
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4 x AC and 4 x taxol (DD)
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