Calling all TNs

slcst12

Hi girls!

Sporty99, I'm in PA too...my sister graduated from E-town, so I've been out your way a time or two.  Good luck with starting chemo. I'm keeping fingers crossed for you.

Kelben, keeping fingers crossed for you and your lumps too!

Good luck to all the ladies going for the 10 lbs   I will eventually join you, but not quite yet.

I'm still fairly sore post-surgery. I feel like my whole boob is swollen, does that make sense?  I don't have a follow up until Jan 4th (surgery was Dec 20th) since the BS is on vacation. I still have bandages and just feel like there's a huge boob where my normal boob was supposed to be. Like--how long does this swelling last?  I only had a lumpectomy (small-ish tumor, like 1 cm) and SNB, but it's a strange feeling--like it's hugely swollen.

I don't know when I will start chemo, hope to find out on the 4th. Not looking forward to it at all of course, but I know I can lurk here and get all kinds of valuable info

TifJ

Michelle- ask your Dr. about Ativan. It is an anti-anxiety med. It helps you get to sleep-doesn't always keep me asleep for long periods, but helps you calm down. I don't take it every night, just when I feel i need it.

Lovelyface

Michelle67 - what's your news?  All good?  Yes, do try the ativan (Lorazapam).  I take it every night for sleep these days, since my diagnosis. I am afraid not to take it, as I wouldn't be able to take a sleepless night, just thinking about all this stuff.  So, yes, it sure helps.

Hope all yours worries were for nothing and that it is all good news today.  Praying for you.

mommafluff61

Okay, so tomorrow is my first day of chemo...I'm feeling a bit anxious about all of this. I read that someone said "chemo is like going in (for a treatment) to get the flu!" I have high hopes that I will breeze right thru all of this.

I just got back from my hairdresser...she washed and flat-ironed my hair for the last time for a long time...next appt. will be for a "shave."

 FROZEN PEAS on your finger nails and toe nails??? Anyone else on this thread lose nails or have them turn black? Someone advised using "hard as nails?"

lrr4993...

thanks for the neulasta shot info! My hands and toes are normally cold..wondering if I will really freeze?!?

You guys are the best...

mommafluff61

oops, one more question...

Anti-Nausea meds...doc prescribed promethazine (only 12 pills) doc said to start them the morning of chemo - chemo nurses said to save them for the next day??? After reading about the meds tapering off, I think I should go with the docs advice?!?! Did any of you take this?

Should I ask the Doc for sleep meds tomorrow or wait and see?

TifJ

Ladies,I have an RX for an Emend patch to put behind my ear day before and keep on for 3 days. I get a bag of Aloxi in my pre-meds. I have never thrown up once-no real nausea just a little yucky feeling. I have compazine to take if needed-used once. Definitley as for sleep meds (Ativan)!!!

Last treatment is tomorrow!!!! Yeah!!!

Sugar77

mommafluff - hi, I had my finger and toe nails on ice during each of my Taxotere infusions and never had any problems with my nails whatsoever.  I put a clear nail hardener on them and kept them filed and they looked good (better than they do now...lol). I would highly recommend keeping them cold during the infusion.

Swanny

I would recommend the cold peas for fingers and toes.  I did not use them but wish I would have.  Although my nails turn black or fall off, there are ridges in my nails.  I had chemo on Thursdays at 3 pm and was fine on Friday and Saturday and then started feeling tired and yucky on Sunday.  Mon, Tues, and Weds were the worst for me.  Tired and not wanting to eat.  AC wasn't bad but Taxotere was hard.  I had tons of anti-nausea meds.  Had to take 2 pills day before, day of and day after.  Had a bag before chemo and then had pills to take whenever I wanted if I felt nauseated.  I worked through everything.  My SEs really were not bad and I lost 20 lbs.  Still could lose another 50 lbs but I am happy 20 is gone.  Hope it does not come back since all my tastebuds are back and I am back to my old eating habits.  Happy New Year to ALL. 

Anonymous

Caryn Rose is dying. I just visited her CarePage and read it on another thread. She was one of the first people I communicated with after my diagnosis and was an inspiration & fighter to the last. This sickens me.

moe0279

can anyone tell me the difference between taxotere and taxol...

I don't know Caryn Rose, but im praying for her and her family... 

Anonymous

Taxol (paclitaxel) and Taxotere (docetaxel) are both from the same family of medications - the taxanes.  Both of these show a high level of activity when used as single agents in metastatic breast cancer.
In reviews of reported studies, when compared with standard therapies Taxotere looks to be the most active single agent in treatment of metastatic breast cancer.

There are some differences in the treatment schedules of the 2 medications, and there are some differences in the side effects of these 2 medications.  I have listed the side effects of both medications.

Taxotere: decrease of white blood cells, red blood cells and platelets, flu-like symptoms, fluid retention, numbness and/or tingling to fingers and toes, muscle aches or bone pain for a few days after each treatment, mouth sores, hair loss, decreased appetite.
Uncommon Side Effects: allergic-type reaction, blood pressure and heart rate changes, nausea and vomiting, diarrhea, skin rash usually occurs on hands and feet, nail changes, menstrual cycle may become irregular or stop permanently, menopausal effects including hot flashes and vaginal dryness.  Decreased desire for sex during treatment.

Taxol: decrease of white blood cells, red blood cells and platelets, allergic-like reaction, blood pressure or heart rate changes during the infusion of the medication,  mouth ulcers, numbness and/or tingling to fingers and toes, muscle aches or bone pain for a few days after each treatment, mouth sores, hair loss, diarrhea.
Uncommon Side Effects: nausea and vomiting, nail changes, menstrual cycle may become irregular or stop permanently, menopausal effects including hot flashes and vaginal dryness.  Decreased desire for sex during treatment.

riley702

I lost about half of each fingernail, and most of the nails on my big toes. I wish I'd known about keeping them as cold as possible during infusion!  The idea is that by keeping the extremities cool, you decrease the blood flow and therefore lower the amount of chemo that gets into those tissues. It's the same reasoning behind wearing ColdCaps to prevent/reduce hair loss and for chewing or sucking on ice during chemo to prevent/reduce mouth sores.

I don't know Caryn Rose, but will be thinking of her and her family and friends.

TifJ

I too did not know Caryn Rose, but my heart breaks for her and her family.

jenn3

Mommafluff - promathezine is the generic for phenergan, which is a good anti nausea medication and one that I use everytime I need strong medication or have a surgery.  I would take it at the first sign of feeling queasy or even before then like the onc suggested.  If you find that you are still feeling nauseated, don't wait it out and suffer, call the onc immediately - there are other meds.  Emend is excellent and used for the day of and three days after chemo.  I ended up using Emend, Zofran and/or Phenergan.  Good luck (((hugs)))

I am so sorry to hear about Caryn Rose - no I'm shocked.

kelben

My thoughts of peace are with Caren Rose.

My taxotere and AC were on Tuesdays.  I was fine on that day and wed. and starting to feel tired and flu like by thursday and the weekend was a write-off.  Leg pain, back pain and shoulder pain were the sx I felt the most... also I was very tired.  Very little nausea, but I didn't feel like eating much.   I had steroids the day before, day of, and day after chemo that were to help with any allergic reaction and to help with any SE.  Onc. gave me all kinds of nausea meds.  (just in case ) and anything I wanted for pain.  The heavy duty pain pills oxycontin, demerol, etc. put me sound to sleep, so I only took them the first day and a half, then switched to tylenol or advil.   One thing I will suggest is that if you are going to be taking pain meds, make sure you drink tons and maybe add prune juice or laxative of some kind to your daily pile of pills.  I got constipated the first round of chemo, and it was awful.

Lovelyface

Heidi - I am so sorry to hear about Caren Rose, although I did not know her.  It seems like she must have been diagnosed around August of 09, which was just recently.  What happened?  Was her cancer metastized when she found out?  I can imagine how you feel, as we connect with people here.  I am very sorry and it also sickens me.

I join you in saying - F*ck Cancer.

Anonymous

Caryn Rose was the first person I really put a face to after my diagnosis. I didn't know her personally but I followed her story pretty closely, as her diagnosis was so similar to mine in the beginning and the fact that she was node negative and then Stage 4 really scared me. I had contacted her about that and was really upset when I learned she had progressed.

She was also very pro-active in her care, taking part in many BC forums and helping to create awareness. She was (is) a real fighter and I admired her spunk. Later, I learned that she was also BRCA+ (I'm not, to my knowledge) and that, in all probability, contributed to her continued problems with the disease.

I think that her decline is, for me,  another scary reminder of how serious this fight we are in really is. As much as I try to put the reality of it out of my mind, losing another TNBC sister brings the nightmare back.

LRM216

Lovelyface - CarynRose has been fighting this beast for quite some time.  She was originally diagnosed in 2003, and went Stage IV in 2007, I believe, and progressed and fought valiantly from that point on.  She has been such a guiding light for so many of us and has always reached out to help anyone in any way she could.  So sad to have to lose such a wonderful lady to this beast of a disease.

Anonymous

She passed at 10:15 tonight.

cc4npg

I'm sorry to hear of this loss... I have no other words...

MBJ

HeidiToo:  I am so sorry to hear about your friend and I am so sorry for your loss.  Cancer sucks. 

moe0279

oh, i hate this thing...im so sorry for you loss and her family...stories like this really bring it home..Just the other night my DH and i were taking about how this all seem like a dream for us...We know that its there but it doesn't seem real because we can't see it and it seems so small...we know it real, but we keep wondering how something like this can be so detrimental...i keep getting emotional about all this..does chemo make you more emotional...i have to be strong around my family, because i don't want them to be even more stressed than they already are so im venting to you ladies...sorry to ramble...I brought up living will the other night and my DH wouldn't even discuss it, how long should we wait...unfortunately we don't know how the chemo is working so could it be spreading as i sit here....gosh its just so stressful...im scared today....i keep wondering if i should have had surgery first instead of chemo first...wonder which is the most effective...does anyone else have day to day doubts about the decisions they made? I trust in my dr.s,but i really am worrying today...How do you all deal with the finincal side of this...it seems there is always copays and prescriptions and ive just started...i can't imagine how its going to be as i get farther into treatment...

sorry to go on and on, but ive found that this is the best place to vent...thanks.... 

kelben

Sorry for your loss Heidi, this will be a sad day.

LRM216

To all my sisters -

Caryn Rose's passing has impacted all of us. For those of us that had corresponded with her along our journey, and for those that are only learning about her now, it is a huge loss.  But she would surely want us to remain strong.

Heidi, I wish I could be there right now, next to you, to put my arms around you, as I know this has touched you in a very personal way.  I totally understand and can well feel all the emotions that you are going through. When a sister passes that we feel a more personal tie to, it can be devastating, a kick in the stomach that causes us to feel great pain.  Whether we personally knew her or not, if we bond with a sister through shared diagnose, treatment, correspondence - whatever - that bond is there - solid and sure.  You are strong Heidi - grieve, as we all will do for Caryn Rose, but also kick the fear to the curb as soon as you can. There are many triple negs that are living cancer-free lives - we can too.

We are all in this together - and I am so grateful for this fact everyday.  Who but another one of us could every truly understand what we feel upon the loss of another breast cancer patient. 

I am so tired of trying to share my feelings about the loss of someone I "only knew through a cancer forum" (as my sister likes to remind me), and if I stayed off the boards, I wouldn't be so "morbid" - then the roll of eyes.  Oh, how little those that truly love us really know.......

As we get ready to ring in a New Year - I will toast to Caryn Rose's life - and all she has taught us about being our own best advocate - and to each of you - may 2011 be a wonderful year  - but more importantly - a healthy one.

Linda

mommafluff61

Dear Heidi,

So sorry to hear about your friend, Caryn Rose.  I will keep her and her family in my prayers. 

This board is so important to me, even tho I am just starting this TN journey. Thank-you. 

Anonymous

I am also very sorry to hear about Caryn Rose. I never communicated with her, but had been following her husband's updates on TNBC Foundation boards. She was a warrior to the end and I hope is now free and at peace. I have her and her family - esp. husband Steve - in my thoughts.

TifJ and Lovelyface: Thanks for the pharma-help advice. I took half a Valium last night and had some rest. I had not so great news yesterday. My path report states they found DCIS in the same breast and an inadequate margin of it in the re-excised cavity. They also found ITC in the one node they took but tell me they don't know what this means, so they "call" it node negative. I'm beginning to feel like I'm not gonna win this thing. So far I've had two surgeries in two months andI just keep getting bad news. I told DH today maybe I should just face up to the fact that I'm running an uphill battle and let nature take its course. This makes me sad but I can't face another surgery. You ladies are very brave and I know I'm not the only one. I just wonder what kind of quality of life I'm going to have if I'm constantly healing from surgery and on chemo for the next 2 years only to have it come back anyway. Maybe I should just take my kids on a couple of vacations and get my things in order.

Claire82

Keep fighting! It's too early to throw in the towel.

kelben

don't give up Michelle, we know it's hard and sometimes very disheartening, but you can do it and we are here to help you every step of the way.

Teka

LRM216,

I no longer talk off-line about on-line BC patients.    I've been told repeatedly by doctors and staff to stay off on-line BC boards.   My husband, son, and daughter keep reminding me that there is no way of checking posts for accuracy.   No one on-line is supposed to know who I am, unless they follow Teka home.   I live in a small town.

MBJ

((((Michelle)))):  It is always disheartening when given bad news, but a year ago October my Dr. told me I would surely die if I didn't do what he told me to and here I am.  It is a battle but you are far from being to the point of being done.  You have to take a deep breath and realize that this may be a long battle but there is quality of life afterwards and healing may take awhile.  If you aren't happy with your doctors, please get a second or third opinion.  Please don't give up!  We are all here for you!