Calling all TNs
Comments
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hey ladies..long time since I've posted on here.. alot has happening in my life. Heres the low down... and a warning to all those who have animals at home. We got ourselves a puppy in Sept.
Puppies as yal know have small, sharp teeth and like to knaw at anything and everything. Well mine was playing with me and got a hold of my right hand... left a small puncture wound on the hand. This was in the week driectly after my chemo treatment nr. 5 with Taxotere. My hand became infected and right after the Funeral of my father in law, I had a collapse in the Chruch parking lot. I ende up in the emergency room with very bad blood count readings.... everything was out of wack ..and thus the small puncture wound had become a major factor.... I was close to having Sepsis. Its been 4 weeks now and Im still wearing dressings on my wound. The surgeon had to operate on my hand a week after the incident. My hand heals very poorly..due to my state of health at this point. My warning to all those who have animals.... be carefull and keep the wounds clean.... or you'll end up like me... heck I almost lost my hand because of this.
Anyway... I had my last chemo on the 18th of Nov yipppeeeeeee........ ended up having 2 pints of blood a week later because of my bad blood work. my next adventure is the Rad treatments.....
Im counting down the days..weeks till this is all over with and I can finally get back to a normal life.... if anything will be normal again. Slowly but surely i see a lttle bit of fuzz on my head LOL
so thats a good sign i guess.
Hope yal are doing well...... stay strong !!
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To Titan (re: no chemo)
My doctor told me that if they find during surgery that the tumor is very small (like < 1/2 cm) then they might recommend I don't take chemo. But I just turned 38 with a 3.5 y/o and an 18 mo old so I doubt I will dodge the chemo bullet.
The U/S put the tumor at 1.1 cm and I doubt that it would be off by over 50%, so I'm preparing for the news that I will need chemo.
I love this thread ladies--and all the good info contained within!
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Good morning ladies. It's a snowy day here in Toronto and it's my daughter's 11th birthday. Wow how time flies. Yesterday my sister sent me one of those emails that gets forwarded on and on to people but the message really resonated with me so I've copied it below for you all to read, too:
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Something To Think About!
Imagine that you had won the following prize in a contest:
Each morning your bank would deposit $86,400.00 in your private account
for your use.
However,this prize has rules, just as any game has certain rules.The first set of rules would be:
Everything that you didn't spend during each day would be taken away from
you.
You may not simply transfer money into some other account.
You may only spend it.
Each morning upon awakening, the bank opens your account with another
$86,400.00 for that day.
The second set of rules:
The bank can end the game without warning; at any time it can say,
Its over,the game is over!
It can close the account and you will not receive a new one.
What would you personally do?
You would buy anything and everything you wanted, right?
Not only for yourself, but for all people you love, right?
Even for people you don't know, because you couldnt possibly spend it all
on yourself, right?
You would try to spend every cent, and use it all, right?ACTUALLY, this GAME is REALITY!
Each of us is in possession of such a magical bank. We just can't seem to
see it.
The MAGICAL BANK is TIME!
Each morning we awaken to receive 86,400 seconds as a gift of life, and
when we go to sleep at night, any remaining time is NOT credited to us.What we haven't lived up that day is forever lost.
Yesterday is forever gone.
Each morning the account is refilled, but the bank can dissolve your
account at any time....WITHOUT WARNING.
SO, what will YOU do with your 86,400 seconds?
Aren't they worth so much more than the same amount in dollars?
Think about that, and always think of this:
Enjoy every second of your life, because time races by so much quicker
than you think.
So take care of yourself, be Happy, Love Deeply and enjoy life!
Here's wishing you a wonderfully beautiful day!!!0 -
Hand tremors or shaking in general... Sharon posted asking if any of us had this as a side effect on the last page. I think she's on AC and weekly taxane. I'm on 4 rounds of TC, with one round done. I did notice some visible shaking after that round. I'm on day 7 now, and it's better, but even yesterday I had a little of it. I had a general feeling of weakness too though, so I thought maybe the two went hand in hand. I believe it's a side effect, yes. We all react differently to the drugs we're taking, but my feeling on SE's is, if I didn't have it prior to treatment and now I have it, it more than likely has to do with treatment.
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cc4npg- I have the shaking too after my TC. I've had 2 rounds. My onc. says it's the steroids. I only have it about days 3-6 then it starts wearing off.
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Monisch:
Jeez - I am so sorry to hear what you have been through, and am happy to hear you are on the mend. It's utterly amazing what a little break in the skin can do to us when on chemo. I had a large lumpectomy, called a batwing incision and a tiny little corner of it still had a healing little scab, but all three docs cleared me for chemo - BS, onc and vascular surgeon. Well immediately after my first AC, I developed febrile neutropenia and cellulitis of that breast from the chemo. Hospitalized in freaking isolation for 6 days, heavy duty iv antibiotics and when released - 6 more solid weeks of antibiotic infusions every day - seven days a week. Ugh! I just wanted to throw the dang towel in at that point, so I well know the horror you have gone through. Just goes to show you, they really mean it about no scratches, cuts, etc, while on chemo. I wish you an uneventful rest of your recovery.
Linda
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Sharon - I can't remember if I had tremors, but do remember having a rapid heart beat as a result of the steroids. Usually when I take medications that cause rapid heart beat (asthma or steroids) I do end up with hand tremors. I'm sure it'll be okay, but I would defenitely talk to the onc about it, just to be on the safe side.
Monish - wow, you've had a tough time. I am so sorry to hear about your FIL and the subsequent infection that landed you in the ER. (((hugs)))
Heidi - The only think I collect are Christmas ornaments. I feel like they each tell a story, which I'm sure you feel as you're putting out you're beautiful pieces - that is a labor of love.
Somehow over the weekend I managed to forget to take my Effexor twice. I had terrible withdrawal symptoms this morning and of course didn't know what was happening to me. It was weird and terrifying. I finally remembered, took it and started feeling better about 2 hours later. I'll have to make sure to NEVER forget that again. I like the Effexor, but am a bit concerned about such intense withdrawal symptoms. I'll have to talk to my dr about that on my next visit (in two weeks).
I hope everyone is having a good day!
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Kittykat- I'm still laughing. I intentionally started a conversation today with that quote and then just continued what I was saying. Loved the look and raised eybrows I got. Most people think I'm nuts anyway. LOL
Heidi- Yup! You got me in the christmas spirit. Thank-you. I can't imagine all of that work but it is unbelievably beautiful. My mother used to collect those she didn't begin to have as many though.
Sugar- Thank-you for that lovely email you shared. I hope your daughter has a wonderful birthday.
Monish- and LRM - Man, rough times. Very scary. I'm sorry you had to go through this.
Jenn 3- I've had a full prescription for that Effexor sitting in my bedroom for months but it seemed to scary to take when I read the possible SE's. Has it really helped you signifigantly? Have you had many SE's from it other than the scary withdrawel symptoms.
MBJ- Where are you? I hope you are feeling o.k. I miss seeing your posts.
I go for second dose of Carbo/Gemzar tomorrow. It's hard to believe I haven't had one day of feeling good since the first last Tuesday. Not as bad as AC though, I think. I will know more this week. I had the ctscan today and should get my results tues. or wed. Doesn't this cold make all of our bones hurt?
The best thing that happened to me today was spending time with my wonderful daughter and adorable grandson. He said "Cracker" today, clear as a bell. Oh! and talking with all of you wonderful ladies out there. Have a great evening.
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Laurajane- my goodness! By looking at your picture I never would have guessed you were a grandmother!! You look great. I am an "old" Mom. Had my first at 36 and the second at 2 months shy of 40. 45 now.
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Yeah well..have you guys heard of the "chemo" facial? Well it happens..all my wrinkles went away during chemo..(not that I had alot ha ha)...but..now 20 months out...and with induced menopause they are coming back..I look my age now..dang it!
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Have you heard about Elizabeth Edwards today on the news? Everytime I hear about a celebrity with BC I have to go searching to see if she is a TN or not. Elizabeth is not a TN - I think that makes me feel better but it is another person who is losing the battle against BC. So sorry.
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When my hair started to grow back I noticed my face also had a bunch of hair. White, kind of fluffy, more of a thin, wispy covering everywhere cheecks on down. That really freaked me out and I immediately got out my shaver and shaved it off. Luckily it has not come back (and it has been a couple of months). I can laugh about it now but like I said "freaky".
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Ha Ha Swanny...guess our razors are meant for other things than our legs and underarms (at least one underarm in your case right now)...don't tell anyone but I shaved under my "bad boob" arm when I was getting rads..they told me not to but I did it on Friday night. There was no way, no how I was going around with armpit hairs! I was just very careful to not cut my skin.
Yes...I heard about Elizabeth Edwards..know where you are coming from about her being TN..or not...it is just a natural thing to wonder their breast cancer status..
We still need to remember that yeah..tn is a bad cancer..but..if we can get through according to my dog eared chart 30 months post treatment..at which point we are equal to the er-pr postive women...then our chances of recurrence keeps going down, down, down...to virtuall nothing.
A goal to look forward too ladies!
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Yeah, I shave under my arm also when I see a few hairs. I am careful to not cut myself. Now I am worrying about bad odors. I put deoderant on under my good arm but can't put anything under my bad arm yet and my body odors are starting to come back. I haven't had BO for a long time but I think it is back. I feel sorry for the girls doing the radiation cause my arms are back over my head and I think I can smell my arm pit so I am pretty sure they can also. I haven't bothered to pick up the recommended deoderants they want so right now I am using soap and water. Oh well, I bet they have smelled worse and my appts are 7:30 am so I am sure I don't smell too bad YET (LOL).
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Titan, Is that 30 months after all treatment ends or 30 months from when?
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Titan - so after radiation is over I start to count to 30 months or after chemo ended? Is there a distinction?
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PinkPee: So sorry you are going through so much! I hope you can get well enough to finish treatment. Hugs.
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PinkPee - I too am sorry you have so many SEs. Hope they get easier.
Kittycat: How are rads going? I only have eight more to go. I think you are on the same schedule as me. I am red and irritated under the boob (a lot) and some on the top. Nothing hurts yet but they say the last week is when the most problems with the skin occur. So now I am switching from Aloe Vera to Aquaphora (the greasy stuff). But that does not bother me and I think it is helping my skin.
Good night to all. Hope everyone has a great night and day tomorrow.
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Oh so many posts to read and so little time!!!!! I just wanted to stop by and say hello and I miss you ALL! The CT scan results were clear clear clear we are still watching one small place on my lung but all is well! My youngest and I have been very sick with Strep over the last 2wks and I haven't felt like getting off the couch much. Hope everyone is well!
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HI All - haven't made it through all of the post but my thoughts are with those of you dealing with SE's - hope tomorrow brings relief, or at least improvement.
Quick question - did any of you choose or consider a trial? There's a trial at Stanford right now that's recruiting and my sister knows one of the docs so she contacted me. It's a phase II study called "Gemcitabine, Carboplatin & PARP Inhibitor BSI-201 in Neoadjuvant Tx of Triple-Neg Breast CA". The hypothesis is that they will have 45% pCR in patients on the study. All arms get the PART inhibitor. How do you decide? It feels like a monumental decision and I feel completely unqualified to make an informed opinion.....for those of you on a trial, how'd you pick it? would appreciate thoughts on how other got through this process.
Donna
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Ok, so I probably overdid it. I'm 7 days post 1st TC. On Saturday, I went to a little party with my daughter for the job I used to have... that she is now covering for me. Only stayed about an hour... ate some food, that's it. Today I went to my PS for a fill and had to walk in the wind chilled air, and also had to get gas. Probably overdid it. I have a fever tonight. It started out 100.4, and now at 100.9. No symptoms other than feeling achy, few minor chills, and the fever. I figure if it's still here tomorrow I'll have to call the onc. I didn't have the neulasta and hope to God I don't have to get it. Trying to drink plenty of water in case I'm a bit dehydrated. Anyone else have any ideas? I feel stupid. I knew better than to just "go, go, go" like I've been used to doing. I'm a state nurse aide for crying out loud. Somebody slap me!
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Hello all
There are so many great posts and I have been reading them all, during these past 5 - 6 post chemo horrible days. Finally I am feeling a little better today, but have noticed a real gray skin from my second taxol. I didn't notice my skin this color with AC. I am East Indian with kind of cream colored skin and now it is going gray, great, isn't it? I wonder what its gonna be like when I get the facial hair too?
Just this evening I saw the news about Elizabeth Edwards and was shocked. My Radiologist had mentioned Elizabeth Edwards at my recent appointment. She was trying to tell me how much advancements have been made with BC treatments and was giving me an example of Elizabeth Edwards. She said EE was shown on the news as "dying" some years back, but look how she has survived. I bet this doctor didn't know that within a week of her saying this, EE would actually be on the news. I am really very saddened to hear of her and also wondered if she was TN.
I am getting my receptor tests re-done and will hear the news sometime this week. I am praying hard that I test positive for ER. Previously I had tested weakly positive for PR 2% and the doctor still wants to put me on aromase inhibitor. Anyone else in this same situation? That you are TN, but have been advised to take a drug?
dlcw - I can imagine that would be a tough decision to make, but in my support group, there are a total of 3 TN's, including myself and the other two are on trials whereas I was the only one on the traditional therapy (dose dense AC,Taxol, total 8 treatments). I thought they were lucky enough to be picked for the trials. I have heard lots of good things about the PARP Inhibitor.
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I was never given an "a" or "b" with my Stage. I was just a stage II. How can I find out if I am a stage IIa or IIb? Or can it only be a Stage II. Does anyone have this information, please? Are all the stages listed anywhere?
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Lovelyface: If your tumor is between 2 and 5 cm with no lymph node involvement, then you are stage 2A. The stages are listed on breastcancer.org I believe under the diagnosis section. Yes, that is sad about Elizabeth Edwards. I have never heard whether she is TN.
dlcw: I don't know too much about clinical trials but that one sounds good. You said everyone would get the PARP, how about Carboplatin? Would you for sure get that? A 45% pCR rate would be great.
cc4npg: Should definitely call onc about a fever, that is what I was told. Hopefully you are not coming down with something.
I have been having some numbness in my fingers and toes, even though I finished Taxol in early October. I didn't have many side effects then, but I wonder if I am having it now. Did anyone else have numbness afterwards?
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Hi Ladies - It's a cold snowy day here. Just checking in to say hi. I'm heading off to work shortly but thinking back a year ago today I was heading to the hospital for my first chemo treatment.
The clinical trial sounds great with such a high pCR rate. Wow!
CC4npg - I'd call the onc just to be sure because you've seen other's post about getting infections and such so you don't want to take any chances
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Sugar- One year ago today I had my *last* chemo!
Swanny- though there are differences in opinion, I think you will find that the widely accepted start time for counting "survival" is from time of diagnosis, not end of treatment. That may be because start time is universal (whenever you start, you start---duh
) but end times vary with treatment.FWIW 0 -
Angelisa- same thing happened with me after tx 1. My onc. called it neutrophile fever. Call your dr.! I ended up having IV (through my port) antibiotics every day for a week to prevent me from getting sick. Each time it took 1-2 hours. Hopefully yours is nothing, but please get it checked out.
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Damn-- just got blood drawn for my cholesterol levels with GP and wondered why I had no order for tumor markers from my onc (appt. is next week). Wouldn't you know it? Just had an order for TM emailed to me from onc's office. So, back to the lab for yet another needle prick.
Bah Humbug.
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I am so unable to keep up here lately! I am no longer a lady of leisure with too much time on her hands. It seems I have had a lot of dr. appointments lately plus Christmas shopping and spring cleaning in the winter and I am still not done! Sugar, I have read that lovely post somewhere before
HeidiToo: Wow, I am so not a collector, but your collection is beautiful and impressive! You have the spirit of Christmas in spite of another lousy blood test. BTW: I did the same thing--had all of my blood done but one test, so two days later another draw. Darn it.
Lovelyface: Being olive complected, my skin at times turned a lovely shade of green. Yuk.
Monish: Sorry to hear of your complications. Hope you are doing better now.
Angelisa: Why did you not get a Neulasta shot???? Get yourself to the dr!
LauraJane: I miss you too! Can't seem to get any time in lately. My DH is expecting more and more of me, my clients want more time from me, and with all of the PT appointments and dr. appointments and can't seem to get any time in. I got up extra early today so I could post. Don't you be scared about mets with TN. There are many chemos to try and many trials in the works for us. I was never told by my onc that mets was fatal for us. You have to focus on the positive! I always think about the dr. who wrote the book Anti Cancer: A New Way of Life. If you haven't read it, get the book. You have to be proactive with cancer and not just go to the dr.
Elizabeth Edwards: I am sorry to hear about her return of BC. I somehow am not surprised. I believe she is a victim of a broken life and a broken heart and these things greatly affect our health. Remember this and be especially good to yourselves today. Life can be incredibly stressfull and having BC is incredibly stressful, but staying positive and staying centered and actively pursuing hapiness has been shown to up our cancer fighter cells. Hugs to all of you who are going through side effects. This too shall pass.
Titan: I don't know if I would have slapped that woman, but I truly wanted to kick her! LOL!
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Donna. You asked about deciding whether to be in a study or not - How do you decide? I was in a study E5103 - randomized Phase III trial to evaluate the potential benefit of adding bevacizumab to standard chemotherapy for breast cancer patients with high risk of relapse. Neither my doctor or myself would know if I was getting the "extra" drug until long into the trial. Unfortuantely I had to drop out of the trial because I was alergic to Taxol and ended up going on Taxotere. But since that was not part of the study, I had to either get out of the study or ONLY take the study drug. When it came down to only bevacizumab once every 3 weeks without any of the other normal chemo drugs, I opted out (plus that is when the news media came out with the news that bevacizumab was not recommeded for Stage IV BC patients - that the benefits did not outweight the SEs.)
How did I arrive at the decision. I think it is very different for me than would be for most. I am single (never had any children) and was 52 at time of diagnosis. I knew I would be getting the regualr chemo like everyone else with BC, but this was just an extra chemo. I figured that if I could help anyone in the future, I would go for it. That was my rationale, but like I said - I was going to get the standard chemo anyway, this would be an extra drug. This probably doesn't help you much, but wanted to share my experience.
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