January 2013 chemo group

Skimom...I get exactly where ur coming from..I try not to think about the negative all the time...even more now knowing I was triple negative...it puts a whole new confusing spin on things..you are young...only 40.... But Picture being 27 like me..I have way too long of a life left to be counting the years!!! I can't wait for this to be over with and look back 5 years from now and realize how strong I really was during all this...I have people telling me all the time how strong I am and how positive I've been...but I don't always see what they're seeing...I just look at it as I'm just doing what i Have to to get better...I do what the drs tell me and that's it...idk I cry at night when everyone goes to sleep and I don't let people see my breakdown!

Hello, darlings! Work is kicking my butt -- not because of chemo, but just because I really don't know how to do this job in under 55 hours a week! -- and I'm way behind on reading how you all are. I just looked at the most recent page, but I hope you're all doing well, with minimal SEs, and that the pugs, crack monkeys, and cabana boys have been keeping you all good company.

Keke, I've just finished my 4 rounds of dose-dense AC with Neulasta shots, and as ywheels said, it's different for everyone. I was on the same schedule (treatments Wednesdays, Neulasta Thursdays), and I was completely debilitated by fatigue Friday-Monday. I had very little nausea, and Skigirl is right about staying ahead of the constipation (I found 500 mg colace in the morning and evening, plus a dose of Miralax in the morning, did the trick). On the bright side, I had absolutely no side effects from the Neulasta, just lovely, healthy white cell counts. AC can be a rough ride, but you'll come through it. It's only temporary. This, too, shall pass, as we always say (with a healthy dose of eye-rolling...).

ywheels, as I understand it, the decision about radiation doesn't really have anything to do with which chemo regimen you have. I think that even with a mastectomy and clean margins, they recommend rads for lymph node involvement or for tumors of a certain size, especially in combination with a high grade.

(((skimommi))) The dark thoughts come sometimes, and if you can't share them here, where can you? We understand. You know, I really believe that, once we get through the chemo and rads, we'll eventually be able to leave the dark thoughts behind. One day you'll be the eight-year survivor, and while the newbie you talk to will only think of you that way, you'll have weeks at a time of not even thinking about it yourself. That number will not define you. Nope. It will not.

Ciao, bellas! Take good care of yourselves.

Curious to know what everyone else's chance of recurrence is... Mine is 8% after chemo is finished...I hear so many others under 5% tho..I know 8 is good but I do sometimes wish it was lower...I actually wish it was 0 but I know that isn't realistic

Mine is between 12 and 4 depending on which MO I ask, and assuming I take all my tamoxifen and have my ovaries shot everytime they even think about releasing an egg.



Regarding radiation, I had a micromet in my first node, would that be radiated? I'm having mx instead of boob rads but so I need / would ros suggest axilla rads?



Sorry to all having tough weeks, it seems r minds wander to depart places. I spent a night in hospital with two women dying from pancreatic cancer. Once dx they have a very low chance of making 5 years, maybe 5%. This was difficult for me to be with them, they were 51 and 63, but it made me feel blessed I had a much more common and researched cancer, with many options.



Xxx

skimommi,

Well what the hell can I say. First of all you better bring your dark thoughts here, how else will we here them, and help you take the power out of them. I cried reading your post thinking about the future. My life has been what I have made it but I wouldn't say it has been a very happy one, but that is another story. So when I think of the future I ask myself if I want to go through this again if I have to. The best thing I can do is remember I don't have to decide today. None of us know how much time we have and I wish I had made better use of what I had in the past. The only thing I can do is try to make the best of what I have going forward. So cry it out, tears are a release we all need at times. Different enzymez and stuff actually come out of different kinds of tears so maybe your body just needs some release. Let Go!

Love and Hugs, Sheryl

Good evening, actually 2:30 in the a.m. for me now -

Skimommi - I hear you and I completely understand and get where you are coming from; I too wonder if my life events will now be charted with 1 year clear, 2 years, etc; is this the right decision for me now to invest in this or that, will I be able to really plan and project into a future that feels like a happy, carefree time? I can't answer these questions because it feels too unreal yet. I think the coping mechanism for all of this lies in how we decide to live it out. No matter what, whether I make it for 25+ more years free of cancer or just 5 years and it comes back, I want the time to be happy and I decide that - not this lousey, &$#^^@ disease! It has taken enough from me already and I won't give it so much power as to rule me.

All that said, right now, as I prepare to get back onto the chemo ride this Thursday for round 4, I am trying to prepare myself for the worst but hope for the best. This time between round 3 and round 4 has been the most difficult emotionally and I haven't a clue as to why. I have never in my life been much for crying but these past two and one-half weeks have been littered with bouts of spontaneous and ridiculous crying. I think it is exhaustion from thinking and exhaustion at the routines I find myself tied to so I feel as good as possible most of the time.

Keke, the Neulasta shot is given between 24 to 36 hours after your chemo infusion to help fight infections. It offsets the effects of chemo on your white blood cell count. I get mine the next day, mid-afternoon; it can cause pain in your large joints. I was sort of OK after the first shot, after the second shot I had such intense pain in my mid-chest through to my back I didn't know if I was having a heart attack or what! I finally asked my ONC and my surgeon (whom I check in with regularly, as she asked me to) who both told me to try Claritin. I did for the third, I started before the Neulasta shot and then took one every 24 hours for 4 days and it worked for me. There is an alternative for Neulasta, Neupogen but this is a shot you take every day for like 5 days and you can give it to yourself at home. The whole point is to avoid getting neutropenic (white blood cell count below 12) which makes you susceptible to infections. Again, this is to offset the effects of chemo on your white blood cells and your ONC doc has to write the script or order it for you to have in the office.

Keke, I did get an infection after my surgery - my skin did not like the dye used to help define the parameters of the tumor in my breast or nodes and it manifested itself with a low fever and my breast was very warm to hot! I was a dumb-ass about it and thought I was coming down with the flu. It all worked out OK but it got scarey and ugly and delayed my recovery from surgery by two more weeks; if you get any type of rise in your temp call your doc right away, even leaving a message after-hours! We're talking about our lives here - I got one hell of a lecture about it from my surgeon and a few others!

bcfree, read Lance's first book - inspirational!

ywheels, you are amazing! I have been trying to walk and the whole time I am looking at my watch for the 12 to 15 min time so I can turn around and go back home - what a wuss I am!

Jubby, Love the tape measure/cutting off each inch as you go - what a great way to help him 'see' the progress!!!

I leave you all with the mental image of us linked arm in arm, a wall of human female strength, that will deny cancer any power and we are all chanting "hell no, we won't go - but you, you miserable little beast, YOU WILL!"

Good night, good day, sweet dreams - and better days are ahead!!!

Kathy

I hate the "what if" game.  Pull a Doris Day...what will be, will be.  For me, its a matter of effort & energy and asking where do i want to spend mine?  I know i'm doing/have done and will be doing everything i can to mitigate the chances of a reoccurance.  Did my surgery, got lumpie, got a full ax dissection, doing my nasty-ass AC-T chemo and i'll be doing rads, too.  I am following all orders and i know, from a medical knowledge standpoint in 2013, i am doing everything i can to make sure this motherf***er is DED and GONE.  I HAVE DONE EVERYTHING I CAN. 

Will i have a reoccurance?  No idea.  Can i can a new primary?  Yes.  Will i?  No idea.  Can i spend my life obsessing about it...well i could...but i won't.  its a freaking crapshoot.  Why did i get bc in the first place?  Did i do something wrong?  Did i turn left when i should have turned right?  Did a moth fart in Guam???  Who the f*** knows???  Not me, not my medical team, hell my omniptent mom doesn't know, so really...why bother???  The deal here is, i'm gonna spend my energy focused on things i CAN control.  You do what you can.  You control the factors that are within YOUR grasp...the rest is in the sky.  If you believe in a diety, put it in your diety's hands.  Throw it out to the universe.  Leave it to karma.  Let Doris Day sing about it...but really...why allow yourself to waste time and energy on something that is out of your hands?

Every man owes a death.  No one gets out alive.  True facts.  But you do control how you live the life you have and i refuse to live in fear of something i can't predict.  I do what i can to promote a healthy lifestyle and be a better me.  I am not going to make decisions for me and my family based on what ifs and maybes.  I want a new car, damn it, i'm buying a new car.  We want to move, we're moving.  I know i won't get mortgage insurance anymore but f*** it...i want to move, i'll move.  I'm planning a WONDERFUL vacay to Italy next summer and i'm gonna enjoy the shit out of it...BECAUSE I CAN.  I AM ALIVE AND I WILL LIVE MY LIFE TO THE BEST OF MY ABILITY.

Does this bc situation suck?  F***ing right it does...at 27, 40, 55, 70 or 95 bc SUCKS.  But it is and we deal.  And it could be worse.  We have medical on our side and we can fight!  We have treatment options.  We have a type of shitty-ass cancer that isn't a death sentence...so why are we trying to wear black and sing funeral dirges???  One of my best friends has MS and she'd be THRILLED to have bc...because we can fight and win and live...she's screwed...she knows her disease is killing her, no cure and she'll never live long enough to see her grandkids.  WE KNOW NO SUCH THING- our stories are still being written.  WE HAVE HOPE.  I refuse to live with one foot in the grave when i may live another 50 years...or get hit by a bus tomorrow.

I understand black moods and black thoughts but they will not define me or my life or the things i want to do.  Not a chance.  My life WILL be the same...with more testing.  If i do have a reoccurance or a new primary, i know it'll be found WAY sooner this time because of all the testing- earlier find, better outcome.  I'd know what to expect, too...been there, done that and i know i could deal with it.  And i'd also know that I DID EVERYTHING I COULD TO ENSURE I STAYED bc FREE.  NO second guessing and no "what if" and no "i wish i'd done something more"...i've done it all...and now i move on and live my life.  Why worry about something you cannot control?  Its a waste of time and energy and effort that you could be using on something POSITIVE in your life.  You could be telling someone you love them.  You could be doing something that makes you happy.  You could be sleeping...or laughing...or working.  You could be giving someone a hug.  You can choose to live.  The rest will come.  Your life will come.

You don't have to carry problems in your arms...they'll follow along behind you IF they belong to you.  MY arms are much better employed hugging the people i love.  THAT'S what I want to do with my life...be happy and love the people who love me.  Happy people live longer and better lives.  Happy people enjoy their lives.  Happy people choose the colours of their lives...and mine is a rainbow.  F*** you, bc. 

Shan  xoxoxx

Yes, well said, Shannon, as only you can say it!  I remember back after my diagnosis, I went shopping one day and didn't even want to buy a new sweater because I may not live to wear it!  It's hard for me to imagine I was at that place but I think it's a natural stage we will all face in our own way and time...since signing up for chemo I've been determined to just move forward and LIVE.  I read a great quote today that 'we are guided by faith, not by sight' and that's how I'm approaching it.  What comes will come, and I'll deal with it when it does, until then, I choose to remain positive.  Thanks for the encouraging words!

Glad this round is treating you better, Jules!  

A THOUGHT FOR A BAD DAY.........................  SOMETIMES LIFE SUCKS BUT GOD ALWAYS LOVES US. 

Keke713  -

Because the steroids, the chemo and/or the neulasta can cause constipation, I agree that it is really important to stay ahead of this.  I’ve finally learned this the hard way and take something every day for this specific SE. I’ve never had this problem before!

Drink water.

Just to add to the ‘Everyone is Different’ category:  I had no body aches or pain from Neulasta. I kept my eyebrows, but they’ve never been anything to brag about. Eyelashes are thin, but I still have them.  Losing my taste buds was far more devastating than losing my hair.  I am a foodie, plus I don’t miss shaving my legs or having to spend an hour fighting with my unruly mop. My cystic acne has cleared up, too.  I suspect it won’t stay that way, but I am enjoying the change.  I never had any trouble sleeping and never took any meds to help me sleep.

Did I mention drinking lots of water?   Ask the doctor if you can just take a liter bag of fluids when you visit them for the Neulasta shot. A gal at my chemo lounge who was several weeks ahead of me gave this great advice.  I am continuing the practice with Taxol.  I had a bit of scary moment due to dehydration after my first A/C and never want to have that happen again.  I am not a water drinker to begin with, but I think I will forever drink more water than I used to, which is definitely a good thing!

DEA4 –

My HGB hovers near nine but has only been as low as 8. I have started to put more iron rich food into my diet.  I think I will mention the shortness of breath during my next visit. I am in a vicious circle because I get short of breath, which riles my asthma and then I lose my breath even more.

Ywheels –

Yes, I am getting radiation after ACT.  I have lymph node involvement.  I only had a lumpectomy and nodes removed, so I still have my boob, so far. (more on that subject later, though) I want to make sure we kill the buggers, so I am not questioning the decision.  I think I would get a consult from an RO if you have not had one at all.  I realize it is there bread and butter to shoot radiation into people, but it’s worth checking into.  Or, at least ask your MO what criteria is she using to determine that you don’t need it.

bcfree2013  -

I am sorry about your delay.  I had one for my third A/C and busted out crying in the MO’s office.  I understand completely and wish you had a different experience.

 Skimommi – Dark thoughts will never stop creeping in, but  I truly believe that a positive attitude counts for everything in this fight, and I am just going to take it one day/one milestone at a time—no sense worrying about tomorrow.  I was really down this weekend because of my friend’s status, and I also felt so run down and achy.  On Monday, I put my big girl undies on and moved on.  Funny thing is, I’ve felt really good for the past two days.

Zorina, I am planning to get reconstruction but did learn there is an option for an immediate implant after the mx...I tried to push for it because i didn't want to get 'expanded' after and figured it was one less surgery to go through, just put the implant in right then...in the end I decided against it so I can get the best aesthetic result but I still think it's a good option for someone who may want to still have shape ther but not additional surgery...hope this helps!

Celebrating the last day of a hard winter with a quick after work siesta (my chemo fatigue indulgence on rainy days).  I don't have my last Taxol until April 4th, but I definitely feel like the worst is behind me ~ it's nice to have a season change to be able to tuck some of the hard times into "last season" and move on. 

I am crazy looking forward to spring and the season of renewal/regrowth~ especially my hair!  Wishing the same for all of you as we tip from winter into spring.