April 2011 chemo

louis13

profbee, yes, my choice re left breast has been made for me.

what is a ? for me now is the other breast which did have microscopic ALH( atypical lobular hyperplasia) ....i had a lumpectomy, as it turned out on that side- supposed to be a surgical excision but bs took huge sample and that breast is considerably smaller, hangs differently now, nipple pointing the other way cos of incision site etc..this has kind of alienated me from that breast have to say, and was not happy about result when i woke up and especially when i read report! because for me that excision was supposed to be about clearing that breast, not disfiguring it.  i know that many women would feel that ALH in contralateral or ADH is def reason to have bilateral mx ie breasts are "too busy"--but then again,  ALH/ADH often never amounts to anything more than that..atypical cells...and it can take 20 years for it to develop into cancer.. or less... and most women who never develop breast cancer die with  atypical cells because as we age this is what happens throughout our bodies...approx 20% of cadavers have tumors ie people can die with tumors without even knowing it..problem is, we all just dont know where we personally sit in that range of possiblities....I should explain that i come with diff perspective than most in that am not as freaked out about cancer because have been living/studying/working/researching and liaising about familial cancer syndromes for past decade, but since it involved CNS( central nervous system) and tumors wrapped around vital nerves and functions the approach there is to wait and watch and also on the spectrum of benign to malignant these CNS tumors are in a grey area in the middle, transitional, invasive, high mitotic index like cancer but not metastatic to other body systems/organs..and that is the big diff, even though these 'benign' tumors can also kill by location/muliplicity

re your worry about leaving one cell behind...i think it is very evident that for the right candidates and clear margins, there is no diff in outcome for lump/rads and MX and recurrence...i think the diff between two surgical approaches is almost geographic or maths- if you remove all your breast tissue, then above and beyond lump you improve your chances of any NEW breast cancer returning, anywhere except on chest wall cos they cant take it all your breast tissue...BUT the thing to remember there is, if they get it early enough and no mets have got underway, then any new cancer in breast is not going to kill you, it just would mean more surgery..so then it comes back to peace of mind of this being less likely to happen with 90% of breast tissue removed with a mx, and the disruption of another surgery, disruption to your life etc etc, not to mention the testing....have i gone around in a circle? that is because my head does it all the time lol. just think there is no easy answer here for any of us, and i guess we can only be guided by our specialists with regard to our particular cancers/receptor status/tumor size/presentation at dx and also, our personal situations/age etc and try and find the answer that we will be the most comfortable to live with......??

louis13

and thanks for book suggestion profbee..i will get it!

profbee

I think I could have written the above...not the info, but the sentiment.  I'm going round and round all the time.  You know the facts on paper, but then it's ME and the thought of going through all this again is just...sad.  I'm being a good little soldier and I'm really feeling okay about this whole round of treatment, but the thought of a recurrence is just awful.  I'm so sorry about your surgical results.  That's why the doc said to me at first...my tumor is on the bottom and she said that often then the nipple points downward and the results aren't good b/c if it's on the top it can like fill in, but on the bottom like that it doesn't.  So, that's a question for the surgeon when I see her in a couple of weeks.  Could you still do reconstruction if you wanted?  I've heard you can go back in and do that later.  

I'm leaning toward lumpectomy and keep thinking that it will not look like it's looked and that's okay, but thinking that's okay now and seeing it later and living with it are two really different things.  I'm sorry that you're dealing with that right now.  

Thanks for chat...it's a pleasure talking with you.  Oh, and yeah...I was totally "cancered out" too--couldn't read all those breast cancer books and other peoples' stories of triumph while I was trying to muster my own courage, but somehow this is the book I wanted to read.  It's smart but reads like a mystery.  That said, we'll see if I can keep my eyes open at all to get into it.    So sleepy these days!!

artiecat

Profbee I LOVE what you said - we are living our own mystery stories!  And sharing the clues and discoveries with our sisters!  Great analogy!

RangerMom

Hi all, I've been out of town with work and all. #3 went extremely well, no vomiting and only a little nausea. This time I took ativan the day of chemo about an hour before, then again that night. It seemed to make the difference for me.  Now only one more to AC to go, then on to TC which I hear is not as bad. I've got a lot of catching up to do. I hope all are well and we're all about near half way through!

pawprintgirl24

profbee i am so excited for you!!!! to know this stuff is working!!! do a little dance when you feel up to it!! i had a lumpectomy and mine was at the top.it was easy to get over. it still has a hole since i started chemo it won't heal but it has gotten alot smaller.

RangerMom

I have some good news too, my lump is smaller in the right breast. Onc doc confirmed it also so yes the chemo is definitely working. Unfortunatley, my bil mast is still scheduled a month after the last chemo. Some time in Sept I think. I know a lot of you have already been through that and when it gets closer I'd love to get some advice, tips from you all. thanks

BernieEllen

Hi to all, chemo 3 last wednesday.  Hubby away so friend over from England to keep an eye on me.  Steriods have sent my bipolar mania off the wall.  I don't have a port fitted and veins have started to collapse already.  So 3 not so great for me.  Artiecat - totally agree with your lessons learn't.  Glad to read all the good news.  Thinking of you all.

Merilee

To all of you that are showing shrinkage, that is so awesome! Ranger mom so glad this last treatment went better.  My #3 was last wed so I am on day 3 post and so far am doing ok. My daughter is in town from Chattanooga and she has been a major uplift in spirits for me.

artiecat

Daughters are wonderful creatures!!!!  I thank heaven for my two every day!  (Well, almost every day!)

profbee

Yay Rangermom!  Happy to hear you're shrinking too!  It's hard to believe we've all been on this journey for months now.  Yesterday, I said to hubby, "Yeah...I'm sick of this cancer stuff.  I'm over it."  LOL.  My son started on some meds for his seizures and while he hasn't had a seizure, he's been IMPOSSIBLE!  He's cranky, whiny, busting into tears and anger at the drop of a hat, oh and he's wetting his pants.  So yeah...it's been a fun week.  Sometimes I wish I could just take a time out from this for a while.  A little pause button? 

Merilee

Probee I was chuckling at your pause button idea. I think I want the fast forward LOL

jackifp

Artifact, I ditto your four lessons.

Profbee, I did a happy dance for you...my dogs loved it As far as lumpectomies, I'm small-breasted, and the 3cm lump the bs took out with it's 1/2cm margin all around left a good dimple. When a good, ample-breasted friend offered to give me lots of hers, I told her I was good with the one and a half I've got, thank you. I wear camisoles instead of bras, and the size difference is only noticeable with a snug tshirt, which I don't wear, anyway. Besides, that's why all those doodads were invented to stuff in bras.

Merilee

Don't regret my double Mastectomy at all.. I love not needing a bra, and I don't care if anyone looks at my chest and thinks "Oh my she is flat". Flat is where it's at LOL I was a large c before and got more looks at my chest then. I really don't feel anyone even notices now.

profbee

I LOVE the fast forward idea!  LOVE it.  Yes, let's FF a bit--maybe just to January and then slow down for a nice, long, healthy life.    I go braless a lot--I'd say I'm a b cup...although I wear C demi cups.  It's funny how before I lost my hair I didn't know that I'd really be oikay with it, so I'm wondering how I'll feel about my boobs after the lumpectomy.  Jackifp, maybe it'll be a great excuse to buy some pretty bras!!  I've always loved pretty undies, but they haven't been in my budget for a while.  Maybe a post-surgery splurge will be in order!

bonnieandcleo

hi all I had my 4th chemo session last fri my onc thought the tumour was getting smaller I was very happy....i  am on navelbine and avastin and I find some of it very hard. I have mouth sores in particular my gum and also very bad pins and needles in left arm...I am taking neurontin 6 tablets a day...anyone any suggestions...i have a long way to go maybe 12 sessions every two weeks and then maybe avastin for as long as it works ! not sure waht happens after that...hope everyone is doing well.

artiecat

Well, today I had to tell my team at work that I will not continue to work during chemo.  Hated to do it.  I just didnt bounce back very well after TAC #3 which was two weeks ago.  I am tired, tired, tired and I find that my mind just doesnt focus very well.  So - boohoo.  My supervisor and my team are wonderful...I was told that I am not to worry - when I am ready to come back after surgery they will be waiting for me!  I love my job.

Merilee

Artiecat,

 I am glad you are allowing yourself the break. Good for you. I am also off for the summer and can not imagine functioning in the capacity that I need to at work. Some days I can barely put one foot in front of the other and very cloudy thinking right now.

artiecat

Thanks for sharing that, Merilee.  Sometimes I feel like such a wimp!  And I appreciate knowing that I am not the only one with a cloudy brain!  Thanks!

kg1234

Hi Ladies.

I had the most glorious gift of 11 days off chemo, and I enjoyed each and everyday!  It was a much needed reminder that there is light at the end of the tunnel.  Lunched with friends, ate salad and it tasted good!, went to my kids big school fair, had coffee with friends, visited work, and most of all, I got the most amazing gift of feeling good on the day of my boys 7th birthday party.  I enjoyed every moment and didn't waste a single moment, a single second.  I was maybe 60-70% of my usual energy, but I didn't let it stop me.

Of course, it ended blah and I was back in the chair yesterday.  I have 3 more months of chemo to go.  Am I the first here to be starting taxol?  It's a much, much different feeling already than A/C.  No post meds, no nausea. Weird. And I feel okay.  I'm not willing yet to say I feel great, since it's only day 2. But I am up, drinking coffee and taking it easy and see what the next few days bring.

As for fast forwarding - I desperately want a TIME MACHINE!!!!!!  And it's funny, because in my mind, I would only use it to go forward in time (say December) to get to the end of all the treatment.  But then a friend said to me, why wouldn't you use it to go back in time and catch the stupid lump wayyyyy earlier.  She had a good point too!

Anyhow, for those of you still in what I call the "depths of despair" or "on deaths door" (and truly that is how I felt on AC...expecially towards the end) , please, please take my message as a reminder that there is light at the end of that neverending feeling of sheer hopelessness.

Those 11 days off rejuvenated my spirit and reminded me why I am doing this, and that I WILL feel myself again.  I hugged, I laughed, I cried and I was joyful for 11 days.  I am going to hold on to those memories.  Also, don't be shy with your ONC and ask for a bit of a break.  Putting off treatment for one week to get your sanity back is not the end of the world.  Quitting chemo altogether would.  Lots of people just give up.  Don't give up!!!!

Cheers, KG.

Anonymous

Thanks for the encouragement, KG. I start TDM1 tomorrow after a three week break from AC. Wish me luck!

kg1234

Windlass - it's great to hear from you!  Mind if I ask, what is TDM1?  Either way, I'm hoping it's absolutely nothing like AC!!!!  That was horrid.

KG.

Anonymous

AC was one of the worst things I've ever experienced. T-DM1 is a new experimental drug for HER2+ breast cancer where they use Herceptin to target the cancer and deliver a more toxic chemo drug. My oncologist assured me I'd be amazed at how easy it is compared to AC. Which is a good thing, since I get a full year of it (17 infusions, one every three weeks). I do have to do Taxotere and Rads in there somewhere, too, but not for three months.

I was so glad to see you feeling better, KG. I know we've both been through a lot.

profbee

I'm on Taxol with Lapatinib.  It hasn't been too bad.  I've had 9 weekly treatments of 16, and the worst was/is a rash--it's like zits on the face and then broke out itchy everywhere.  ugh.  That stunk.  That was from the Lapatinib (Tykerb) though.  The Taxol has been fine.  Some diarrhea that you have to stay on top of with Immodium, but it's manageable.  And now that I'm over 2 months in, the fatigue is really starting to add up.  That's supposedly from the Taxol.  But I'm alright...no nausea or anything like that.  I'm doing A/C after surgery, and from what y'all have said I am NOT looking forward to it!  Yikes!

Anonymous

It's 6:30 Am and I am getting in the car to drive two hours to my first infusion of T-DM1. I've come to associate the infusion center with nausea and misery, so I will have to adjust my mind to the new reality of this easier drug. Please say a prayer for me that it works and tackles any cancer cells that may remain.

Profbee: Thanks for reassuring me about the Taxanes. I get four founds of Taxotere in three months and am glad it is not as bad as AC. Did you have any numbness or tingling in your fingers or toes? Or hearing loss? Those are the side effects that have me scared.

profbee

I DO have a little neuropathy in my fingers.  It doesn't tingle all the time, but it feels a bit like I hit a hammer too hard--y'know that like numb feeling?  It's not like I'm dropping things or can't type or anything.  I really hardly notice it.  There's a little in my toes too, but not much.  No hearing loss at all.  Hang in there,hon. I suspect this part of the journey will be a lot easier. 

CarlaB76

Windlass...sending strength to you!

Profbee, I started Emperor of All Maladies and I'm eating it up! I've actually been reading long sections to DH in the car when we carpool back and forth between work.  Beyond the obvious interest about cancer, he and I both have doctorates in chemical engineering and chemistry respectively.  So the science is right up our alley.  And the writing is funny.  We're loving it. 

#4 AC on Monday.  Can't wait...NOT. 

profbee

Glad you're digging it Carla.  It IS really good--I'm as far from a scientist as you can get, and I can understand it!    It's just well written.  I hope you get to enjoy the weekend before Monday!  

ginger_mea

Hi everyone, Windlass - my onc put me on Vit E its suppose to help with the neuropathy, I get it a little but only for about 2 days post treatment.  As for being sick Emend works great!

I have Emperor of All Maladies coming this week from Amazon, can't wait after reading all the good reviews from everyone.

This Princess Warrior is back on the thrown in the a.m. 3rd time, and the HALF WAY MARK!!!

hugs to all of you

Merilee

Windlass

You made it through, you are strong and here is some white light energy for you. In two weeks I will be done with chemo, and it is a good thing. I have had enough and my body feels like a cement rag doll.

Hugs