Starting Chemo October 2009

micheleboots

Marie,

I have a PICC but I get my blood the oldfashion way...I would have to book a time to go into the cancer clinic to get one of the ONC nurses to do it from my PICC.  To much of a bother.  I can just pop into the hospital when I want for regular blood draws.  Or I also have the option of going to a lab near my place and have it drawn there the regular way...I don't mind getting blood it is just the IV I hate...ewwwww.

Michele

one-L

Good afternoon ladies:

I had the port placed today, so am ready to go on Friday.

My grandson came by to see how I was doing (he is five) and he was asking about my treatments.  He includes me in his prayers each night.  He does know  that I will lose  my hair, so when he found out about my surgery, he said "You know Maw Maw, it is a good thing that your treatments don't make you lose your legs and arms and you will only be bolt (sic) (meaning bald)."  Now that is  putting it in the right prospective.  It could be lots worse. lol

I think I will be better now and am ready to face that "bolt" head.

Juannelle

sadmom

Hello to all the ladies in chemo this month.  I have been lurking around this thread for awhile, my daughter is also having chemo, she will have her second FAC on Friday.  Reading your posts has been informing and also encouraging!  I am a 20 year BC survivor, was diagnosed in 1989 when I was 34 and had a lumpectomy and radiation, now my daughter is dealing with it at age 31.  And she tested negative for BRAC1 & 2! 

Snuziq-saw your post that you were going to Look Good Feel Better class last night and wondered if that was the same one my daughter attended...and it was!  She was the young one there, I've been hoping that she would meet other young BC gals.  The gal putting it on (Tracy) had a double mastectomy (preventative) since her family had a lot of cancer and I believe she has the gene. I actually met her at the wig shop she owns which is where my daughter got her wigs, Plano I believe?  Small world.

snuziq

Well TX 2 is done, sort of...I am really allergic to the Taxotere so they stopped it mid way and just went with the full dose of Cytoxan.  The steriods helped with the reaction to that so other than a repeated asthma flare up I did good with that dose.

Shoshanna - you have to do what is right for you.  We are still pulling for you even though you have decided not to be a chemo gal. 

All -- I got the mouth rinse recipe wrong...it's 1 tsp of salt and two tsp of baking soda per liter of water.   The other way probably would have worked, just not as well.

MaryNY

Piffken and Dee: Good luck tomorrow! I'll be living vicariously through your experience tomorrow and over the next few days as I too will be on dose dense AC starting next Wednesday.

Juanelle: how long did the port placement take? Any discomfort? I'm to have one put in too, but don't have appt date for it yet. Is "bolt" = body?

Sadmom: it must be hard for you to watch your daughter going through this after having being through it yourself 20 years ago, but your firsthand experience must be enormously helpful to her. You must be very relieved that she tested negative for BRCA genes.

MarieK: I love you wig too. It looks so shiny and healthy. Is this one of the ones you got on eBay? I got a free wig from the American Cancer Society at a LGFB workshop but it feels horrible, almost as bad as running your hand over steel wool. Maybe all artificial hair wigs feel like that? Also it has far too much hair on top. They suggested that I get it trimmed but that might cost more than getting a new wig on eBay. The wig I got has wavy hair too. There wasn't much choice. I just wanted a simple bob in a mid-brown but ACS had nothing like that. What are "skin parts" and "lace structures."

Onty: is the "nadir" (7-10 days post AC) for white blood count or everthing? Just the yuckiest day? If it occurs on day 10, that doesn't leave much time to recover for next treatment for those of us on the 14-day cycle.

Shoshanna: Good luck with the next phase. Are you doing radiation next or will you go straight to hormonal therapy?

one-L

Mary,

No "bolt" is "bald".  He said he had seen a bolt guy on Sponge Bob, and he had no hair, so he was bolt.  The port placement took about an hour.  They used that amnesia drug, so I was out about 15 seconds after the nurse put it in the IV.  When I woke up I wasn't groggy at all.  I have had no pain but I did take a pain pill just in case.  One hint though, I didn't wear a bra to surgery and the doctor wanted me to put it on so he could mark where it was, so the port would not be under it.  I have been wearing camis, so I didn't think it would be a problem anyway, but it was a nice gesture.  They told me not to eat until I got home, just in case I got sick, but I was so hungry, I did eat something, but it was lite.  They told me just not to over eat for a couple of days.

When we got home, I have not needed a nap and feel really good.  I will not work tomorrow and told them I didn't know when I would be back, since I wouldn't know how I would react to the chemo and my bad days may start on Monday.  It is a good thing I have time.

Sadmom, I can't imagine how hard it is to watch you daughter go through this.  However, it must be a comfort to her to know that you are alive 20 years post.  My prayers are with the both of you.

Juannelle

MaryNY

Juanelle: Were you able to drive yourself to and from the port placement procedure? It sounds as though you came around very quickly. Why the advice not to overeat for a couple of days? It's nice to have tomorrow off so you can take it easy and then be more relaxed going in on Friday.

Something I've been wondering about since you first posted on this thread - why is your username "one-L" when your name has two l's? I presume that when giving your name to someone new you constantly say "two n's and two l's."

azdiva

Hey Marie & Everyone!

I got my cold because I haven't been laying low like I should!  I figured my protective shield of 37000 WBCs was good enough!  Hahaha  I have been to wine tastings, out for dinner, went to the Barneys opening, etc., etc.  Not enough hand sanitizer in the world to cover all of that!

Still thinking of going to Mexico this weekend.  Stupid?  Sure.  But that patio is calling me!  Plus, I am 99% positive I already had swine flu in the spring (and the kids).  They stopped testing because so many had it around here.  (It was no worse than regular flu and probably lasted for 2 days.)  We bring our own water and I'm careful about food.  Always mix everything with a lot of tequila!  I've never had a problem.  Leave Friday, come back Monday.  Monday night is the LGFB meeting.  Tuesday is blood day. And then Wednesday 10/28 is the big day of Boob Fill #2, followed by TC #2.  Somewhere in there will be the head shave, because hair is starting to give up the ghost.  Unless it is just rebelling due to its recent run of good hair days.

Bought the Suzanne Somers book.  I know, I know.  I kind of think she's a loon.  But Geez Louise she looks fabulous for 60+ years, with or without cancer!  Its that whole Grade 3 thing holding me back.  

Love you guys!

Laura 

unklezwifeonty

Dear MaryNY,

Nadir is only for low WBC's. During nadir, you need to maintain very high hygiene and sterile conditions around yourself, avoid sick people, have children wash up when they come home and if possible avoid going out. There are other yucky days, sometimes yuckier than nadir.

Here is a more detailed explanation of how I understand things and based on 2 AC's. Others will have a better perspective having gone thru' more AC's:

Without Neulasta, the nadir occurs between 6 and 15 days after AC, lasts 4-5 days and is deeper.

With Neulasta, the nadir occurs between 7 and 10 days, lasts 1-2 days and is not as deep.

With or without Neulasta, the first 1-6 days I have nausea, fatigue, fever, body pain and GI issues - these are mostly manageable with chemical help (where is medical marijuana? LOL).

Even with Neulasta this does not leave much "good" time before the next AC infusion in Dose Dense regimen.

Hope this helps. 

sadmom

It is very hard to watch my daughter go through this especially since she is in Texas and I am in Iowa!  Have made 3 trips and will go again next month for her 3rd chemo.  She is amazing...so much stronger than I was!  Our tumors were the same size, both HR+PR+, node negative and back then they didn't test for much else!  I slipped through the cracks not having chemo, didn't get referred to a medical oncologist, only a radiation oncologist.  Thank God I have never had a recurrence!  My daughter had lymphatic/vascular invasion which is partly why she is being treated so aggressively, I may very well have had it too but it wasn't tested for.  I was the very first one in our family to have BC, she is the second.  And we do not have a small family!  I'm pretty sure there is a genetic connection...just one not identified yet.  The doctors feel so too, since we were both so young at dx. 

 I remember when my radiation oncologist, in 1990, told me about this new invention called the internet.  He told me I should get it and then I could talk to other women that had BC.  I had NO IDEA what he was talking about.  We didn't even have a home computer....he was quite progressive for an older guy!  Amazing now what a resource this has become!

Another think my radiation oncologist told me was that in time I would hardly even think about my breast cancer....and he was right about that too.  Until my daughter was diagnosed in late July, I seldom thought about it, only when I went in for my yearly mammogram.  And even then I am no more concerned than any other woman would be. 

I hope and pray for all of you 20+ years of good health and happiness as I have been blessed with!

one-L

Mary, I was not able to drive myself, they want to be sure you have someone to drive you home, so that person has to sign for you.  I  have acid reflux already so it may be that they want to try and alleviate that.  It may not be for everyone.  The drugs they gave me were the same that they give for a colonoscopy, I think.  You are not fully under, but you don't feel or  remember anything.

The One-L is how my name is pronounced.  I was named after a Juanita (Juan) and a Nellie (Nelle).  The e is silent so my mother pronounced it like One-L.  When my husband set up my email  account, that is what he used.  At work I use 1L.  It is easier than writing a 9 letter name each time.  It is also easy to sign to the deaf, because it is usually a name they just can't get, but with the sign 1L, they have it.

Juannelle

unklezwifeonty

Dear 1L, I spelled your name as 1L right off the bat :-)

MaryNY

1L, now I feel dense. I should have been able to figure that out for myself

Onty, with all that nadir, not much time for a zenith! I was told I would be getting a shot the day after each infusion. Is that likely to be the Neulasta shot? It sounds like days 1-6 are like having a flu and day 7-10 could be even worse. How soon after the first infusion did you begin to feel bad? I understand it's not immediate. I presume by day 1, you mean 24 hours later or do you mean the day of the infusion? I think this is not going to be any picnic.

unklezwifeonty

Dear MaryNY,

The chemo day is Day 1. Personally I feel ok that day except tired from being at the chemo center for several hours. They give you enough anti nausea medication and steroid (Decadron) before chemo to make you feel good for some hours!

Yes, Day 1-6 could be compared to flu or could be much worse. Watch out for constipation and diarrhea and take preventative measures especially if you are prone to one or the other. Day 7-10 are fine for external side effects but you want to be careful and in case you get something to call your doctor's office.

Yes the shot you get on Day 2 is Neulasta (the other option is to get daily shots starting Day 4 or Day 5, those are called Neupogen they essentially do the same thing but most doctors and patients prefer to get a single Neulasta shot due to convenience).

Chemo is not going to be a picnic but I have also heard of some that tolerate it well. For me, AC #1 was very doable. AC #2 has been SH|T till this morning (Day10).

If you have any different or severe side effects you'd call the doctors' office and they would patch you onto chemo nurse or have you come in. They should give you sheets explaining what to expect and when to call etc. While you wait, you'd post your issue right here and one of your friendly October sisters will help you out.

MaryNY

Onty, thank you so much. It's great to have others leading the way ... though not much fun for you. But at least now you are half way through the AC portion of your treatment.

Sido

Hello Ladies of October,

The shuffling bruised here in Peoria are recovering.  My dog Cooper had a bad night and kept waking up crying in his crate.  I spoke to the vet and he gave us some pain meds for the little guy and he's getting around much better now.  I'm following up with my gp tomorrow abut my knee and my left arm.  I'm also going to ask about pain issues because the inflatable butt donut just is not helping and the vicodin is of limited use.  My DH is having a lot of trouble with his tailbone and what feels like a baseball in his back pocket.  Everyone keeps deferring to my oncologist about managing pain, but I don't see her until Friday.  I have some Lorazapan she gave me as an anit-nausea option, so I might use it so I can get the muscle relaxant effect too.

Heck, I don't even know what are me chemo ses and what are from the accident.  The only good part is that I get some new designer sunglasses out of it.

MaryNY

Sido: what a kick in the butt to have an accident now with everything else you're having to deal with. I hope you have no lasting damage. Could you at least speak to a nurse at the onc's office tomorrow?

unklezwifeonty

Yeah speak to the onco's nurse. Maybe she can call a stronger steroid.  If they could do it for Michael Jackson, surely they can do it for u.

MeredithK02

Sido, I'm so glad to hear you're ok!  Well, as okay as you can be going through chemo.  :-)  I officially feel a smidge less sorry for myself now!

 I'd better get to bed soon...port placement is tomorrow at 8am!

unklezwifeonty

Meredith,

Good luck with your port insertion tomorrow.

MaryNY

Good luck Meredith!

valeriekd

Sido - good luck to u - just a thought - i broke my tailbone in december pre-BC and it killed post chemo. They said areas of bone vulnerability will hurt more w/ chemo - in othern words you'll probably want some stronger stuff. I am sorry,

Good luck w/ port 2morrow  Idid not have a bad experience w/ it.

oh, brushed my hair tonight and half came out in the brush-SURPRISE! weird but no pain for some reason I thought it would hurt like a hair pull or something. but no....Gonna get it cut 2 morrow.

Bless u all! Valerie 

Scoobydoo

Onty that was a great synopsis.  I am on AC #3 and sometimes SEs are cumulative.  My hubby gives me neupogen shots from day 3 to day 7 (5 shots).  My onc would not approve me for neulasta.  She said that the dosage would cause bone pain and other SEs.  That the neupogen would be easier on my body.  I guess that is somwhat true.  I just hate shots!  She also told me that I will probably be able to get off the shots for T tx.  One more AC to go!!  I have to set small victories along the way to make it through.

1L- that was the cutest story with your grandson.  That put a smile on my face.

New SE today.  The bottom of my feet are raw.  Like a sunburn.  Ouch. Dont think I was moisturizing like I should. 

Hopefully today will be a relatively SE free day as I want to go to my DDs field hockey game today.

asig

Hi MaryNY, just dx 9/28/09 and starting neoadjuvant chemo within next week or so.  Dx is Stage IIb, ER+, 1 lymph node.  Pretty frustrated right now as MRI came back, after PET/CT, showing possible 5mm spot at my L2 veretebrae.  Now, they want to biopsy that.  Anyone have any experience with that?  Should I say yes to biopsy?  If I'm starting chemo anyway, I'm not sure I see the purpose.  Would love to hear from anyone who has had similar experience. 

SoCal Gal, age 44.

joanneasiata

hi ladies good to read everyones posts you all sound very cherpy today i whent shopping for a wig at the markets and come home with 3 they are all differant from each other so boy will i be having fun my husband just loves his new 3 wives  ha ha i carnt seem to put my picture up im in australia dont know if that matters or that im hoples on computers any way 1 MORE SLEEP FOR JO JOS 1 ST CHEMO in not scared as much im just going with the flow now no point getting upset its just one year out of my life compared to the many i have  me and my husband r going out for breaky first then to the hospital trying to have a good time through the bad

Laura its a pitty about hubby men carnt seem to handel things like women can just hang in there hel come around   well ill post tomor if my head isnt in the bowl

Joanne

Hopbird

Asig, the only thing I can think of from your scan is that they might change the drug if they think there is something going on in your bones?  That's certainly a question for your doctor.

Sido, I'm sure the other doctors are afraid to give you something that might mess with the chemo.  I hope you get the pain relief you need. 

Joanne, good luck with your treatment.  I hope your pleasantly surprised and the bowl isn't needed.

Good luck to all of you starting today and tomorrow.  I hope round one isn't as bad as you had feared, and the "hangover" clears quickly.   

snuziq

I wrote this sometime last night.....it just didn't post 

azdiva - I am inspired by your spunk.   As my husband told my oncolgist today, I'm not real good at realizing I'm wearing down until I'm lying in bed saying "man am I tired".   Looks like you share my delemma.   Have fun in Mexico - if you are prepared than I doubt you will get a bug, besides you already have cancer - doesn't that top everythig? 

 Sadmom -  Is your daughter near Plano?  I live north in McKinney, but wouldn't mind meeting up with her if she would like.  There were a couple of young women there so I'm guessing she was the one with the great wig -- I feel weird saying that since at 41, I still think of me as young - besides my maiden name was Young, so I guess that makes me young forever!   I was the one with the scarf and scrunchie.

Onty - you have always shown how perceptive you are!

Suzi

Hopbird

Mary, I guess I should have you officially add me, if that's OK.  I started on September 21.  I am having a different drug regimen than most.  I'm having four treatments of Abraxane every other week...(that's a drug in the Taxol family.)  I've had three already.  After that I will have twelve weekly treatments of a drug called Navelbine.  With all of that, I'm having weekly Herceptin, then Herceptin once every three weeks for a year.  (Don't worry about the Herceptin for the smiley faces...you might run out of room! )    Thank you.

one-L

Got up this morning and took my first dose of Dexamethasone.  Getting ready for tomorrow.  I have no pain from my port, so that  is a good thing.  Of course, it could be that I got up in the middle of the night and took a pain pill, but probably will not take on today.

24 hours till first chemo.  It still doesn't seem real.  I guess I will get there soon enough.

Juannelle

MaryNY

Good luck tomorrow to Joanne, Clarice, Meredith and Juanelle.