Starting Chemo October 2009

valeriekd

Good luck ladies on your first chemo journey- Carry all of us with you and go with the flow.....Valerie

one-L

Thanks ladies, I know you will all be  there with me tomorrow, in spirit anyway.

Valerie, I like that, go with the flow... haven't thought of it like that.

Juannelle

micheleboots

Good luck to all the gals who start tomorrow...Think posative...My first was a breeze and I hope you all sail right through it easily as well...Perhaps it was the "Good Luck Socks" my daughter made me..She took a pair of white socks and used fabric paint and drew all kinds of happy/lucky things on them. The nurses thought they rocked, and so did I.  I'll be sure to wear the every time..

Michele

MarieK

Good Morning Ladies!

Welcome to our new October sisters - sorry you have to be here but glad that you have found this group for your comfort and support during your BC journey.

Good luck to those of you going for your infusions today and tomorrow.

Valerie I like the "go with the flow" comment too!  It's very appropriate and I'll have to remember that for Monday when I go with the flow for the second time.  Hopefully without an allergic reaction to the Epirubicin!

Sido - I'm glad to hear that you are all on the mend.  Please be careful with the pain meds - when reading your post the thought crossed my mind that you might consider taking the dog's pain pills as you rifle through your cabinet looking for some relief while you wait to see your doctor!

Onty and Scoobydoo - I do the Neupogen injections too - Day 3 - 10 (7 injections).  I was prescribed both Neupogen and Neulasta but my drug plan would only cover the Neupogen so that's why I do that one. The cost of the Neupogen at $2700 x 6 was too much to pay out of pocket for the convenience.

Joanneasiata - my husband has more than 1 wife these days too.  He never knows who he is going to come home to.  We are having good fun with the wigs, makeup and outfits! 

Someone asked about the lace and skin part wigs.  The lace wig is very light and stretchy and the hair line is more natural.  The skin part just means that there is a silicone(?) piece that the hair is threaded into that looks like the part in a natural head of hair rather than the hair going into mesh at the part line.  Most of my wigs have bangs or a wisp of bang and that helps to hide the line of the wig.

I have bought wigs from 2 sources on eBay - Estees Boutique (Canada) and ASAP Hair and Makeup (USA). 

Today I am wearing my Katie Holmes wig (same as in my Avatar).  This is my everyday wig that I bought from a custom wig shop near me. 

I just came back from the local Starbucks - more stares and more wide eyed surprised looks of recognition from people who haven't yet seen me in my wig.  And lots of compliments!

I need it today - I'm going in for my PICC line insertion in a little bit and I'm kind of dreading it.  I know it will be better for infusions but the thought of having "tentacles" hanging off me for the next few months is not very appealing.

On the hair front I woke up with stubble on my face - not facial hair but the little shaved bits from my head are starting to fall off.  I've also got a widening reverse Brazillian in the nether regions - very weird looking!  But I've learned from past experience and I'm not shaving that off!!! Armpit hair is almost gone - I shaved a week ago and there isn't much new growth.  Never had much leg or arm hair so I don't see any difference there.  Can't imagine what it will be like to be completely bolt/bald but I guess I'm going to find out!

As for other SEs the lower back pain I felt over the weekend must have been PMS because my perioid started last night.  When exactly does chemopause start?  That's the one SE I was looking forward too!

Woke up this morning with a bit of a cough but I hope the Cold FX I take daily will keep that from progressing.  It has worked for me so far on the other coughs/colds I've had since this whole thing started. 

What happens if you've got a full on cough/cold?  Do you still get your chemo or do they postpone until you're better?

That's it for me for today - I need to go and put in a load or two of laundry before I go to the hospital. 

Hugs to all and have a great day!

Marie

arby

Dear MaryNY and 1L, I really appreciat4d the explanation for your name.  That's a beautiful name, Juannelle!  I have neglected being here due to neg side effects of my 1 st 2 chemo treatments and not wanting to be a whiner.  But I can see by reading thru pages that I could have gleaned some advice to try these past 5 weeks.  According to my Dr. I was the extrodinary patient to have ALL the side effects, GI upset for 15 days, low blood counts, mouth sores, dizziness and then reactions to every med they gave to counter side effects culminating in a yeast infection, thanks to the 14 day antibiotic regiman!  It can only get BETTER!  and this 2nd round has, thanks to Emends and Neulasta.  No mouthsores, no vomitting and really just alot of dizziness and indigestion which is do-able.  I am thrilled with the wig I wear and ordered a second style for grins from TLC.  It is made as nicely as the one I got from a beauty salon and cost just $45.oo.  They matched my hair color so well.  I just don't want to look like CANCER when I'm up and around...even just at home seeing my reflection in the window above my kitchen sink.  If I look good I will feel better. I'm going to try to drive to one of those workshops as my complexion is pretty sallow.  Tell me, what are some of your favorite foods for the jouney?  A nurse recently suggested vanilla wafers, and they go down good.  Its weird how vulnerable I am to not even try to eat when it all burns going down.  Any one else had bad acid reflex?  I've been doing poetry writing when I'm too dizzy to read or sew.  My dog has given me some strange looks when I was mowing the yard and hanging on to stay steady."what's up with this woman?"  But activity does keep me more cheerful.  I like to dance around to oldies on the radio and pretend, only pretend I'm still a cheerleader in highschool.  My prayers go out to you gals and I'll commit to log on more often.  Gotta get over that hesitantcy to share when the days are bummers!  We are in this together and we will make to the finish line of treatments.  There's been alot of flu in our area so I don't do public much.  You travellers are BRAVE SOULS.  I want to go to my son's college BB games in IL in Dec.  Found a skull cap in his school's colors and I can wear my wig or halo with it. Hey, Walmart has some $3 fleecy caps that are perfect for sleeping in a cold room plus there are lots of colors to choose from.  You all have a good day!  and cut yourself some slack. We don't have to be productive.......we just have to be breathing!  arby

Scoobydoo

Arby - I live on prilosec OTC for the heartburn.  It really helps.  Normally by day 7 the heartburn subsides.  Sorry to hear of all your SEs.  They stink!  Havent had the mouthsores.  I use biotene toothpaste and that seems to have staved off mouthsores.  Also, while they are giving me the A tx I suck on ice.  I hear that is a way to stop moutsores from forming.  Its worked for me.

MarieK - I am actually in chemopause.  Had my last period the first day of first tx.  That was it.  I am now on 3rd tx so I guess its not coming back soon.  I am on neupogen for the same reasons you gave.   I started with 7 first tx, then 6 second tx and now down to 5.  My onc told me I may be able to forgo having any shots during T tx.

unklezwifeonty

Neupogen ~$300 a shot.

Neulasta ~$3500 a shot.

Per 1 AC cycle you need 7-10 Neupogen OR 1 Neulasta. The cost works out about the same if you need ~10 Neupogen. They are made by the same company Amgen and priced for extracting maximum profits. But Neupogen is also available as generic now so its price will come down further.

micheleboots

scoobydoo,

I was given freezies to chomp on during one of my shots...I guess it helped because so far no mouth sores.(knocking on wood). .  I think I will ask for a margerita next time....LOL

Here in Ontario Neupogen is $1300. My insurance only covers %80.  So my Dr. is only ordering it for the last three treatments.  But If I do need it I will get it fopr the other treatments..  Perhaps that could be my xmas gift this year from my family...Maybe Santa could put it in my stocking.

Keep laughing..

azdiva

Hi Gals!

Have a bit of a freak out today.  Not sure where to post, but you all seem like home to me.  I just went on that adjuvantonline site and put in my stats.  Bad idea.  I am just shaking.  See all this time I just figured I had plenty of choices but really I don't.  I'm thinking maybe I don't have to do tamoxifen.  I'm only 50% ER+.  I figured most will not have a reoccurrence.  I can be in the "most" category, right?  

It's that stinking Grade 3 tumor.  That really knocks my prognosis stats for a loop.  With chemo, with tamoxifen, I don't even get to 90 %?  Did I read that right?  And since I'm "only" 50% ER+, doesn't that mean its not as effective?  Or that it fuels the non-ER+ part?  And I had close margins.

Well now I just want to take/do everything.  Can I get a radical? Whole body radiation?  Herceptin, Zometa, Lupren, Zoladex?  Everything?

I really am the vainest person in the world.  I'm like that Star Trek episode where the guy is just a brain and nothing happens outside of my own consciousness. I know you all are dealing with this too.  But today it just hit me.  Don't know why I had to go look at that site.  

Sorry to unload.  Its been said before, and will be again, but DAMN CANCER REALLY SUCKS!

Laura

Oh and got my blood back - WBCs back down to 8.8 (down from 37 last week).  At least Neulasta didn't give me leukemia.  haha my attempt at humor 

unklezwifeonty

Laura,

What was your KI67?

azdiva

Hi Onty!

What is KI67?

L 

unklezwifeonty

It should be on your biopsy or surgical biopsy report. It shows the tendency of the tumor cells to proliferate. The higher the number the more the proliferative it is.

By the way, high grade cancers respond better to chemo.

unklezwifeonty

Dear Laura,

Lupron will put your ovaries to sleep temporarily. It is not to treat cancer.

Zometa helps reduce chances of bone mets. There is some belief it might help with all mets.

Herceptin is for those whose tumor have aplified Her2. Your tumor is Her2 -, so you won't get it.

You will get chemo and hormonal therapy (possibly Zoladex and/or something else). Your chances are actually very good.

MarieK

Well Ladies it's official - I am part of the BORG Collective (Star Trek reference).  I am bald and now have a plug attached to me!

PICC line went in smoothly all 45 cm of it!!  Let's hope it does the job and the infusion goes fast and without any reactions!

Laura I did the adjuvantonline too but I seem to remember that the stats were a few years old.  I believe that there have been changes to treatment made in the last few years. Which will make a difference and we will be the stats for that.

Besides that there wasn't any place to enter important info like; % of positive attitude, spunk, great support, loving family etc... which I believe really make a difference in fighting BC.

So I just ignored what it said...

azdiva

Hi again, Onty!

Doesn't say KI67, but the mitotic rate says >20/10 hpf.  Nuclear grade 3, tubular differentiation: poor.  The parts that sound "good" say no micromets, no angiolymphatic invasion, and no neoplasm at margin to within 2 mm, etc. haha

And if high grade cancers respond better to chemo, I better ask for a double on Wednesday!!

Starting to feel better.  I am usually good about medical stuff.  Had sarcoidosis a few years back, and just went with it.  Freakouts are usually reserved for things like my kids pulling their teeth out.  Why that ooogs me out, who knows?  At least I am pulling it together before they get home from school.

And to give you all my usual update - hair still on head, but still acting shady!  However, Mexico may not happen because DH is in Istanbul, and no one has committed to watching my kids!  I have not played the cancer card . . . yet . . . 

L 

azdiva

Hey again!

I did know most of those drugs weren't for my situation.  I just wanted to take the whole kitchen sink approach.  Hell, I'm considering rubbing progesterone cream wherever the mood suits me if it would make a difference!  Just pack me in a big sumo-suit of every single thing ever rumored to treat cancer!  Something's gotta stick.

And the one thing I DON'T want to do is give up my wine.  Maybe that's coming, but I will fight it with every fiber of my being!!

And I did not require any popsicles last night.  Not one!

L 

unklezwifeonty

No need to give up wine. Just limit it to no more than 1-2 drinks per week.

ReneeJean

Snuziq--sorry about the reactions you are having...no fun.  I hope you are feeling better today.  What does your oncologist say?  

Funny about the passport comment about living in McKinney....my entire family thinks we moved to a foreign country when we moved to Texas<g>.  I am 20 miles south of FW....in redneck country, Johnson County...LOL.  

valeriekd

Took my hair out of the hair tie yesterday and a HUGE chunk came w/ it. It was time. Got it cut to 1/2 inch by a friend and then shaved at the wig lady on monday. Moving right along.

I go along w/ the gal who says to eat PB at chemo to avoid nausea/ smell etc. Its good protein and it doesn't seem to have its taste altered as much. I get the smooth organic kind on home made bread - good eats. I think of you guys all the time - hope u r well -Valerie

piekarskijena

Thank you MaryNY

I'm new here I completed my first round of Cytoxen and Taxotere on the 15th and did pretty well. My scalp is itchy and hair hurts, afraid it will come out soon....Spoke with onco today after having shot to increase WBC BUT have had chronic neutropenia in the past. Very concerned bc/ onco said levels pre-treatment were under 900 and we need to address this once the "breast cancer treatment is complete". Had seen onco/hematologist in Boston who dismissed the low wbc count and enlarged spleen. Very worried about chronic leukemia and wondering if anyone had previously had low wbc counts/anemia prior to breast cancer diagnosis????

dx 7/26/09 double mastectomy ILC 1.0cm 8/26/09 /stage 1b/

grade 2/0/3nodes/estrogen+/oncotype 21

one-L

Valerie, I have packet the peanut butter in by bag and will try it tomorrow when I get my first treatment.  We are going to get me some ice chips before we go, so I can munch on that  also.  I hope I haven't forgotten anything.  I have so much I had to finally put it in a rolling bag, because it is so heavy.

I did wear one of my new scarves today, because I was tooooo lazy to fix  my hair and I really got lots of good comments.  So the scarves may not be so bad.  This one is already tied, and I have tons of  scarves that I will have to tie.  It will be an interesting journey.

Juannelle

unklezwifeonty

Good luck 1L.

azdiva

I SWEAR I AM NOT MAKING THIS UP!

Went to my nail appointment.  I know, I know.  But Dear Onc said I could!!  And believe me, I needed to get out for a little bit.

ANYHOO . . . It all starts so innocently . . .  Jackie (nail gal) asks how I'm doing (fine).  Getting through chemo all right (yes).  Did I do the walk?  (No, I was really tired.  I walked around the block.)  Do I feel any different with my boobs off?  (Uh, yeah.  I guess.  Haven't given it much thought with the 2d surgery and everything. Where is this going?)

And then  . . . she proceeds to tell me about her 5 clients who all had/have the breast cancer.  One who had it, and her mother had it and her sister mother (I don't know what that is.  Afraid to ask).  Mother fight and fight.  She do everything, but her body can't do anymore.  She die.  (WHAT?  Is this motivational?  I nod my head.  Very sad.)  Then she yells at me:  "As long as you don't do the hypnosis!  Don't do the hypnosis!"  (WHAT?  REALLY?  THEY DO HYPNOSIS FOR CANCER?  You just told me this mother died and, I'm not sure, I think the other ones did too or something like that.  Put the hypnosis in my sumo-suit.  I'm doing it.  Can't hurt.)  Then she grabs her armpit.  That's when I realize she means lymph nodes, not hypnosis . . .

I couldn't help it.  I just started laughing.  I almost peed my pants.  I told her I would try not to do the hypnosis. 

And my day's not over!!  

Laura 

one-L

Thanks Onty.  You are so encouraging and have such good things to say.  I really appreciate you.

Juannelle

Scoobydoo

1L I will be thinking of you tomorrow.  You are in my thoughts and prayers.  I am sure all will go well.

micheleboots

Good luck 1L...I'll send good vibes your way...As well as anyone else taking the ride tomorrow..

Michele

one-L

All of you are so great.  I don't know how to express what you all mean to me. It is strange how friendships can be made over long distance and just chatting, but I know you understand more than anyone else.  Thanks for being there for me.

Juannelle

unklezwifeonty

Just don't your shoulder from carrying that heavy chemo bag :-)

one-L

It is on wheels and my DH is going, so he can carry it for me.  By looking at it you would think I am going on a long trip, 3 or 4 days anyway.  I will find out what I really need and adjust for next time.

Juannelle

unklezwifeonty

lol