Starting Chemo May 2008

Wome,n

As far as Gracie's newborn grandchild (congrats), we all look like newborns...at least I do with all that extra flab hanging about. Seriously, my son is monopolizing the computer tonight so hardly any time to write. I'm on for Thursday with you Christine . . .and KristyAnn, congrats on getting home. We will continue chemooooing together as my last chemo is scheduled for 9/4 and my herceptin (methinks) will be once every three weeks as well. Meanwhile, wrist braces and meds continue to keep me happy....loved Noelle's river message. Jen, hope is goes well tomorrow. FINALLY,

because both Rock and Linda visited my blog, I put a tribute to all of you there. Find it if you wish (no pressure) but I had to share you with my other community....just google eddie westerman and it'll take you there. Love you all, but I am being forced off the computer by my older son. 

Nod to Eddie about the newborn thing.

 I think I blogged about that a few months ago when all the idiots were telling me how healthy I looked during AC. I said ya, of course I do, my face is red and puffy and my eyes are bright from the steroids and drugs and I have no hair... just like a newborn! So, why wouldn't I look healthy!

 ;p

Today my thought about those same comments was .. if I look "great" with no hair, no eyelashes etc then how much better did I look when I was really healthy with hair???? Should I ever trust any of these people ever again when they say I look "great" a year from now??? 

I am googling you now eddie, and then off to bed.

 Noelle

 P.S. Wasn't the river story by Sue? I know I was in the story but.....  

http://noellesbloggybits.blogspot.com/

chemoooo! 

O.K., glad I scrolled back...

Rock - How did it go with the ovary doc?  What's the word?

Jen - Any word on your results - was it a biopsy?  (O.K., I just read it 5 seconds ago and now I can't remember, if that's not chemo brain...then I'm in deep *bleep*).

Sue - WOO HOO, GIRL!!  Are you doing Herceptin?  You won't leave us, will you??  I'm having separation anxiety already...

ROLL CALL (as of Monday PM)

Tuesday - ???

Wednesday - Mary/Roxi (T #3)

Thursday - Jen/Sable (T #2); Eddie (T #2); Cristine (last C/C - no more nausea, yay!); Sue (last TAC - YEE HAW!!!)

Let me know if I missed anyone!

Just a quickly note before I head out the door for work, doc appts and a hit on the bookstore.

I'm thinking of you ladies who are in pain and have bad se's today. I'm wishing for you that it let's up quickly or that you at least find something to ease you pains.

Welcome home kristy! I'm glad to see you are doing better.

Zooooooooooooooooooooooooom out the door cause she is close to being late.**

Tamara,

Everyone is different, but I did find the se's to be cumulative.  The fatigue, the bone pain and the nausea.  The hand/foot neuropathy--I myself have had NO hand symptoms, but the foot stuff: both of my big toes are numb down to the second knuckle, and I just had to stop wearing heels this week because the balls of my feet hurt.

Cris- I am HER negative so won't be doing herceptin.  I will be doing radiation.  And I will not leave you.  (Are you kidding?  You know where the shovels are buried!!) I'm thinking we could all stay together on this thread no matter our treatments.  I don't know about any of you, but you have all given me such encouragement, support and strength, all while making me laugh out loud at least once a day (which I believe lengthens your life span)!!!   No, I'm not going anywhere.

Hope everyone has a great evening.  Long day for me tomorrow, I'll go in at 6 a.m. and stay until 5 p.m. when my Aunt Charlotte's flight lands.....I can't wait.  She is so sweet, she is a retired nurse, and let me tell you, she has some stories!!!  Then my SIL is coming on Saturday...

Sending you all happy, no-pain vibes.

Love,

Sue 

Noelle,

You curly-locked beauty. Loved your blog. Will visit again soon.

Jen, and yogurt too. Don't forget the yogurt. Can't wait to party with you on Thursday. Where shall we go? Cristine? Sue? Got ideas? I would love a walk in the woods somewhere...a place where we can smell the pine trees...perhaps even here in our Washington Cascades? Or to the Oregon coast where the beaches are nice and cool, but sunny this time of year. Mary/Roxi, hope all went swimmingly well today.

 Hey, just for grinnies, I now have some kind of rash on my arms, legs and face. I am thinking it is lotion related. it burns. It is slightly bumpy but not really hive-ish.....I am taking no chances and put myself on benedril for now. Plus, my conjunctivicrapis is back in my eye but I have drops. I am worried about taxol #2 as it is paired, the following day, with herceptin. My feeling is I get through this one with no allergies and I am home free in terms of finishing the next two. Geez, what a trek these last two weeks have been. 

Kristy Ann, welcome home and take it easy. Bummer about chemosetback but there is light at the end of the tunnel. Roc, ovaries? What's the scoop? Hope you are all weathering well. Talk to you all soon. My cousin is coming from BC (British Columbia, not breast cancer) tonight to hang for a couple of days. Ciao

We were out trying out DH's new toy..his GPS.  Headed to the local state park and as we were leisurely driving through the park we passed this sign.  I told hubby to back up...this is what I see.

Now keep in mind...I really did ask the chemo nurses when I went through chemo education if I could just go out and find one of these trees and hug it...you know...bypass all this crap.

There is fencing around this tree and me being the anally (sp?) law abiding citizen that I am, wouldn't climb over it.  I have to work on that..........

Adrienne!!!, we get cool close up pics of the tree and of you! 

 I hope everyone is having a good s/e day.

 I am in a crabby mood. Waaaaaay too much to do to get ready for this cursed festival. I feel like I am in a movie and everyone was right....  I am cured and everything will be back to the way it was. I am overworked, overtired and not handling it. I have too many balls in the air and if I drop any things won't work out.

In MY movie I have a few more weeks of time after chemo before things get nuts. 

 aaarhg!

 chemoooooo!  

N 

hi, I'm new at all this.  Just had my first onc appt. this afternoon.  My head is swimming with confusing terminology and scared to death about ports, chemo drugs, etc.  I doubt anyone is still up but just thought I would try.  Sounds like I"m starting chemo in two weeks.  Any suggestions??

 jdpeaches

JDPeaches -

Hi, sorry you had to join, but welcome to the group/club!  Have they told you what your treatment protocol will be?  I don't know how specific I can, or should be, since I don't know what chemo  you'll be on, but I can at least share with you my experience so far.  

I was diagnosed in mid-February, had surgery mid-March (wide lumpectomy with axillary node dissection). Immediate margins were clear, but my surgeon had taken a couple of extra samples, & they found "islands" of cancer cells in one of those samples, so I went back (early April) for a wider lumpectomy ("re-excision").  My original tumor was approx 4cm x 3.4cm by 3cm (give or take, I don't remember off-hand - but fell somewhere within "stage 2"), and I had enlarged lymph nodes in my armpit.  My surgeon was leaning towards a sentinel node biopsy at the time of the original lumpectomy, but the oncologist & radiation oncologist (both of whom I'd already met with) both seemed to feel that I should just have the lymph nodes removed, given the size of the tumor & that the biopsy indicated my cancer is/was grade 3 (refers to level of cell differentiation & aggressiveness, with grade 3 being the poorest differentiation & most aggressive).  Plus a good friend who's an oncology nurse also suggested removal.  So that's what we did.

I had a port inserted during my 1st surgery, and I strongly recommend getting one if you'll be getting chemo for more than 4 or 6 treatments or so, especially if you have weak &/or skinny veins.  My port turned out to be picky; it will accept infusions without any problems, but it doesn't like to give blood, so they've had to revert to drawing blood from my arm or hand (to run the labs) & use the port for the infusions.  Since the needle they use to draw blood is slimmer than what they'd have to use to place an IV, it's working out ok.  Most ports aren't so picky, & are used both for the blood draws & infusions. 

I started chemo in mid-April, 11 days after the 2nd surgery.  I began with 4 dose-dense ("dd") treatments of Adriamycin & Cytoxan ("AC").  (Dose dense, for AC anyway, means treatments every 2 weeks instead of every 3 weeks.  It can be tougher on your body, since you have less time to rebound & feel better between treatments, but you finish up sooner, & it's believed that dd treatments give the cancer cells less time to rebound & grow back, too.)  AC is reported to be one of the toughest protocols to be on, although the various drugs to deal with side effects are amazing.  ---> One important note about Adriamycin: It can cause mouth sores. Many people suggest sucking on ice chips (or popsicles, or similar) while you're actually getting the infusion; this was recommended to me, & I did it for all of my Adriamycin infusions, & I never had any mouth sores.  Many places will provide ice chips for you. (Some oncologists will say there's no conclusive evidence; my advice would be that it works for so many people, so do it anyway.) <---  While on AC, I took Emend at home before treatment, & again the next 2 mornings.  I was given Decadron (dexamethasone, a steroid), plus Aloxi (another anti-nausea med) by IV right before treatment, & I took Decadron by tablet the next 3 days at home.  I also had prescriptions for Atavan (anti-pain, anti-nausea, & anti-anxiety) and Compazine (anti-nausea), but I only took Atavan once, & Compazine only a few times during the first two cycles. (Both can make you drowsy; the Atavan pretty much knocked me out & left me feeling drugged for a day or so afterwards, and I didn't even need it, but took it the night after my first treatment at my friend's suggestion - plus they'd put it in the IV that morning before treatment, which I requested they not do again, & it turned out I never needed it.)  I was very fortunate in that I never had nausea, only some moderate indigestion from time to time that were taken care of by OTC meds.  AC, as well as some of the other chemos, can cause significant drops in your white blood cell ("WBC") counts, so typically, patients either go back (generally the day after treatment) for a shot of Neulasta, or self-inject Neupogen at home for a number of days between treatments.  Both Neulasta & Neupogen cause your body to produce more WBC's, and both *can* cause bone &/or joint pain, anywhere from severe to moderate, or even non-existent.  I had to inject myself with Neupogen for 8 days out of each 14-day cycle (cycle = length of time from one treatment to the next).  I need to tell you that I am a total wimp & wuss, & very squeamish.  I did not expect to be able to give myself the shots, so you can imagine how surprised - more like shocked - I was when I gave myself the 1st shot, and not only didn't find it painful or difficult, but I hardly even felt it.  I was also fortunate in that I had no bone pain to speak of, only 2 times when I had minor achiness, which was easily managed with one dose of Tylenol (extra-strength) or Aleve.  I finished the AC in late May, & was scheduled to start on Taxol & Herceptin 2 wks later, but postponed it due to my mom's death & her funeral out of town.  Postponing it was one of my better decisions.  Since side effects can be cumulative, & my worst side effect with AC was fatigue, I crashed for about 10 days starting the day I returned home after my mom's funeral.  That was my lowest point - physically, mentally, & emotionally, at least for that length of time, since this whole ordeal began.

 So, I had my first of 12 weekly treatments ("tx's") of Taxol plus Herceptin, on June 9.  Either or both of these can cause allergic reactions, so they give you Benadryl by IV before they start.  (Keep in mind, though, that procedures vary from doctor to doctor.)  They also had me take 20mg of Decadron the night before, plus another 20mg of Decadron as well as Zofran (I forget the strength) 2 hrs before my appt.  When everything went well, they told me to drop the Decadron to 8 mg each time (nighttime & pre-treatment).  I did that for the next couple of tx's, & lowered it further to 4mg each time (which is only one tablet) each time, so I'm not going any lower even though I still have no reactions.  They also gave me 50 mg of Benadryl the 1st tx (in 2 increments of 25mg each, once before the Taxol & once before the Herceptin), but have only given me one 25 mg dose since.  This is partly because, on this protocol, the first Herceptin tx is much larger than for subsequent tx's, and partly because I had no allergic reaction.  Taxol generally causes much less nausea than AC, & I've had no nausea, & only rare indigestion.  Taxol *can* also cause bone &/or joint pain, again, anywhere from mild to severe.  And again, I've been fortunate that, so far, at least, I've had none.  Today was my 7th tx out of 12, & my worst problem continues to be fatigue, but it's not as bad or disabling as the fatigue I felt while on AC.  Other potential side effects include neuropathy, and/or hand-&-foot syndrome - neither of which have gotten me (at least not yet!).

Once I finish the current 12-tx program of Taxol & Herceptin, the Herceptin will drop down to once every 3 wks til I've been on it for a year (est mid-June '09).  Also, I'll have radiation, 33 treatments, 5 days/wk for almost 7 wks (during which I'll continue to get Herceptin tx's).  Once radiation's done, I'll start on some hormone-blocking therapy (to be determined at this point) which is generally taken at home for 5 yrs.

 Both Adriamycin & Herceptin can cause heart damage, so they don't like to give them together.   Typically someone who gets both of these will be sent for periodic scans, either an EEG or a Muga scan, which is more involved but is supposed to show more detail than the EEG.  I had a Muga scan before I started chemo, a 2nd Muga scan after I'd finished my AC tx's & before I started the Herceptin, & I'm due to have another one soon.  Herceptin is only given to people whose cancer is "HER2" positive.  Hormone-blocking therapies are only given to people whose cancers are estrogen &/or progesterone positive.  I happen to be "triple-positive", which I guess is fairly unusual.

One very important thing to keep in mind is that each person's experience is different, even with the same chemo & same drugs to handle side effects.  I was terrified before I started.  It seemed to me that I saw so many horror stories, & so few reports of tolerable/manageable side effects (let alone reports of none!), that left me quite anxious. You'll find tons of support, understanding, & encouragement here on these boards. Don't be afraid to ask questions!  Also check out some of the other threads (The Road to Hell, and Whining, among them) for some much-needed relief.

 Well, I've gone on alot longer than I anticipated.  I hope that at least some of what I've rambled about is helpful to you!  Please feel free to ask more questions, either here or by private message, if you'd like!

 Take care & let us know how things go for you!

Susan 

This'll be quick . . . Gracie, congrats on the new grandchild!  That's so exciting.  I hope you're getting in lots of quality cuddle time.  (Wouldn't I love to be holding a baby right now, smelling its little head, checking out those tiny feet . . . ?)

Loved the Pacific yew pix.

Rashes and conjunctivitis and yeast infections . . . yuk!  My gripe is that my fingernails hurt.  It seems, I don't know, almost gratuitously insulting: my fingernails?  Can't you leave my fingernails out of this, Mr. Taxotere?  They don't look funky, but they're hypersensitive.  Typing - ouch.  Dialing a cell phone - ouch.  Prying the tiny cap off my vial of Neupogen - double ouch.

Good luck to the Wednesday and Thursday chemooooers.

Linda

Hi Peaches, glad you found us. There are 'starting in August' groups for sure. I bounced around groups a lot until I found the peeps I liked. Susan gave you good advice, but be sure to poke around the site and you will find lots of answers.

Linda, my fingernails are a mess. They are trying to separate from the nail bed now, but I sympathize with the pain/ sensitivity. 3 weeks out, they are better in the AM, but after a day of typing they are messed again.

 Chemoo! to each and every one of you! 

Noelle  

Hi all,

Susan, I have a question. I will be getting taxol and herceptin after I finish AC too. But I see a lot of people getting 12x.. I will be getting Taxol and Herc. 4X. then of course continued herceptin. Do you know why some of us get it 4X and some 12X? Seems so different to me.

TY

Laura