June 2011 A/C & T Groupies Unite!

Kat - I've heard of nail problems with the different "T" chemos.  So far, mine seem to be OK but I've kept them polished so I probably wouldn't notice any color changes.  I was worried about losing a few; but so far, so good.  That must be painful!

No power for 4 hours here in southern NH.  A good part of the area is out, a transformer blew across the lake from us.  I have 2 laptops, an Android tablet and an Android phone.  It will take a while before I'm off the grid...LOL!

Michelle

My nails have been fine so far.  They usually grow fast and strong and it doesn't seem to be any different right now.  I do have a little problem picking at my cuticles.  I KNOW I shouldn't pick, but I do.  They are taking a little longer to heal, I think.  

Twistedsteel - sorry you are struggling with AC.  I think there is something to be said for doing that first so that you're not "worn down" by the time you start.  I didn't have any nail problems with AC, but I have heard of them with Taxol and Taxotere.  I didn't really have any neuropathy with AC, either.  As far as vision problems, my only problem has been that I have had to wear my glasses rather than contacts - my brain didn't want to do monovision. 

BobbieJo hasn't posted in almost two weeks.  I wonder if she went back to work - I think she's a teacher.  If she's doing AC and teaching, she's probably wiped out at the end of the day, even under the best of circumstances.  

I have Taxol #2 on Wednesday.  I am going to request less Benadryl, I was really loopy after that pre-med.  Maybe I don't really need the whole 50 mg.  We'll see if the Onco PA will be flexible.  My two daughters are accompanying me, and one of them thinks it would be funny to video a mom who might be slurring her words and seriously wanting a nap...lol.   

How is everyone else doing?  Check in with us and let us know that you are hanging in there.

Kat - we got our power back sometime between 6 and 8:30 last night.  We met our kids and grandkids for Chinese food and the power was on when we got home.  It was a big outage - we could tell power was out for several miles when we drove to the restaurant.  Hope your brother has power now...I just heard that National Grid still has about 30k customers without power.

Hope everyone has a good week with manageable side effects.  We are all getting closer to the chemo finish line!

Hugs,

Michelle

I'm in the hospital. Dropped an umbrella stand on my foot Friday. Went to chemo, then to the ER. It's not broken, but it feels if, and it looks broken! Saturday night I was admitted with bacteremia. I had 103.3 fever, chills, aches. I feel a little better. Bob had to drive home during the hurricane, and we did not have power for 2 days.

Oh Rose!  That is not good at all!  I read on another month's chemo discussion thread that someone ended up in the hospital after getting a blister on her foot.  You just can't ignore anything when you are going through chemo.  The good news is that we are all getting closer to the end.  I hope that you are out of the hospital and on the road to recovery very, very soon!!!  And Bob is a trooper!  Give him a hug from all of us!

Michelle

OMG Rose!  I'm hoping and praying for your quick recovery!  Hope you're getting better.

Someone asked about vision problems.  I have definitely noticed some of that.  To add to the fact that my eyes burn all the time, I can no longer wear my glasses and they have any benefit at all while I'm at the computer.  I actually just noticed that last night (or the day before - can't remember).  Sure hope that gets back to normal.  I don't wear them all the time anyway, but they did help when my eyes would get fatigued from glaring at the screen all day.  Now they don't help at all.  Wait, didn't I say that already?  Geez.

So glad to hear that you East Coasters are OK. Looks pretty scary out that way with the flooding. Had my last A/C treatment on the 22nd. Felt really good and think i over did it. Felt icky and nauseated Thurs. thru Monday. Start Taxol on Sept. 12 for 12 wks. Losing the nails thing freaks me out. But if it doesn't hurt than, ok. What are you guys talking about, Burning Butt?!?!? what is that about? So, is Benadryl standard procedure with Taxol? So do you think you are more succeptable to germs and infections when on Taxol? Because you take it weekly and your body has no time to build up your cells again? Does this mean i need to be more carefull than i was on A/C? The kids are going back to school and i am freaking out about them bringing home germs. I can't believe you girls that are working in the scary germ infested environments!!! How do you do it? my ONC. made me feel like i really had to be paranoid and not put myself in public places where germs are and also paranoid about what i eat. Am i just a weinee or what?!?!? LOL

Regarding pre-meds for Taxol, I found this:

All patients should be premedicated prior to TAXOL administration in order to  prevent severe hypersensitivity reactions. Such premedication may consist of  dexamethasone 20 mg PO administered approximately 12 and 6 hours before TAXOL,  diphenhydramine (or its equivalent) 50 mg IV 30 to 60 minutes prior to TAXOL,  and cimetidine (300 mg) or ranitidine (50 mg) IV 30 to 60 minutes before TAXOL

Note that I am getting just 6 mg of decadron PO 60 minutes before infusion.  I do get the Benadryl and the Pepcid (I think that's the ranitidine).  I'm going to ask for less Benadryl - that stuff made me slur my words...it was like being drunk!

Dosage is dependent on weekly, dose dense, etc.  I'm getting 225 mg, which is the DD amount.  Here is a quote from the drug prescribing information regarding standard every 3 week treatment:

For the adjuvant treatment of node-positive breast cancer,  the recommended regimen is TAXOL, at a dose of 175 mg/m²  intravenously over 3 hours every 3 weeks for 4 courses administered sequentially  to doxorubicin-containing combination chemotherapy. The clinical trial used 4  courses of doxorubicin and cyclophosphamide (see CLINICAL STUDIES: Breast  Carcinoma).

I'm guessing the weekly Taxol folks get 75 mg.  Someone here can probably confirm this.

Thanks, Kat!  I am my mom's POA and my sister, who lives literally five minutes from my mom, is 100% uninvolved.  And she hasn't called me, checked on me, sent me an encouraging email, nothing really so I know where she stands.  I've got 4 kid, lots of friend, and everyone here.  I've given up on her.

 Drinking my quota of water and other liquids today.  And I'm going to reclaim my living room.  We brought in a ton of stuff from outside so that it wouldn't end up in the lake.  And my living room is not very big, so it's pretty ugly right now.  And you can imagine, spiders, dirt, whatever was in the plants or on the cushions...we just brought stuff in as quickly as possible.  So now it all needs to go back where it belongs!  I might not feel like doing it for a few days after tomorrow.

Michelle

Michelle, I feel like the old lady when I read about all you do!  But I am not generally a high energy person.  My mom has always been a high energy person, so I've always seen it in action.  It's actually a bummer to see her struggle with her knee operation from earlier this year.  She can't stand being still, not working in her yard and she's relapsed a couple times.  This last time pretty bad and is now on crutches and I think finally taking her recovery seriously.  I know it's all relative, though.  My girls are young and are little energy vampires, so I just need time every day to recoup my energy!  I took them shoe shopping yesterday after school and I needed to rest after that.  My 10yo only had one pair that fit her!  Thankfully those were here school shoes.  I got my 7yo new school tennis shoes and I need to take her today after school for some Twinkle Toes (who knows what I'm talking about?).  They just keep growing!  

Julee, sorry; that was me talking about my hot butt.  After the first Taxol I had dramatic SE's, one of them constipation that quickly changed soft stools that were very irritating, burning.  I didn't have the same trouble second Taxol.  It's all doable.  Don't be scared!  It seems with taxol you don't quite know what you are going to get.  I haven't taken extra precautions with being around sick people, but I'm also a stay at home mom, so I can be around who I want to be around at this point.  I had a blister on my foot and did NOT end up in the hospital!  It is taking a little longer to heal, but is just fine.  I will say that since I had my surgery, and then chemo, I've been much better about keeping things clean, more handwashing for me and the kids.  I go every two weeks for my taxol.  Oh, I did skip taking my kids to the children's museum and places that are pretty much germ fests.  To me it's just temporary and I was too fatigued anyway to navigate the crowds.

Bobbie Jo!  Good to see you.  AC is such a butt kicker.  You just lay down in the nurses office if you need too!!!  

Rose, what an ordeal.  I hope it's all getting better.  

Michelle (again) what a bummer about your sister.  That stuff is hard.  I'm a little surprised to not hear much from most of my in-laws.  My own sister has been awesome for me.  She has gone to all but my first infusion, and will go to my last two.  And then has had my kids on my dog days after infusion.   I'm 'rewarding' her by taking her with me as my caregiver for my next surgery in New Orleans.  I know hubs wants to go (he went for my first one), but my sister and I are going to play a little before my surgery!  

Tomorrow is Taxol #3, so today is vacuuming the house and whatever other housekeeping extras I can manage.     

Ok ladies. I learned a little more about how they calculate dosage for Taxol (and probably applies to other chemos).  I am actually getting 270 mg or thereabouts every two weeks.  The dose is calculated using your weight and height.  It's so much per square meter of your volume.  So a bigger person would get more, a smaller one would get less.

Cannot believe I was able to form and post that thought!  I'm under the influence...but only 25 mg of Benadryl this time.  They automatically cut it down for subsequent infusions if you tolerate the first one well at 50 mg. 

I'm gettin my Taxol now. My two daughters are here (but they went out for lunch) and we are having a good time.  We're a loud, rowdy group and I hope the poor guy across from us is a deep sleeper!!! 

Michelle

I just got home, too.  My WBC is 3, having dropped from 9 (they didn't think I need Neulasta on Taxol).  I'm getting the Neulasta shot tomorrow.  I don't want a low WBC to delay the completion of the last 2 treatments, I want to be one day PFC on 9/29!!! 

I didn't sleep - my two girls were with me and the conversation rolled the whole time and we played cribbage for a while.  We are talking about planning a "movie" experience at the next session, with popcorn and Milk Duds!

Justme1 - I take Acetyl L-Carnitine with Alpha Lipoic Acid (it seems I can only find a combination drug).  I take 1 pill 2 or 3 times a day (if I remember the lunchtime one).  I'm taking L glutamine - 500 mg pill once a day, and B-6 once a day.  I put these pills in my dispenser because I'm already on a whole slew of chemicals - it all just happens twice a day.  So far, I have just the slightest tingles in my feet, nowhere else.  Is it helping?  Hard to tell because I am not going to go off this stuff to find out what happens...until September 29 when I am one day PFC!

I don't think there is anything you can do to take to prevent the WBC from tanking.  Usually the whites recover during the 3rd week in a "normal" chemo cycle of once every 3 weeks.  For DD or weekly patients, there is not enough "off" time for the whites to fully recover.  That's why Neulasta is given after DD AC.  My Onc PA said that Taxol is not supposed to make the whites drop significantly, but I have to say that mine dropped a lot.  I was pretty insistent that I get the Neulasta shot this round.  And my next one will go up to 20 or so if the cycle repeats itself, and I should stay high enough to cover the very last treatment.  That's my plan and I'm sticking to it!

Still a little woozy from the Benadryl or one of the other pre-meds.  I don't know how anyone would feel safe driving themselves home after chemo, and yet I know people do it.  I would be an accident looking for a place to happen!!!

Michelle

what does PFC mean

Post Final Chemo...or for some people Post F#$#ing Chemo!

LOL I DO AGREE WITH PFC