January 2012 chemo

Lumpynm~I have always had good veins..my ONurse says I have veins the size of canons.  Even after the second infus. yesterday I have no discomfort in my RT arm, the arm that NO nodes were taken out of.  I have extreme pain from pricking my finger for the blood work before chemo, and they said they will not do that again and use the Pipe line they install for the Chemo to get the blood next time.

They did stick me on an antibiotic for the next 6 days as I have severe Nasal inflamation and they want to make sure I haven't gotten a head cold already. 

Karen ~ We go back to Sloan Kettering for my shot the next day (today)... Sloan had checked this out before we even knew, and made us aware our Horizon plan had a cap on prescriptions (never needed to know that till now) we were told the cost was $8,000. a shot..it could have maxed out a prescription plan...Going back to the facility bills it out differently-not as a prescription ...we chose to go back to be safe and it is only 33 miles away...and my nurse can check me out...makes me feel a little better to hear "really, your doing great, this is all normal" before the weekend starts.

Momof2inME~A First couldn't figure out yesterday if I was more anxious the second time or the first time ...Fist was the unknown and second was the Knowing what was coming...But during the infusion I was definitely better on the second (and I opted for NO Ativan this time) I asked more questions, I have better pain killers now, I know when the SE's are going to hit...I am ready and better prepared this time, I have more confidence, I will take those pills faster instead of waiting for it to get bad, I had to dig and find a lighter/brighter side...Don't get me wrong I'm not made of stone, I started to cry (emotional reasons not pain) after 5 minutes in the chair, and the last session nurse came over smoothed things over and I was fine after that....It's the bits of kindness and compassion that I receive...that a latch onto and hold & expand...I get those bits on this board too...
I need this board~feels like a secret Hug, and...."I'm not a Hugger"
Barb

Momof2inME~I can do Internet Hugs!!!

Trivial information ~I found out that Longhorns Steakhouse is the slowest 1:30-2:30 pm M-F...our new brunch time...love my steaks, when I have those good days.

I guess I'm confused about Rads... I had BMX with TE reconstruction. My surgeon said "no radiation, there's nothing to radiate! I got great margins and there's no nodal involvement!" he was adamant. My MO, when I asked her said, "I don't think so, but, I'm not a radiological oncologist, and you have the right to an opinion from one.... So, she referred me (twice as it turns out, couldn't stand the 1st guy). Long story short, even with great margins (they both agreed to that), and no nodal involvement. They explained that my Low Oncotype score (16) is for Distant recurrence, not local recurrence, and since I'm "so young" (43, hahaha, don't feel so young) and tumor was larger than 2 inches, the protocol is to at least do rads to the incisional scar, bring down my 10 year local recurrence rate of 15% to under 5%....

My MO said that she totally agrees after hearing it explained that way and is glad she referred me to the head of this well respected group. Interestingly, one of her colleagues, a male MO, went thru BC a couple of years ago and also agreed to the incisional scar radiation. My cancer was on the right side, so I'm less worried about heart issues. I do have a lot of time to decide... Wouldn't start until a month after Chemo....

Sorry Char I bet that is frustrating. Thanks for letting us know your update, I know how you feel about the negative status. I was the same way when I found out. I still got rid of both boobs but that was before I did the test. My situation was a little different though. My left one had to go, and I am young enough I wanted two boobs that looked the same.

Thanks Nancy for posting all of that! What a lot to do! 

Not sure if I mentioned this already but after reading the posts about hair coming out and the uncomfortablness of it all, I've decided next Wed (day 14) I will shave my head. Between school, kids, house, homework, I just need to not worrry about it anymore. I appreciate everyone's honestly and openess about their hair loss experience. It makes it less scary.

School is Fabulous! I absolutely LOVE my classes and my instructors are so good, The material is so intresting to me. Now I can't say that about next fall. Blah! Biology and such are not my thing. So something in me knew to take classes I not only enjoy but am good at.

Screw this chemo and this cancer it ain't gonna stop this girl!

Hi Char I'm sorry about the WBC... It's so cold here in Northeast PA and we're supposed to get snow tonight and tomorrow. Maybe your husband can order in from the restaurant you were going to and you can get cozy and watch a movie?

I know it's frustrating... I have 3 boys 16,9,7.... It's so hard staying away from kids parties, basketball games, the carpool. I feel like a hermit. But, I'd rather I have to do this in January and Feb than in the summer... This too shall pass... Hang in there!

Shell-Seeker: the standard treatment regimes for Taxol are either 3 infusions that are done once every 3 weeks or, the newer regime which is the same amount but spread out as 12 infusions done 1 weekly.

Technically these really both take the same amount of "time" ie: 12 weeks from first in the body to finally flushing out of the body entirely.



The second lower dose more frequent regime is becoming more popular due to recent research that has shown less side effects with slightly better chance of not getting any more cancer occurring afterwards (progression free survival).



Hope that helps :-)

ely - made the change, thanks for catching that!

So, what is everyone doing for sleep caps, or cotton caps to wear under wigs?  I have only been able to find these knit wigs caps that remind me of pantyhose, and they might be nice under the wig now, but I don't know if they'll be a good enough barrier when the hair is gone and the scalp is sensitive.  I don't even know where to begin looking for something - wish I had time to just make something!  Thanks!

NancyHB - go to www.tlcdirect.org - it's from the American Cancer Society. I haven't ordered anything there yet, but picked up a catalog from my MO's office. I also have a friend/BC survivor that got stuff from there. They have some sleep caps that I want to get and a few other things. I picked up a sleep cap from a local wig shop, too.

Jenn, Thank You for helping me understand that. I totally get that now. Sounds so much better that what I was thinking.

Well here we are day 14 and while at my post surgery check up, I reached up and pulled a plug out of my head. It's coming out in clumps of about 20 hairs at a time. If I dont touch it, it stays but I think it will have to go this weekend. Gosh this is hard. I have heard "It's only hair" like 100 times, I think I will be fine when its done and over with. My head is getting very sore.

My sweet sister sent me a day 14 bouquet of pink flowers.

Heres a easy scarf idea. I wanted some casual bandana type scarves but the actual bandana is too small so I went and got some material and made 36 inch scarves. You can stitch the edges down or use stitch witch with your iron. I didnt prewash material but should have. Also cut the salvage edges before folding over to make square. The lady in the fabric department can talk you through it. It takes one yard if you want 36 inches. You could do 32 in. or whatever you like. I made 8 for the price of three in TLC catalog. TLC had some real cute ones though and the are fairly priced.

My chemo lounge at the hospital always has free hats and wraps. I will donate all of mine after too. Maybe even on here as unfortuantly there will continue to be new groups until a cure is found. Maybe someone will need all of my stuff.

A big thank you to everyone on this board.  I continue to read it all when I can.  I'm sorry I was so freaked out the other day over the cost of all this.   I've decided I will fight this like crazy and do all I can to get better.   I had chemo school today.  Thanks to this forum, I knew what to ask and understood all she told me.  Our facility is one large room with about 20 infusion chairs, big screen tv, and it looks out on a pond (snow covered at this time).  There are always three nurses in the area at any given time.  I even got a free wig that I can play around with this weekend to see if I like it.   

My chemo is now changed to start on Thursday, February 2nd.  I'll get my shot on Fridays.  As for trying to work during chemo, I've finally accepted I cannot plan this like a schedule and have to go with the flow and just wing it to a great extent.

On the plus/negative side, the workers at my place of employment just went on strike today...first time since 1960.   IF I was working, I'd have to park a long way from the entry, cross a picket line and be concerned about the conditions and emotional stresses that go along with that.  So, it's sad for the workers and the company but good for me that I don't need to be going to work just now.

Again, a big thanks to all of you. 

Speaking of youtube, Someone on the stage4 board posted this video.  It is hilarious.  If you need a laugh, take a look.

http://www.youtube.com/watch?v=0_7JJrU9HUg&feature=youtu.be

Hi ladies, I'm on the beginning in Dec thread but just wanted to drop by.



Kim I'm on AC also, and have shakiness for at least a week betwwn txs. Usually worse upon the morning.



grateful, I mentioned the same se day of tx. My first time I was so concerned, also drank 3 liters and when I wasn't peeing, very upset. But up all night. Mardibra on the Dec thread said her nutritionist said it was not unusual. I just had my 4th AC yesterday, drank a ton of water and even asked for extra saline and the same thing happened so I guess it just happens to some.



My nurse coordinator had suggested asking for extra saline and I dont know if it's only psychological but it makes me feel better and I've gotten it each time.



Feel well and have a good weekend all.



Laura

CJRT - thanks for the info.  I had heard Carboplatin bandied about, but didn't know much about it, and didn't realize it was used in conjuction with Herceptin and Taxol or Taxotere.  By the time we're through our treatments, we could all become medical professionals!  :-)  Hope you feel better soon, too

Going to dig myself out of the driveway and head 60 miles east to school; luckily my afternoon class has been cancelled so I'll be able to come home early and nap.  Except for being tired, I really don't feel much else, but it's still early (day 2 post-AC) so I'm waiting...waiting...waiting...  Might be constipated, but will wait until later today to decide if that's the case, or I'm just not eating enough.

I thought about taking this semester off of school but because of the graduate school rotation I would actually have to take an entire year off - something I don't want to do.  Additionally, I'm the graduate assistant for the MSW program, so they pay my tuition and give me a stipend that has, so far, helped with the medical bills. Luckily (or not so much, really), those I work with and my instructors have all been touched by breast cancer, some personally, so the accommodations they are willing to make will make this time so much easier.  Another blessing.

Stay warm and dry and safe today!!

Hi Char- my lower back pain didn't hit me until day 5 after the Neulasta shot last time. This time, I'm trying the Claritin trick.

Today is day 3 after my 2nd TC treatment. No nausea, but woke up able to feel every square inch of skin on my body-- kind of like "sore to the touch" it's odd. I think a massage right now would be painful. Put my wig on for the first time today...so sad. Feel bad that I kind of snapped at my baby Cooper (7). He asked me 3 times to take it off and show him my head. I did it cheerfully the first time, so he could see it's just me, then tearfully the 2nd time, then the third time, I snapped, "no, I'm not a circus act!" oh boy. I hate cancer.