April/May 2012 Chemo hang out

barbyjean- Thanks for the encouraging words.  I'm scheduled to start April 24-- 6 rounds every 3 weeks of Taxotere & Cytoxan.  Glad you shared your personal experience since it helps all of us, especially me.

Melrose, not the same day but close! Sounds like you got everything taken care of. Here we go....

HI.  Just got my oncotype results (27--high side of intermediate) and met with the BS and looks like I will be starting chemo as well.   My apt. with the MO is on Monday. I was hoping (as we all do) for just radiation as my son is getting married in September.  This is making me so nervous.  I am glad to know others share in my anxiety about this upcoming "train ride".  Thanks, ladies!

OK, I did it - cut my hair like Michelle Williams. I wasn't even traumatized and I actually love it. Hopefully get to enjoy it for 3 weeks!

Hi all,

Low white count can be increased with neulasta or neupogen. I had to ask my oncologist for it when my whites dropped low enough to delay tx (you don't want that--no use prolonging chemo!) one week.  From then on I got one or the other and had no problems.

It's true, everyone has different experiences on chemo. My worst days were the night OF chemo and the following 36 hours afterward. After that I rebounded pretty quickly.  

My worst AC infusion was also the 3rd out of DD 4, like velutha posted.  However, taxol was pretty easy for me; lots of the SE I had with AC went away on Taxol.  

As for infusion time--remember that unless you've had labs drawn the day before (I didn't) that has to be done first, then read. You may have to wait to see your oncologist. Then she/he has to approve your premeds and chemo (every time).  The premeds can take about 20-30", and depending on the cocktail combo, it may take 3 hours after that for infusion. Plan on devoting most or all of your day to chemo and don't  be in a hurry.  Sometimes my chemo nurses were pretty busy as there could be multiples of other patients getting chemo at the same time as I was...bring your computer, books, music, etc. And drink lots of water!  Lots of it that day and the day after.

My leg hair and arm hair disappeared about the same time my pubes and head hair started to go. Everything has recovered but my leg hair, which is growing much more slowly than the other places.  My eyebrows/lashes thinned a lot on Taxol, but I had AC before that and didn't lose any.

Weird though, for about 5 months I would get in the shower every day and then wonder what I was supposed to do in there Nothing to shave, no hair to worry about.

Claire

So I woke up this morning and it was about 5 minutes before I remembered that I had my first chemo treatment yesterday. I felt fine. Hard to imagine.

I have had some weird tastes in my mouth, chills and took some rest time to snuggle with my daughter and watch a little cupcake wars this afternoon but all in all I have felt good. I can only hope it stays this easy. I know that is not likely but it has been a good beginning.

Hope everybody is doing well!!!

Claire - Thanks for the info.  Always good to have an idea of what to expect since it helps me formulate questions to ask about the infusion process.  Glad I have already received all of my prescriptions drugs and EMLA cream so I can calendar the days of when I need to take what drug and when and how to use the EMLA cream on my port before I leave home..  As always, thanks for coming back here to ease the way for us!!!!

Indigo, I have Kaiser as well and was told to get my labs done the morning before. It's weird how we can have so many questions before hand but once we get there we can't remember any of them lol. I have a port and I didn't feel anything during my first infusion....not even a pinch. I was there for about 2 hours and had 3 people there with me. I brought my Kindle Fire along but didn't get to use it because we were too busy watching tv. The time flew by. I wish you the best and hope everything goes well.

I had my first Taxol last Monday, will have my second treatment tomorrow at 4:30 pm. I don't have a port yet either. I also have to use the same arm for everything, and was stuck twice when they took blood and also when they started the IV. We will see what happens tomorrow. Had no SE's to really speak of, hunger from the steriods and tiredness I guess from the Taxol , but all and all pretty good week.

Here getting my MUGA scan. 1st injection is in. Waiting for 2nd.

One more tip, ladies--

If you were, as I was, frustrated with keeping all my family and friends up to date on my condition, tx plan, etc. you might think about using caringbridge.org

It's a nonprofit, free website where you can easily create an individual online journal for yourself that anyone you invite can visit to see how you are doing. You post an entry, they all get notifications that you've posted an update, and they can read anything you feel like sharing...and you only have to tell the story once.

You can also post photos, etc. And they can send you messages of encouragement or whatever by signing an online guestbook.

I've been using it since Oct and it's been invaluable to me. Saves me from having to answer multiple phone calls when I'm not up to sharing the latest news over and over, or having to answer emails with the same story over and over...sometimes simply talking about the latest would get me upset, but writing it down once for everyone to read when they can really helped me cope iwthout getting frustrated or worn out.

Sitting here at the Cancer center getting 2nd treatment. Wondering if my hair will start to fall out this time?

Hi all! 

Annie and John - go to the Tips and Checklist post in this forum if you haven't already.  I'm counting down to treatment #1 so I can't say I know much from experience, but I thought that was a great resource.  I am probably getting some Lemonheads too!

I have been using Caring Bridge since Claire first recommended it about a month ago, and I really like it, too.  It's a lot less "in your face" than Facebook, for me.  My friends and family really seem to like/appreciate it.

Sandik, everyone had told me the MUGA scan was a piece of cake compared to pretty much everything else we've been through so far - and after mine on Friday, I would tend to agree.  I hope yours was "no big thing" too!

I had my chemo class this a.m. and honestly, I could have skipped it the class itself.  But the nurse did answer a few more questions that I had thought of, that I preferred to ask before the day of!  One other interesting thing she mentioned since we've had a lot of back-and-forth about ports or not - she said that nobody else can do needle sticks or BPs on my left arm - but that THEY in oncology can.  She said this when I mentioned I was debating about a port because my right arm will have to get stuck all the time.  She also said that they don't generally jump at doing ports unless it looks like treatment will be extended over more than 6 months, which mine should not be, but again, if for whatever reason a port looks like the way to go, they'll do it before my second treatment.

Hmmm, about doing the sticks on the "special" arm, right?   I wasn't all that impressed with her claim.  So even if they don't do BP checks on it, they still will have to put a tourniquet on it for any kind of needle stick.  Unless there is some kind of unforeseen problem or emergency, I do not care what she said and I am standing fast with not letting them use that arm.  So far, except for continuing pain and some swelling in my armpit, I don't have any signs of lymphedema and I want to keep it that way.  

Whatcha think?

I also asked her if I could get a listing showing all of the medications I'll be getting each treatment and she said, no problem.  I kept thinking about the ladies who said they were given Ativan - one of whom said nobody told her and she drove herself home.  So far, I have not had huge issues with anxiety and haven't taken anything other than Ambien for the sleep problems I've had, so maybe it's unlikely I'd get Ativan, but at least one poster said she was told they administered it for nausea.  I figure, better safe than sorry.  

Look Good Feel Better class was this p.m.  I was the one and only "student" there.  Very nice people and it was fun to get a bunch of free swag!  I didn't care for all of the products - sorry, not doing purple lipliner, lol - and I think I'll stick with my mineral foundation.  But - I did love the eyebrow powder pencil.  I do still have eyebrows but my right one has been tweezed to the point of disappearing from the middle of my brow to the narrow end, and this stuff looks even better than the Bare Minerals powder I've been using for the last while.  Makeupwise, I really didn't learn much else new because I'm such a makeup girl already. Still, like I said, it was fun to get a bunch of high-end free stuff - and most of it was full size.  I hadn't yet gotten a new face sunblock and my kit came with a full-size Clinique City Block, for one thing.  

I did get a lot more out of the part of the lesson about wearing scarves.  I never even wear bandanas and I didn't really have a clue how to tie anything.  I loved the T-shirt wrap idea - now I want to go buy some cheap T-shirts in pretty colors and get ready for summer.  For anyone not living in Colorado, it actually does get hot enough here for air conditioning in the summer, and this one will probably be hotter than usual, judging by the spring - so I don't see myself wearing the wigs at home a whole lot.  

I think I'll get one more mani-pedi this week before Friday.  

Wishing everyone this week minimal SEs.  Hugs and purple energy coming your way!

That's the spirit, Melrose!  I'm getting a little more nervous as the day approaches, but I keep telling myself, our sisters are doing it so why not me???  I keep thinking maybe I should eat my favorite foods these next few days in case they no longer taste good after Friday.... so I've probably gained back at least some of the weight I was happy I'd lost....

At the LGFB website, they have a little diagram how to do the T-shirt wrap, but basically, you cut the top part of the shirt off below the sleeves so you just have a tube.  I'm thinking a boxy shirt probably would be best rather than a fitted one but it probably doesn't matter too much.  Anyway, you put the bottom (finished) edge, not the cut edge, on your head so that it lines up with your forehead, and twist the back until you have a ropy looking part in the back.  Then you just wrap that forward around your head.  I know, you probably don't have a clue from this explanation - I didn't either - so I'd suggest you take a look at the LGFB site if you can't get to a class.  : 

i had nuepogen shots tue/weds/thurs/fri last week. today was the first day i really didnt have to go anywhere that related to cancer tomorrow go in to check my white cells count to know where i stand. then i might be lucky and not have to go back until the 24th for 2nd of 6 infusions. maybe a week of normalcy?! gosh i hope so. i have been spending a couple hours a day at the beach, sitting right in the sand, today i was blessed to see a family of dolphins out searching for breakfast. was very peaceful. i have been making myself take a walk down the shore also....my hair is actually growing since taking it down to a #1 easter sunday. i am sure it wont be long before it starts to thin its 13 days since my first TCH. the tumor i found is starting to shrink. i felt it today and was like wow its smaller!!