April/May 2012 Chemo hang out

I haven't been on here for a few days and this place has exploded with posts!  I will come back to read them all later when I have time, but just wanted to tell you that I am freaking out this morning! My hair is coming out like crazy! I am 2 weeks post first treatment of AC, and right on schedule it is falling out. When I run my hands through it there is so much tangled in my fingers. Guess I better stop running my hands through it!   I also notice my eyelashes thinning. I pick up my wig tomorrow but I don't think I will have her shave my head. I want to get through this work week with my hair as is, then maybe shave it at home this weekend and start wearing the wig to work on Monday.

So far, I have been feeling really good. I haven't had to take a Zofran for a week. I stopped taking the Ativan at bedtime just to see how I did and I was fine without it. I don't want to get addicted to that, but I will take it as needed. I hope that this is a sign of how things are going to go for me with chemo. But likely it will get worse as I go along. Praying not though! I get my bloodwork done again today. Last week's WBC count was 1.2. All they told me was to stay away from crowds and sick people. I guess my Nuelasta shot had not yet kicked in. I hope today's results are better.

I am so thankful to have all of you to come to share what is going on with this journey. Good luck to all this week with your tests and treatments!

MCM

im going to shower now and rub my head and get off as much hair as i can, if its patchy im shaving it off. i am happy for all you ladies who got wigs and buffs and scarves. no one at my center ever took me on a tour, nor did they tell me about all the programs you have been going to for the free goodies. no worries on that, but i am one girl who is going to rock the bald look, everywhere, i will of course protect my scalp if im at the beach, but i refuse to wear a wig or scarf unless it gets where i am chilled, and i have tons of wraps i used when i had my dreads. here in florida we havent turned on the a/c yet, its been lovely. i wore dreads for years but now that i am free of hair, i am showing my head off! i love it.

I am about 10 days out from my first TCH treatment and no hair loss yet!  I know it is coming and that is one of the things I am dreading but as with everything else I will get through it!  I am soooo thankful that the side effects I have had have all been manageable and I think the Neulasta shot made me feel worse than the chemo...!. 

Anyway, I just want to thank everyone on here for encouraging and giving advice, etc.  I may not comment a lot but I do read the posts and love all the encouragement and helpful hints.  It really does help!!! 

thanks Sandik

@Stacie someone suggested the henna to me as well. you wont feel strange, trust me, a lot of people think i was just wearing/trying a different style and say wow, you are so brave or i could never do that, you have a great shaped head. the mail man said boy, you go from one extreme to the other dont ya, i just smile and said yes. so in a way your stepping outside your comfort zone. no one knows you have cancer, your not wearing a sign by sporting a bald head heck, i bet by they time we are done.... bald will be the new style in town!

i was in JC Penny and they had a whole wall photo diplay near the make up section with a pretty model with a buzz cut like we have been wearing. she had full make up on. i may not of noticed she was bald at another time before going through this.

i tool a razor to my head today it is perfectly smooth. i picked my son up at the bus stop, and it took him till we pulled in the driveway to notice it was totally bald he wanted to touch it lol. i am sure i will get some stubble or the follicles/roots that are left in my scalp will purge.my scalp feels numb when i touch it.

 i think your photo idea sounds beautiful and would look great framed somewhere in your home.

Finally found those Lemonheads at the Walgreens near my house--- YAY!!!! Thanks Stacie!!!!

Tomorrow is a trip to the gyno and then my PET scan.  Hope everything goes well and the results turn out good.  Just want to put the pre-chermo testing done and over with.  I told my DS and DD that I'll have that geiger counter clicking tomorrow and may be glowing when I get home.... lol!!  I had my last follow up visit with my BS.  He said everything looks good and I can start moving my left arm a little more now.  He said if I think I have movement problems, I can get PT.  I'll have a few days to relax and get myself ready for chemo on Tuesday.  Getting an exercise bike on Saturday and maybe a juicer.  Is anybody using a juicer?

wiskris=Kristi     haha Coouldn't think of her screen name

Or maybe it was Stacie! haha

Sandik, cancer does suck. Sorry to hear about your friend. You gotta continue to think positive. It won't be a walk in the park but we're all gonna get through this. We Can-cer-vive!!!

Hi Rose! Well, it's 4 a.m. here too now. I was so sleepy at bedtime that I didn't take anything - and drat, woke up after maybe 3 hours so stiff and sore that I couldn't stand it anymore, darn it. So here I am, catching up on Game of Thrones and thinking about my first A/C treatment tomorrow. I have some mild rosacea- wonder if that means the heat/flushing will be worse....

Pkate (Trish) here, on day after Chemo #2 of A/C.  Supposed to start at 1pm but another patient having trouble so started closer to 2pm and was last patient to leave.  Uneventful but I learned that an ice pack eliminates all pain of the injection (I had been using EMLA which takes 1 to 1 1/2 hours to work and I had it in the wrong place!)

Dranks lots more this time and I think it helped.  The red output from the Adriamycin went away faster.  Going to drink lots today as well.  What has helped me get the water in is watered down lemonade (with real lemons fresh squeshed and real sugar).  That may be my new drink of choice!

I know its early but I've taken my decadron and haven't had the need to take the Ativan given to me for prn use for nausea. I am also using Biotene wash whenever my mouth feels yucky and that has help tremendously.

Several things I learned from my onc on visit on Tuesday.  Take prilosec or (other) for heartburn everyday if you are having that complaint (I also had heartburn every single day of my pregnancy, coincidentally).  Take Claritan (or drug of choice) every day if you are having allegy symptoms.  She said anything to get rid of the symptoms will not interfere and will make me more comfortable.

 I've been taking Ativan and Tyelonol PM every night to sleep.  Without it I wake up with a racing heart several times and can't get back to sleep.  She said, take it every night and she will order more if I need.  When I said I was worried about addiction to Ativan, she said - "we wIll, deal with that later, you need to rest now".  All of that made me feel so much better and positive about my well being from my care givers - and not that they just wanted to shove the chemo in me.

Last lesson learned this week, and sorry if this has been posted before - is that I had my lumpectomy on my right side and should NEVER AGAIN have my blood pressure taken on my right arm as it could cause some of the scar tissue to break free and cause a clot.  They said they would give me a bracelet to wear.  Being in health care, I was shocked to hear this but so glad I found out before going to other doctors (Primary and OBGYN) whose nurses may not know.

Other SE's - hair starting to come out but then I had it cut off (buzzed) last Monday and have been wearing wig since.  Went to Wal-mart for meds in my hat only for the first time.  Today I think I'll go to Post Office and Costco and do the same.  Its empowering!

Oh, and I found out that my worst day is the day 1-3 after decadron stops or Days 4-6.  I crash big time first day, then get 50% better first day, and 50% better the second day and almost normal the third day.  I went back to work on Day 6 but left a little early.  The next day, Day 7, I literally felt normal, as I did before surgery, and it had been a long time since I felt that good.  Now, keep in mind this was my first Chemo scenario and the doctor said that the treatment is cumlative and I may not get back to that 'high point' the next time.  It tapers a little bit each time until you are done.  That was good to know and even though we are all different, I thought worth passing on.

Love to all of the beautiful ladies on this site!

Hello all!  I've been lurking on this thread - I post mostly over on the TCH thread.  I'm getting TCH X 6 (if I make it that far, LOL).  Had my first treatment a week ago Tuesday.  (BTW, I have a port, and I was in the unlucky 1% that ends up with a lung collapse...2 days in the hospital...thankfully no chest tube.  If you haven't had your port yet...I suggest you go through interventional radiology so they use ultrasound guidance - less likely to nick a lung.  Also, I've read that the internal jugular is safer, b/c it is not a "blind" approach like the subclavian which I had done, by a surgeon.  Hope not to scare anyone, but these are things I wish I had known.)

So, tx was on a Tuesday, steroid crash started Friday night.  Sat, Sun, Mon were miserable.  Vascillated between constipation, then diarrhea (up 4 to 5 times/night), stomach cramps, severe reflux/indigestion, severe exhaustion, then developed thrush Monday.  Oh, and I ran a low grade fever from Friday night through last night.  Finally under 99 this morning! 

Starting yesterday (8 days) post, I feel GREAT.  The only issue I have now, which is serious, is Grade IV neutropenia.  My absolute neutrophil count on Tuesday was 500.  I am on neutropenic precautions (handwashing, etc.) and diet (all foods must be FULLY cooked).  If fever were to go over 100.4 for more than an hour or 101, I was not to delay getting to the hospital, as febrile neutropenia is a life threatening emergency.  Fortunately, this has not happened to me (yet?)...I get my bloodwork retested today.  We will then decide how to proceed.  FYI, I did NOT get a Neulasta shot the day after my chemo.  The national guidelines did not recommend it for my regimen preventatively, b/c they feel the risk of febrile neutropenia is not high enough to warrant it.  Now, of course, I will get it after future treatments!  

Here are my tips:  take a sleeping pill (set a timer to get up and take your meds so you don't sleep through antinausea meds - I never had severe nausea).  I was going on 3 to 4 hours of sleep a night b/c I was up to the bathroom so much and then anxious and uncomfortable, etc., etc.  I finally relented and started taking my sleeping pill the last few nights and the rest has helped me recover and heal IMMENSELY.  Don't fight it.  Just take it!!!

Make sure you are on a good indigestion drug if you are prone to that - I was on prescription Prilosec - it didn't cut it.  Doc up'd me to Protonix and that fixed me RIGHT UP.  Also, take your Zofran or whatever you antinausea meds are ON SCHEDULE even if you don't have any symptoms.   And don't try to wean yourself too early...like I did...I think that contributed to my horrible indigestion!  I'm still taking them every 6 hours round the clock...and I am on day 9 post chemo...doc told me Tuesday - KEEP taking them.  I will find out today how much longer.  

Of course drink water, etc., etc.  Keep a list of how many times you refill your drinker and get in at least about 70 to 90 ounces a day.  It doesn't have to be water - soups, etc. count, too.  Be careful with juices...the acid in them made my stomach worse, and I suspect they may have contributed to upsetting the balance in my mouth and me getting thrush.

Gargle preventatively with 1 tsp of baking soda to 1/2 cup of warm water 4x a day to try to prevent mouth sores.  If you notice a white tongue call your doc immediately.  This is thrush (yeast infection of the mouth).  They have a fabulous prescription mouthwash you can use that fixes it right up.  Mine was gone within 24 hours of starting it!!!

Write down/check off meds on a list each time to take them.  Set a timer/alarm to help you remember when to take your antinausea meds.  

Ask your doc about taking a probiotic.  It may help prevent constipation/diarrhea b/c it helps keep your natural bacteria alive in your gut (chemo kills them off, you get diarrhea, etc.).  Start this prior to chemo to see how you fair with it.  I did not.  I started mine yesterday.  Waiting to see if it kicks in...I think it has a little bit.  Do not medicate with constipation drugs or antidiarrheal unless cleared with your doc.  You can make yourself swing the other way or mask a bad infection.  They will tell you when it is ok to take something - ask ahead of time so you know what to do if sx develop at night or over the weekend.

Don't be afraid to call the emergency #.  If your fever goes up over 100 for an hour or over 101, get thee-self to the ER.

OK, boy was I on a roll this morning.  Hope this helps someone!!  OH, and I discovered that having frozen meals (individual) is very helpful - can easily feed myself when DH is at work and gives me lots of variety.   Eat whatever sounds good (well, avoid spicy or uncooked foods), but small portions at a time, or you may end up with worse GI issues (been there, done that!).  AND...just discovered Ensure fortified with protein last night...25 grams of protein in one...we need extra protein as our bodies heal from the chemo/surgery/rads...these little suckers pack it in, are easy to get down, and GOSH, just like chocolate milk!  Sooooooooo  yummy!  Very worth the money!  

@dance: sorry your treatment has been so adventurous!  Wishing for calmer seas going forward.  

@indigo: I hope your DH has been on track.  Has he gone to your MO with you?  Maybe they could talk to him/write down some of the math for him.  I agree with him, chemo is poison, but choosing between more cancer and poison was a no-brainer for me.  I've seen option #1, chemo is kinder.  In my house, no one is allowed to pout/cry/have pity parties with the cancer princess.  You want to be negative, you can do that with someone else.  Sorry, I have enough on my plate.  

My family has all been to see a therapist at the cancer center (separately, not a group session).  I think it helps my DH to talk to someone who has seen this 10,000 times and can reassure him that what we are going through is normal for cancer patients and their families, and take away some of the uncertainties.  Don't get me wrong, my DH is awesome.  Humor helps us a lot.  

@the 4am posters: I used benadryl for sleep for most of my tmt, because it worked for me and it's not habit forming.  After 2 weeks of it not working, I gave in and tried lunesta, and felt amazing after 2 nights of uninterrupted sleep -even slept through the hot flashes! 

Re: lemonheads.  If you get tired of them, try ginger chews (by the ginger people, green bag, at trader joes, or online), and I liked werthers coffee flavored candies.  Don't over lemon candy your mouth, you can overuse your poor inflamed salivary glands.  Baking soda rinses also help with the weird taste, you can add 1/4 tsp salt in addition to the soda, and temp. doesn't matter.

Re: juicing.  I personally would not do this neutropenic, b/c I don't trust myself to kill every single germ in my juicer.  Foodborne illness in chemo patients is uncommon, but it happens.  

Re: weight.  A lot of you lost wt before chemo, like I did.  Ask your MO what your regimen usually does to wt.  Mine typically causes a 7-10 lb. GAIN.  They are not kidding about that, let me tell you. 

It's Taxotere, Carboplatin, Herceptin.

I lost 2 # my first week, but after eating great yesterday, I'm back up to my normal weight.