April/May 2012 Chemo hang out

Krazycatlady37

So I am getting my infusion right now and the lady next to me was giving me some tips. She said she has zero nausea with the taxol but feels tired and achy. She said she was on her fifth round of chemo and I said, with a full head of hair to the woman with none,today is my second. She says, no my fifth whole series of chemo. I can't imagine. No clue what she's battling, she didn't offer it up and I didn't ask. Kinda sobering.

nofear2012

Ok, here is somthing funny for u at my expense. For the past 2 days I have been struggling w some major stomach issues, well I started to feel better about 2 hrs ago. So I did some house work and put myself togetheer w. Shower & brush my teeth. While I was brushing my teeth I contemplated brushing my tongue & did it anyways. Not more than 2 brushes and I knew I was in trouble......I threw up - go figure right. What is funnier my stomach feels even better now. I.just hope it lasts so I can eat.

Klepine - I too will have my last AC tomorrow & have struggled w stomach issues this whole time. I am hoping as well for a relief on the digestive track. Whatever se I will encounter I am sure there is a remedy for it.

To all - I just want to say thank u for yur suggestions or just well.wishes. friends/family do there best to help but we sisters truley only understand the journey we are on.

Everyone keep going this too shall pass.

dancetrancer

I met a lady today who started chemo 7 years ago for leukemia.  Was in the intensive care for 1 month due to complications, lost her thumb.  She has continued chemo, 3 days in a row, once every 4 weeks since...for 7 years.  She said she will continue until she dies.  She looked great and was so positive - seems maybe it is a maintence type of chemo.  Yes, very sobering indeed, but inspiring, too.  

Krazycatlady37

Rgina, I had my numbing cream on for only 10 minutes when they called me back for the stick. Felt the stick but it was for a nanosecond.

LinnieB

I'm starting chemo tomorrow and feeling pretty shaky. I was talking with a friend and told her this is more nerve wrecking than the night before surgery.

I've been through chemo education, but I just have an overwhelming fear of the unknown.

I spoke to the nurse today, and she said I didn't need to bring anything with me, but I still feel I will be unprepared.

IndigoMont11

Hi LinnieB!  I recommend you check the topic posted by Moderators that says "Former stickies" at the top of this forum.  The thread entitled "More Tips and a Shopping List" is really helpful.  To give you a firsthand perspective - I'd bring a large cup for ice water and sip on that during your treatment.  Many people also say that nibbling on snacks and/or sucking on hard candies is helpful.  You might bring some tissues because Cytoxan can cause either sneezing or a strange feeling in your nose/sinuses while it's infusing.  Since tomorrow is your first time, they'll probably be talking with you quite a bit, but you might want to bring something to keep yourself entertained, like reading material, computer, phone, iPod.  My chemo lounge allows all of those things and since I haven't yet slept through a treatment, it helps to pass the time.  Also, husband, boyfriend/significant other, other friend/family member (somebody who's "chill" about being there with you but can be supportive) is really nice too.  My oldest son, who's 22, has been my "chemo buddy" the first two treatments and it was great having him there. 

Since you are getting Taxotere, I'd also suggest, if you are interested, that you scroll back through the recent discussions on icing your nails, on this thread. 

I understand how you feel - I was pretty resolute about my surgery and frankly, ended up with only a couple of days really to dwell on it because they ended up changing it on me to a much earlier date.  But I had a few weeks to contemplate the chemo.  Reading the threads helped me a lot, and getting support from other people.  Just remember, everybody's experience is different even though most of us seem to have the same side effects.  And the best advice I think I can give is, if they prescribe preventive nausea meds for you - take them even if you don't have nausea!  And if they don't work, call your doctor's office as soon as you have problems to ask for something else.  

Hugs to you!

dancetrancer

LinnieB, we've all been there.  I was SO nervous before my first one.  Deep breath, push forward.  You can do it!  Oh...at least bring something to entertain yourself and help pass the time!  And any special snacks/drinks you like. 

Stacie

Arrived in San Diego and headed for Coronado Beach for a brief walk. I was looking out at the cliffline when I saw something big dip back into the water. A moment later a dolphin soared out of the water as high as he could. WOW. I've seen many dolphin but never airborne. Then others joined in until some guys swam out and scared them away. Resting in my hotel now.

Melrosemelrose

Stacie- Wow!!!  What a wonderful way to spend the afternoon!!!!  Glad you are feeling well on your trip!!!

Melrosemelrose

LinnieB- Wishing you a little calm and peace before your infusion.  i agree with IndigoMont-- you take whatever you want that will make you feel confident and secure.  It's kind of like going on a trip... you always bring what you think you need even though you may never use it!!!!  If you have a port, make sure you ask for the numbing spray before they start the infusion.  If not, make sure you put that EMLA cream on the port area an hour prior to the infusion.  If you are icing your nails during the Taxotere infusion, make sure you bring something warm to wear or a blanket.  You will need to ice 15 minutes before the infusion, during the infusion and 15 minutes afterwards.  Drink cold water or suck on ice during the infusion to help prevent mouth sores.   Don't worry about bathroom breaks because you can walk around during the Cytoxan infusion with your IV pole.  I was offered Activan (sedative) with my infusion which I have taken for the two rounds of chemo i have had so far.  I fell asleep during the last infusion I had for a little while.  Drink plenty of fluids, water the day before the infusion, the day after the infusion and for several days afterwards.  You want to keep drinking so you can get flush that chemo out of your body.  If you have any questions about anything..... please ask.  You and I are on the same chemo regimen. Just remember, you are not alone!!!  Take some deep breaths,  and move forward.  You can do this!!!!!!   

CityFi

vballmom, what a great image for chemo.  I'll be following you to Chemoland soon. Just waiting for my EKG and answers to my questions before I decide whether not to do this clinicial trial.

I've already cut my hair super short. My BFF - an ovarian cancer survivor - lent me this giant teddy bear that she received from her mother after her journey. She never named it so I decided it to call it Kimo, LOL!  So I posted a picture of me in my new Halle-Berry-esque 'do with the bear and wrote this caption:

 "Me and my new boyfriend. His name is Kimo. Should last 4 to 12 months. Then I'll be grateful for our time together but ready to move on to better."

One of my friends then drew the analogy to chemo as a series of one-nights stands had over a period of time! Others - some who know I have cancer, others who don't - haven't gotten the "Kimo" reference at all.  I'm sure when they figure out, I'll get a flurry of messages: "OMG! I had no idea! If you need anything...."  ;-)

rn4babies

Linnie......I had my first round of T/C last Tuesday. I was also filled with anxiety about it. It was so much better than I anticipated. Really no worse than having an IV for any other reason. I just hope that the rest go just as well!!

lsharvey822

@ wonderwoman - omg!  I hope everything works out for you. 

vballmom

I had my first A/C treatment yesterday. So happy I have the port.  My oncology nurse is bubbly and fabulous. Since it was my first day, I had a private room with a shared bath.  My room had a large window I could see out, two chairs for guests, a TV and two piles of magazines.  The infusion itself was nothing. I didn't notice a thing as it went in. 

 I have been a bit queasy and had a headache, but turns out I took some of my meds too early. I am better tonight. I stayed home, more because I was fearing the unknown.  I went back for my Neulasta shot.  Nothing to report there, although I was in the bigger room for that one and it was weird with no privacy.

I brought my Vera Bradley carpet bag (present from my girls) with a handmade prayer shawl, a tiny pillow, a book, my laptop, and a lunchbox with snacks and drinks.  They provided drinks with ice and even delivered lunch.  Hubby stayed but I didn't really even need him. I was just nervous.

I'm tired.  My face is bright red from the steroids.  I was up for two hours during the night, wide awake!  Hope tonight is better.

CityFi - I love Kimo! How cute!

IndigoMont11

CityFi-love the pic and caption! :-) edited to add -and you can rock that short hair!

kjiberty

Linnie:   have had two rounds to T/C. I was very anxiety-filled before the treatment. Take ativan/lorazapem or whatever they gave you.  

Stacie:  I am glad you are in a perfect, sunny climate.  Just what the doctor ordered!  

Sandik  I was featured on the local NBC news affiliate a few weeks ago right before the Race for the Cure.  Lots of my clients saw it and called me in support.  It was very humbling.

Verballmom:  Had my first Neulasta shot on Friday after my second T/C treatment.  Still waiting (nervously) for the ball to drop.  Have been taking clariton (recommended on these boards) daily.  When I spoke with the PA about it, she was totally oblivious. 

I did not ice--mistake on my part.  My nails are very sensitive.  I am going to put a clear coat of nail polish on tomrrow.  Hopefully it will help.   

ahdjdbcjdjdbkf

Klepine, congrats on finishing your A/C. I am headed into #3 this week. You are my hero for the week for hitting that milestone. I am much more worried about Taxol than A/C because I have to go back to work. I was able to get STD and FMLA for surgery and A/C but go back to work when Taxol starts. I'm wishing us both well :-). I was grateful to feel well today and rode my stationary bike and met a friend for dinner. Any day I can function like that is a good day. I also got to see what it feels like to be in a restaurant in a head scarf and no one really even looked at me. I just feel like me. Glad you enjoyed the sun with the birds.

Cottontail

I'm on day 5 after my second treatment now.  I seem to be slightly less tired each day.  My chest around my port isn't really sore anymore, but it does feel.... tight.  Like I don't have a full range of motion.  Hopefully that will go away, as it's in the right side and I'm right-handed.  

Tummy has been gurgling all day, but I've been eating (even when I didn't feel like it) and drinking as much water and tea as I can.

I haven't been sleeping quite enough, so I hope I can get to bed a little earlier tonight.  I'm usually ok once I get to sleep, but I have been needing to take a Benadryl to get there. 

Krazycatlady37

So this time last tx I had thrown up several times. Knock on wood, but I think starting the nausea pulls during infusion may be staving off the up chucks!!! Woo hoo!



But the hair is coming out in what I consider big chunks. Again hair and head doesn't hurt or feel funny. But if I pick a chunk and gently pull, it will give at the end and pop out. I wear my hair on a ponytail so i have been testing the big plats of hair at the nape that are too short to make it into the hairtie. So it's begun! And all of the sudden tonight cuz I have been testing it a lot in anticipation. Woo hoo?

lsharvey822

@Krazycat - right there with you on the hair!! just curious?... if you have children - were you sick during pregnancy?  somewhere I saw someone say that your nausea would be like you had during pregnancy?  just wondering.

Cottontail

Oh- I still have my leg hair, but I noticed last night I could pull them out and not even feel it.  Gonna give it a couple more days, then break out the epilator this weekend.  Not having to shave my legs this summer has got to be a positive thing, right?

Anonymous

Hi again--claire here.

I've been following the disucssion about Taxol. I had 4 DD AC before my 12 weekly Taxols, and T was quite a bit easier. I got my appetite back, the hyperacute sense of smell went away, no nausea at all, and I actually hiked after every infusion. I felt almost nothing from T aside from a bit of fatigue from time to time, although my white count dropped dramatically and I had to get neupogen shots to keep them up so I could continue tx.

I was afraid about having to take steroids the night before and then in my infusion till it was determined I wasn't going to have some awful reaction, but the steroids weren't bad either: no weight gain, no moon face-they didn't give me enough for a long enough period of time to cause those kinds of SE.

I can't speak for everyone, but T--if you can believe it--was like a ray of sunshine after the AC's dark days.  

vballmom

Isharvey, I am only had me first A/C monday, but this feels exactly like morning sickness!

 Claire, thank you for bringing hope!

Krazycatlady37

Isharvey --no kids so no clue but I have heard other describe it like morning sickness. I now sympathize with pregnant women, who knew!

Stacie

Is anyone else doing AC+T all at the same time? Seems like everyone is doing AC and then T.

FightingLikeAGirl

Hello,

I've been keeping up with everyone's progress just haven't really posted much. Glad to see everyone is hanging in.

Thought I would share my journey so far. I am on day 21 of my first TCH tx. Tomorrow I start my 2nd.

The first one wasn't as bad as I thought it was going to be. I kept ahead of the nausea with Compazine...thankfully...that was what I was most afraid of. Had some pretty bad body aches from the Neulasta shot the Claritin and Tylenol didn't give me much relief so my Nurse gave me Tylenol with Codeine...that did the job and it was only bad for a couple of days. Had the big C for a couple days then the Big D for the next few days...and pretty normal after that. Definite heartburn...my Nurse told me to take a Prilosec daily for the entire 6 treatments. I had to add a Zantac for a couple of days. Had a few pretty bad bloody nose episodes and my Dr. took me off baby aspirin...she also has me on Coumedin so my blood was probably too thin. Pretty tired and just didn't feel my self for a full week. Then Friday morning (one week after the first treatment) I woke up and felt like I turned the corner...I started to feel more like myself.

Really the worst part of it was getting Thrush...its disgusting. At first I just thought the weird taste in my mouth was the normal side effect of things tasting different from Chemo...and the sore throat maybe from post nasal drip...finally it got so bad I contacted the Nurse and she told me I had Thrush. She gave me Difulcan pills and Nystatin for my throat. It took about 5 days for it to start to feel better...the burning in my throat was horrible...I recommend the minute you start to have a bad taste in your mouth and a twinge of a sore throat to contact the Dr. right away...don't let it get worse. My Nurse is going to give me Probiotics...hope that help prevent this from happening again!!!

After the initial week I started to get more energy daily.

This past Friday night when I ran my hands thru my hair about 10 strands of hair came out each time...of course I started obsessing on it and kept doing it until I had a pile of hair in my lap. I contacted my cousin who was "on call" for the big head shave. He came over Saturday afternoon and shaved it with about 1/8th inch of stubble. In a strange way I felt empowered. Happy that I didn't have to watch it all fall out. I do have to say if I was going to do it again tho...which I AM NOT!!! I would have shaved it all off.

I happened to be at my parents house when this whole shaving thing went down and they were in the other room cause they couldn't handle it. They have been amazing thru this whole thing and for the first week after my treatments I stay at their house and they are taking great care of me. But I know they feel so bad this is happening to me and that there isn't anything they can do to change it. They are having a harder time then I am with it all.

Anyway, I went to a party Saturday night with my wig on and sort of felt like a fraud...has anyone else felt that way? Most of the people at the party knew what was going on and said the wig looked so much like my real hair and I guess it did but every time I got a glance of myself in the mirror I was shocked at how fake it looked. I'm thinking a wig might not be the thing for me...maybe just on special occasions. I've been wearing scarves the last couple of days and getting used to it. Not sure I will ever be able to rock the bald head in public but never say never....right?

This past day tons of stubble started falling out everywhere so I just took the electric razor to it and shaved the rest off...now I am officially bald...really weird feeling...but I am sure I will get used to it soon. I ordered a few skull caps, buffs a halo wig and a few other things...I really don't know what's going to be comfortable for me so I figured I would just try a bunch of different things until I find what's right.

All of a sudden this whole thing is becoming really real to me. I think it took the bald head to really set in.

I'm getting pretty nervous about my treatment tomorrow. Wondering how different my side effects are going to be.  Can anyone tell me if there 2nd treatment SE's were different from their 1st?

WoW...I've been rambling...I guess I really needed to get that out.

Cindy

dancetrancer

Cottontail - My port/arm felt tight for about a week or so.  I just let it be - didn't stretch b/c it was so fresh, didn't want to mess it up.  It gradually loosened up more and more with daily functional use and after a few weeks I started very gentle stretching.  I have perfectly normal range of motion now.  Hopefully that will be the case for you, too.

I use sleeping medication to help me sleep.  Took me a while to convince myself to do it...suffered a lot more on my first round.  2nd round I gave in and took it as needed - I felt SO much better.  

Fighting Like a Girl, my 2nd TCH was better in terms of energy b/c I let myself take sleeping pills and actually rested.  I still had the big D, C, and bad stomach cramps, but they seemed not to last as long - I attribute the improvement to taking probiotics this round.  Worst was acid reflux/heartburn (I have along pre-chemo hx) flare.  I had had it the 1st time (5 days), but the 2nd time I had it well over 12 days straight besides being on max meds (double Pepcid, double Protonix, 4 Maalox a day, 2 Zofran a day).  It was awful.  I finally went on Carafate and that started to get it under control after a few days.  I had an endoscope to make so no ulcers had developed - thankfully none.  OH, and I had thrush starting on Day 3 and not just in my mouth...nether regions affected with broken skin...NOT fun.  The trush went away after about a week this time (1st time had it only like 1-2 days)...BUT...came back day 18 and I STILL have it (mouth only, I think).  Still treating with Nystatin and not improving.  I've had a low grade fever off and and one the entire 3 weeks. 

3rd TCH was delayed one day until this morning.  My hemoglobin has dropped to 8.7 so I may need a transfusion after this one.  My white count is just barely above the level at which I am allowed to get my 3rd TCH.  We are adjusting the dose down just a tiny bit since my numbers are so borderline.  I'm nervous to go in today.  Doing what I gotta do.  We'll be starting Neupogen earlier this round b/c my whites have dropped so low each time despite Neupogen.  

So, it's a mixed bag.  My GI sx and energy level overall were better round 2 for me.  My blood took a harder hit - seems that can be cumulative if your doesn't rise up better than mine by the 2nd TCH.  

Keep in mind we all metabolize drugs differently, even on the same regimen.  I read an article that talked about this.  It said there are so many individual factors in someones' body chemistry that you just really can't predict how each person will react.  I think that is why some ladies on here are sick for maybe 5 or 6 days with mild symptoms whereas some of us are knocked down hard for 2 weeks or more.   

See, now you got me rambling.  Can you tell I'm nervous about moving forward with treatment tomorrow?  Oh and I've had an unusual SE.  Earing ringing since the first TCH.  I have to have background noise on at all times or it bothers me.  It is the most worriesome symptom to me, b/c no one can guarantee me that it won't get worse with each treatment, nor that it will fade.  This may be a symtpom I have for life due to this treatment.  

Husker123

FightingLikeAGirl, you sound a lot like me. I'm going for my 2nd TC tomorrow. I didn't have too many SE's from the first one but I'm wondering how this one will be.

I've put the wig on & taken it right back off. It doesn't feel like me. I've been doing ball caps out of the house. I live in a very small town & most everyone knows what's going on with me. I'm not ready to rock the bald head when I go out even though a couple of my friends said I look good. DH was a dear when he told me that hair didn't make the person, their heart did.

So today it's back to taking the Decadron and preparing for tomorrow. The good thing is that after tomorrow, I'm half done with this!!

Wishing everyone a good day!

Stacie

I don't like wigs or scarves. I tried all and prefer little page boy caps. The wigs are uncomfortable and the scarves are scratchy and I feel pathetic in them. Never would have predicted all that.



Here is a cap I found it looks cute with stud earrings and since I travel it squishes into a suitcase or my purse. I bought several colors. I even wore the black with a figure flattering black/white striped ankle length summer dress with sandles and felt pretty. They are cool and made of soft T shirt like material so cumfy.

http://www.tlcdirect.org/products/sku-7950__dept-28.html

Stacie

PS If anyone LOVES scarves I have a few brand new collecting dust. PM me I'll mail them for free.