Starting Chemo in April 2014

LovieLovie

ColdInCanada-  Sorry you had a reaction.  I saw 2 other people have reactions in the infusion room.  The first one I didn't know what was going on (red face and dry cough) but on the second one I alerted the nurse because I recognized it.   The reason I say this is because as you go thru chemo you may (insert will or should) become hyper vigilant about people who are sick (coughing, sneezing etc...)  maybe even paranoid.  You need to stay away from sick people at all costs.  The nurses want you to be successful through your treatment and its not unusual for them to call your MO and have your meds tweaked. Regarding the zapping you had, my first thought is neuropathy but I've never heard it come on that quick. Have you checked any of the treads for the chemo meds you are taking to see if that is normal?

LongIsland- Great attitude!  Everyone lives in the here & now, they just don't realize it like we do.  You will have such an appreciation for life when your done with this and that's the gift you will have that others don't. 

2 things with neulasta or neupogen, ask the nurse to warm the vial up first with their hands, it only stings when it goes in cold.  I had almost no bone pain.  It made me want to stretch my legs.  I never took Claritin or anything else.  Everyone is different so don't just hear the worst stories and think that is going to be how your body is going to react.  If you are inclined to stay on top of your own treatment, keep an eye on 2 numbers from your CBC and that is your white blood cell count WBC and red blood cell count RBC.  1 neupogen shot would bring my WBC way up but sometimes I would need 2.  I would schedule 3 and cancel that last one if I didn't need it and my MO was ok with that as she knew we were both watching the numbers and was ok with me getting only what I needed.  IF your RBC count drops you will feel puny and the only control you have on it is to keep your protein level high.  Hope that helps cuz I'm all about helping you gals.

ColdInCanada

I am SO glad my long-winded prose was helpful to someone ChrissyLB!

Honestly?  I feel a lot like I did when I was pregnant, only better. Seriously. Tired, nausea, keep-your-stomach-full-but-not-too-full, food aversions and cravings, achy - it's all there. I had AWFUL pregnancies - we originally wanted 4 children, but after the first two, I realized I could NOT do that again - so  I keep telling myself: "this is better than pregnancy. And it won't last as long."

I think the hardest part for me has been going from being super-active (I ran a half marathon on Jan. 11 of this year! True!), healthy, homeschooling, Stay-At-Home Mom to sick, exhausted, can barely get up off the couch, grumpy Mom in just a matter of days. My husband and kids have been AMAZING throughout this whole journey. They are doing all the cleaning and cooking and errand-running ON TOP OF working and doing school FULL-TIME. And I watch them exhaust themselves, and it KILLS me that I can't do ANYTHING about it. It's this CHANGE that's hard. I MISS being active and busy and doing all the simple things. So, yeah, the side effects themselves are stinky, but it's those little things I have to give up for awhile that really make me want to throw a tantrum. 

EverForward

Great attitude, Canada. 

Just walked through the treatment and side effects with my chemo nurse. Man, I've got a laundry list of prescription and over-the-counter drugs to stock up on before my first chemo: steroids, drugs for constipation, drugs for diarrhea, drugs for nausea and stomach upset, EMLA cream... 

lilyrose53

Hi ladies!

I'm a newbie here.  I too, will be starting chemo this month.  I am getting my port put in tomorrow.  Then on to chemo class on Friday.  I was told that the onc nurses will go over everything they can and answer any questions I can think of.  Boy, do I have a list!  LOL  It sure is nice to know that there are so many here supporting each other through this journey.  Just wish we didn't have to be here.  I'm TN and wondering how many others of you are also?

ChrissyLB

Thank you Everforward for reminding me to call and get my chemo info. all I am is scheduled for Monday day 1 cycle 1 with no med list or instructions or anything! UGH! I did speak to an onc nurse Monday but she was just helping me to get a message to my MO about Abraxane instead of Taxotere...anyways, Thanks! I have been reading March chemo 2014 for the last 90minutes trying to follow gals with my same TC doses and getting caught up in others too, so many lives smacked with BC and it's amazing the support from newbies and veterans! Feeling Thankful at this moment

clarrn

Thanks for sharing your expediences ladies!  It is helpful to know what possible SEs I might experience. Also hoping I might find AC a little easier, but if not then I will know that it's normal and there is an end to feeling terrible.

Shellbell - sorry you are joining us,  but this is the best place for support and advice.   I remember how panicked I felt waiting 3 months for surgery.   The ladies on this site kept me going  I do believe that you will get through this.   My oncologist took a long time explaining why I got my particular chemo regimen,  maybe you need yours to do the same.   The treatments are different for each of us.  The more I research my treatment the more confident I am that it will do what it is intended to do.   Kill those rogue cancer cell a and save me to watch my baby grow up .  So glad the treatments continue to improve and we get the benefit of so much research. 

SharonDe

Sending good vibes out to those who have started.  Thank you for sharing your experience.

A question - is it common practice to get an introduction to your chemo treatment before it starts?  So far, I've been given a time and date of when to show up, and a print out with possible side effects from Cytoxin and Taxotere.  And a prescription for steroids and anti-nausea meds.

Better than nothing, but no info on things like making dental appointments beforehand, laxatives and other meds to have on hand, etc.  No discussion of a port, and so on.  I've learned a lot here, just wondering how it works for the rest of of you as far as pre-chemo info.

ColdInCanada

EverForward, I was SO overwhelmed with all the DRUGS too! For someone who isn't on ANY medications (and can barely remember to take a multivitamin once a week!), it was a bit disconcerting to suddenly be someone who could open her own pharmacy. My 11-year-old daughter got a look at my stash and said "MOM. Whew. Good thing we're not flying on any trips, cuz those drug dogs at the airport would be ALL over you!" Oh yeah, she's a barrel of laughs, that one.

SharonDe, I'm in Canada, so I don't know how different things are here versus in the US. Here in Alberta, there is a Chemo Class you can take that answers all your questions about meds and the process, etc. My treatment started so quickly, there wasn't really time for me to take the class, so my oncology nurse spent some time with me, going over EVERYTHING. I have printouts too, so I can refer back to them, but I did have a pretty good idea of what to expect. Except for the port. I knew the port was coming, but as for the process? My surgeon for that was an idiot with a staff of idiots to back him up, so I had NO idea what to expect, even while the port was actually being put in. My questions were all brushed off as I asked them, and I was virtually ignored. But I digress. In answer to your question, YES, I was provided with quite a bit of information from the oncologist and his nurses and assistants. However, I also found quite a lot of information here on this site - there's really nothing like hearing it from people who have been there and experienced it. If you need more info from your doctors, ask. I am PERFECTING the art of asking questions. I'm sure I'm annoying the heck out of some people, but hey, I have cancer, so they should suck it up.

clarrn, I hope all went well today. Rest, rest, rest! 

lilyrose53, Welcome to the club no one wants to join. Good luck on your port insertion tomorrow. If the nurse tells you you don't need anything for the pain because it's just like going to the dentist, she is a LYING LIAR WHO LIES. Just saying. P.S. Take the drugs if they offer them to you. 

LovieLovie, THANK YOU for your advice. You are so helpful! I DID contact the oncology nurse on call regarding the "Zapping", and she assured me that it was pretty normal. She was very sympathetic, told me to take Tylenol, and told me to call back if it didn't help (it did), because "they have meds for that." It seems they have meds for everything, but I just get all wacko on them. I feel like I have to chose between gross side effects and feeling like I've sucked back Happy Gas. It's lose-lose, really. I'd LOVE to chose the Happy Gas, but I DO have two children to take care of, and it's much safer for them if I'm on Planet Earth. Maybe it's just a matter of finding the right dosage of the right meds? 

linda505

Hi Sharon,

I am in the same spot as you - feel like I am missing information.  I called about that yesterday and they said that my PA will spend time with me the morning I start going over everything.  What part of Florida are you in and where are you doing treatments?  I am in Venice and going to Florida Cancer Specialists.

linda505

Hi again Sharon - here is a thread that has a list of things that you might want for chemo

http://community.breastcancer.org/forum/69/topic/706846?page=50#idx_1489

Curlyq1974

Lilyrose - I am triple negative.  I am 39 years old, will be 40 next week.  I am so sorry you are joining the group, but I am available to help answer any questions you have about my treatment, diagnosis, etc...  I am also BRCA 2+

Hi Ladies!  I just wanted to chime in because I know this is crazy as you all start your chemo journey, but I am so excited for my next round of chemo.  Bet you can hardly believe someone is actually EXCITED about CHEMO!!!   Tuesday will be round #5 of 6 for me and for some reason, I feel like I have finally turned a corner.  I will  only have one left!   ONE!!!   I can see the light at the end of the tunnel and all of this will finally be behind me.  These boards are a god send.  I don't know what I would do without them.  With that said,  just starting the chemo process don't always read the horrible, negative posts.  They will make you crazy with worry.  Take the good advice and ignore the rest. 

Things I wish someone would have told me when I started chemo?  Stock up on Kleenex.  By the pocket packets and put them EVERYWHERE!!!  No one told me that hair loss also meant I would be without nose hair, which appearanlty keeps your nose from running.  My nose runs all the time!  I eat, my nose runs.  I walk, my nose runs.  My nose just runs all the time anymore - I miss my nose hair!   At first, i thought i was getting a cold.  Nope, just have no nose hair.  who knew!

I have pretty much figured out my particular cycle for chemo and for you interested here is what it looks like:

Week 1, Tuesday is my infusion.  I eat before my infusion, and mid-way thru to keep the nausea at bay.  Someone does drive me home from the infusion because I am a little loopy with the drugs and my legs are a little wobbly.  Wednesday is an ok day and I get my Neulasta shot.  Thursday is an Ok day, but I start to feel blah.  By Saturday/Sunday the blah feeling is full blown and I just lay low.  I go from bed to the couch back to bed and watch lots of movies.  Just general tired feeling.  Not horrible, just run down.  I also have a leg tick that starts.  My leg shakes like it is restless.  I have learned to ignore it, but it was embaracing at first to sit in meetings at work with a shakey leg. 

Week 2 Monday/Tuesday is the start of the dull achy feeling from the Neulasta and that last until about Thursday/Friday.  Still have the shakey leg.   By Saturday/Sunday I start  feeling human again, i stop taking the steroids and anti nausea meds, the shakey leg stops and can pretty much do normal stuff, but I do get tired quick.  Hungry - the steroids make me want to eat the house down.  I have gained 15 pounds.  The doctor is not concerned and warned me I would gain weight.  I am not at all happy about it, but if my body needs a little pudge to fight this shitty disease and keep me around for another 40 years, I'll take the 15 pounds. 

Week 3 is the most lovely week of all.  Feel good. I am able to do about 20 minutes of light exercise a day either walking or riding my stationary bike.  Nothing major as the adriamycin is rough on the heart, so trying to just protect it right now. 

I also have continued to work full time thru treatment.  I take off for my infusion day, and occasionally i have taken a day off during week 2 because the fatigue is too much.  Other than that, I'm working.  I am no means super woman, my general surgeon told me at my post-op follow up appointment to get on with life.  Don't let this god awful disease rule it.  BEST advice ever and that is what I am doing.  I am living.  I am enjoying everything more.  I am less stressed.  Cancer sucks for so many reasons, but it has been such a blessing to me.  It has put into perspective the things that really are important to me and everything else doesn't matter.  I live for the now.  I enjoy my love ones more.  I care less about the things I cannot control.  It has been such a freeing thing.  Crazy, I know, but cancer has been a blessing to me.  

I wish you all the best as you start your journey!  I hope you find your mint chocolate chip ice cream that tastes good for you when you have metal mouth and minimal side effects.  I am available for anyone if have questions or I can do something to help.  

Best wishes,

Janet

linda505

Hi Curlyq - love your attitude on this - you think you can come sit next to me at chemo and tell all this stuff LOL

mikishelley

Good morning ladies! I had my port placement on Monday. The incision point was the most sensitive afterward. Altogether it was more than I thought it would be. For some reason I downplayed the port placement since it was an outpatient surgery and I had just underwent a double mastectomy and TE placement. My first chemo was Tuesday and I was very nervous, but I have to say the nurses and staff were very supportive and talked me through everything. The social worker came down and spent almost 45 minutes talking with me about options that are available to me financial, free scarf, free wig, and the look good feel good session (which I signed up for). I feel really blessed to have such a wonderful center that ensures a caring overall experience that helps through this process. My first day was fine I felt a little tired early in the evening, but I believe it was from the stress of the day. I did have horrible heartburn later and woke about every two hours a sweaty mess. Yesterday, I was just extremely fatigued. I got my Neulasta shot, and I had no problems with that. Not hungry and I had to force myself to eat anything. I have ensured my water intake has been at least 80 oz a day. The medicines have been a mess to handle. I keep a diary and a medicine diary to ensure I am doing what I should. I slept well last night and woke with back cramps this morning, but thankfully no nausea or heartburn. I hope the next few days will be fairly uneventful. I am hoping to go to a new member Cancer Community meeting tonight, and yoga tomorrow. A friend of mine found a hairdresser that is going to cut my hair short for me for free. I am soooooo not looking forward to loosing my hair, but a think a shorter cut will be easier than a buzz cut. My eleven year old wants to keep my hair. One of her favorite things to do is play with my hair. I guess I am going to let her keep it. I am hopeful things will go smoothly from now until my next session on April 29th. I really want to go back to work, but I work in a warehouse and can't go back until  my restrictions are lifted. Still hopeful!  

Curlyq1974

linda505, trust me, the journey has been looooong.  My attitude has been a roller coaster of emotions.  I do try and have a good time at chemo - whoever is in the infusion room with me, we do laugh about the craziness of this journey.  Most of it is sick and twisted about the side effects.  If I don't laugh, I would cry and I have had my fair share of tears. 

SharonDe

Thanks for the info, ColdinCanada. Linda - thanks for the link.  I am on the East Coast - Palm Beach Gardens / Jupiter area.  I did find out that there is extra time set aside for my first visit to do education.  And, they said I could stop by anytime if I wanted to visit the infusion room (I think I will wait and let it be a surprise .

Janet - thanks for sharing your experience.  And, good for you keeping up with work.  I am retired, but will try to stay active if I can.  I guess we all react differently.

Mickishelley - congrats on doing so well with your first Chemo.  I can see where you want to get back to work, but it makes sense to follow instructions.  I've heard yoga is good for us.

Sunshine36

ColdinCanada - thank you for being so detailed in your post about your 1st chemo. I just had my port placed yesterday, and tentivelye sch to receive my 1st chemo treatment tomorrow (I say "tentatively' bc my insurance is dragging their feet on final authorization and it's been so frustrating since we know it will be approved and they've had the work out and plans from my oncol since last thursday grrrr). I have so many worries about which side effects will be the worst and how ill feel, etc.  My husband and I have 2 small children and I do plan to continue working through treatment as much as I can, but all the scary unknowns are exhausting

 never though in a million years I would ever say im excited to start chemo, but at this point,  I just want to start!!!! Sooner start,  sooner over. 

Xoxo

Jen 

clarrn

Yes, I too can never remember to take meds so after my  mastectomies I found a free app called dosecast(Android). I like it, you get little alarms and it tells you what to take when, and let's you put in the actual time if you took it late or skipped etc.  When you are done the med archive them and when the Drs ask you have the full list of everything you needed.  I'm sure there is something similar from apple.

lilyrose53

ColdinCanada,  Thanks for the heads up on the port placement!  Actually, my BS did the procedure.  He said he would put me out.  He said it is much easier and less stressful.  I had to agree!  The worst part was getting the IV in my hand.  I woke up about 45 minutes later feeling groggy, but good.  Tomorrow I go to the cancer center for chemo class.  I'm glad they explain things ahead of time.  I don't like feeling the fear of the unknown.  I should start my chemo next week.  Hope all is going well with you.

Thanks for welcoming me here!  Wishing you all the best,  lilyrose53

lilyrose53

Curlyq1974,  Thanks for your response!  Wow, you are young.  I am 60.  I think I'm an old gal for TN.  I haven't been tested for the BRCA yet.  That has been an issue because of my age.  If we can get insurance to pay for it, I will definitely have it done, as I have three daughters I am concerned for.  I am feeling a bit nervous about starting chemo, but I will do whatever it takes to fight this thing.  I really want to be here to watch my grandkids grow up.   I hope all is going well for you.  I am sure that I will be checking in here with lots of questions as time goes by.  I know you ladies will not whitewash the facts of treatments.  I am feeling pretty positive right now, but I'm sure I will need a place to get my feelings out without judgement.  Thanks for being here!

Thanks for the welcome!  lilyrose53

Footballnut

hello everyone!

I too will be starting chemo on April 30th so will be riding this train with all of you!  My surgery was March 17. I met with my MO this past Tuesday and received my pathology report and my binder from the hospital which outlines my chemo treatment and other details about the hospital

I have a heart test on April 22 then my port inserted on April 29. After that I get bloodwork then meet with my MO. This is the same day as the procedure!!  Then comes April 30 and the chemo

I've laughed I've cried and just can't get my head wrapped around this as I feel fine. 

My treatment plan consists of 6 chemo cycles given on a single day every 21 days

For the first 3 cycles I get adrucil (or fluorouracil) plus pharmorubicin ( or eplrubicin) plus procytox (or cyclophosphamide). The last drug is IV and tablets

The next 3 cycles will be taxotere (or docetaxel). 

My treatment plan is called FEC-D

At some point herceptin ( or trastuzunab) will be introduced for approx 1 year every 3 weeks

Then I will take tamoxifen for atleast 5 years

In my binder I have print outs of all the chemo drugs and an scares sh*tless!  

For now I try to put this out of my head. My DH and I are going away for this weekend to relax and enjoy life before all this crap starts

So we will eat all the wrong foods and booze it up. Then I will have 1 week to prepare

I ordered my wig this past Tuesday but also plan on wearing my favourite sports caps a lot 

I plan on sharing once I get started. I wish everyone well!!  LETS DO THIS!!!!!!

ChrissyLB

Good day Ladies!

Well I met with the BRCA test lady yesterday and decided to do the test, due to my age and lack of medical hx from my fathers side. Today I get to go for a pap-smear and a teeth cleaning! Lucky me  I think I have all I will need in what I call my chemo-carry-on bag, tissues, mints, biotene, lemon drops, gum, advil, tylenol, hand sanitizer etc...even got 2 free wigs which I will most def name if I wear them, also got a beanie, scarf and a book on how to tie a scarf... with chemo starting Monday I was happy to hear from the chemo nurse about the meds and all. I have decided that Sunday is a day for the beach! I am in Oregon and our weather has been beautiful the past few days so time to dip my toes on the sand before I am possibly too ill to do it!  Still very nervous about starting chemo, but I have gotten a lot of info here and a few personal messages from ladies who have been there before me which helps so very much! Thank you all! 

Longislandl8y

Mikishelley, it looks like you and I are on the same path.  I also had my first treatment on Tuesday and the Neulasta on Wed.  I felt okay on Wed (a little queasy and some stomach cramping at night) but yesterday I felt just all around crappy with on and off nausea all day.  Today a little better - we'll see if that lasts...

ANYWAY ladies... Now that I've got my first treatment done I think I am finally in a place that I am starting to accept that my life cannot continue at the pace I'm used to while I'm going through this.  I really wanted to be that girl who defied the odds and was able to continue with my exercise, recreational stuff, while working full time, etc. but now see that I can't expect to keep my A Game going while fighting this beast.  I find myself going to bed so early just to get away from feeling like crap.  I wanted to downplay everything for my family and only confided my fears and whatnot to my best friend, but now I see I have to show them the truth.  It sucks. 

Curlyq - thank you so much for the details of your side effects.  That is exactly what I was looking for on here the other day.  I know we're all individuals but it's always good to have others' experience to draw from.  I am hopeful that I will have a good week each month like you, and be able to get some exercise in! 

There is a company called Sierra Trading that sells UV Protective clothing online.  I got a hat and a long sleeved lightweight shirt for gardening from there. 

I guess that's all I have to say for now.  Hope you're all having a decent day.  And that tomorrow is even better! xo

Longislandl8y

Me again, lol.  Yes, I'm feeling chatty today.  I just wanted to share a few of the things I've done in response to some of the possible side effects I've read about.  I bought a good, natural Tea Tree handsoap for my bathroom, so that I can wash my hands with soap more often without worrying about drying them out.  I also got a huge bottle of moisturizer which I put on my whole body after each shower.  I read a lot about infection and dry skin so I'm trying to avoid that.  I also made my own toothpaste of coconut oil, baking soda & peppermint oil in hopes of avoiding mouth sores.  I have a natural alcohol-free mouth rinse as well.  I have always tried to go natural/organic where possible, but definitely stepping it up now since chemotherapy is enough on our bodies - not to mention chemicals from food/health and beauty products.  I also just bought sunscreen - couldn't find anything "natural" so I went with the baby 60+ formula.  I went to the drugstore on my lunch and got that & some Senokot stool softener.  Maybe I'll feel well enough to get outside this weekend since spring has finally sprung in NY!  Best wishes to all you ladies for a great weekend!

lilyrose53

Hi Longisland18y!

The tea tree handsoap sounds like a great idea.  I wash my hands a lot anyway, they are always getting dry, so I will look for some.  You might try a health food store for a natural sunscreen.  I'm pretty sure I've seen it in mine...but it was kind of pricey.  I just had my chemo class this morning.  It was good.  They went over everything I asked about and more.  I'm still a bit nervous to begin though.  My start date is next Wednesday the 16th.  oh, and the nurse told me to try using a mouth rinse of salt, baking soda and water. 

Wishing you all the best!  lilyrose53

70charger

For those of you having yuk mouth you might try club soda, for me it worked better than the soda, salt.  I also changed toothbrushes with each chemo.  I finished ACTIVE treatment Jan 3rd/14.  I had 4 rounds of chemo & 16 rads. Food will taste like swamp water, especially water.  My go to food was poached eggs on toast.  It always tasted like it should.  Try to keep a little something in your tummy.  I ate every 2 hours.  Never had any nausea.  If & when you have a "good" day prepare a meal or 2 for the freezer.  Use these when you are having a "bad" day. You will feel good that family got a nice meal cooked by you.  Family feels good that they got a nice meal at a time when you are not feeling well. I made a list of the foods I missed the most & the resturants that had the best.  I plan to go to these places & eat that food as my reward.

Everyday is one day closer to end of treatment.  Take it one day at a time. Don't worry about tomorrow it is not here yet.  You will get through this.  Hugs to all.  Any questions feel free to ask. I will answer in a couple of weeks when I get back from vaca.  I'm not ignoring you , just on vaca

ColdInCanada

Hello Ladies! I am typing this VERY slowly on my phone, so hopefully autocorrect doesn't do anything too crazy. 

Well, it appears I am destined to experience everything cancer and chemo have to offer. After a week of battling all those side effects, I spiked a fever yesterday (Friday), and will now be spending my weekend in my own isolated room at the hospital. They've yet to determine the source of infection, but so far I've had 3 doses of antibiotics, a couple of shots in my stomach to help rebuild my WBC, and lots and lots of blood taken. 

Mostly I am bored. I miss my kids. And I have a shared bathroom in my isolation room (which really doesn't make sense to me), and I'm sharing it with a BOY who keeps leaving the seat up. :O  GEEZ, right?

I suppose it can only get better from here. Maybe I'm just getting all the bad stuff out if the way in the first round.

linda505

Dang in Coldincanada - hope they find the cause of the infection and get you the heck out of there!!  You are right - you are in isolation but you are sharing a bathroom?  and with a boy??  I hope you are right - you are going to experience everything the first round then sail through the rest.  

lilyrose53

Dear ColdinCanada,

Wow!  You sure are dealing with a lot!  I'm so sorry to hear that you are stuck in the hospital.  I am shocked that they have you SHARING a bathroom when they want you in isolation?  That makes no sense to me.  I sure hope they figure out the source of your infection soon , so you can get back home to your kiddos!  I will be praying for you.  Here's hoping you are getting all the bad stuff out of the way now.

Hugs,  lilyrose53

Kazzy115

Dear ColdinCanada - Ugh!  You really are having a rough go of it.  Even in your message I'm sensing some humor and positivity, which is great to see.  I'm stunned they have you sharing a bathroom! Yes, that does seem to defeat the purpose of isolation, doesn't it?  I hope they find the source soon and get you home.  The hospital is not the place you want to be when you're feeling lousy.  Sending sunshine and healing energy your way. 

SharonDe

Hoping you make a quick recovery, Coldin Canada.  Watch out for the boy cooties (can't believe you have to share a bathroom).