November 2014 Starting Chemo Crew

Hi!

I'm one of the ladies from November 2013's chemo thread. A year ago, I was where you are today. A year from now, you will be where I am NOW. Life is good, and I feel great.

For most, if not all, of you, you'll get through this without major issues. It's not fun, but it's not as bad as you probably expect, either. You've most likely at some point been sick with the flu and felt worse than chemo will be, it's just that chemo lasts longer. And for most, there will be days when you feel remarkably normal. 

If I had to do it again, starting tomorrow, today I would go to the store and stock up on the following:

Tissues (Nose hairs fell out, nose ran a lot. Later, on taxotere, I had "taxo-tears". Went through LOTS of tissues.

Children's Benadryl (I kept it by my bed, and when I wanted to sleep but couldn't, and didn't want to pop another Ativan, a couple of small swallows of benadryl did the trick. Plus it's kind of tasty. 

Sparkling water or seltzer water. When nothing tastes like it's supposed to, and yet you need to stay EXTREMELY well hydrated, sparkling water basically just tastes like water. With bubbles. And really, STAY HYDRATED. It really will keep your side effects from being as bad.

For those in the hemisphere that will be experiencing winter along with chemo, soft hats in several weights. On the one hand, you'll tend to get cold because of the no hair thing, on the other hand, you'll tend to get hot because chemo and/or "chemopause" may give you hot flashes, so you'll want at least one very light one, one medium weight one, and one super-warm toboggan. Put them on or by your bed so you can easily switch them out and take them on and off in the middle of the night without having to get up.

Some very wet and quick and easy to prepare foods. Chemo can give you issues with dry mouth, and for me, it made it a real chore to eat something like a sandwich. I pretty much lived on chicken pot pies and macaroni and cheese (which my oncologist said sounded to him like "good solid food" lol.) Soups are also good. If you're into cooking big batches of stuff and freezing individual servings of it, now's the time to do that. Choose or make a variety though, because what you LOVE today might taste like ditch water during chemo. 

Your onc will most likely prescribe you several things for nausea (TAKE them. Don't wait until you are nauseous. I always took all three of mine on the way HOME from chemo, stayed "on schedule" with them for a day or so, and then tapered off as I became more sure my tummy would be okay. I never threw up until AFTER chemo was over lol,) From your local store, add some regular heartburn/indigestion remedies. For me, the magic trifecta was Zantac, Tums, and Maalox. My oncologist said the Maalox was a great choice because it has some laxative type properties, as well.

Which brings me to: Colace or Miralax. Don't just jump in with taking those; some people have diarrhea instead of constipation, but keep an eye on the situation as it were, and do NOT let yourself become constipated. Take it from one who DID let that happen. Not pleasant.

Something to do when you're wide awake at 3 in the morning, whether it's books to read, a tv near the bed, a tablet, crossword puzzle books, or a computer -- I had all of these, plus a friend on another continent who was awake to chat with me on facebook, lol. If you can, sleep when you're sleepy and be awake when you're not, and don't worry about it. For those who can't let their schedule go haywire like that, I refer you back to the children's Benadryl. :P

Very comfy clothes to wear to chemo. I saw some people at chemo who were sort of dressed up, but I wore sweat pants, a tee shirt, and a hoodie every time. You're gonna be sitting in that recliner for a couple of hours at least each time, might as well be comfortable. Bonus: if you're really sleepy when you get home (and you probably will be if you take the anti-nausea meds like I did) you can walk straight in the door and fall into bed when you get home. 

Claritin, if you're getting Neulasta shots. Start taking it the day before chemo, and keep taking it for a few days after the Neulasta shot. In my case, I realized that the Claritin also helped with the runny nose and eyes (of course,) so I just took the stuff all the time.

Something for pain in case the Claritin doesn't do its job well enough, or if you're getting Taxotere (or I assume, taxol.) SOME people do get pain from taxotere. I did. If your ibuprofen or whatever isn't doing the job, call your onc. Don't suffer; it's not necessary. I asked my oncologist to prescribe me hydrocodone at the lowest possible dose, and he did, and that took care of the pain completely. (Likewise, if your anti-nausea meds aren't doing their job, let your onc know. They probably have something to offer you that will work better.)

A "chemo bag." I used a canvas bag with handles, and packed it with a book, my own fuzzy blanket (though they did provide blankets for those who didn't bring their own,) my tablet, my ipod and headphones.... and I actually think that's all. You may want to also pack it with snacks and/or drinks, but I didn't need to do that because drinks were provided to us, there was a snack machine, and my husband went out and got us lunch each time. (Bonus: He'd also bring me a milkshake to drink during the adriamycin push, so I didn't need to chew ice.)

Baking soda and salt. After my first round of chemo I had HORRIBLE mouth sores. After that, I'd mix up a solution of baking soda, salt, and water in a 1 liter bottle, and keep it, along with a small cup, in the bathroom where my regular mouthwash used to sit. I rinsed with it EVERY time I went into the bathroom for ANY reason, and never had another mouth sore.

Biotene mouthwash. Really does help with the dry mouth thing if it's making it hard for you to fall asleep. I also bought the biotene toothpaste, but didn't like it, and wound up just using pure baking soda to brush my teeth. And I still do. Teeth feel cleaner than they EVER did before.

A thermometer. Keep a close eye on your temperature, and follow your oncologists' instructions about when to call if you have a fever. If you have to call at 2 in the morning, do it, and don't feel bad about it. That's why they have someone on-call, and that's what they get paid for.

That's all I can think of at the moment. 

It's probably useless to say this now, but don't be scared of it. It's not THAT bad, generally. And it will go by much faster than you think it will. You will make friends on this thread that will become lifelong buddies, so that's a big bonus. 

Good luck, hang in there, lean on one another (because you all "get it",) and don't hesitate to PM me, or almost any lady on these boards with any concerns or questions you might have. Then, a year from now, do what YOU can do to help someone else! You can do this.

Thanks Lisa for such an informative and positive message.  Congratulations on being a year post chemo.  This site and people like you have been a god send to me.  I have learnt such a lot since I was diagnosed on 21 August.  I fulling intend paying it forward when I have come out the other side.

enlm, I am looking forward on taking this journey with you.  We are in this together ....... and anyone else who comes along.  

Nikki x

enlm and kiwi, i am with you on this crazy trip.   Ladies,  we WILL get through this!  I am grateful you started this thread.   I get my port tomorrow and start my chemo in mid November.   When i was first diagnosed,  they said the tumor was 1 cm, and my onc said no chemo.   But,  it turned out to be 4 cm, and so here I am. At least I didn't have to do rads! I've been wondering about te fills during chemo. I've read about some women doing both,  but my bs and onc said it would wait. ..my ps says he disagrees. Like Lisa advised,  I'm going to search this site before I go to google.  

Lisa,  thank you for posting such a great,  detailed list and encouragement.   I look forward to doing the same in a year or so. For now,  I need to go shopping!  

Hi all, I've been lurking on the boards since August after I was diagnosed.  After three surgeries, I'm finally ready to start Chemo tomorrow (10/30).  Feeling very nervous, but grateful for all the suggestions in this thread and on the board in general.

Thanks for the welcome Erica!  I'll let you all know how it goes tomorrow.

Good luck to all of you! Like Lisa, I'm from the November '13 cohort. You will get through this. Take that Ativan! I'd like to add vitamin water to your list (the kind WITH calories) or any other good fluid: I drank it for the first three days. It's so important that you hydrate hydrate hydrate during the actual chemo session and in the couple days after. It will really help keep your SE to a minimum. Once I kinda slacked off on the fluids and paid for it. It really helps to keep your pee diluted, and (sorry for the graphic details) it will burn you less on the way out if it's diluted. Speaking of that, I used baby butt cream to protect my private parts for the first day and had a squeeze bottle of water in the bathroom to rinse off (this is from the cytoxan for those of you on that regimen).

You'll get through this, and it won't be nearly as bad as you fear. Your fellow travelers here on the board will be there for you. At three in the morning when you cannot sleep you'll be able to post your fears and feelings here and get support and validation.  

     Hey Everyone.  I am due to start chemo in mid to late November too.  The exact date has not been set because my mastectomy wound is giving us a hard time.  I have about a quarter sized spot on my chest that has been slow to close.  My mastectomy was on 9/3.  Originally, I was set to start chemo in October.  

      I am starting with 12 weeks of Taxol.  Afterwards, I have a port placed. I Finish with 12 weeks of Adriamycin and Cytoxan.  Leslienva, I am strongly considering using cold caps.  I've looked into the Penguin brand. Please, PM me with any advice, suggestions, or tips.  Lisa, please send me the recipe or ratio for baking soda and salt mouth rinse.  I am scared of mouth sores and would like to prepared for them when they come.  Thanks! Glad I found this thread.  I feel a little isolated and confused. It seems everyone here knows all too well where I'm coming from. 

Just returned home from Chemo.  It was a long day (10:30-5:00), as I met with my Oncologist before the appointment.  The Chemo itself took about 5 hours as they infused the three drugs slowly to make sure I did not have a bad reaction.  I've been told the next Chemo will be about 3 1/2 to 4 hours from check in to check out.  I had a friend sit with me today, and that was actually very nice.  I'm not sure I will be able to have someone with me every time, but it was sure nice for the first time, and I recommend it, if possible

My only reactions so far are flushed skin (especially my cheeks) - I look like I've spent the day in the sun.  The nurse says this is from the Dexamethasone (the steroid I'm taking for a few days).  I'm also starting to develop a little heartburn.  Hopefully it will not get worse, as I'm prone to gastritis and GERD, normally.  I also feel a little fatigued, but that's probably from the Benadryl. 

It felt so good to finally have my first appointment, and get the ball rolling.  Waiting for a month, with all the nervousness and worrying seemed almost worse than actually starting the treatments!  Now I can say "one down, five more to go"!

The best of luck to everyone.  I'm glad to be a part of this thread.

Hi, ladies. I'm also dropping in from the November 2013 thread.  I had my first chemo exactly one year ago today. I can't believe it!  

Re advice:  Use BC.org often (it was my lifeline), but do realize everyone is different.  It still amazes me what some of us experience that others don't, even though we are on the same protocol.  I agree with everything Lisa137 and Palameda wrote (as always....love you!), but here a few more tidbits that come to mind:

Water:  (I'm beating a dead horse here, but it's THAT important.)  Drink 2 quarts each of the two days prior to chemo, the day of chemo, and at least one day after.  Staying this hydrated will minimize nausea and will flush the chemo out of you faster.  Besides, every time you call your advice nurse with ANY question or concern, they are going to ask you if you are getting plenty of fluids.  I swear this is universally true.  Do not let lack of water cause you problems!

Antinausea medication:  Take it preventatively and consistently.  Do NOT try to be strong and "push through the pain."  Now, having said that, Zofran can leave you with a wicked headache.  If this happens, skip it and go straight to Compazine or Ativan.

Medication log:  Make one.  You think you're going to remember when you took that Zofran, but when you feel like crap in 6 hours, you won't remember, trust me.  I made an Excel spreadsheet because mega-organizing makes me feel like I'm in control, but a handwritten chart will do.  Believe me, when Zofran is once every 8 hours, Compazine is once every 6 hours, and Ativan is once every 4 hours, you're going to want a chart.  

Your "status:"  Do not assume that how you feel today is how you will feel tomorrow.  Yes, that cuts both ways -- you may feel fabulous the day after chemo because you've had a mega-dose of steroids.  The next day?  Not so much.  On the flip side, just because you feel like crap on Monday, that doesn't mean you'll still be on the couch on Tuesday.  SEs are weird and fickle.  Capitalize on your good days and enjoy your television on your low days.  Be flexible!

Sensodyne Toothpaste:  I have had canker sores my entire life, but I used Sensodyne all through chemo and never had one.  Maybe it was a coincidence, but I thought I should pass that along.  

I also have some more personal tidbits to offer that are more related to dealing with BC in general -- wisdoms I've gained you could say.  I think a lot about time now and the passing of time.  I remember before I started any treatment, a nurse told me it would be half over before I knew it.  She was right, actually!  It's been over a year since all of this started for me, and on most days, it feels like it happened to someone else.  I do live in the moment now.  It was a concept I just didn't grasp before cancer.  I HATE that it had to be cancer to deliver that message, but here I am.  I also think about my strength.  I still am in shock to think I stood in my bathroom and gave MYSELF injections in my stomach.  It's just crazy to think of what I've endured and dealt with.  You will find strength you didn't know you had.  

For those of you with kids, I do want to share something I learned the hard way.  I didn't tell my kids (13, 17, and 19 at the time) about what was going on until I could say it without crying.  And even then, I explained it very clinically and told them, quite simply, that the coming year would just be a bump in our road.  I never let them see me cry.  It was important to ME that I showed them how to be strong and brave.  The thing I learned, though, was that it was important to and for THEM that I show them how to be afraid.  Be genuine with your family.  It may not be sunshine and roses but life isn't always, and our kids need to and can learn how to have a mom with cancer.  We are all more resilient than we think!

Please, please, please do not hesitate to PM me with any questions!  The info I got here from those who walked before me was gold. 

Bec65.  Thank you for taking the time to do this.  So, so many great tips.  I am going to do my spreadsheet for meds as being super organised is my default position when I feel that things are getting a bit much.  

Thanks for the advice regarding kids.  I have a 15 and 17.5 year old.   They have not seen me cry, nor have I discussed how scary this is for me.  I have told them what is going to happen, how I am am going to feel and what I will look like.  They've handled it like any other abstract concept - until they see it, it isn't happening.

Thinking of you Amy.  How are you feeling now it's been a couple of days since your infusion?