Starting Chemo, November 2013 Group

Just need to do a bit of worry-warting. I've actually found that if I express something here, it helps ease the worry. I had almost no SEs after AC #3 last week. Just a bit of a queasy feeling a couple of times. Had the WBC yesterday and it is actually the best it's been since AC #1. Last week it was 3.8, yesterday 5.6. Now I'm worrying that it isn't working. Why are things getting so much better if it is still working? How can the WBC go up so much?? Okay, yes it's silly. But I know for sure that no one else but you guys would understand worrying that things are TOO good. Now I feel better.

One more thing. And this one kind of makes me feel bad. My resource center is bringing someone named Jill Brzezinski-Conley in for a talk. She's a national speaker who talks about beauty not being defined by an illness. Am I an awful person because I don't want to hear anything someone who is dying of this shit says? To sit and look at and listen to someone I know will not survive would just be too depressing right now. So, am I awful? Or just realistic?

I only woke up a little while ago. I was dreaming that my hair was back; thick as ever and redder than I EVER dyed it. It was about shoulder length and had no style whatsoever; looked like I'd just washed it, towel dried it, and let it go. 

Can't wait til it's back for real, even if it's gray and not so thick. I miss it!

is anyone else having issues with 24/7 queasiness that makes eating and drinking seem completely unappetizing?  I'm 16 days out from my last TC and its a real problem.  Food and drink seem disgusting.  My MO is having me try compazine before meals (and Prilosec) to see if that helps.  I've got to be able to tolerate fluids before my next TC on Friday.

Wallymama, sounds to me like you have no problem feeling good about yourself the way you went right back to work and took off your hat!  I could never do,that.  You are brave.  You don't need someone to,talk to you, you should be doing the talking!  I would not want someone who,would make me feel,worse come and talk to me while I am in the middle of this crap.  No way.  That's why I didn't do the look good feel,good.

Quirky, when I had those nauseous days I just ate what my body would like.  Ice cream, macaroni and cheese.  I threw my diet to the wind just to,get any food in me.  

Wally, red blood count was down yesterday, bit like you the white was high.  Doc said,it was from the neulasta.

Audra, the chemo is definitely working.  Even if you haven't lost all your hair it it. I asked my doc about that.  Also, I still,have eyelashes and eyebrows, although they are thinning.  I thought I just got  lucky but I have read on other threads that they can go later, even after treatment!  But they return fast.

Woke up,to,headache and ear ringing again.  Will this ever go away?

jab: I am STILL in the trenches and certainly don't want to be left behind! I only had 2 chemo treatments so far, with 4 more to go. Yay! Where are you at with your treatment? I am looking at it from a positive prospective: I only have one more red devil (Epirubicin) left. Actually, the red devil should better be called the PINK devil or a ROSE devil because of its colour. 

Audra: After two treatments, I am still sporting some stubble on my head. I didn't shave mine because it gives me a bit of a cushion for my wig or a scarf. When I think of it, I am only left with about 5 -10% of my original hair. As far as lashes, well I still have them as well as my brows, although they thinned a little. Sorry to hear about your new SE's.

Lisa: I miss my hair too. Lately, I like feeling my son's hair (he took after me), as a reminder what it was like to run my fingers through my own thick, brown hair. Sigh.

Smrlvr: What are you taking for your headache?

Quirky: I had a problem with my appetite after my first infusion for about a week. I remember feeling starved, probably from the steroids, but having no appetite. I would often go and open the fridge and just stand there staring, not knowing what to eat, while my stomach was grumbling away. At the end, I would force myself to eat just a little to calm my hunger. 

Wally: You are a brave soul for taking off your head covering and just going bald! 

Ellen: Congrats on your new job!

Talking about hair, I haven't yet shared with you a pic of it after I had it cut. Well, here it is...I had it braided, as my intentions are to donate it for kids with cancer.

Quirkygirl, I too am very nauseated this round (day 6, round 3). I cannot think of any food that I want to be in the same room as, let alone eat! I had to go to get rehydrated on day 4 of this round as my stomach was going into crazy spasms just with water. I can now do tea and hot chocolate, but am still sleeping much of the day. I was told by the Onc, that if you have any underlying autoimmune condition, (which I do) chemo and rads can be harder. That being said -  I've really had enough of this!!

Amazon, I guess we'll be in the trenches together for a while. I also have 3 more taxotere (or D, in Canada). Although I might be 1/2 done chemo, I still have Rads, and surgeries, so I feel like I have really just started. It is great to hear others getting on with thier lives, but I think I need to 'keep focused' on my short term future (i.e. more treatment hell), otherwise, I get frustrated and a bit sad that I cannot be a more meaningful part of society.

The Canadian Cancer Society has been amazing with me too. Their head office for the province is where I live. The other day, I stopped by to get a new boob and left with 4 as I wasn't sure of size. How great is that!

With regards to hair - Oooooh I miss my hair. I was a red head, what is coming back in as stubble is grey. One more 'side effect' that will need to be dealt with!

Still in the trenches here, too. I've done with my A/C but have 12 weeks of chemo left to go, and then 6 weeks of radiation. I've barely begun! Argh!

I just hope hope hope that the taxotere/cytoxan combo, followed by just taxotere, isn't any harder on me than the A/C has been..... I felt pretty good yesterday and today (or, alternatively, I have gotten used to feeling like shit, I'm not sure which,) so I've been working (I work at home) trying to catch up from all I didn't do over the past few months.

This morning I'd been doing some online money-making work and took a break to go load the dishwasher and turn on the dryer and it hit me like a bolt from the blue: 

This **IS** still my life, and I'm tired of taking what amounts to a vacation from it!

 Which is pretty much what I did from the time I had surgery until this week.  I've just been waiting for treatment to "end" so I could get back to "real life," but you know what? Forget that. I'm done waiting. I'll live and work and laugh and take a whole lot of naps WHILE I finish this crap. I've been doing the physical stuff that was really required, but *mentally* I've definitely been sitting around waiting for this to just go away. Well, enough of that.

Which is why I hope hope hope that I can still feel the same when I get into the middle of the next chemo set lol. It would suck to make what amounts to inspiring new years resolutions only to get knocked on my butt by the next chemo and be all "Welp, nevermind. I'm going back to bed. See y'all in April."  :P  

But yeah. Definitely still in the trenches here, just deciding that maybe it's time to decorate the trenches and learn to call 'em "home" for a little while.

LisaCM, that's exactly what I did, dose dense every two weeks; got my fourth and final dose last Thursday.

Don't be scared! It's not that bad, really!

Ativan is good. It will keep you from being so scared, and later, it will keep you from feeling (so) queasy.

You might have any number of digestive issues. I've had them all, EXCEPT, I've never thrown up. But I've had heartburn, queasiness, diarrhea, constipation, extreme gas and impressive burping, etc. Obviously not all at the same time, haha. None of them have been anything more than seriously annoying at the time, but go ahead and stock up on remedies for each thing, including some OTC stuff like Maalox and Tums and Zantac. (My MO informs me that Maalox and Mylanta actually can also help with the constipation, so that's a bonus.) 

Get yourself a variety of things to drink, because you will need to drink a LOT. Drink as much as you can stand. Some days I love Diet Coke, other days I hate it and can only drink seltzer water with cranberry juice. Or tea. Or water. Always drink as much water as you can stand. 

Personally I think the secret to A/C is this: If you find yourself feeling *especially* awful; tired, out of sorts, depressed, sleepy, or just generally icky, it's because you are NOT drinking enough water. Drink drink drink!

Mouth sores can be a problem, but I whipped mine by keeping a solution in the bathroom made of 4 cups of water, 1 tablespoon of baking soda and one tablespoon of salt, and rinsing with that solution EVERY TIME I went to the bathroom. I haven't had a single mouth sore since I started doing that. Not one! Maybe if you do that from the start you'll NEVER have a mouth sore.

On the first few days after treatment, go ahead and take those anti-nausea meds---at least one of them---whether you feel like you need it or not. It's easier to just NOT get nauseous in the first place than it is to get nauseous and then wait for a drug to kick in. After a few days you'll probably be okay with out--I generally am, unless I eat something really crazy (like tonight's General Tso's Chicken... hah.) 

Buy small amounts of a variety of different foods because what tastes good today might taste horrible tomorrow. Some days I can really only eat sweets, for instance, so I have fig newtons and oreos. :P

If you feel like sleeping, by all means SLEEP. Rest all you want to. In fact, sometimes if you just feel awful but not really sleepy often the best thing to do is just go to sleep anyway. The fatigue you get with this is weird and different and you might not recognize it as "oh, I'm tired," but that's actually what it is.

For everything else, we're here with you, so just ask as problems and questions come up and we'll deal with them then: No sense in worrying about side effects you might not even get!

Seriously though, it's NOT that bad, and now that I'm through all four doses, I can honestly say that it's gone by a LOT faster than I thought it would.  You'll do fine!

smrlvr, I am cagey and not always honest if  it behooves me to be more cagey... but what I would do probably do is tell the doc that i have the headache, the ringing in the ears, AND say I had had a touch of shortness of breath, just for good measure. Jog up and down the stairs once or twice if you must be honest about it. That way you get the blood transfusion, the headache goes away, and you know you don't need the brain scan.

Problem solved.

hi all! haven't gotten on for days...gonna try catch up later today...hopefully!  final chemo went well! neulasta today.more after I see how everyone is doing!  huggs and prays!

Hooooray Paulette!!!!!  OMG!  It must feel great!  My last one is tomorrow am!!!! I am right behind you! 

Lisa137- fabulous advice and I think you will do fine with TC as that's just what I did with all of my infusions except the 'sweets' thing...I am eating like a nutritionist trying to help my blood counts and iron and all...spinach out my ears but I swear it makes me feel better!  I feel they have gotten more cumulative - which I did NOT want- as the 3rd really knocked me out the first few days and the first 2 did not.  I tend to feel OK about the 8th day after infusion and gradually back to almost normal.  I am on day 20 and still tired, stomach upset, sore throat, and ringing in my ears...so blood counts will be interesting tomorrow.

Jab- I would get the dog!  Whatever makes you feel good and better I would do...unless it will be too much work, but she's not a puppy and sounds like would be a good fit.  I'm sure your husband will do whatever you want on this...if he is like mine.  Sounds like he is a keeper and been great. 

smrlvr- my cousins wife has BC also and just completed AC x4 and she did get the transfusion after her last treatment and felt WAY better the next day!  She was scared to get it but said relieved and glad she did after..now she is on 5th week of Taxol and back to work and feeling great!  She says taxol is WAY easier and just makes her tired day of...

Lisacm-  I would take the Ativan...I was a weirdo about taking meds at all and NEVER antianxiety or antidepression kind of person and since this- I say 'bring them on' 

I use Ativan every night to help me sleep since this diagnosis....and it helps as an anti nausea as well.  So I take it in the mornings after infusion til day 5 or so with the Phenergan every 6 hours...round the clock so I don't get nausea...and it WORKS! 

I would use every thing they give you and stock up like Lisa137 says - in case-  the mental warfare of this is probably the toughest thing, so if you can control your physical symptoms it will help...and just be ready for hormonal changes, mood changes, ability changes, adjust to thinking that you cannot control any of this and it is doing a job for you killing cancer cells and learn to accept that it also will be a HUGE change and hard to deal with some days..Don't fight it...just lean in and go with it.

WE ARE TRULY WARRIORS AND WE CAN DO THIS!!!

Funny- my 15 year old wants to marry a navy seal, and she says that I am 'way tougher than a navy seal' -that is like the highest praise...lol

Thanks, Audra. I hope you're right; assuming nothing goes wrong in the next few days, I have pretty much been one of those who "breezed through" A/C -- even if it didn't feel that way at the time -- and I'm hoping to do the same with the T/C.

When my hemoglobin/RBC first started dropping I asked my onc if eating more things like spinach would help and he said it probably wouldn't help over the short term like that, but I could try if I wanted. So I spent about a week where EVERYTHING I ate was high in iron (I love that stuff anyway.) Honestly, all it got me was constipated, lol.  So now I'm back to my oreos when I feel like something sweet is the ONLY thing I want.  I don't know though, it could just be a body chemistry thing with me: I tend to eat tons of spinach and such anyway, though not a whole lot of meat, and have always been almost, but not quite, anemic.

My ex-sister-in-law is stage IV and she has to have transfusions from time to time when her energy level gets way low. After she's had one she generally tends to go crazy going shopping and stuff cuz she feels so great. I do not dread the transfusion if I have to have one, in fact, I'd love to have that energy level for a few days!

Smlvr, get the transfusion if it may help. No since hurting if something can fix it. And I'm with jab, two dogs are always better than one. The shelter will probably let you bring your other dog there to see how they get along. We adopted a 10 year old boston mix that someone threw away last year. As my husband said then, old dogs need love too.

Lisa, get those trenches decorated and make it bright. Going back to work has helped me to not think about IT all the time, I'm actually having real thoughts for a change. A large part of those thoughts are foggy and sort of jumbled, but real thoughts all the same.

Jab, being dependent on your husband isn't really a bad thing. I think it may be good for them too, to know that they are the ones helping us through this. But acceptance isn't an option. Ninety percent of any fight is mental, and if we just let it go we'll fail. And NONE OF US WILL FAIL.

Paulette, congrats on your last infusion. I know you feel great about that.

Audra, hope your last one goes better than any others have.  I still have one AC and four taxotere. One day I'll be able to say "I'm having the last tomorrow".

I've been feeling queasy off and on for the last two days. I only worked 5 hours today because of it. Just now, as I was sitting here guzzling a root beer, it dawned on me. I'm not drinking much while I'm working. So even 9 days out, the fluid intake is still very important. Tomorrow I'll be sure to drink more. I'm betting that will clear up the queasy. Drink. Drink. Drink.