Starting Chemo, November 2013 Group

Northwinds- hugs - hoping for good bloodwork results.  I never stopped my period in AC chemo or on tamoxifen.  But, on TC, my period is now 9 days late - I have an app on my phone that keeps sending me an alert....I'm thinking it thinks I'm pregnant.....hahaaaaaaaaaaa .  Anyhow, I have been having the hot flashes, so I am thinking I am in chemo pause.

Ok, for everyone, this is a really stupid question, but what are the numbers they look at besides WBC to determine if you can have chemo?  RBC?  If you are out of range but close, do they go forward?  I don't usually look at my numbers, but they gave me a copy yesterday, so I have been studying it and some numbers are below range, but pretty close.  My WBC is 6.2 so within range...

On the topic of bald heads.  My husband doesn't mind my bald head at all.  He's even told my I have a nice shaped head.  When I was diagnosed, my husband told me when I lose my hair, he would shave he as well.  He kept his promise and shaved his head the day after mine was shaved.

I told HD that he better tell his family be for the holidays, so they would think we joined the Skinheads or some other cult.

Hello, everyone,

Audra, I also,take .5 mg Ativan to go to sleep.  Lately it hasn't been working as well, so I may need to take 2. The onc nurse said that could happen.  I just don't know what I will do when they stop prescribing Ativan! I haven't been able to go to sleep naturally since being diagnosed. 

About hot flashes, what do they feel like? I haven't had my period since before chemo and I think I am having hot flashes but I am not sure.  Sometimes I just feel hot and a little sweaty and it goes away in about 10 minutes.  Sometimes I wake up at night and have to take off he blankets because I am hot but then I get cold and put them back on.  This is nothing near some of the hot flash horror stories I have heard which is why I'm not sure.

I hope everyone is doing we'll. I also am heading back into the chair on Monday.  Last AC, so that is good. Halfway done!  Just now trying to get prepared with what to expect from taxol.  I still have the sinus headache and ringing ears.  I will ask onc about that on Monday.

Have a good weekend, everyone!

Working backwards on these posts this evening because I'm having a backwards sort of day....

@smrlvr that's the same sort of hot/cold flashes I have, and I read (in the same study that suggests that MAYBE those of us who gets those and other regular menopausal hot flashes MIGHT be less likely to get recurrances. So yay for those!) Apparently this sort of failure to thermoregulate ourselves is sort of common to cancer patients once chemo has been started and is maybe somehow an instance of the body's own immune system helping to work against cancer.  At least, that's how it read to me.....just a study, something from 2011, and no results were shown, but I like the idea so much i'm gonna stick with it.

A milligram of Ativan is still a pretty low dose. Benadryl works wonders for putting me to sleep, too. Also, melatonin if your doc says its okay. Mine said it was alright with him.

Congrats on last AC coming up! I got my 3rd one yesterday, so one more to go. Can't wait to be done with it and onward to the next thing....except for one thing:

WHY do I dread the upcoming radiation SO MUCH?!  Is it just because I'm going to be driving myself to those instead of having the companionship of my husband? Just because they are EVERY WEEK DAY for what sounds like forever? (6 weeks, yeah yeah I know.) I really really dread it! I haven't been taking my second dose of klonipin all the time recently; haven't needed it, life is calm and good for the most part but I may require them to build an entire new klonipin factory to get me thru radiation! lol

Getting caught up on many posts....

I definitely am grateful for DH. Whenever I lose it at him (recall the Christmas card photo), he just stands there and lets me scream, and never gets defensive. He must "know" I'm temporarily going bonkers and he just lets me get it all out. He did my drains (and smelled them for funky odors too, Lisa!), checked out my scars to make sure they healed properly, and he looks at my gross port sore everyday. The whole family examines my bald head as if it were a science project. I do understand how lucky I am.

Re relationships with ppl post DX -- I renewed a relationship with an old friend over the summer before all this started. Something made me want to do that, then I was diagnosed. We hadn't gotten together even three times when I told her my news and how much I was going to need her. She has kept me company, walked with me, and given me thoughtful gifts. She'll listen if I talk about cancer, but I know that she doesn't really know how to respond, so I pretty much stick to the here and now, not fears for the future. And it's nice to take a break for all that anyway and talk about our kids' college applications and other life crap. I love her.

I have a few great work friends who have all been dependably wonderful. One went through lymphoma treatment a couple years ago. We were never more than coworkers until I told her; now she checks in with me all the time and is wonderful. Two other good friends would walk through fire for me, I know. Another, though, has been practically radio silent. I feel like this hits to close to something very painful for her, so she has her protective shield up. That's okay. I remember someone once said to me, "You can only do what you can do." I guess she's doing that.

My BFF lives 400+ miles away, but she's been my rock. She visited this August for a few days while she was driving north to visit her son in college. She stopped by on her way back down, literally minutes before I was leaving to see my PCP to get my boob checked out. Weird? Yup. The timing of her visit as well as the timing of renewing my old friendship continue to amaze me.

My best example of an unexpected cancer relationship is with a dental hygienist in our dentist's office. The office has four hygienists, and our family has seen all of the them for about 20 years. I was in the office in September and was telling the dentist about my situation when Susie the hygienist happened by. Everyone, of course was super sympathetic, and that was that, or so I thought. Since then, she has become my fairy godmother! She sends our family fun gifts (DVDs, popcorn, an abundance of gifts cards to places like Starbucks, pizza places, Barnes & Noble), and sends me inspirational cards, messages, and hand-written letters of support. Our dental hygienist! She makes me think of the work friend who deals with this by keeping her distance -- something about this must hit so close to home for her, but this is her way of dealing with it. I am blessed!

I'm like everyone who said they express their deepest fears only in this forum. I haven't really gone down that path here, but I know I could. I have scary visions of a future that creep into my head throughout the day everyday, but even writing them here makes them too possible. But if I were ever to communicate them, it would be with you because you all get it and everyone in my non-virtual life would be too upset. I'd feel too guilty for burdening them. And like with Lisa, my mom would get it, but it would probably put her in the hospital.

Okay, I'm going to lighten things up a bit and get caught up with everyone...

Phebe -- I like your photo!

Lisa, I love the explanation of hot "flash." I stripped down as much as I could in the infusion room, but hot is hot., BTW, are you doing Taxol?

Ellen, I definitely thought of bald heads when reading that headline!

Wallymama, I hope your SEs clear up. You deserve more of a break before the next round!

Audra, I keep a log of everything too. Might be a bit of a control thing for me, but it has been useful in making some predictions and plans. What is the dosage of the Ativan you take at night? I took one last night and got back to sleep an hour after I took it and even then, only for two hours.

Pam, boo hoo about your counts! How are you feeling after steak and eggs?. I do love being in chemopause, but its SEs I can do without. I've seen the commercials, but I never truly appreciated what vaginal dryness really is. My goodness.

Pat, I want your infusion room!

Virginia, my MO looks at WBC, ANC, hemoglobin, and platelets. They also look at my liver and kidney functions to make sure they are within normal ranges. My numbers are usually in the lower end of things, but my platelets were at the upper end this time...go figure!

Smrlvr, I'd describe a hot flash just like what you've experienced. I'm glad you mentioned your Ativan dose because .5 did very little for me last night. I probably won't need it tonight though, since the Decadron should be out of my system by then.

So, here's my Taxol experience for anyone interested. (It seems like I'm the first among us, right?) Well, so far, so good! I'd have to say that today was first the day I've felt the most like my old self in a long time. I walked 4 miles this morning, have had lots of energy, my stomach has been absolutely fine, my mouth feels fine, and I feel pretty clear-headed. I know this is all supposed to change literally overnight, but yeah for today!

The infusion was about 5 1/2 hours. They started with the premeds which consisted of Pepcid, Benedryl and a 20mg of Decadron. All this is to help prevent an allergic reaction to the stuff the Taxol goes in with. Then they do a test run of Taxol to see if there's an allergic reaction (tightening of the throat and other stuff like that). I was fine, so the regular infusion started, slowly at first, then at the regular speed drip. I didn't feel anything as it went in (not like with Cytoxen), just needed to go to the bathroom a few times. (As an aside, even though the pole is portable, it sure is hard to get all organized in the bathroom with the my pants, the tubing, and the seat cover without the automatic toilet flushing before I ever sit down to pee. I hate those things!) There will be no need for the test run next time, but they'll probably start off slowly again just to make sure I don't have an allergic reaction. If all goes well, my 3rd and last infusions will be at regular drip speed.

I was able to fall asleep on my own, but I woke up wide awake around 3 am and took an Ativan. I'm not sure it helped, but I did get back to sleep until about 6:30, and I've felt good today. I'll do my Neulasta shot tonight around 8 pm. My MO and the infusion nurses said I'll probably need Norco at night for the next few nights, and Tylenol during the day. Hopefully the aches and pains of Taxol and Neulasta will coincide so I can have at least one good week before my next round. I'll let you know!

(BTW, I'm doing Neulasta this time, but may not need to after the next rounds; it will all depend on my labs. I guess that's a thing with Taxol -- not necessarily a complete wipe out of WBCs.)

Whew, this was a long one! I hope everyone has a good evening and night.

@BigT16 yeah my WBC and all the other complicated things that go with it seem to be just fine---better than before chemo even, but my RBC is down. The word "transfusion" was mentioned if it keeps going down at the rate it has been. (My husband offered to give me blood if I need it ....we ARE the same blood type....awwwww.) I asked the nurse practitioner if I could help it out at all with diet and she basically said "no," but I'm gonna try a bit anyway, because that doesn't make sense to me. Can't hurt to try and luckily I can happily live on raisin bran, hamburgers, and spinach, anyway, with almonds for snacks. Can't *hurt* right?

@Bec I think my husband considers me his science project. He inspects my scars, my head, my port, and God forbid I try to do something he doesn't think I ought to be doing.  Of course that's just MOST of the time. Other times, he vegges out on the sofa and plays video games while I clean the house....and I am glad for that. I love that he loves me, but I also love that he gets it that I NEED to start getting back to normal a little bit.

"You can only do what you can do" is very similar to one of my favorite lines for when people are disappointed in others : "The best anyone can do is the best they can do. It might not be the best YOU could do, but for them, it is."  I have to remind myself of it sometimes, too, of course. Everyone's got their own road to walk, I reckon.

I guess one reason we COULD express our deepest fears on this forum is because we all share them, just a little bit, so there *should*, in theory at least, always be someone to talk us down off the ledge. I confess that when I'm feeling my darkest fears, I don't *express* them here, but what I DO do is go to the oldest posts on the stage III boards (since I am stage III) and click on the names and see just how many ladies from THOSE days are either still around and still posting and doing just fine, or simply stopped posting (which I believe 95% of the time means they got done with treatment and went back to LIVING.) I seek out threads on these boards where others have expressed their deepest fears and been talked down off the ledge, and these things never fail to make me feel better. I always wind up realizing that whatever my darkest fear of the moment was, it probably won't ever happen, and if it DOES happen....it will not be TODAY. Not today and not this week and probably not this year or even the next.....so yeah. In a whole lot of ways I'm actually no worse off than I was a year ago. Not really.

Not doing Taxol presently, no. Adriamycin and Cytoxan, three treatments down and one to go. Then I'm moving on to either taxol or taxotere (we're unclear) and maybe more cytoxan (unclear about that also.)  After that, radiation, surgery (ooph or hysterectomy) and at least 10 years of whatever comes next---Femara I think/hope, because I believe it's known to be more effective at preventing ILC recurrance.

FYI: from my post-surgery days, don't go getting addicted to this or anything crazy like that, but while you have both Norco *and* ativan on hand, be aware that if you take the two together you might experience a bit of OMG EUPHORIA for a little while. I did it because my surgeon prescribed both drugs and didn't say I *shouldn't* take them together, so sometimes I did. I didn't get addicted to the feeling lol but it *was* nice to take a little vacation from misery once in a while.

I've been sleeping pretty much the way you describe for most of the time since chemo started; asleep at maybe midnight, awake at around 4 in the morning, back to sleep around 7 when husband leaves for work, and the only times I can seem to sleep more than 4 or 5 hours at a time is right around the end of the chemo cycle. This is with either .5 or 1 milligram of klonipin per day in my system, plus whatever anti-nausea stuff i'm on (which can include ativan,) so one would THINK I'd be sleeping all the time, but nope. My mom said that when she went thru one of her cancers--I honestly can't remember which one---there was a running joke amidst some of the women she was doing radiation with because they ALL woke up at 3 or 4 o'clock in the morning and were completely bored.....so they started calling one another on the phone, just to chat. SO maybe it's a cancer treatment thing?

Today was unusual for me. I had chemo yesterday and felt utterly awful last night - tummy felt terrible, not quite heartburn, i burped once and I swear if I could have SEEN it it would have been a puff of gray smoke, cuz that's what it tasted like. I woke up feeling not much better....and then had to ride an hour each way to and from the cancer center to get my Neulasta shot.

I actually don't much remember the ride up there, I was feeling so bad. The ride back? I don't remember that AT ALL because (lol) we have a foam rubber mattress in the back of our SUV from where we went on a camping trip a while back and since it was only for one night we decided to sleep in the truck instead of pitching the tent. So......when we walked out of the cancer center I went directly to the back of the SUV, stretched my pitiful self out on the mattress, and slept the entire way back home...thru three counties. Came home, went BACK to sleep and slept til 4 this afternoon. Tonight I'm feeling just fine!

@Quirky isn't it funny what some people consider TMI and others consider cute? My mom--usually the world's most senstive person---is actually the one who said to me "Please don't walk around with a nekkid head!" It made me laugh though, and I assured her she had nothing to worry about. I do it here around the house sometimes if I can't get my head temperature comfortable any other way, but I'd be mortified if I walked outside with nothing on my head. And yet, sporting the flat boobless look hasn't bothered me -- I LOVE not worrying about or wearing a bra. Go figure.

@Audra A girl's vacation WOULD be a lot of fun, but have you looked at where we all are and where "somewhere in the middle" would actually be? LOL.... The logistics are enough to give me a headache. It would be fun to at least meet up with some of you though, for sure! Or maybe at least some group skyping.

@Lisa - it is funny. And funny how different we all are.  I've been all over town with my 95% bald head uncovered.  Sometimes I wear my sassy oversized sunglasses and figure if I'm comfortable with my baldness, the world can deal.  Besides, with hot flashes I'm finding hats get hot awfully quick!

Is anyone else having really strange dreams? I've always had sort of weird dreams, but lately they are just flat out strange. Not that I think it's an actual physical SE, maybe more like an emotional one. Perhaps my head just needs to act out at night so it can stay straight during the day. I have found that gradually the Big Ugly isn't the very first thing I think of when I get up in the morning. It's still the last thing I think about at night though, but mostly because the darn port still means I can't sleep on my right side. Not sure why, but it sticks out more now that it had to be fixed than it did before so even trying to pad it with a pillow doesn't work now. My youngest daughter and her man are moving to their first house today, renting with an option, and I feel horrible that I can't help them. First, it's too cold to be out that much with the shiny head, and second, I still can't lift with the port arm. She said it's okay, I can just help her do something with the yard in the spring. But I still feel bad about it.

Audra, getting together sounds like fun, if we could possibly manage it. Do they put ativan in your IV during your infusion? I've been told that that can cause headaches. If so, see if they can try a different drug and maybe that will help.

Lisa, it's great that your hubby is so good when you're sick. I think that that's a sign of a really good relationship. My hubby hurt his back once and I had to help him shower and get his socks and shoes on. I can't imagine that I would have done that for my ex without resenting it. And as for being afraid that he might want a younger woman, honey, if he's smelling your drain fluid, you're stuck with him for life. A friend of mine is 16 years older than her husband and she has the same fears. They are probably smart enough that they thought about that in the beginning, and yet they married you guys anyway. As I've told her, he loves you, anyone can see that, so calm down and enjoy now while you have it. All the age difference means, is that with the difference in life expectancies between men and women, you live to the same time. Holes in the body really don't bother me too much. When I had the perforated diverticuli, looking at the 'hole' couldn't possibly be avoided. The incision started at my breast bone and went to below my navel (44 staples).

Smrlvr, yep, that's hot flashes. Not all of them are as dramatic as needing to rip your clothes off. The only symptoms I had with menopause was a sudden, hot feeling on my face (my sisters were soooo jealous). If you get a sudden, hot feeling, that just as quickly goes away, it's a hot flash.

BigT, at the big family Christmas, (the first time most of them saw the bald) everyone keep telling me what a nice shape my head is, that the bald look was good on me. Not sure if hubby really likes it or not, he seems to think that women should have hair down to their knees, not that I had long hair anyway, but at least he says it looks good. Again, because my head is such a nice shape. If it wasn't winter I'm not sure that I would even wear a hat when I go out. I don't care who stares, who turns away, who snickers, who whatever. I really hope that some woman looks at my baldness, and thinks "maybe I should see a doctor". If, by being bald in public, I can get one woman go get checked out, then being bald will be a very good thing indeed.

Phebe, good for you! I barely had time to let it sink in, much less do anything fun before treatment started. Found out on a Monday,  three weeks later had the port put in, one week after that took my first trip on the chemobus. Wish I could have done something with my girls in there somewhere.

Thanks Bec for the heads up.  I start Taxol/Herceptin on Thursday for 12 weeks.  No radiation for me.

Sending a big round of virtual hugs and good thoughts to all of you!!!!

I know where you are at this point of chemoland.... in the midst of it and seeing and dealing with the physical changes the chemo has brought.  I know there are days that it is not easy for each of you and then there are little snippets of time and glimpses of feeling fine that are wonderful reminders that you will each have a life after you exited chemoland.  As for dealing with family and friends who believe that you want the "Pink Parade" gear, try to take what they give you with a huge grain of salt.  They travel with you and have not travelled this way before.  Yes, they can and will say things that may be inappropriate since they may not have any filters on their thoughts and just release them without thinking.  For those family members and friends who continue to support you, hug them often and tell them many times " I love you!"   It will help them as well as you.  Your positive attitude which I know may be hard to find is there.  You have to keep nuturing it as you are nuturing your physical bodies.  You are amazing women and doing your best to push forward.  I can only stand on the other side of things and just give you a little hope that things will get better.  Just have to believe and believe in the inner strength that is there and continually growing.

To answer Audra's question about antibotics to help prevent infections, yes.... it is sometimes used since it is a cheaper than having the Neulasta shot.  Like Ellenkc said, a Neulasta shot does help prevent a trip to the ER and hospital stays because of low WBC.  I, too, am someone who only starting receiving the shots once it was demonstrated ( had a high spiking fever/chills) to my onco that I needed the Neulasta.

To answer Goldie's post about weight, do yourself a very big favor.  Try to eat healthy as best you can.  Now is not the time to be on a diet for the purpose of losing weight.  I know it is aggravating to get on the scale and see the weight gain.  Part of the weight gain can be from the steroids and fluid retention from the chemo.

To answer about hot flashes...... I keep an insulated mug of ice and water next to me wherever I am so I can sip and cool myself off.  I also have been known to stand in front of an open freezer to cool off myself off.  At grocery stores, the frozen food section was my go to place when I was out grocery shopping if I had a particularly hot one!!!!  I also have a cool gel memory foam pillow that I got at Sam's Wholesale for about $30.  It helps.  You may also want to check out this other pillow called a "Chillow" on line.

Just wanted to also tell you that I love seeing the photos of each of you and reading all of your posts.  Don't ever feel lost or alone .....because you are not.  Don't ever feel that you aren't beautiful ..... because you are.   The beauty is there.... not from your physical appearances ..... but because you are beautiful souls.

Many hugs and of course wishing peace, calm and easy times for all.

Hi Phebe!

Love your avatar!

this is my wig. I don't wear it yet due to sensitive head but when I go somewhere I wear a partial wig and use a tourban or toque.