Starting Chemo, November 2013 Group

LOL,Paulette my brother works for Novartis so he wants to get me some Beano - I told him that STOPS the farts and I want the gas to come out... He's convinced it just eliminates the gas. Lollll - where else could we talk about this stuff????

yipes Wallymama!

yay Wally I feel the same way for my sister and her 4 daughters (as I don't have kids) but it also frustrated me as I was looking for a reason why I lost my mom so young and why I got the danged disease twice.... But as you say, a negative BRCA is a huge yippee for sure!!!

Thanks all for the prayers and good wishes. Much appreciated

First chemo treatment today: I am also only doing A/C at this point. Taxol will come later. Edited to fix: Taxotere. Duh. Not Taxol.

TL;DR version: Chemo went fine, I feel pretty good, all things considered, and am overjoyed that my bone scan was all clear.

My only issue was that the port that I had just had put in on Wednesday. The port itself was okay, but above it was swollen up like a goose egg. They had a tough time accessing it. First nurse tried a time or two, then called another one. Second nurse tried a time or two...then actually got a little flustered because I was getting teary-eyed and she thought she was hurting me (she wasn't, but more on that in a minute.) So they called in the third nurse, who just said "Yeah, we need a one inch needle," then told me to take a deep breath, and had me hooked up in a jiffy.

All this was just for the blood draw, mind you.

None of this was actually painful though-- I mean, yeah it hurt a little, the port site is still bruised (obviously, since it's still pretty swollen,) but as I told them, we were really talking about very low-level ouchies here. The problem was my anxiety issues, and that I'd been told---and I don't even remember who told me this-- a nurse or pharmacist or who-- that I shouldn't take me klonipin and ativan at the same time, since they are in the same drug family but the ativan helps with nausea while the klonipin does not.

I normally take half a milligram of klonipin in the early part of the day, and another sometime around dinner time, but not this morning. Since it was chemo day, I took a half a milligram of ativan instead. Ativan is nice at what it does, but that half a milligram I took at 9 in the morning wasn't helping me much at 1 in the afternoon lol. So I was a little freaked out and fighting back what would have been a highly embarrassing crying jag over something that honestly didn't hurt very much at all.

After the blood draw, met with my oncologist and was told that my bone scan looked fine --OMG YAY!!! That was my final major scary thing to get past. I can breathe now. Now I can breathe. I am breathing.

Oncologist asked me how I was doing, and I jokingly (reference to the movie Airplane!) told him "I picked the wrong day to give up klonipin." He chuckled, but then stopped everything else he was doing and asked me WHY I didn't take it today, and I told him. He asked how much I usually take, plus a couple of other questions, then said "don't worry about it; take the klonipin like you normally do, and take the ativan, too. " He actually said a couple of other things that were both comforting and hilarious but I won't repeat them because they probably weren't entirely proper advice for an oncologist to give me, but I have to say, I love this guy. He's not just concerned about keeping me alive and cancer free, he's also concerned that I'm happy and calm and able to function and living well while he does it.

Next up was the actual chemo. Sweet nurse---the first one who'd tried to access my port -- explained everything she was doing, and why, gave me a ton of advice (most of which I'd already read on these boards which prompted her to say "You've done your homework!") My husband, who was with me, whipped out his laptop and used the cancer center's free wi-fi to get some work done, while I snuggled in the recliner under my new fuzzy blanket with my iPod and headphones, and read a book. Did not need to provide my own ice--the nurse brought me ice and a spoon to eat it with. I suggested they put in a snow cone machine

I didn't get the headache from the cytoxan so didn't need to slow the push down. I actually had a very slight headache before the cytoxan even started---because I'd cried a little earlier. I always get a headache after crying. It actually went *away* during the cytoxan push. Go figure.

Also did not need to ask about the Claritin; both my oncologist and the nurse mentioned it as something that might help with tomorrow's Neulasta shot. Oncologist actually suggested I go ahead and take one tonight, because "why not?" Works for me.

Otherwise, the chemo itself was comfy, fine, uneventful, and went by way faster than I expected.

On the way home we stopped at Subway because I was hungry.

Once home (we live just over an hour from our cancer center) I started hydrating pretty much in my usual ways: I almost always have at least four different things at hand to drink---I LOVE to drink things. So far I've had a cup of coffee (yum,) and my favorite: a glass of seltzer water with a splash of juice (v-8 fruit fusion tonight, but any juice will do,) a diet coke (second favorite usually, but that tastes WEIRD tonight,) and am almost done with my least favorite: a bottle of plain water. Bleh. As soon as I'm done with that I'll go fill up everything again (maybe not the diet coke,) and keep going.

Was feeling a little bit of queasiness---the same thing I get if I ride a ride at the fair that spins me around too much--and decided to nip that in the bud with anti-nausea meds. Felt much better very quickly, so yay for that.

The hour long trip to and another hour back from my cancer center for my Neulasta shot tomorrow may be a different story: We're going to bring along a barf bag, just in case.... Might be a real adventure. I'm thinking I probably shouldn't eat anything *chunky* for breakfast in the morning. Yeah I know. Ugh. TMI. But yeah...milkshake it is.

I am also already experiencing the dry mouth issue. I have a feeling that my MOUTH may wind up being my biggest problem. I wear partial dentures. Around the same time as my biopsies and diagnosis I had to have not one, but two, teeth pulled, and one was infected and had me on penicillin for a little while. Scheduling just did NOT work out so that I could have a full dental visit with everything taken care of before starting chemo.... so yeah. Thrush, mouth sores, and possibly more infected teeth could easily be in my future--just going to have to be ultra vigilant about my mouth.

I have a slight backache, but that may be only be minimally related to chemo: I have scoliosis, and two hours of riding in our truck can often give me a backache anyway. Fuzzy head I definitely have -- but with all the stuff they pumped into me PLUS now having both klonipin and ativan in my system, it would be a pre-Christmas miracle if my head WASN'T fuzzy. A little heartburn, but it kind of comes and goes and isn't severe at this point. Probably the coffee. Or the green peppers on my subway sandwich. Or the v-8 fruit fusion in my seltzer water. Or the chemo. So long as it doesn't get a lot worse, I don't care.

Otherwise, feeling okay. Don't feel like going out and doing cartwheels, but I might manage some laundry before bed, and I did load and run the dishwasher so yay me!

I had an interesting thought on the way home about the advice to NOT eat my favorite foods during the nauseous parts of chemo, and realized that I have some favorite foods that I'd be healthier if I DIDN'T like quite so much, so maybe, just maybe, I can kick my cheeseburger habit by eating them during chemo .... lol. Seems reasonable. I will NOT be risking my love for Krispy Kreme donuts though. No way. None of those til chemo is done, and once it IS done, I will celebrate by visiting Krispy Kreme right away.

Sorry for the long post, but I type something like 80wpm and have manage 112wpm on a "speed sprint" so I can pretty much type as fast as I think---sometimes faster--so sometimes things just get all out of hand.

Hang in here, everyone. We can do this! (Remind me that I said that when I'm whining about my side effects and how miserable I am, please. Thank you.)

Yay Wally! Good news! I am getting tested for the BRCA in January

Paulette, reading your posts always make me smile!

Tonilee....good for you! Glad you feel better with the hair situation, I still have to cut mine off.....in the end it may end up being the horse clippers for me as finding the time to get into a salon just isn't happening. I believe it will be one less stress factor once it is gone.

Picked up the Magic Mouthwash at pharmacy today......nasty tasting stuff. Pharmacist said to be sure to swallow after swishing with it. Hubby found this hilarious for some reason. Darn men! I am seeing my Oncologist tomorrow and will ask him about the Dilfluxion?spelling? Anything that helps get rid of this faster would be so appreciated.

tonilee - something you may want to consider if you are still seeking something to address the potential high, but technically negative, Her2 is a vaccine trial after you finish treatment. I don't know whether enrollment would be affected by your current trial enrollment, but this is a vaccine trial that I am enrolled in. One arm of this trial (the AE37 arm) is accepting lower expressing Her2 patients, but you have to be histologically compatible (A2neg). You would also have to travel as it is only currently offered in a few locations. I have linked the trial info for your perusal. You have some time to think about this, but just wanted to offer it.

http://clinicaltrials.gov/show/NCT00524277

Gee silly me thinking this was going to be easy because infusion was easy. I now have major heartburn and nausea (took a tum and then metoclopramide which helped for a while) Not due for another metaclopramide for almost 6 hours. I am tempted to take ativan for the nausea but 3 of them didn't get me any sleep last night so will try the zopiclone prescribed for sleep and hope it does the trick so I won't notice the other stuff. Sore throat and many odd aches and pains. The heartburn scared me at first because it felt like chest pain but the tums working chilled me out.

Going to do some deep breathing. I think once I know these are all temporary side effects instead of thinking "what the heck is this?" I will better tolerate it. I was going to take Claritin tonight and tomorrow morning before my afternoon neulasta shot but I think I will pass on tonight's dose since I am taking so much other stuff.

Glad to have this forum to vent this stuff.

I hope everyone has on ok night. xo

virginia...eaT the beano when u eat...espesially gassy foods...then take the gax x to de-bloat ur tummy. I though it was my messed up system that was swelling me up to be a float for the thanksgiving parade!!!!!

It's 5:30 in the morning, and my last post was only 4 or less hours ago, BUT, I am here to triumphantly say that I survived the waves of heartburn, and slept for a while. I'm still really groggy and so will probably go BACK to sleep soon (thank you, ativan.)

What finally did it I think was a combination of the prilosec, and then changing my tactic from the logical-let-gravity-help-it sitting up in bed position to lying down on my left side, and straightening out---which has always helped me with *nausea* before, and this time, worked a charm (after a few minutes) on the heartburn.....well enough for me to sleep anyway. The prilosec already had me burping and (warning TMI coming, turn back now) and once I straightened out onto my left side, farting also happened. Only once or twice, but holy cow I was glad I was asleep in a room by myself. I'm pretty sure a noxious green cloud surrounded me entirely for a few moments there, and if I had been outside, someone probably would have called a HazMat team. Worth it tho. Made me feel much much better.

Unfortunately, after a couple of SMALL swallows of my seltzer water with fruit juice, a touch of it came back already (glad to see I'm not the only one who loves loves loves the stuff, Paulette!.) I HOPE I'm not going to have problems with fruit juices and heart burn. Blah. Or with fruity things in general---I was a little suspicious last night that my beloved strawberry-banana kefir was the culprit. Kefir is my probiotic of choice, and I really love the taste of the stuff. May have to do some experimenting with juice types or something. I've actually gotten heartburn just from eating a banana in the past (life is so unfair sometimes,) so there's a thought. Not sure how much heartburn like THAT I'm willing to suffer through to find out if that's the problem. The geek in me (and I'm 98% geek) wants to do it for SCIENCE, haha, but the rest of me is like oh hell no, that heartburn HURT!

Won't it be ironic if it turns out that I can't drink the healthier stuff and have to stick to diet coke?!

Anyway, no actual nausea through any of that, just wave after wave of really painful heartburn. Otherwise, groggy and sleepy and a tiny but hungry but if I get up for a snack our dogs will wake up and I don't want to get THAT circus started just yet. Plan for today: get some snacks to keep in the room where I'm sleeping for times like this. And get my own supply of prilosec, since that zantac did NOTHING. And ride an hour each way for a Neulasta shot. Yikes yikes yikes I can do this I can do this. Yes, I can do this.

@tonilee, I just read back and saw what you said about trying to find the balance between optimism and being realistic in this situation, and your anxiety. Having been in that boat, and suffering through some REALLY dark days, I will say that going ahead and taking the klonipin---just a half a milligram in the mornings and another half a milligram sometimes in the evenings (you'll know when) pulled me out of that and turned me back into a rational human being. Both my PCP and my onc. agree that a dose like that isn't going to give me any real problems, I'm on strict orders from my PCP to let him know if I start feeling the need to increase the dose, so we can revisit whether I'm stepping into a danger zone, and my onc is with him on that one 100%.

Please feel free to PM me if the whole anxiety thing is an ongoing real problem for you and you want to talk about. I'm here.

@Paulette: I'm fascinated by the saga of your hair, and laughed at the idea of building a small animal with the remnants. I've been that stereotypical Leo for most of my life---lost without my long shaggy mane. I didn't actually MIND losing my breasts to the BMX, believe it or not: I never liked them anyway. They were NOT good breasts, even when I was in my *teens* they were heavy and uncomfortable (and it's not like they were LARGE; barely a C cup.) They were pale and too many veins showed thru them, and I barely had aureolas at all - I mean, I DID, but they were almost as pale as the breasts.... I never ever liked them, and in the sweaty summertime I actively despised them.

But my hair! That's a different story. I've had multiple guys who I hadn't seen in years approach me from behind and hug me and say "I'd know that hair ANYWHERE!" I've never been able to do a THING with it; gave up years ago, and always have just washed it, toweled it, pushed it into some sort of generally "planned" look and let it curl or not curl, wave or not wave, and do as it pleased. I've had multiple hairstylists attempt to trim it (or once even CUT it, yikes) and without fail, each and every one of them has said I have the thickest hair they've ever seen. It would take forever to cut, and part of it's unwillingness to style was that it had ever possible texture (almost) going on in one location or another. Coarse and with a tendency to curl here, baby fine and impossible to curl there, soft and perfect in yet another area, and everything in between.

After my BMX when I couldn't manage to brush it on my own and was spending most of the time in bed (to speed up the removal of those 5 drains!) I took a deep breath and let my husband cut it. He did a great job (he is NOT a hairstylist and cutting my hair scared the crap out of him.) He cut it to a length that I could manage to keep untangled and sort of arranged looking on my own, with some real brushing help from him.

But now...chemo. I think I'll be okay with losing it, because I know it will most likely come back, but whether it will come back as wild and crazy and downright resplendent as it WAS....I don't know. I think I can't do what you're doing, though I wish I could, but for one thing, if I let mine start coming out in clumps, my DOGS WILL MOST LIKELY EAT IT, or try to. Can't have that! Sooo I think that maybe this weekend we're going to go on a goofy hat and pretty scarf buying spree, and I'm going to take control of this hair thing by letting him buzz it for me. Wigs aren't for me---wigs would pale in comparison to my crazy fun hair---so yea, I'm going totally with hats and scarfs.

Plus as I said to my husband "I decided not to get reconstruction, so fake hair would NOT be in keeping with my theme here."

I *think* I'm ready, but I think that when the time comes, I'm actually going have an "existential crisis" for at least a day or so while learning to like the new hatted, scarved, or bald, me. After that though, I'll be fine. I think. Yikes! My hair! lol.

Lisa137- I remember having heartburn as one of the side effects I experienced with my first round of chemo.  It was only that one time and never again in Rounds 2-6.  I drank icy cold ginger ale which seemed to help.  I know the burping side effect all too well.  I think I started burping like a drunken sailor after that first round.  Although, I don't burp as frequent or as loud as I did while I was on chemo, I am known to let out a few good ones.  While I was on chemo, my teenage son and I would laugh our heads off when we compared our burps during our burping contests.  LOL.... just had to find a way to laugh whenever I could.  My onco told me that I could take some Zantac for my heartburn but I opted not to take it since it never seemed bad enough  to take anything.  Hope you feel better soon. 

wallymamma- Yes you can take Zofran with the Decadron so you can help prevent the nausea before it starts.  I used to have a day overlap of Decadron and Zofran the day after chemo.  My onco told me that she used to prescribe Decadron to be taken for 3 days starting the day before chemo and then Zofran starting the day after chemo.  If you feel like something is brewing, make sure you eat something bland with those anti-nausea drugs like mashed potatoes, crackers, etc since taking those drugs can cause nausea on their own when taken on an empty stomach.  If you are feeling a little queasy/nauseous.... try some ginger ale or perhaps some ginger tea or ginger drops.

wallymama, get that zofran insides ASAP! Yes, you can take it with the decadron, my onco said they work together. Lisa And inks, so sorry you have beautiful hair and will have to lose it. I can imagine that that would be so hard. Me, I've got flat, baby-fine blobby stuff so I'm looking forward to wearing my wigs and looking more glamorous than usual!

Ah amazon so sorry that happened. I hope the morphine helps and the antibiotics kick in quickly. Take care.

Amazon, so sorry about the infection. Don't let them make you feel you're some sort of odd bird for getting a post-surgical infection. Yes, they are uncommon, but that sure doesn't mean they don't happen. I spent months battling mine, and I hadn't started chemo yet. This must be sooooo hard.

Amazon! That stinks! So sorry about infection and hospital both!

I got my mastectomy about a week before you...and I have had odd pains in them both lately...MY oncologist said they could potentially ooze at incision sites from the chemo....that hasn't happened but freaked me out that it could..

Wishing you get it cleared and get home soon!