Starting Chemo March 2015

Maryellen- you know my name. I am Katy aka JackBirdie. I recommend from Etsy, hats, felted, and slouchy knitted, chemo scull caps, felted slippers, felted and knitted tote bags, earrings, my fabulous earring tree. Please share so i can vicariously enjoy.

Thanks for counting up. I had guessed around 25. It's good (and not do good) to know we are so many. I draw great strength from this group. I know you do too. xox

Heading out to a consignment furniture store today (looking for new couches) and there is a Target next door. I hope I can make it out of the area without breaking the bank but I definitely want to buy myself a treat today. First day I've felt good since chemo so I want to celebrate!

Leigh: I felt exactly like you do on Monday and yesterday all I could do was pace around. The first day was nothing. I had a couple of hot flashes (caused by what I have no idea). Since I am only one day ahead of you, maybe I can tell you what to expect. Neulasta shot today at 2. THAT'S the one I am scared of. Took the preemptive Claritan.

I'm home with my son after a visit to the pediatrician. She thinks he has some bronchial infection that's going around. She gave him an antibiotic. I picked it up at the pharmacy but they never bothered to ask me if I wanted it flavored-- so I thought it did. Poor kid, as soon as I gave it to him he was screaming that "it's burning". I thought he was having an allergic reaction so I called the pharmacist and she says that it's an extremely bitter medicine and that they charge extra for flavoring. I tasted it -- Holy WOW! NASTY! I apologized to him and we'll be taking it over to get flavored. He's resting in his room and I'm working in the living room. I need to work from home tomorrow as well, since the doctor said he needs to stay home. On his birthday of all days! I've been washing my hands like crazy and using hand sanitizer -- we have them all over the house. I'm also wearing my mask.

As for real names, my real name is Joanna. I actually live in SC, though I might as well live in NC since we're so close the the border and to Charlotte. The Coqui part of my username is from being originally from Puerto Rico and the Coqui is a species of tree frog native to PR. It makes a high pitched call that sounds like it's name

I had one of those absurd - only if you are having chemo would you understand- thoughts last night. My husband and I were, ahem, getting intimate and sometimes he tugs on my hair a little. I started laughing as this image came popping into my head of him coming away with a look of shock on his face and a handful of my detached hair! I think I am still safe for about a week but, sheesh, what a crazy thought! (hopefully this isn't TMI for anyone).

Oh, and I am Amy from Reno, Nevada. (although I might not want to admit to that now - lol!)

Okay, still haven't made it out the door to do anything today...

Ok, halfway through with chemo today. Pretty ticked off. First, they forgot my Benadryl then wanted me to take a pill. I said no, I was told I will get it in IV form - more effective. Then they bring my chemo over and say okay Taxotere and Herceptin and you will be good to go. I said hello, I am supposed to have Carboplatin too. She said oh let me check. WTH? So now I have been monitoring everything today, making sure they clean things, etc. I spoke with the nurse practitioner and said am I supposed to be verifying I get the right chemo drugs, or is that this office's job? She went and had speak with several people but I mean, come on. This is my life we are talking about.

Other than that, uneventful so far today. But I am still so mad. Freezing my feet and mouth. Hope it helps with mouth sores and nails! I didn't get any first go-around so I'm not sure how I will know if the icing is working. But I'm willing to do it just in case.

The nurse practitioner here said the IV anti-nausea infusion drugs should last me two days. Is that what others have been told? She said I shouldn't have to take any anti-nausea medications for the first two days. Has that been the experience of those on this forum?

ItalyChick, I was told the same about the anti-nausea drugs. I get my chemo on Tuesdays and was told not to take anti-nausea until Thursday night. I usually get a little nauseated on Wednesdays already, around mid-day, so I'm somewhat uncomfortable till Thursday night. I try to help myself by drinking unflavored kefir, in addition to tons of water and eating frequent small meals/snacks.

Italychick- my nurses told me to take the anti-nausea meds as soon as I was home. They didn't tell me to wait. She said the amount in the prescription is pretty low so there's no way to take too much. If I would have waited two days I would have been in bad shape.

Mine told me the IV meds would hold me for a day or two and I could 'start them tonight if I really wanted to' but that first round of AC hit me within 3 hours...so much for a day or two!

Second round I had the oral meds on hand and they gave me a Sancuso patch to help with nausea. They said I'm one of the few that gets such severe symptoms. Lucky me. Fortunately, the patch did help a lot.

But my DH monitors everything they do. I mean everything! He has a little spreadsheet app on his iPad to keep track of it all. I keep waiting for him to ask me to start monitoring my output too LoL. He used to work in research & development at Lawrence Livermore National Laboratory...that's what I get for marrying a propeller head! He gets so frustrated because they say the brand names of chemo drugs and then hand him a sheet of what I'm getting that day and it's all listed with the generic names. He starts going off about speaking 2 different languages and they need to be consistent. Yeah...I said 'welcome to the world of medicine'.

I'm also getting Aloxi in my IV bags as an anti-nausea med. Is anybody else getting that? I get the Aloxi and the Emend. Also Decadron.

I have no idea what's in mine. Other than the chemo drugs, that is. They just tell me to take zofran the next day and take it for 2 days so that's what I do. I'm going to make a wild guess that I only get the steroids via pill (on days 2 & 3), though, because I crashed HARD my first day last time. Wammo! Flattened by the fatigue truck. I was totally out of it within a few hours. Went to be so early I woke up at 3am and felt fully rested, LOL.

I was fine until I took that Compazine. It wiped me out.

awesome Jackbirdie! Where in Oregon do you live? We have done the coastal area several times, staying in Yachats, Cannon Beach, everywhere. Camped at Union Creek, stayed on the Rogue River too. Oregon is beautiful. But I got in trouble for pumping my own gas lol. Didn't know the protocol.

Bbwithbc45 can't your doctor appeal the rejection? Mine has done that for things. At first I got rejected for the Neulasta. But so far, with it my white blood cell count is holding high. Baby whites (neutrophils) today were 12.5. So it is helping me to not have to worry about neutropenia, and with the Claritin I had zero bone pain with the first injection. Second one is tomorrow.

Oh and did I mention how glad I am I have a port? Person sitting next to me today blew out a vein and they had to re-do his IV. Yikes! It was a fire drill for sure.

My oncologist said take Compazine first if I can because the Zofran can cause headaches and the Zofran hits the same receptors as the amend so it isn't as effective for the first two days. So far, I haven't taken the Zofran. I would be interested to hear which drugs work best for everybody

thank you Italychick! I live in the Coos Bay region, which is is about 2 1/2 hrs south of Yachats. About 25k peeps. The pictures were taken about 50 miles south, at Cape Blanco. One of my favorite places on earth. I had a re-buzz on the head, and now it doesn't hurt anymore. And we visited my dear friend stage IV, who went on hospice this week. A full day for sure.

For chemo one, I did get anti-nausea in the bag, and was told that the continuation of the steroids in day 2-4 also helped, and that was why I should delay the zofran and compazine. As soon as the steroid time was up, I just took the zofran. I didn't wait to feel any nausea. Then I experimented staggering the zofran and compazine as was suggested in an earlier post. I never let my stomach get empty ... Even an bite of yoghurt or a couple of nuts. Had to force myself, but I never did feel any significant nausea. The couple of times I thought it might be coming, it turned out to be gas. Good thing I live alone haha.

Best of luck to everyone for an uneventful night. Always thinking of my girls. Nobody else really gets it.

This afternoon I actually felt human - at least for a few hours! I took DD to swing at the park and I took my little girl along too to play some frisbee. Then I walked 4 times around the park...yay me!! I think all 3 of us were happy to be enjoying to beautiful sunshine today!