Starting Chemo September 2015; join us!
Comments
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Hi Annie. I hope you are feeling better today. You've been having a rough ride
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Puking into the 10 liter bucket my husband bought me is SO much less awful than puking into the toilette. Lined it with a plastic trash bag --- just lift it out and dump it; easy clean-up. Highly recommed.
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Prettiest spew bucket Ive ever seen hope the spewing stops soon.
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I agree the bucket it better. My bucket isn't lovely like that though!
I'm better today tessu. I've been putting heat rather than ice on my port and it's helping. I'm getting some sickly green and yellow bruising but thats a good sign it's starting to heal. My bowels are settling down so the pain is getting a chance to heal too. I have a cold but I got a cold last round too at the same time post chemo so I'm thinking that's going to be a pattern. Fever holding just under 100 so the nuelasta is doing its job. Day 11 today. Adriamycin was a tad worse with the SE. 2 more rounds to go.
I hope you and everyone gets over the hump and feeling better.
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Artista - I am sending you love. I hear and agree with your decision not to tell your parents or to update your brother. Find, instead, sources of love and compassion who want to make you feel valued, loved and better during the wait. xoxo - Lisa
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Artista I wouldn't have told people either if not for the fact I have such young kids and needed the extra help.
The waiting is the hardest part. I'll be praying for you for good results .
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Artista, I obviously was working on my post at the time you posted your update. I'm so sorry I didn't see it before now. That sounds terrifying to anyone, but don't freak out yet. So many scans are done that look terrifying, but we are going to pray that these are biopsied and tested and found to be fine. And no matter what happens, you are part of OUR group and we do not give you permission to leave.
Soscaredhubby--your wife looks absolutely stunning! So happy that she's doing quite well, and I honestly think the reason she's so beautiful is because she is loved well. It has a direct impact on a woman and you are doing an excellent job.
I'm hoping I get to go home today! Four days in here is really more than enough. I didn't spike any fevers last night and we can manage pain with oral meds, so the case can be made for me to recuperate at home. (Though how much recuperating would happen there...) I know this week has really taken a toll on my daughters, so even if I'm not recovered to even a 'chemo normal' state, being present at home will likely make a difference for them. We'll see what happens on rounds today.
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I've been away for a bit and now catching up. Nausea and now some bone pain make me one miserable b*tch. I feel guilty complaining about it when I see how some of you are suffering so much more with uncertainty and horrid SE's. But we are all in this together, no matter how well (ya right) or horrible our experiences are.
Sending hugs, love and support to all. I'm amazed at all of you with young children. My 4 kids are adults, 28, 25, 23, 20, and I remember those full and active days, looking after every one of their needs that filled my days. To those of you with little ones, you are super heroes in my book. My sincerest hope and prayer is that you all don the cape and fly through this with ease, or as much ease as possible.
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hi Annie - I asked if the dose stayed constant and the doctor said that it does. I doubt in 8 weeks I could gain or lose enough to make a difference, though I am up a whopping 11 lbs. since starting due to the steroids (I look pregnant again!). The first round, I had two syringes, the second time one, which prompted the question. She said the number of syringes and size has to do with the whether the nurses or chemist makes the batch (the nurses prefer one large one, the chemist does two which has something to do with the possible back-flow of blood during administration). But I believe she said it's 60 cc's either way. I don't know if that would change if I were heavier but I'll ask!
What's the difference between dose-dense Taxol and the standard 12 weeks? I'm wondering why I wasn't offered the dose-dense option.
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Arista - sending you big hugs and prayers today. I'm so sorry you're having to wait and praying it's something benign. The waiting is so difficult, my heart really goes out to you today.
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Arista -sending your prayers, I hope the spots are nothing!
Amy - I'm glad you're feeling better and hope you can get home today.
Hugs to everyone!!
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CarolinaAmy - Yeah for going home!
Agree with LindyC - those of you caring for children are SuperHeroes in my book.
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Loving the lavender spew bucket. Hope you were hooked up with some better anti-nausea medication.
AC #3, 2 Days after: SE #1 Nausea is definitely kept under control with 3 pills a day and a bunch of food & milk with each. Prune Juice seems to be keeping the #2 problem under control without things getting explosive. My cheeks are a little rosy, so I hope I haven't caught my son's cold. Neulasta seems to be doing its job - My nurse printed out my lab results and some of the history - I seem to be sitting at 3.5 baseline Neutrophils and 3.6+ with the shot (Normal: 1.8-7.00). Not sure what brought my platelet count back up to 193 (Base: 203, Worst: 129); they say nothing can help that. No bone pain. Yay! And I still need to post wig tryouts. They turned out quite funny - artificial wigs are kinda Meh, though.
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Cajun, my MO said that the dose dense Taxol and the 12 week Taxol were roughly equally effective. Dose dense is over more quickly, and 12 week is a bit easier to tolerate. If dose dense turns out not to be tolerable, I can just switch to the weekly regimen. She thought I'd be OK doing dose dense, and that finishing chemo a month sooner would appeal to me. That's my plan. Doing DD AC and DD Taxol means starting on September 22 and getting my last infusion December 29. Plus, DD Taxol is every other week instead of every week, which is also a big bonus. I really hope that how it works out. Talk to your MO about the dose dense route if you're at all interested. With a job and kids at home, finishing chemo a month earlier is huge for me. I want this behind me ASAP.
Amy, so glad you're doing better.
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Does anyone else have an uncontrollable appetite? So much for worrying about getting back to a healthy weight - I am like a bottomless pit!
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scotland, do you get the neulasta on the dose dense? It looks like that's pretty standard. I'll take more SE for fewer treatments if that's an option. I would so love to get this OVER.
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Cajun...I crave carbs..bread, bagels whatever. The tastebuds have deserted me and I have a horrible taste all the time so binge eating does give some relief. Ya, no weight loss here either.
And I'm on dose dense AC & Taxol. One more AC next Thursday then onwards to 4 of Taxol. Neulasta is part of my regiment too.
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hi southern! that's how my head looks too, but I shaved it, so it's halfway prickly which is super annoying.
I crave carbs all the time too though there is little that I can have. I had four salads last night, ridiculous. I'm happy to have gained the weight, but this incredible appetite is hard to handle.
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Southern, I got my period too right before my second round. Clearly, more emotional instability was needed, lol. I think it's harder to be "almost bald" than totally bald. I've reverted to wearing hats until I'm totally hairless because it looks so strange to me to have stubbly hair in patches. When I'm feeling good, I can almost forget all this crap is going on until I look in the mirror... nope, still sick.
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southern you are too funny!! All I have left are stragglers too, enough that my son wants me to wear a hat all the time in the house. It's still pixie length so when it parts in the center I look like Dagwood
Last night DH and I went to see DD's big high school choir show. There was a Beatles medley and he reached out and took my hand when they started singing When I'm 64 "When I get older losing my hair..." That was sweet! I also saw someone for the first time who doesn't know and could obviously tell something was up with my long flowing scarf instead of hair. She was polite and didn't ask but I told her and told her it's ok to tell the rest of that circle of friends. That was a big step for me.
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HI everyone.
The mouth stuff is really getting me down. I've been using the magic mouthwash and it's not clearing up.
I can't taste anything - it's depressing! And frustrating.
I keep craving foods. Then I taste them and I don't want to eat anything.
Plus my lips are numb and chapped.
I'm whining today....
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Cajun, I'm not sure about getting Neulasta on DD Taxol, but my money's on yes.
My head is always cold now, so I don't even go hatless around the house. Kids don't seem to care unless they have friends over. I've gotten phone calls saying, "X is coming over. Please put on your boob and a hat." It may be time to remind them how much I relish embarrassing my children.
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Edwsmom, i think the magic mouthwash is purely a symptom reliever. I think i get more curative help from the baking soda gargles. Have you checked in with your mo? They might have something else they can prescribe.
I'm right there with you on taste. I keep shoving food in my mouth trying to taste anything......
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I'll get on the baking soda as soon as I get home. I need to try something else. Thanks Twiggy!!
Seriously, it's so strange to eat some of your favorite things and they taste like sawdust. It just makes me not want to eat anything.
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All - The baking soda rinse / gargle has helped me a lot. (I should be more disciplined about it.)
Is anyone else a coumadin (blood thinner) patient? My anticoagulation team told me chemo would drastically affect my numbers and boy were they right. I was out-of-range high a week ago (3.5 = bleeding risk) and out-of-range low (1.4 = clotting risk) today. ACK. My anticoag nurse looked up Taxol and said there was no anticoagulation side effect. So maybe we just have to wrangle this AC side effect for the next four weeks. : /
My buzzcut hair had been leaving slowly - until this morning! It came out by the hands-full in the shower. I suddenly look very much like SouthernCharm. (Love the pic.)
LindyC - Knowing someone at the same stage getting very similar treatment is comforting. I've got two more biweekly AC rounds over the next four weeks. Then 12 weeks of Taxol.
Stay strong every one of ya xoxo
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I have had no loss of taste on the AC. I wonder if that's a TC side effect? Everything looks good to me. I could eat myself into a coma.
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does anyone else feel like they have had menthol poured in their scalp? Scotland, you said cold... Mine is always tingly.
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I've had metal mouth with both treatments. the first time I also had mouth sores. I'm on day on day 9 and I'm just getting my taste back. The only thing that tastes good when I'm at my worst are scrambled eggs, orgain drinks and peanut butter. I'm surprised I haven't lost more weight.
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The epic simultaneous cough/vomit/pee/fart. If I had crapped myself too I would have called the world record people!
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I feel the cold tingly more around my brain. A little bit of cold in my scalp. I figured it was the lack of hair - keeping a hat or bandana on it alleviates the latter problem. Taking a 10-20 minute walk helps ease the chemobrain fog.
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