Chemo starting October 2017
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Good luck today to those going in for treatment. I just go in for my blood draw to see where my numbers are at. Yesterday was not great for me, so I'll be curious to see what they are. I was very tired yesterday and nauseous. I haven't really had to take any extra nausea meds until last night. I struggled to eat and drink a bit yesterday too. I crashed early in bed. I feel ok this morning. Not great, but better than yesterday, so we will see how the day goes. My head is a little prickly/itchy, so I imagine my hair is starting to change a bit. It's sort of weird, but I'm anxious just for it to get on with the release! I hate waiting.
Sim - I was wondering the difference between the two and which to take first since I have a prescription for both and found this sheet online that explains the two pretty well I think (from a reliable source too says the librarian - lol). I would think the zofran would be better for you than the compazine, but I'm sure different people react different ways. http://tahoecancercenter.com/sites/default/files/resource-center/Management%20of%20Nausea%20and%20Vomiting.pdf
Since I live in the midwest, we have a great chain of stores called Hy-Vee. They are my absolute favorite grocery store. They've been offering both pick up and delivery for a while now. If your order is over $100, it's free. Walmart started after them and then Baker's (aka Kroger) started it too. I absolutely love it and am off to pick up groceries after dropping my son off at school. It's well worth it.
Good luck today everyone!
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Good luck with round #4 Julz!
Simbobby, I know that chemo stinks, but it's one more down the hatches for you after today! Good luck!
It was a long, bad night for me last night. I didn't get much sleep on Saturday night for some reason, and fully expected to make up for lost time last night. Well, storms came and water started leaking in our basement, and I think I got 2 hours total sleep. I was almost delirious come morning. So I actually took the day off of work and took a nap this morning, so at least I can function. I'm going for force myself to go on a walk in a bit because I need the fresh air and to get this body moving, but I can safely say that the cumulative effects are catching up with me. This week I have off and I'll need it to recuperate for #4 (and final AC) next Wednesday.
I know that this is a marathon and not a sprint, but some days I'd sure love to take a break from it all for a month or 5.
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So it’s day 12 of cycle one. No hair loss? I can’t eveb pull it out. I was going to shave it today in preparation for losing it. But now I don’t know. Maybe some of it will stick around??
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julz, simbobby.....hope infusions went OK.
I alternate anti nausea meds.
Day 2+3, start day with emend
Steroids plus Valoid with breakfast
Then 2 more Valoid during the day.
I also have zofran if I need it and can use over the counter motilium too.
My MO is big into staying ahead of the nausea! Maybe see if you can combine zofran with other meds?
I usually feel pretty good first day after chemo, but days 2,3 go downhill, day 4 generally worst. Finding it harder bounce back too.
Julz, is this your final AC?
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hi joyseeker. I started losing hair on day 15 after first AC. It came out slowly over course of a few days. Unfortunately I was stuck in Hosp with a wound infection and watching my hair literally die on my head was very hard. It was 80% gone within 5 days so I cut it right back.
If yours is hanging on I'd give it another couple of days maybe. But once the first handful comes out it might be time to cut it if you want to have control over that part of the process.I know I didn't want to lose mine the way I did, I was glad I regained control at the end at least.
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Hi, Joyseeker. My hair really started going on Day 19 after my first A/C. It's still not all gone at 30 days, but too sparse for me to go out without my head cover of choice. I kinda look like one of those Minions from Despicable Me ;-)
Speaking of head covers I just got this Velvet Wig Grip and I really recommend it. I've been using it with head scarves and it totally keep them in place. I got mine on Amazon.
Hope everyone has a good week!
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Simbobby-that is great about your tumor shrinking. Chemo killing those cancer cells! I feel like mine is shrinking too but I won't have another ultrasound until after AC#4. (I have AC#3 tomorrow). It is so hard to judge when my breasts are so lumpy anyways. During round 1 my hips hurt too. During round 2 it was the heal of one my feet and radiating up my leg. But my blood work today, my WBC were great, so neulasta is doing its job.
Met with a different oncology NP today, and we didn't really click like I do with the one I normally meet with. I got asked today if I was starving myself due to weight loss. Umm no! Just eating less and trying to eat healthier, although on the weekend with my husband home that is harder to do. Saturday lunch at a pizzeria and Sunday lunch in the car at McDonalds. Back to a salad with grilled chicken today!
My hair started falling out right after my second infusion. I would gently shampoo and only comb it out. No style, no blow drying. More and more started coming out in the comb that week and it was looking really ragged before husband buzzed my hair. Still sporting the buzzed looked. I have a few bald spots but those buzzed hairs are holding on. I find my body hair (legs/arm pits) grow really slowly now. I shave maybe once a week instead of every other day.
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@LisaRxCinci- I had to show off a newly discovered mole but my story wasn't as entertaining as yours! 15x magnification would have had me showing all the bits in a snap! I got away with a photo. ^_^ Thank you for the laugh and I'm glad your onc welcomed your concern!
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Thanks for the hair advice ladies. I went for the super short cut rather than the shave. I’m expecting it to start shedding any day now. I didn’t get a wig. I don’t know if I’m a wig gal. I just need to have hair for my son’s high school graduation in May
Felt well enough to gather ALL the horse blankets, she has a wardrobe, and take them to town to have them washed. Stopped for a tea on the way home and now I’m knitting. I really, really like the good days. I hope round two is similar to this round.
Sara
Said horse with the wardrobe.....lol
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Sara (Joyseeker) - I'm a neoadjuvant girl - a node was biopsied and found positive IDC, along with a couple of breast samples. I'm sorry if you feel alone because every time I read your postings, I feel like we're having a somewhat similar experience at the same time. However, I can certainly understand that it feels good to read experiences from others on the same treatment plan.
On that note - good news today from my MO appointment today. Besides everything look ing good for Round #2 this Thursday. And - happy to share your good news, Agatha, my MO estimates that my tumor, which he measured at 6.5-7.5cm before my first round more than two weeks ago is 4cm this week!!! He was surprised- even called my sister over to read his notes on the computer confirming his measurement from two weeks ago!
Eighthoutof8 - I was told my blood pressure spikes was "white coat syndrome". I thought that was the nurse joking with me, but my blood pressure has calmed during non-infusion appointments. A little higher today when I met with my MO. So interesting that you commented on it!
Petey, chemo brain has not been fun. I'm a pretty good driver and Saturday, I went to a meeting that isn't happening until next week, and on the ride home, looked all ways at intersections and yields but completely didn't see a car that had the right of way. Twice in 15 minutes. Scared the heck out of me. The beauty in this story is that I pulled over to cry with my head on the steering wheel because I don't recognize myself AT ALL, I don't feel like me in my brain. Freaked out that I may be a danger on the road and I can't even tell. End of story- that last car that I cut off and the driver who honked at me pulled around to check on me. He was a really nice Captain in a Fire Dept. emergency vehicle and he told me his mom just came through chemo. He totally understood how hard chemo brain is and he told me his mom is now back to her usual sharp self and I will be too and that I'm doing just fine. I so needed that compassion and reminder that there is an end to this and in the meantime, I/we just need to do the best we can but also be gentle on ourselves. (and he didn't tell me to get off the roads :-p)
Anyway, I wish I could say something to each of you who has posted updates, but I need to get back to work. I just needed to take a moment to see how you all were doing. Be well, ladies. Prayers for each and every one of you!
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I didn't realize I was so far behind on your posts! Thank you all for sharing your stories, good, bad and ugly. We can be honest here
I went through TC round 2 on Nov. 2. I started having a tapping discomfort as soon as they started the taxotere right under my sternum. It didn't really hurt, it was rhythmic and weird. They stopped the drip and gave me a drip of pepcid and Benadryl before restarting slower. I got through!
If I have one tip for anyone on this chemo it would be to make sure any reflux is being treated prior. The reflux made everything worst. Okay, I'll throw in gut regularity too. My stool softener is my second favorite pill after the omaprozale.
At the end of the cytoxan, my arm started swelling a little bit. I loosened my tape and lost my line. Chemo blood everywhere! Good times! Hey, the swelling went straight down though and I'm pretty sure if it happens again the nurses will heed my summons quickly. ^_^. They seemed to forgive me!
My fatigue hit faster and harder but I got a leg up on the digestive issues from round 1. Digestion is not perfect but it is so much easier to rest when I'm not stressing over whether I need a transfusion for a bleedy bum!
Today it was delightful to pop open the pill box and see no steroids looking back at me. I can almost feel the hot flashes, jitters, sleeplessness and craziness fading already.
I didn't take any zofran this round and I'm glad as I opted out of that constant headache. I asked for a more gentle antiemetic and they prescribed prochlorperazine. I filled it but didn't need it. I am deeply amused that they keep giving me antipsychotics under the cover of anti-nauseals. I'm really nice when I'm off the steroids, I promise! 😃
Other SE's are mouth irritations. Rinsing with salt water is helping there. I wore flat deck shoes and accidentally let my feet get cold. They both threatened to cramp on the tops but I was fortunately in a place where I could whip the shoes off and warm the feet up. Double foot cramp crisis averted. I won't be wearing those shoes for a while.
Overall, this time last round was by far my worst day, honestly probably the worst I've felt in my life. This time, not so much. I am so appreciative! I'm going to save my hair for another post. That has been a wild ride.
Gentle journeys to all of you companion travellers.
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Jennifer, good luck with #3 this week. Glad your numbers are good even though you're losing weight. I seemed to have plateaued at minus 13.5 pounds, but am hoping to make some headway after I'm off steroids in another 9 days. (Taxol doesn't get steroids, does it?)
I've been struggling with food and drink the last two days, and I've been really shaky the last two days. I'm hoping it's an SE and not a sickness. I have another week to recover, but man, it's tough to get motivated to eat right when you feel badly. I've been drinking LaCreux water these days, which is flavored carbonated water. At least I don't have to choke it down like I do regular water.
Congratulations, Voilalia on the incredible shrinking tumor. I love hearing that!
JadeShiva, I know what you mean about the pill box. Gosh, it's depressing when I see 7 pills staring at me.
My husband took a half day off work today (he was up all night with the basement leaking), and we snuggled in bed and napped together. We haven't really done that since chemo started, and we really needed it. He's my best friend and rock, but this cancer thing has put somewhat of a wedge between us, in part because he just doesn't understand what I'm going through. I try to explain it to him, but his response is often, "You're going to be fine! Quit worrying about it!" and so I feel like I can't really speak freely. It makes me appreciate this group because you guys DO understand.
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My labs look amazing my Dr was like I can't believe u look so good, that's great/impressive! I'm happy besides I gained 10lbs so I asked what he thought about lowering my steroids he said that sounded like a good idea! So steroids going down from 10mg to #4 today! I think I'm letting Zach buzz head tonight
Everyone is different but my Dr has me take compazine every 6hours starting after treatment so Mondays around 3pm & 9pm then Tues 4am, 10am,4pm 10pm that's all.... Next morning I take zofran starting wed 5am then take every 8 hours for 3 days the no more of those meds.
I lost a lot of hair yesterday so my man will be buzzing tonight. Going to work tomorrow ( only 2nd week on job.) I hate attention
so wish me luck! My phone's about to die so I'll talk to y'all in a couple days!God bless ++++++ attitude is what it's about! Learn & live/live & learn!
Mmmmmwahhhh
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Slept from 7:30pm to 5:30am. I'm so happy I could cry.
Hope you all have a fantastic Tuesday!
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Jennifer522 - Good Luck with AC#3! Welcome to the buzz cut club. I'm glad to hear your tumor is responding, too. It's a great feeling.
Joyseeker - your horse is beautiful! I'm glad you got out and had a good day. Is that your daughter jumping?
Violalia - WOW! that's such great news about your tumor :-) It really went down so quickly. Isn't it good feeling to know the chemo is working? Be careful driving out there.
JadeShiva - that's a little scary about your arm swelling with the Cytoxan infusion. I'm glad you took matters into your own hands! The only thing I've had with Cytoxan so far is a tickly/burning feeling in my sinuses, like I've sniffed pepper. Does anyone else feel that?
LisaRx - I loved that you had the chance to have a nice cuddly nap with your husband. And CONGRATS on finally getting a good night's sleep!! Maybe the two are related?
Julz - Congrats on the good labs! It's great to hear that your doctor is listening to you and adjusting meds. Does it help to feel like you are active player is slaying this cancer beast?
Have a good Tuesday, everyone!
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Hi Everyone- hope everyone has a great day today! The one thing I realized after my second round of AC is once I start coming off the steroids, ant-nausea meds, and Ativan (as needed) my off week I'm an emotional wreck. It takes a good three days to feel myself again. Only to start over next Monday. 😑 Is anyone else on a two week AC cycle and find this happening?
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Tri Lady. Yes. I asked my MO to wean me off rather than cut me off steroids. Hopefully that helps this time. Day 4,5 for me were awful and took me a few days to right myself as well. Maybe your MO would be open to this approach?
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Tri lady, yes, Im on steroids for 2 data after chemo. 3rd and 4th days hit like a ton of bricks and I'm a wreck emotionally for another 4/5 days. Starting dd taxol tomorrow and so many more steroids involved. I'm dreading the effects of them but needs must:)
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Tri lady when I on AC I have several down days, Day 4to 7, it hit you harder each time. All I can say is enjoy the good days, and rest on the bad days.
Stage - good luck to your taxol.
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thanks
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so strange SE? My head is hot.. Feet and hands cold and my body temp is normal. But my poor bald head is a furnace.. And sometimes a patchy furnace... Anyone else?
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It's interesting how we all respond differently. My MO explained that right after my first chemo treatment, I would have little SEs because of the steroids and nausea meds -- Zofran and Compazine. She said the hard part would be day 7 with fatigue. The opposite was true for me. I was in bed for four days right after my first treatment because of nausea and vomiting, and I never missed a nausea med dose. I called for different meds and was given Ativan, which I think just made me go to sleep and not care. What do you guys take for nausea?
I also ended up with thrush and mouth sores, which was no fun. Between the nausea and mouth sores, I'm down 12 pounds. My appetite has returned, though, and I feel pretty good now. My second treatment is Friday, and I'm still holding onto my hair, for now. I picked up two wigs this week.
It might be my imagination, but I swear my tumor feels different. I won't say it's smaller, but the firmness has definitely changed. I hope that's a good sign!
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I had my AC#3 this morning. The steroids and anti nausea meds they had to push instead of drip from iv bag. Apparently the bags are made in Puerto Rico, so there is a shortage now of them.
There was another lady and her husband there for her first chemo treatment. She just got her port in yesterday. I felt for her. I remember the nervousness and overwhelming feeling. She even had not had chemo training yet, they did it right there at the chair. It's irronic how I am starting to feel like a pro.
My husband and I stop and have lunch out after chemo. A day date we call it. Being a parent of a small child, alone time is not something we get much of. I pretty much wear my beenies out and if people stare then they do. I did grab a light coat to cover the nuelasta on my arm. It's rainy but still 70 degrees near me.
Ativan has worked the best for me. But I can tell it changes my personality. I think I scared my mom sitting in the passenger seat because I drive more aggressive on it. I only take 1/2 of pill.
My SE has been constipation and now hemmoriods (maybe a anal fissure). It's getting better with preparation h and miralax. But felt like I was pooping rocks for the last week.
Stage2ire- how often are you getting the DD taxol. My understanding is I will get every 3 weeks.
Agatha- that sinus feeling is common on cytoxan. I have them drip it for 40 minutes instead of 30, to prevent that. The nurse suggested it with the first one and I keep asking each infusion to do the same.
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mrswinnie...I get a very red, warm face and head sometimes first couple of days after chemo. Think its the steroids, or the chemo, not sure but I do get it.
Jamorcar.....I get thrush every dose. I start mycostatin day of chemo but still always get some thrush. The saline solution makes me gag but my MO prescribed something called BMX. Not sure if its available in US or called something else, but its basically a mixture of different drugs including lidocaine. I get terrible mouth sore around my period so he told me start the bmx the minute my mouth feels sore. Its worked so far, no major ulcers. Might be worth asking about it.I think its also known as magic mouthwash.
Jennifer, DD taxol will be every 2 weeks. I have 2 young kids, 4.5 and 22 months. Myself and my husband have made date days out of some of my earlier appointments. I usually go in for chemo myself but he's coming for my last treatment. If all goes to plan its Dec 20th, our wedding anniversary. Its hard finding time together so trying to squeeze in what we can.
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thank you all for your responses. I'm glad it is not just me but the dreaded drugs we have to take that make us an emotional wreck.
Jamorcar- I agree everyone is different in how they respond. I am also very tired the first couple of days then get only a slight energy boost on day 4/5 then back to being tired.
Jennifer 522- unfortunately I get constipation while on the meds as well. Nurses told me to take Colace and Senokot twice a day. Works well but sometimes go a little to often. Probably better that way!
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what I learned yesterday.
Went in for my third AC yesterday - only one more to go then Taxol.
So, during my infusion, someone rang a tinkly bell and all the chemo nurses stopped what they were doing and were on high alert. Turns out that when you go on Taxol you are given a bell to ring if you're feeling any kind of a reaction coming on and will immediately be made top priority by the entire chemo staff.
That gave some peace of mind. End of story
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Was all set to go to work this morning, but I decided not to because I was still feeling very shaky. Got on the scale, and I'm now down 17 pounds since DX. 2 days ago I was down 13.5 pounds. I guess that explains why I'm so shaky. Had a long talk with my husband and he thinks that I'm actually harming myself, both mentally and physically, by so severely restricting what I eat. He thinks that part of the reason I'm not getting enough sleep is that I'm so hungry and strung out. He may be right. So, this afternoon I went and got a Wendy's cheeseburger, which I've been craving for weeks. And I enjoyed the hell out of it. And, what do you know, the shakiness is gone? So here's to red meat!
Stage, I was hoping that I wouldn't get steroids with Taxol. Maybe it's cause yours are DD? I can't imagine getting steroids and then only getting 3 days to recover before the next (weekly) one. I'm sure you'll let us know how it goes. I'm scheduled for 12 weekly Taxol treatments beginning Nov 29th, so I won't be done til February 14th. I guess you're only doing 4 DD rounds if you'll be done by December 20th?
Read (well, skimmed) Joan Lunden's book this past weekend. She's a TN girl like myself, and we have very similar personalities in how we are dealing with the whole BC thing. Her MO had her do Taxol w/ Carboplatin first and then a lumpectomy with radiation, and then AC. So a bit different than my treatment. I don't know why I'm not doing carboplatin. I wonder if they realized it wasn't effective on my type of tumor. I'll have to ask my MO. I like how she's proactive with her treatment and stuff, but she's also very opinionated on things (like the diet) that I'm still not sure is good science or just an interesting theory. Still, she's a survivor, so go girl!
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lisarx, yes, 4 doses dd of Taxol. I have to take 20mgs of dexa at midnight and another 20mgs at 6am. I'm assuming I'll get more at the Hosp. Not sure if its a higher dose but longer recovery when given dd. I might ask tomorrow.
I feel really I'll, tired, shaky etc the days I don't manage to get enough food in. I find the days I eat red meat I feel better.....and I don't even like redmeat much! Guess sometimes our bodies just want protein, iron etc
Lemon juice in warm water can help with constipation too:)
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hi everyone! I haven't caught up on all the activity since I last posted so hope everyone is doing Ok!
I just had to share these pics so that everyone can see that there IS humor with chemo. These both arrived today...
This first one... oh Lord where do I start. I think i now know what a sheepdog feels like. I could not see a thing. There's supposed to be a part in there somewhere lol but i coukd not make it work to save my life! The color was nice and the hair felt ok but this absolutely was enormous on my head. Apparently I am not an "average" after all.
This second one, OMG I could not stop laughing. Not only did it, according to my 12 y.o. daughter, make me look like a Hillary Clinton wannabe, but it was so stiff it felt like brillo pads on my head. The color was truly awful on me too. Definitely nothing like the picture on tlc.
Both went back in the mail today. They didn't even last an hour in the house. I am still laughing every time I look at the pics though. Not to be discouraged though, i am going to a couple of LOCAL wig places tomorrow and Thursday to see if professionals can't help me find something that works for my head.
Never give up, even on wigs!! LoL
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I returned everything I bought from the tlc catalog. I was given some beenies from headcovers unlimited and I like them. Soft and good quality.
This is my wig. It's a blend of syntheticand real hair. Still feels weird and only wearing it for special occasions and full days out and about. I am not use to the in the face hair but that covers the wig lining.
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