Starting chemo April 2019
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My day 2 has been good. Maybe a little more tired than usually but I did get out and walk about 3 miles. I may have to double down on my constipation meds as nothing happened in that department but felt like it could. My nulasta patch thing just went off. Hope this does not bring aches and pains but I have my Claritin. I went to Old Navy and came out with this sweat shirt. I think I'll wear it to my next chemo. Hope everyone's day was good today.
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Love reading everyone's posts and experiences! Everyone is doing so well. I had my first AC today. I was terrified of them accessing my tender port, but the nurses were awesome. They had a cold spray that really helped. The actual infusion of red devil, I ate sonic ice during. Hope it worked. The cytoxan gave me a headache, that I still have. No nausea so far. My mouth has a weird taste in it all the time, but food still tastes good. I think it would be easy to eat too much as that makes my mouth taste better. Im already 15lbs overweight, so I don't need to gain weight so I need to be careful and train myself to healthy snacks. Im planning on work early in the morning, so hoping I will feel ok.
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Good to hear everyone has had minimal SEs so far, hope it stays that way!
Couldn’t sleep very well last night so took a long nap in the afternoon and felt so much better. My neulasta shot just went off, took my Claritin and hoping for the best
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Bam320, love the shirt! May have to go over and get me one too! Been writing on my calendar good day or bad day, put the shirt would be great to wear on a good day
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Marylinn222--Make sure you get a prescription from your Oncologist. Many insurances pay a percentage of the cost.
I'm glad your wig looks good on your.
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Good to hear that day two is good. and I love your sweatshirt.
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Totally hungry too! Yup chicken soup and crackers. But wanted more! If you had steroids, maybe that's what makes us hungry?
Dorene
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My first TC is in the books! The nurses were great and like others have said, it went by quickly. The benedryl push made me a little woozy and I did get that headache. Went home and napped for an hour that felt like a day- I literally thought it was the next day when I woke up LOL! I was starving so had some popcorn and chicken soup for dinner and then took my dog for a walk. Other than the headache, I felt pretty normal. The nurses told me I might be up all night from the steroids but I had no problem sleeping (took a Benedryl to help). Been pushing water and rinsing my mouth with salt water religiously. So afraid of getting the dreaded mouth sores-I even rinsed in the middle of the night!
I need to get that sweatshirt - So far so good!
Planning on going into the office today and have an acupuncture appt later.
Hugs to all starting this week/month!
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Oh, wow. When I got home from infusion yesterday, I was feeling pretty good...good enough to watch TV and want more food.
Then, bam, right at the 6-hour mark after the steroids and anti-nausea IV meds were given, I hit the wall really hard. Last night was the worst night I’ve ever had in my life. The nausea was unbearable. I almost had my husband take me to the ER. I even took a break-through anti-nausea med, and it didn’t do anything. Finally at 11, I was able to take my main med. By 1:00 this morning, I was finally getting some relief. And I feel much better this morning.
I will be calling my doc to discuss med options. The thought of doing that 3 more times is extremely distressing! I’m a really positive person, and will do whatever I need to do here, but man that was rough! Just wasn’t something I was expecting. So, I wanted to share with others, in the event you have a really rough first night, it will get better!
Hoping today keeps like this morning!
Hoping you all have a better day than I did last night.
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My Favorite,
I hope so too! I'm glad you going to call them . Maybe there more prep you can do.
I'm so glad you feel better and are positive!
Keep on trucking!
Dorene
Oncotype 31
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MyFavorite I'm so sorry to hear of the nausea on night of day one . I wonder if they gave the antinausea med (IV med same family as Zophran) during your infusion? It's supposed to last for a day or 2 after infusion.
I have read and been told to take the oral Zophran before nausea starts (can start on day 3 for me). I'm feeling ok right now (still taking steroid and Zyprexa at night until after tomorrow). Today is day 3 and my GI symptoms are minimal thus far.
MsMarie and Farfella6 - you have already stopped your steroids and Zyprexa, right? I know that you mentioned the sleeping challenge after stopping the Zyprexa (I'm not looking forward to that). Any nausea/vomiting? Did you automatically start the Zophran at the first opportunity post chemo infusion?
Yesterday (day 2) no nausea and my heartburn was gone, but I became exhausted in the afternoon during work. Had to take a nap, which helped a lot. Able to take a walk and fix dinner in the evening.
Ordered my wig on line yesterday (had previously shopped, tried on, and picked one out in a wig shop).
Glad everyone had uneventful chemo infusions this week.
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MyFavorite so sorry about your rough night. That sounds so awful. I was given IV anti-nausea meds and I think they really helped. I can feel nausea "underneath" if that makes sense, but haven't felt sick yet. I am going to start my Zofran tomorrow as they said IV meds will last 2-3 days. I didn't receive any steroids other than what they gave me by IV, so not sure why others are getting those at home too? I feel a little weak and "off" but I am at work and functioning. I get my Neulasta shot today at 3pm. Took Claritin yesterday and this morning, and will continue for 4-5 days after to hopefully avoid any major pain. The worst so far is the bad taste in my mouth. It's UGH. I am chewing sugar free gum and that helps, but it makes me queasy after awhile. Any other suggestions that aren't full of sugar and bad for my weight/teeth?
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MyFavorite- I had a similar experience the first night of the infusion. It was just awful, I couldn’t even drink more than a sip of water. In my case, the steroids they gave me really triggered my acid reflux, which is usually well managed by OTC antacids. Luckily lots of Tums and Zantac helped calm my stomach and haven’t had reflux issues after that. Oncologist put me on Nexium.
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Kimg - the underneath nausea is a great way to explain it. I feel that way too. I totally forgot that the anti nausea meds at the time of infusion wear off in a few days. I will be keeping my Compazine close by in case anything gets worse. I have picked out my wig and have an appointment today to get it and that might increase my nausea!!
Myfavorite - Hope you have a better day today!
Mathcampnerd - Good luck to you for tomorrow!
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I have two wigs I ordered online by Jon Renau. They are pretty decent. I also got some halos to go under hats. I got a variety of hats also. I started ordering as soon as I knew chemo was coming. I am one that likes to be prepared, lol! I haven't actually walked in a wig store yet. I figured if wigs end up being my "thing" I can always go through my insurance to get a nice one. I have a feeling with most of my hair loss being the worst over summer, I won't feel like wearing them that much. I figured just at work or out on date nights maybe. I work as a high school counselor, so not sure what is going to work well here. I haven't kept it a secret or anything, I would rather people know why I am wearing a wig, if that makes sense.
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I too had the bad nausea the night of the first infusion, maybe 2am, and needed zofran. I have only used that one, because as long as I took it every 8 hours (days 1-4) then every 12 hours (day5) then once a day (day 6) I was fine. Yesterday (day 7) was the first day I didn't need it and took no Zoran at all.I
As for sleep, I was so prepared for bad sleep on the steroids, but the olanzapine knocked me out, in a good way. But after those 4 nights, I went back to what I usually take for sleep--Trazodone 25 mg--and it did not work well the first two nights, because its clearly less strong than Olanzapine, but it did work well last night. I am someone with a history of depression, managed very well on low dose Zoloft and Trazodone, so I went back to the Trazodone (the zoloft I am taking throughout)
Robinredbreast-the steroids were only for 2 days after the chemo, the Olanzapine for first 4 nights. so those are stopped. and as above, I would have taken the Zofran earlier. BTW, even with queasiness at its worst, I never felt close to vomiting. But I did feel like I need to lie down.
Ms. Marie; I too have been doing modified fasting and I think it did help; I did it partly because the steroids affect my blood sugar so dramatically I have to eat v lightly and NO carb, but I think it helped with side effects. By day 4 (with steroids out of system) I had a great appetite and able to really enjoy my food.
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kimg - did you try the baking soda/salt gargles? I have been doing the gargles every 2 hours and my taste buds haven't changed (yet). I have noticed however that my mouth feels more tender when brushing after eating (not bleeding or anything), just more sensitive.
Thanks for the info farfalla6!
Wig just arrived, only ordered it yesterday afternoon.. fast delivery!
So far today, energy good (but not great).
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Does anyone feel they have an olanzapine hangover the next day? I take 10mg at night through day four. Today I did not feel clear headed until two today. My nurse had said that it could make you feel out of it and that I could try to take less if that was the case but just not the night infusion. If I had to work today, I would have pretty ineffective! Thankful that I won't be cleared from my surgery to go back to work for a couple weeks and I can hopefully sort these side effects out.
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HI bam320 - yes, after I took the olanzapine (Zyprexa) on the night of day 1 I was very dizzy (getting up to go to the bathroom during the night). Also felt 'hung over" the next day, yesterday (like sometimes happens the next morning when taking benedryl).
Anyway, I took it last night (day 2), dizziness not as bad, sluggishness not as bad, but still feel like my limbs are heavy. Mentally more alert than yesterday. I have been instructed to take through day 4 also but my tabs are 5 mg.
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Thanks Robinredbreast. Think I will try less tonight. It took me a minute to find my car in the parking lot twice this morning when I was out. Couldn't remember where I parked. Not good!😵
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The first time I had chemo in 2015, I threw up 2 days after my first treatment because of terrible heartburn due to sores lining my esophagus. Onco told me to double up my (prescription strength) prilosec and I never had a problem after that. Was definitely memorable, though. To say the least.
ETA: Y'all need notebooks to carry around. You're going to forget things. A lot. I still carry notebooks (lingering chemobrain is not my friend) and write everything down, else I'd be lost. Literally. The alarm on my key fob needs a new battery, LOL. Last time, I used kitchen timers to remind me when I was supposed to do stuff, but this time, I'll try setting reminders on my Echo, see how that goes. Notebooks and kitchen timers got me through last time, for real.
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robinred. I have had NO trouble at all sleeping. I do take 9 mg of melatonin about one hr before bedtime. My MO encourages it.
So sorry for the ladies who are having nausea. I do not know for sure why I had basically no SEs, but again, I drank a lot of alkaline water the day before, day of chemo and day after chemo. If you can't deal w water taste, I recommend Flow alkaline water, can buy on Amazon, I get mine at Whole Foods. You can certainly flavor own water. Most grocery stores sell bigger bottles of alkaline water. I have no clue if it helped or not, but I will keep doing what I did the first time. Also no constipation. I did take too much anticipatory laxative and went the other way for one day, lol.
I also did the fast mimicking. I don't rec doing that without talking to MO, mine was not really on board, but wait till I tell him I sailed through first treatment. Yes I will gloat a little too haha.
I read somewhere on here that we aren't supposed to be eating fruit? Idk what that is about, but I eat cutie mandarins, bananas, strawberries, blueberries, applesauce/pear sauce. I read the canned peaches is a thing but haven't tried.
Last tip was that I kept ginger ale with me, 12 Oz bottle. Finished off big swigs of water with a large sip of ginger ale. I don't want to drink too much sugar, it's really just a chaser to the water to clear out any aftertaste.
Hope this helps some of you. Hang in there! MM
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If my onco can hurry up the surgeon putting my port in, she wants me to start Wednesday.
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So, I'm day 9 now, having my next AC next Thursday. Overall I've been pleasantly surprised by how functional i've been, but I realize I definitely don't feel entirely normal either. Was thinking of going t the gym yesterday afternoon but instead took an hour nap, my mouth feels odd (no sores per se, but gunky) and general fatigue/upset in a vague way stomach. I think I am coming down from my relief that it wasn't awful to my realization that its going to be tiring and I'm not going to feel 100% either. Do some of you feel 100% since your treatment? I'm also losing some weight, and was thin to begin with.
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Princessofmeh - Hope you are able to get your port in. Sounds like you are ready to get it going. Thanks for your insight on side effects too!
Farfalla6 - Glad you are still doing well. I haven't weighed myself this week so don't know if I am gaining or losing. The nurse at my infusion said that 20lb weight gain is fairly normal. Hope that is not me as that is a significant amount of weight!
I am now on day four. Feel okay today. Still a little foggy but not nearly as bad as yesterday. I only took 5mg olanzapine last night which may have helped and may take 2.5 tonight since I am not nauseous. Took my last steroid dose today. I went and got my wig yesterday. My breast care center has a salon in it and they were great but I am still dreading the wig and loosing hair. I may have been imagining it but this morning when I was brushing my hair I swear my scalp was more sensitive. Anyone else noticing anything in the hair department?
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I am getting a buzz cut tomorrow, have my wig already so will start wearing it. And my hair is def thinning already and my scalp really hurts when I brush my hair.
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Yesterday kept going okay...worked, went to get afternoon Neulasta shot, back home to get daughter for dance class. Hubby and I went together and sat and watched through class. Back home ate beef stew and I PASSED out on couch. Could NOT stay awake. I slept until 6am this morning, when up for work. When I got up, I felt weird....chest heavy, heart fast (not really but felt like it, my pulse was normal). Had neck cramps, but Ibuprofin took care of those. I feel fuzzy headed for sure, but otherwise just TIRED. I'm at work, but not terribly functional. Of course, my appetite is FINE, so I am about to eat lunch and see how I feel. I called about my heart racing feeling, and doctor wasn't concerned since the actual rate was normal. I think I probably have some low blood pressure and it's just making me feel tired. It's so hard to know when to worry about a side effect, or when to just know they will pass.
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Definitely not 100% farfalla6. Like you, I have the general sorta upset stomach, no nausea per se (intermittent heartburn, then stomach cramping). Are you taking Zofran?
My mouth feels the same as yours, no sores, but 'gunky'. Also, when drinking water my teeth feel sensitive to the water temperature. I took a nap on day 2, plenty of energy on day 3, but now, back to tired today (day 4).
Bam320, glad your less foggy today. Today is my last day of the steroid and olanzapine too. I'm a bit nervous of having extreme fatigue once the steroids are out of my system. Glad tomorrow is a Saturday. My scalp is more sensitive when brushing hair, but haven't noticed any additional shedding (yet).
Princessofmeh - sorry you're back for more chemo, but glad you're here. Thanks for your feedback.
Kimg - I understand about wanting to know if something will just pass. I think your MO would want to know about any SE's you are concerned about. Glad you checked in with them.
MsMarie - glad you're doing so well. You go girl!
Have a great weekend everyone!
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Bam - A couple of days after my first AC treatment my head started feeling tingly. No pain but like I could feel hair growing or getting ready to fall out
By day 10 I could definitely tell I was losing more but not bad. Day 11 I was brushing out a ton of hair. We shaved it on day 12 and I am now wearing my wig. I received a lot of compliments on how good my hair looks from people who do not know it is a wig! And I have to admit is was very convenient this morning getting ready for work!I have my second AC yesterday and am at work today and feel pretty good. Just a little brain fog. After the 1st treatment SEs hit me at day 3-5. But I am drinking a lot more water this time and have all kinds of food at home to try to force myself to eat when I don't feel like. That was part of my problem last time I think, Not eating or drinking enough. Last time by day 9 I was feeling good. Almost normal. Just get tired a little more easily.
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Sparklegirl - glad things are well. Now you are 1/4 way through all of your chemo..if you are doing 4 taxol. Can you tell I put everything in terms of when this will be over!? Ha!
Robinredbreast - I am a little worried about how I will feel off the steroids too. I hate taking medication so I will be glad not to be taking them but don't want to be exhausted all weekend. We shall see what comes next!
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