Starting Chemo July 2019
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thanks 2019whatayear and Flnana2... Forgot to mention as well, hydrate, hydrate, hydrate before during and after infusion. I do think it really helps. I forced myself to drink a lot after last treatment and think it did help.
Flnana2-good luck with the wig shopping. Have a nice visit with the new grandson. How exciting. Best wishes for an easy infusion with minimal se's. I will think of you on the 24th.
I live in Rochester, NY, but probably will be moving South at some point in near future. Hubby has to retire first
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Well made it through the first one!! My apt was at
11:15 and didn’t leave until 5:10 😳😳😳 I was about to have a heart attack. So far all went well. Using the port was not bad at all. They had numbing spray too. They started with fluids first, then prevention meds, then the 2 chemos, and ended with fluids. I feel a lil light headed and I’m hoping and praying no headaches. My head feels a lil weird. I suffer from migraines so I am so worried about that. But I’m alive and survived.
Good luck tomorrow ladies 💕💕
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Best of luck to all, Sisters!
I bought many hats/caps on Amazon. I’m not sure about getting a wig. I live in Florida and it may be too hot. I plan to get a haircut next week and will probably just let my hair fall off naturally. I just can’t stomach shaving it off.
I figured the dates and when I am done with my treatments - chemo and radiation - it will be mid-December! Oy!
I plan to bring my IPad to chemo and will be watching YouTube videos, reading Facebook and also playing Words With Friends...it’s what I do anyway. I have many Bluetooth headphones, AirPods and Powerbeats Pro. I will certainly keep myself busy.
Love to all!
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Jjpope, congratulations on making it through your first chemo! Will be praying you don’t get a headac
kjchico, I plan on bringing the same stuff to chemo to keep me busy.
I am in Florida also but will be getting a wig. Our daughter is getting married in September and she would appreciate it for the pictures. I have a friend who permanently lost her hair to chemo 17 years ago and wears a wig every day in Florida . She swears it isn’t hot. She said definitely get synthetic as it’s much easier to handle. Headcovers.com has some cute hats, ball caps, wigs, scarves, etc at pretty good prices.
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Thank you for everyone’s well wishes!
Like jjpope1, I didn’t start the chemo until ~11:00 am and didn’t get done until about 5:00 pm. Everything actually went fine, both my husband and I were nervous wrecks by the time they started the infusion. I had all my pre-meds orally and they started with the Perjeta, then Herceptin and ended with the Taxol. I used the cooling slippers and stuck my hands in an ice bath for the Taxol. Unfortunately, the mitts I ordered only come as one mitt and I didn’t notice that when I ordered.
Finana2 - I got slippers and mitt from Amazon. The slippers are NaturaCare and the mitt from ChillPain. I’m kind of thinking about just using the extra ice packs I bought on my hands. It’s really hard to read a Kindle with your hands in an ice bath 😉 (I’m in Chicago, too)
I’m a little shaky/jittery tonight, but feel okay. I also have migraines and am a little worried about how the chemo meds might effect me. Trying to get as much fluids in as possible!
Cheers everybody
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Good luck with your treatments ladies of July! Here's wishing you minimal SE
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Back quickly to the topic of migraines and chemo drugs...
Has anyone been started on one of the new (like brand new!) CGRP (calcitonin gene-related peptide) drugs like Ajovy, Aimovig or Emgality as a migraine preventative and is now receiving Perjeta or Taxol? I'm currently taking Ajovy, and was wondering how if at all it might interact with our drugs, particularly with regard to neuropathy. So anyway, I'm asking for anyone else's experiences.
Thanks!
Moderators, if this would be more appropriately posted elsewhere, please let me know
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Got a lot of sleep last, was very surprised. Got up one time and was soaking wet, sweat rolling down my arms and back. So had to get up and take another shower and changed. Not sure what hot flashes are because Ive never had them. My thinking I would feel it coming on 🤷🏼♀️🤷🏼♀️ But didn’t have any other problems like that after I got cleaned up. Not as lights headed this am but my head still feels weird. Can’t even really describe how it feels other than weird 🥴🥴 I am work, Praise the Lord!!! I normally drink 4-5 liters a water a day so I’m fighting to at least keep that up to stay hydrated.
I am so thankful that I found this site and you ladies to share my journey with. I told my husband how sad it is that they give you no info, no help, no advice, no tips/tricks nothing. Just you’re doing chemo on whatever date. I am a over thinker, OCD, and over do everything. I research and thank goodness I do. I feel better prepared and not waking into the fire without some defense. I feel sorry for me because I do worry so much but I feel even sorrier for the ones that’s don’t research, don’t know, and don’t ask.
I know this is all in His plans, His time, and His will. I have to continue to push through, trust in Him, and stay strong.
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I bought my laptop to AC infusion #1, so you are all right here with me for the play by play. Surprisingly, my nurse says today will be shorter than I thought. The Adriamycin is a 10 minute push, and the cyclophosphamide is a 30 minute long infusion. My husband is here with me for company. I bought a ridiculously heavy bag of stuff I thought I needed. Will downsize the packing next time.
0900: First they took my vitals, height, and weight. Then accessed my port (a little needle sting and immediate taste of the saline), now fluids infusing, Zofran (anti nausea) and Decadron (steroid). I plan on taking Zofran at home around the clock for the next few days. I'm avoiding nausea at all costs!
10:03 Now infusing Emend (long-acting anti-nausea med).
10:40 10 minute push of Adriamycin. Eating ice chips during it to avoid mouth sores. I went pee after and my urine had already started to turn red!!
11:01 30 minute infusion of cyclophosphamide. Just been given a bag of freebies! I'm all about the freebies! It's a bag of stuff for chemo. I'll probably just bring this bag next time. www.thechemobag.org
11:30 flushing w saline. Given instructions on Neulasta on pro (I took a Claritin then and there. The nurse said next time can even start taking it the day before. She recommended Motrin for any bone pain. I asked if I could use Aleve (naproxen) which I have at home already. I like that it's a 12 hour med. Less doses to remember.
11:53 walking out. It was three hours from walking in to walking out. I feel a little fuzzy headed and ready for a nap. Day 1 is done and they can't make me do it again!
jjpope1: You made it through Day 1! Thanks for all the info on how it went for you. Can't believe the hot flashes started so soon.
Dogmomrunner: Thanks for the good wishes! I'm curious, are you still running? I still haven't been cleared to exercise, but I've been walking and riding my bike. Hoping to be cleared to do at least yoga soon.
dvhmouse: So glad day 1 is behind you. "Done and dusted" as me mum used to say! Day 2 will be so much less stressful as you know what to expect now.
Kjchico: Yep, I'll be doing chemo through Dec and then 6 weeks of radiation after that. It's an incredibly long process, but at least we're getting going on it. It's been a drag and a half just getting to this point!
UpstateNYer: I hardly drink any water usually, but I am chugging it now and thinking of you. Thanks for the tips to ease and prevent SE.
2019Whatayear: Thanks a million for that brilliant list of podcasts. It will be a lifesaver. I've already started on Cabinet of Curiosities. Wishing you all the best with your treatment!
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One thing I did forget to add. Yes I can admit I'm a weirdo and OCD about germs and stuff as such. As I walked into the room I see all these recliners and no covers. So I had to put my blankets over the recliner so I wouldn't touch it. It's the same as I would never walk on a hospital floor. Not judging anybody at all but stuff like that freaks me out, and I know they're not wiped down after each use. So if you (probably not 😂😂) are weird about stuff like that I would suggest taking a sheet to lay over then recliner when you go.
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Jjpope1 - I know what you mean about just feeling weird! I can't exactly describe what is off, but I don't feel right. Hard to explain to others so glad to have the forum!
Dvhmouse - How has the day progressed for you? A word of caution, don't overdo the water because that can be just as bad as not enough. A girl I know started having kidney issues because of too much water. I'm sticking to the 2-3 litres a day max.
Britgirls - I'm on 7 days of Grastofil instead of Neulasta and had discomfort/pain last night (third injection) that made sleep difficult. Curious how the single injection will differ. I took Tylenol and eventually got some sleep. Hoping the rest of your day/evening proceeds relatively uneventful.
Thanks for all the podcast recommendations. I've subscribed to almost all of them.
I'm feeling okay, but off still. Turns out my Taxotere was reduced 15% from day 1 due to other health issues. I suspect this is why my side effects have been manageable and I am very grateful.
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Fairydragonfly - I've actually had a very good day, no SEs at all, except an amazing sunburn despite 100 spf sunscreen. I actually think it's from taking the dogs swimming at the lake on Sunday and is just showing up now. I was only outside for fifteen minutes today!
I've been pretty good about water intake, basically I'm used to having a dry mouth from some of my BP meds, and so whenever my mouth feels dry, I just grab some water.
jjpope1 - so sorry you're staring to feel the SEs so quickly. That just sucks!
britgirls - thanks for the play by play. Like you I overpacked for the day and could have just stuck with my Kindle and iPad! My poor husband lugged the whole kit and caboodle (including ice packs), such a sweetheart - particularly sitting on the hard side chair next to me all day.
Here's wishing good days and nights for us all.
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britgirls, thanks so much for the play by play. It has helped me imagine how my first day might be. Glad it wasn’t as long as you imagined. That chemo bag looks great!
Jjpope1, I don’t think that’s weird about the recliners. Germs are everywhere and we need to protect ourselves from them.
dvhmouse, so glad you aren’t having side effects today...I’ve never heard of such a delayed sunburn...I’m a red head so I’ve had my share of sunburns! Thanks for the info on chillers. I got hand and feet ones ordered from amazon today.
Today one of my anti-nausea meds arrived via fedex and I picked up my steroids at our local pharmacy. Sure makes this whole thing seem a lot more real. I too am thankful for this group to share with.
I hope all of you have a restful night with minimal side effects. Stay strong
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Panicking a bit here. I was told that a temperature of 38 means go to the hospital. 15 minutes ago my temperature was 37.6. Will test it again in 15 minutes but so not ready to be spending time in a hospital. I don't feel feverish. Asking for any good vibes you can spare.
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Fairydragonfly, just my 2 cents, but I would hold off on going to the ER until you truly have a temp of 38 C. And in fact, I would first call your doctors office (they should have a number for an on call doc if it’s after hours). ERs are so germy, I wouldn’t be rushing there if I were you. Sending you good vibes and love.
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Fairydragonfly - did your temp come down? Feel better
About two hours ago my faced started to turn scarlet red, a little swollen and really hot - more sunburn showing up or some kind of histamine reaction? I took some Claritin and put a cold pack on my face. Hope that will help shortly.
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dvhmouse: What is your "sunburn" like? I'm worried it's actually a hypersensitivity reaction to the chemo. First I would suggest you call your doc's office. They'll have someone on call (doc or advice nurse). Do you have a temperature? Itching rash or hives? I don't mean to be a Debbie Downer, I just worry about that sunburn showing up so late after your sun exposure and think it may be an allergic reaction. Let me know what the doc says. I'm here all night! After the steroids I don't think I'll be getting any sleep.
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It’s improving following the Claritin and ice pack. It also extends only where my shirtsleeves and hat weren’t, so I do believe it’s a sunburn. I wonder if the drugs, because they are causing your fast turn over cells to die more quickly, are just “revealing” the sunburn? I’ve got no fever, hives, itchiness. It’s just weird! I’ve had a delayed sunburn before, but you’re right, not usually three days later. Oh the joys of weird side effects. I’m one of those people, who develops the one percent reaction that no one else does. I can take more Decadron (dexamethasone) if necessary, too. Thanks for worrying about me!! I’ll be up awhile monitoring, so if it gets any worse, I’ll contact the doctor on-call
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Phew! Dvh, that sounds like a sunburn if it's on the areas where your skin was exposed and no itchy rash. Good!
I'm just getting over a horrible bout of nausea from 6-9:30 p.m. Despite drinking tons of water and taking my Zofran, I was lying in bed with waves of nausea and a bowl by my side. It's resolved for now, and I had some broth and a piece of toast. A friend had made us dinner (beef burritos), and my husband really enjoyed them. I was like "Nope, don't even talk to me about the burritos."
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I'm surprised after all the bouts of nausea folks go through that there's anything they’re willing to eat! I hope that you feel better quickly and that it's resolved for the evening so you can get some downtime, if not sleep. I'm an insomniac anyway, so the steroids really don't help that particular problem.
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New question...
I’m getting my port put in this Thursday morning (three days after starting chemo) and planning to go to work the next day. Am I being unrealistic / unreasonable?
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My temp did come down. The patient line I have is only open Monday to Friday 8-4. I was told to go to the hospital if it reaches 38 C. I won't go unless I absolutely have to, trust me. Now if only the stomach upset and aches and pains would let me sleep...
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Hi ladies! I'm a newbie here. I just got my port placement today. Will be starting 4 rounds of TC on 7/16. I've ordered my cooling cap, mitts, socks and everything else in preparation for this one heck of a treatment. Reading all of your experiences has lowered my anxieties a little bit. I look forward to following all you courageous women on this journey.
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Welcome BeastMode 19 glad you’ve joined our family!! Make sure you start the Claritin 2 days before treatment and read the must haves before. There is a wonderful check off sheet I printed off and took to Walmart and got everything. If you can’t find it let me know but it helped me out and prepared me soooo much.
Fairydragonfly I’m glad your temp has come down but your dr office should have a on call dr or something, that’s weird only office hours. I def hope you start to feel better 😢
dvhmouse I would have gone to work the same day if they would have let me! I was def not a happy camper I had to stay home and burn more sick time. The next day it was sore but def nothing I couldn’t tolerate. It has stayed sore and tight since it’s been placed. It has gotten a lil better. I will say my face got red and hot today as well. I was so scared I was starting with a fever. It got better the later the day went but I did have the same thing today.
britgirls I’m so sorry you had a rough night and hoping you are feeling better and got a good nights sleep!!
As for me and my day I stayed with my head feeling weird that didn’t stop or get any better since I got my AC treatment Monday. Still had nausea but not terrible. And the red hot face (did get better). I felt so blah all day but not to the point I thought OMG I’m gonna die. I did work and stayed till about 3 and then waived the white flag. Went home and crawled in the bed. I’ve stayed on zofran and drank 4 liters of water. I was able to eat a lil but tonight, I got a pot pie from Kentucky Fried Chicken. If you have one I would def go try it. I’m a very PICKY eater and they are sooo good too me. I was excited I could eat some. I was only able to get down 2 chicken minis that morning from chick fil a and 3 graham crackers at lunch. My meds Neulasta did go in tonight. Woke up at 3 and my chest feels tight but other than that no other pains. My head as of right now feels clearer 🙌🏼🙌🏼 and I don’t feel as green. Hoping I keep seeing improvement. I do have acupuncture apt tomorrow so I’m excited about that. After a lot of reading it came up a lot so I’m def gonna give it a try.
I hope each of you have a better day today and see some type of improvement 💕💕💕
PS this autocorrect is going to be the death of me!!! I try to catch if it adds crazy words but I’m case I don’t no I’m not on drugs and typing crazy things😂😂😂
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welcome to our group beastmose19. I wish you the best through your journey.
Fairydragonfly, I’m so glad your temperature came down..I know that must have been scary. I would ask your MO for an after hours number...I agree that ER’s are germy.
Dvhmouse, you definitely have a strange sunburn..it sounds like the chemo did make the redness more severe...interesting. Glad the ice packs and Claritin worked. Did your MO tell you about Claritin or did you pick up that tip from the forum...just curious as my DR. Hasn’t said anything about it.
Britgirls, I’m so sorry you had such a rough few hours last night. I would definitely be no burritos too in your situation..chicken broth maybe. Hopefully that will be the end of the severe nausea
Jjpope, sounds like maybe you are through the worst part of the SE for this round...I’d love to hear if you found any improvement or benefits from the acupuncture.
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Flnana2your Claritin question for Dvhmouse I found out about it through this site. But my Dr did say something about it before my treatment Monday. And I def will keep you updated about acupuncture. I’m also trying to find any agency/organization that would help cover the cost due to insurance not covering it.
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Jjpop1- I read on a treatment guide Claritin day before Neulesta, day of , and 4 days after. It can also be the generic for Claritin if that's cheaper.
Britgirls. Hope you feel better today, glad your hubs enjoyed the dinner -
Dvhmouse glad the symptoms didn't turn into something allergic!
Fairy- hope your temp stays cool today.
beastmode, welcome, you got this!
I think we have 3 women in Chicago in this group? I'm in the suburbs. I have an appt at Glida's Club tomorrow - all free services for cancer peeps and their families.
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welcome beastmode 19- you will find a lot of help and support here.
Fairydragonfly- hope the fever stays down. Hope it doesn't happen again after future visits. That had to have been so scary for you. Stay strong girl
Britgirls- glad you are staying hydrated. So sorry about the severe nausea. Definitely stick to bland foods. Zofran is supposed to be one of the better anti nausea drugs. Praying you will feel much better soon.
Dvhmouse-hope your sunburn gets better. Yes, probably chemo exacerbated it. Feel better soon.
Jjpope- hope you are feeling better too
I am getting ready to have my final T/C today. It has been a rough road, but I am getting through it. First 2 treatments were hard, third not so bad due to MO cutting chemo and getting extra iv fluids during infusion. Wish me luck.
I hope everyone has a glorious day with minimal se's. Pat 😳
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This sound weird but I'm hoping you'll understand the sentiment- Have a great last T/C treatment to day Pat! xoxo
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Good morning to all and welcome beast mode19!
Okay, jjpope ... you had to mention KFC chicken pot pie? I am craving one now. 😂 That's definitely on the menu for dinner tonight. Also, thinking about trying acupuncture. Haven't looked into it too much,but a friend has a place she recommends.
I'm doing okay 1 day post AC ... so far! Planning on taking Zofran every 6 hours today. Plus Claritin and Aleve to counter any bone pain. My Neulasta shot should go in around 2:30p.
Pat!! Wishing you all the best today! Must feel so good knowing this is the last chemo
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