STARTING CHEMO SEPTEMBER 2020
Comments
-
- So, I received Dx. August 21,2020. Started 1St Chemo,Taxol On 9/10/2020
0 -
Will be starting Chemo on Sep 29th. Doing 6 rounds total, once every three weeks. I am really nervous so hopefully we all can help each other through this journey.
0 -
Good luck to all of you who just started chemo or are about to start soon, with a special shoutout to this group's founder, pabl48, who had her first session last Friday! I hope it went well and your side effects are minimal.
I am from the April group, and I've just finished 16 sessions of AC-T (Taxol) chemo about three weeks ago. Before I started, I felt totally overwhelmed about how to prepare. I was trying to research everything on the internet, but there was just too much out there to digest! Like to ice/cold-cap or not; should I start fasting or switch to a high-protein diet; do I need to stock up on lotions, nail treatments, wipes, etc. In the end, I realized that I could prepare my bag with the usual stuff for a long plane trip, trust the nurses/staff at the treatment center to take care of me, and just bravely walk in there on the first day and see what it's all about. I could always make adjustments for the next session and learn as I go. In other words, nothing had to be actually decided *before* my first chemo appointment. Once I cut myself some slack, it helped to ease my anxiety.
Here are my tips for starting chemo, in case they're helpful for anyone:
* Push fluids throughout chemo, but definitely focus on the day before, the day of, and the day after. You'll feel so much better if your body is well-hydrated and you can push out the meds as quickly as possible. Also, you may be able to ask your nurse to let you finish the whole bag of saline for added hydration.
* The first chemo appointment ended up taking ALL DAY for most of us, even though the actual infusion time is only a couple hours or so. You might have to do blood draw first and wait for lab results, then there's all sorts of set up, and waiting for your meds to be released, and extra time for your nurses to explain things, and also the infusions are usually run extra slowly at first to gauge your reaction to each new drug (including pre-meds). So bring snacks, layers, blanket, ipad, knitting, crosswords... anything to keep you comfortable and your mind occupied. And have your headphones ready and your favorite person(s) available for you to call or text at any time throughout the day.
* Bring a charger with a long cord (or two) for your devices, but also an external battery just in case you aren't near an open outlet. I also bought a cheap holder/stand from Amazon because I got tired of holding my phone during chemo.
* Don't worry about looking silly, overprepared, underprepared, whatever. No one cares. And if anyone seems to care and gives you judgey eyes, then just remember YOU don't care! Your main job is to take care of yourself and only YOU know how to do that best. So if you want to do the icing your hands and feet thing even though no one else at your center does it, go ahead! Go ahead and bring two large bags of stuff because you don't know what you need- who cares? You could also bring nothing and probably be ok since most centers have drinks, snacks and blankets for you. Dress however you want to! No rules! (Except for access to your forearms or port area, of course.) You just wanna be comfy and you're gonna throw it in the wash when you get home anyway. Walk in there high as F on marijuana? Sure, go ahead! My nurses say they definitely have some patients who are high on any number of things (anxiety meds, whatevs), and they are happy to take care of you no matter what. You be you!
* Don't be afraid to ask questions. It's ok to admit you don't understand something or forgot something. (I totally forgot everything, lol-- my brain was like on overload!) You are your own best advocate, and since most hospitals/treatment centers aren't allowing visitors right now, you might be the only one there to speak up for yourself. Make them repeat stuff, ask for printout or copies, write it down if you have to. No need to worry about annoying them with all your questions—they are used to it and I promise they'll still like you!
GOOD LUCK! We're all thinking of you, cheering for you, commiserating with you, and sharing the same fears, hopes, confusion and laughs. You can do it! love, jess
0 -
Hello all!
Day number 2 after first chemo for mom and she said she feels fine. Did not lose appetite, no nothing yet.
Her doctor warned her she might feel bad on day 3. Fingers crossed she still feels fine day 3.
Hoping all of you ladies and men go trough this smoothly and with the least side effects possible.
Hugs to all,Kate
0 -
Thank you for a detailed post, Jelloelloello
0 -
Hi Katiha:
Here's my experience when on weekly doses of Taxol: Counting chemo day as Day 1, I felt pretty great on Days 1-2 because the steroids that they gave me during chemo gave me energy and the other pre-meds blocked many of the side effects.However, it was also very hard to sleep- usually only 2-3 hours a night! A few times, I started to feel the fatigue from coming down off steroids on Day 2, but usually not. Usually, Day 3 was when the soreness and fatigue started to hit me, but my "bad day" was Day 4 for sure. On Day 5, I still felt low-energy and kinda sore for about half of my sessions, but the other half were ok on Day 5. I called Days 6-7 my "good days."
Most of us said the same thing about Days 3-5 being the hardest. With the exception of chemo day if you have any bad reactions, or another exception is if you have diarrhea (which can be any day, just depending on your body) and then any diarrhea day is a bad day, haha (but not really haha)
0 -
Thanks, jelloelloello!
Mom is on Taxol +Carboplatin every 3 weeks.She said she feels sleepy so far and that’s about it. She fell asleep during infusion instantly.0 -
jelloelloello, thank you! I love your post. SO helpful. I appreciate you taking the time to write all of that.
0 -
Starting to feel better, just bone pain. Will join back in soon, need a few days Recuperating.
0 -
Thank you everyone from other month clubs for all of your tips and encouragement! It's super helpful! SZmom - I am about to begin chemo for the long haul too. 4 A/C, 12 Taxol, surgery, then more chemo. Let's hope the cancer responds!
So HATS ladies...I'm trying to prepare for my hair loss. I am really way too lazy to cold cap it. My hair is already thin, so I know I'll just end up with bald spots anyways. Where did everyone buy their hats? Amazon? Headcovers.com? TLCDirect? I went on ETSY to look, but I was aggravated that they had women with full heads of hair modeling their chemo caps. I know there's a post in this board with a bunch of links, but a lot of them are outdated.
0 -
Hi Kelly!
I just bought few caps for my mom on Amazon. The models did not have hair, that’s really not good advertisement on Etsy part.0 -
Thanks jelloelloello. Your tips are so helpful. I had my 3rd treatment of Taxol today. I continued holding ice bottles. No one else there is doing that but I want to try to keep my hands neuropathy free. No problems with them so far. Went to wig shop and got a different style and color wig to replace my gray short hair! I figured if I’m going hairless I can get what I want! Hair started coming out tonight so I got it just in time. I guess I’ll get it shaved off tomorrow off Thursday. And so our journey begins.
God is Great all the tim
0 -
Hello all!
Day 3 after first chemo infusion for mom and she still feels fine. She went for a 2 hours walk today and did bunch of cooking.
Said she has a slight constipation and weird dry mouth feeling.
Anyone had dry mouth during chemo ? What would be good help for it?
Kate0 -
Biotene mouthwash is a good go-to for dry mouth. I luckily haven't suffered from it too much, but I bought some to be prepared and have been glad to have it the few times I have needed it. You can pick it up in most pharmacies with the other mouthwashes.
0 -
Thanks, Melbo!
0 -
I also used the Biotene dry mouth wash and liked it because the mint taste is very mild but still refreshing. Other ladies in my chemo group had issues with mouth sores and/or taste issues, so these are things to look out for.
0 -
Hello again-
I got through the first two days of chemo-12 weeks of Herceptin and Paxlitaxol and then Herceptin for the remainder of the year. Side effects after first time included diarrhea and a sore throat (felt almost like strep). I felt perfectly fine the day after chemo but the side effects set in on Day 2-3. Today was my second time. There was an issue with the port not working so I had the chemo through an IV in my arm. They had to flush the port out with TPA to unblock whatever was blocking it. Finally, at the very end of the session, the TPA worked and cleared the port. Yeah!
I am now mainly scared of the cumulative effects of chemo. I am still working part-time and really want to be able to keep going.
Thanks for listening. Good Luck to all of you.
0 -
Glad everyone is still hanging in there. 🙂 I wanted to mention something I found out yesterday. Great Clips hair salons have a program where they will buzz cancer patients for free. I think I will take advantage of it when the time comes. I just don't want the mess at my house of doing it myself. Thought I'd share. ❤️
0 -
Hi everyone!
day 4 after chemo for mom and she doesn’t feel very well. Said bones and muscles hurt as well as severe headache.What is the best medicine for headaches in this situation? She took some string medicine but it doesn’t help much.
Hoping it will go away by tomorrow.
Kate0 -
I had to notify MO of rash on face. They think caused by Taxol so started on steroids and steroid face cream. I sure hope it helps. So far this is the only side affect. Called great clips and getting head shaved tomorrow. They said it’s free and they will do it in back room so it’s private. Praying to continue with minimal side affects. Lostpup2424. Hope your port works next time
0 -
Hi everyone. I started my Taxol chemo September 2. This was after finishing my 4 rounds of AC - so I guess I'm kind of moonlighting from the July chemo club. So far, the two have been totally different. I agree, AC sucks - but it is totally manageable, and I'm happy to share whatever might help someone else get through it with as little worry as possible. My mother-in-law is a nurse and very into integrative therapies, and she's been very supportive and helpful in suggesting things to help ease the side effects. I've had success with (really good quality) CBD oil, turkeytail (a kind of mushroom) extract, experimented with fasting mimicking but just didn't have the willpower to keep up with it, etc.
My second Taxol treatment had to be canceled because of low blood counts, so I obviously don't have this quite figured out yet.
Good luck to us all!
0 -
Had my first treatment yesterday. Tons of info. They told me to take Claritin the day before and 3 days after my Taxol treatments, but since I'm having weekly treatments, I'll be taking it every day. Was also told B complex and L Glutamine will help with recovery and rebuilding good cells. I'm pretty tired and shakey, but other than that good. They told me the steriods/benedryl/anti nausea will wear off within 48 hours, so we'll see tomorrow.
Hoping you all are recovering well and keeping up the good vibes. That's what's going to get us through this
0 -
Katiha, how's your mom feeling? Checking in on every one else. I know we are all getting used to this new life, but i would love to hear how everyone is doing. I think it will be less lonely if we can hear from each other.
I'm day 4 and other than my insides feeling like they are vibrating and mild nausea, it's very manageable.
0 -
Hi! Started first of 6 cycles of TCHP last week and am doing ok. Just started having diarrhea and feel like I went thru a desert! New to the group and would welcome any suggestions how to manage side effects and food suggestions, since it all tastes aweful.
TY
0 -
sunflowers - I’m from the july chemo group doing TCHP. We’ve had a pretty thorough conversation about all things diarrhea if you want to check it out. My big advice is mix advanced care pedialyte with water and drink that cold - I usually do 1/3 or 1/4 pedialyte and top it off with water. It’s easier on the system then Gatorade and helps replenish electrolytes you lose to the diarrhea.
0 -
Hi Szmom4!
Thank you so much for asking. Mom is doing great today. But she was not feeling well at all day 4 and 5.
But today she is in great mood and did not take any pain pills and said she is 95% back to her normal energy levels.Started to lose her hair a bit. Great appetite still.
How is everyone feeling today?
Kate0 -
Well, day 5 after my first treatment and I fell great! Besides some bone pain, I've went to work and came home and cleaned up the house. Let's hope tomorrow is the same.
0 -
Hello everyone. I had 4th Taxol and 2nd Kanjinti today. I continued holding ice bottles during Taxol. So far no neuropathy. I don’t know how many treatments you have to have before it starts. Going to dermatologist for facial rash. It’s on face and arms from Taxol. But I have rosacea so he want to see best course for treating it. Occasional slight mouth sores which I use the baking soda and salt gargle.
I had my first TE fill Monday. He said I had “good skin” and filled 300 mls. No pain or discomfort but it sits up high. Feeling good and pray it stays this way. Y’all hang in there.
GOD IS GREA
0 -
hello everyone. I started my AC on 9/17. I went straight to bed afterwards and slept through the night. They gave me 3 types of meds before infusion and told me to take more anti nausea pills after. But I didn't need them at all. I had ups and downs between day 2 and day 5 but not bad enough that I can't do some exercises. And today I felt just fine and even ran around with my kids for a bit. I was told it gets harder with each AC infusion though.
What is this icing fingertips thing? My doctor never mentioned it, do I need it for AC or is it a thing when doing weekly T?
finger crossed foe my 10/1 infusion.0 -
july152020, the icing is to help with Neuropathy. Some people believe it works and some people don't. I was just reading last night, it's supposed to be good for your nails as well. I didn't do it the first time, but will from now on.
0
