Starting Chemo in February 2016?
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Suzted - I thought I had thrush too because my tongue is so tender and there's bumps on the back of it but my onc said it wasn't thrush and I should gargle with warm salt water a couple times a day. That should also help my sore throat. It's these little nagging SEs that are kicking my butt :-/
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hi everybody! I came to visit from the January board! I started chemo on January 6, and just had my third infusion yesterday. I'm doing Fec-D, which is a popular Canadian protocol. Although it seems different from the ones you guys are probably doing, most of the medications are very similar (some the same) and I have found my side effects to be similar to the ladies in my group
I've been tolerating quite well, of course my chemo week is a bit difficult, but I am on three weeks cycles and the next two weeks are pretty good. I'm working full-time on those two weeks, and even getting out a lot, exercising, etc. I've been pleasantly surprised. I thought I would just feel like crap for five months, hopefully having some okayish days. I didn't anticipate how many days I would feel completely normal, but they are definitely the majority!
Some tips:
- take your antinauseants the minute you start thinking you might be queasy. Don't let it go. I let it go once and will never make that mistake again
- hydrate as much as you can.
-if it all possible, get yourself outdoors in the fresh air and get a little walk, even 10 minutes. It amazes me how much a walk perks me up when I'm feeling gross or tired
-if you're doing Neulasta, try taking Claritin with it. I did that and so far I have had no bone pain. Ask your pharmacist about it
- remember there are very good medications for side effects, so if what you are taking is not working well, speak to you oncologist or Chemo Clinic and ask to try something else. They want to get your side effects as minimal as possible.
-start getting in the habit of shading your eyebrows before you start loosing them, that way it will be more natural and part of your morning routine as you have to shade them more and more. I have not lost my eyelashes or eyebrows yet, but my eyebrows are definitely thinned a lot
-at the beginning of your chemo cycle, you will likely be on steroids that make it hard to sleep. Ask about sleeping pills for this time. There is nothing worse than being wide-awake and having trouble sleeping when you're already feeling crappy. I personally take Tylenol p.m. for the first three days, it helps a lot and the pharmacist approved it
Feel free to ask me any questions, I don't know how many times I will come back to this thread but you can always send me a message! You've got this!
Chemo is a badass cancer killer!
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I have been gargling a baking soda salt mouth wash since day one and no mouth sores. 1 teaspoon of salt and 1 of baking soda per 8oz of water. I have a little mason jar of it so I can swish it around anytime I walk into the bathroom. It think it's really helped.
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My sister just ended treatment for Stage 3 breast cancer, and I am 4 years out from Stage 3 Triple Positive.
We both used baking soda only for tooth paste all during chemo and rinsed our mouths with it - sometimes with a little salt. Neither one of us had mouth sores, and I am prone to canker sores!
It truly does help! You will make it through!!
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Suzled - that's er a bummer (chemo humor). Hopefully immodium will deal with it. I asked my PharmMD how somethng could cause diahrea and constipation. He said the pills you take for two days after are what stops you up, the diahrea is the normal side effect in most cases. At least that makes logical sense.
Had complete command of the remote last night due to sick hubby, and then promptly fell asleep when all my evening meds kicked...lol. Thank goodness for "on demand" viewing or I'd never see the end of anything these days.
Welcome IMANI76 it is a bit of a ride!
Meds: as a person who doesn't normally take much more than a Vit D and a Topamax (to keep migraines away), the handful of morning meds is a bit daunting. That is when I feel like "oh, I have cancer" when I am at home. Sitting in the infusion chair, youngest "kid" (at 49) in the room, also made reality hit for a short time. The rest of the time it just seems like some surreal "illness".that isn't overly (or outwardly to others) affecting me much. I think the hair going will be the final realization. I already have a relativley short pixie cut, but that's miles away from bald. And I am not going to do the wig thing...just not for me. (I do have a rockin' green one for 3/17 from a St. Paddy's day party all set up)..
I kind of feel like printing t-shirts that say "Baldness: it's the cure not the cancer" or something like that because so many feel that baldness - sickness not realizing that it is a false/temporary sickness to bring about cure.
#reflectiveinthemorning
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thank you @lovestofly, your words are reassuring...I'm on the same regimen and had only one cycle.
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I am doing neoadjuvant chemotherapy and had first chemo infusion today (Herceptin, Perjeta, and Taxol). ill continue with Taxol weekly for 12 weeks, adding Herceptin and Perjeta every 3 weeks. The second phase is 8 weeks of biweekly AC.
To prepare for this I brought a positive attitude, a good book, and a ton of water. The oncology nurses say that they notice a correlation between attitude and side effects and note those that are dehydrated suffer more from side effects. It was a treat to have a six hour block to read a book, so it was a great distraction for me.
I've been home for only three hours, but I feel fine. I know it's very early yet, but there are those women who suffer only mild side effects. There's nothing to suggest that I couldn't be in that category.
I will update tomorrow!
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Hi Everyone,
Finally decided to introduce myself!
Diagnosed late Nov and had Dbl mastectomy w/ recon (all in one!) surgery on Dec. 19th. Recovery has been long and hard for me. Drains stayed in over 4 weeks!!! I've have 2 infections, one of which landed me in the hospital, both due to the drains being in my body. My actual surgery scars are healing nicely. I have brand new breasts that look and feel completely normal. I chose not to have implants put in and feel it was the right thing for me.
While recovering with my drains my husband and I went through fertility treatment to preserve embryos. Succeeded with 4. I am BRCA1 positive, so waiting to get our embryo biopsy results to see if they are carriers.
Started preventative chemo (x4 times) on 1/28, and was surprised to find out most of the side effects were managed by drugs. worst side effect has been not sleeping. But i figure if that's the worst of it I'm not going to complain. (also once you've had JP drains everything looks easier). I was supposed to start 2nd infusion last week but my doctors decided to delay by a week since I was fighting infection in my drain site... My family was taking me to Florida for the week and everyone agreed it will do me good to take time off and get stronger. I'm so happy and the past few days my body feels normal, energy level and appetite. I wonder it this is what it's like after we are done with treatments.
Even though all of the above were HARD, the thing that finally broke me was the hair loss. I finally chopped it off last Tuesday in prep for 2nd infusion. it looked cute but not a haircut i would ever CHOOSE.had to take a valium before going to the salon (Anxiety has been a recurring problem). Anyways, by Saturday I was shedding a ton and my scalp started hurting, so shaved it off on Sunday morning. It's only been a few days but i can't bring myself to look in the mirror. my scalp hurts and is super sensitive, and the hair continues to fall out.
I've been wearing my wig but still adjusting to it. i'm uncomfortable but my my wig makes me happy and helps feel "normal". I'm obsessed with taking pictures in it to check if it looks real enough. I miss my hair so much, never realized what a big part of me it was... anyone else feeling this? eyebrows and lashes are fine, my NP said they will survive, which is comforting.
it's been a crazy few months with a lot happening at the same time and so fast. I don't work since December and my life if just focused on getting better. Hoping to start being more active once my Drain site finally heals properly.
thanks for listening!
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Hey y'all. I had first Taxol and Herceptin Tuesday. Today I feel like I'm getting a sinus infection and like a truck ran over me. I need to work thru chemo so hopefully I can get used to the schedule. I'm going to see how next week goes and then see if Thursdays are better so I can recover over the weekend.
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Cautionary tale here... I ended up getting 4 hrs of IV fluids today along with tons of IV med because I let what I thought was good management and good attitude toward my SEs get too far. I was fine yesterday but the symptoms of heartburn, nausea, vomiting and diarrhea all returned with a vengeance. AMy best intentions to stay natural still wasn't enough to keep dehydration at bay since I needed to do a few other things I neglected. I drank at least 8-10 glasses of water a day as soon as chemo started but uncontrolled diarrhea depletes you and leaves you dehydrated.I used EmergenC.. not even close to up to the task. I was so afraid of the constipation that I wasn't using Imodium and thought water would just flush it through my system- I could do it more naturally!... part of my positive but misled attitude. Turned out my intestines were absorbing all that water and passing it straight through. Lesson learned and I made my MO a promise that when symptoms show up, even if I think I can wait them out, I need to call him and I will take the prescribed drugs (now using Lomotil 4X a day along with a couple other things to try and get these symptoms under control.) I also was told if you let the symptoms get too bad, they are harder to alleviate. We woman are stoics. I generally try and weather the storm and go it alone, but this is a storm of a whole new kind. He also reminded me I am now part of a care team who needs to know what's going on. This is all completely foreign.
My plan is to meet with my MO the day before the next chemo to come up with a game plan to make this a little easier. That may include a day of IV fluids the day after chemo. He did say everyone is different and what works for 1 person may not be what someone else needs. He said the spectrum of reactions and SEs ranges from people who have mild chemo SEs to people who need to be hospitalized. We just need to figure out the best way to treat each SE's before they get ahead of us. In some ways this first round gives me a much better sense that I need to do more next time.
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Hi, ladies. Also checking in, first post. I started TC on Tuesday the 16th. Feeling very tired, headache, and lost my taste today.
My husband was dx with stage iv lung cancer last September, so we are both getting chemo. I had to return to work shortly after my lumpectomy in December and prior to radiation in January. It's been a rough road. He got out of the hospital last week Tuesday from having pneumonia. We are taking care of each other best we can, we have some family and friends who are helping when they can.
I have one treatment down, 3 to go. Thanks for sharing your stories, it's truly encouraging to know you're not alone.
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Sheesh, CT scan machine broke so I am delayed AGAIN! So frustrating. It seems like the treatments will never start. And I keep waiting for something to be found on these stinking scans.
A question - I am worried about the chemo-induced menopause. How does that work? Periods stop instantly? Over time? I have no idea what to expect. What are the side effects? I can't find anybody talking about this. I am only 42 and have no idea what will happen. Do those of you who are into treatments have any advice/information?
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Wow! DGail! Many thoughts and hugs to you!!!
Thanks for the words of advice, Myra. I could see myself trying to stick with being as natural as possible, too. I'm glad you were able to get through okay.
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Jonsey - I had a period around my second infusion. It was lighter and shorter than normal. That was it and I haven't had one since. I am guessing in a couple months, I will have another one. I finished chemo mid-January.
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Pandiroo, thank you for sharing your journey! With all you have been through -- and are still going through -- it must feel a little odd that your hair loss turned out to be the one thing that finally really got to you!
All I can say is that all this stress feels so... cumulative. We're taking on some admittedly horrifying health issues, being strong for our loved ones. At least, I know I'm constantly stressing the positive around my family, not to put up some sort of front, but to acknowledge that this is a war we *can* win.
But you never really know what will hit you. You never really know when it'll hit you.
My own "buzz cut" left me feeling mannish and weird. I keep walking past mirrors wondering who that guy is. I don't look forward to baldness, but I'm hoping it'll all turn comical in my head when the time comes next week.
Of course, it may be easier for me to deal with because I have always been "the bookish one" in the background of those Jane Austen novels. Can I assume you are really pretty?
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Jonesy, menopause symptoms...hot flashes, insomnia, irregular periods, emotional...you know a typical day in the life of people getting chemo taking steroids off and on (or my life in general).
Dgail welcome and whew what a load of stuff you are carrying. Does your cancer center have social services also? They might be able to connect you with resources to help you and your hubby outside of the health care part.
Pandiroco- welcome to you too. I have heard the hair falling out stage can be a bit tender (I have another week before it is my turn). Silk pillow cases, soft knit caps with no seams, and a lint roller to help pull off the little daggers that remain seem to be the suggestions of previous champions. And if you can stand it, maybe going with just a silk scarf while at home to treat your head tenderly? I plan to just rock the bald...with some scarves, hats, and humor...and a fancy collection of earrings. I look at it this way..."the bald" is the cure working its magic, not the cancer. Have you checked out the Look Good, Feel Better program yet? Lots of tips for wig wearing (comfortably), scarf tying, and make up for thinning eyebrows and such.
Myra- I feel your battle..what do I handle myself (after all i have been Dr Mom in my family for 30 years) and what warrants "the call". I am still battling the leftovers of a cold/sinus thing...12 days, 3 post infusion. Dang thing isn't getting any worse but isn't getting any better. No fever. Drip drip cough cough. In normal times I wouldn't even consider a cold...now I worry about whether I am setting myself up for a raging sinus infection.
Day 3 - taste still seems okay. Can't stand the smell of garlic...lol. Still lots of gurgling tummy but that is probably because it is not used to being flooded by so much water. I can hear my belly now, "where's the coffee??" I did notice myself getting very tired by yesterday afternoon. Went to bed at 8...tried to read for a little while...found my book on the same page when I woke back up at 2 am. Back to sleep and up for good by 6 am. No steroids or anti nausea planned for today, so we will see how that goes. I don't seem to be having any SE from my Neulasta shot, so maybe the Claritin is doing its job there.
Here's to Friday mornings ladies!
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getting my pre meds as we speak the decadron is currently in the drip.....treatment #1 underway........
Oh and we adopted the cutest 15 lb rat terrier mix He iswhite and fawn colored. Kids named him Felix. He is mostly potty trained and other than walking on the side tables and picking up things that shouldn't be in his mouth is a lover! About 1-1 1/2 yrs old came from a hoarding situation. And crate trained. Leaving him home alone today for the first time. His foster mom had left him in the crate 6-8 hrs without issues so crossing my fingers. Looking forward to warmer weather and learning to walk on a leash! At least he is light enough to pick up.
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06elise - My husband and I have been treating this process very pragmatically and logically, as in focusing on solutions. But it's still very emotionally draining! you're right about the cumulative feelings, I have those days where it's WTF why is this happening. and I think we are all pretty! have always had long hair so it was a big 180 change.
Chambo - I ordered a silk pillowcase and soft beanie which arrive tomorrow. Just been focusing on trying to make thing more comfortable. also been wearing a soft scarf around the house which feels nice but I can't imagine wearing in public - it's a personal challenge and just too early for me to have the confidence. I just went from being a girl who doesn't care one bit what people think to very self conscious in public. I've never been skinny or tall but learned to own my look and be content, so this big change is hard to swallow. Definitely planning to go to LGFB soon, especially since i need to work on eyebrow makeup skills ;-)
HausFrauMi - PUPPY!!!! congrats and enjoy. pets make everything better.
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glad to help mama.
I am also 42. I was actually on my period hen I started chemo, the next one came about 5 days late and was very light and very short (3 days, only one of them more than spotting), I'm not anticipating and getting another one until I'm done chemo but I don't really know. I have been having some hot flashes at night, where I wake up to soaked in sweat, not every night but usually around the middle of my three week cycle. That's been the only menopause symptom
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Had my first chemo Feb 9 and plan to have my second on 23rd. Felt pretty good with only minor gastro symptoms like indigestion and very slight nausea. Am getting Adriamycin and Cytoxan x4 then Taxol x4. Will have radiation and oral anti-hormone to follow. Am getting nervous about the hair loss.
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Hi all, starting AC x4 followed by T x12 Thursday 2/25.
Went to chemo school this afternoon. NP says so, you're doing AC x4 and T x4....(no, I think that's x12) and then the informed consent had one of the wrong drugs on it. (no, I think it's Cytoxan, not Doxorubicin) so that's just a teensy bit worrisome. I would be more encouraged if she'd had the drugs and regimes right. Right? I am smart and I pay attention but I don't want to have to be on top of everything, especially once I start feeling crummy. Should I mention it to my MO?
Other than that, I'm ready, let's get this started already. It is very helpful to have you all share your experience and advice, thanks! Wonder if I'm that last one in to the February pool?
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I'm glad someone said something about periods. I was just wondering about that. Good to know.
HausFrau- I hope you're first treatment goes smoothly. Congrats on your new fur guy.
I got my port today. I didn't realize that it would be so painful 8 hours post. I guess my pain threshold isn't what it used to be
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Hi all, your posts have been so helpful! My mum had her first treatment on February 18 and was exhausted from the long day that started with a port insertion. She's on a 3week cycle of T/C plus Herceptin, then Herceptin for the remainder of a year, then Tomoxofin for five years. Neulasta shot on February 19.
We've got the wigs and everything we need so we feel very prepared.
I've moved home for the most part and feel so grateful that I own my company and can take time off as needed without much flak. Im in charge of her care and cooking every healthy soup imaginable. Potato/leek today. Tomorrow broccoli/kale. The day after, carrot/ginger. Lots of rice noodles with veggie broth and steamed vegetables. Peppermint tea, and you know what's helping most? Perrier. She can't stomach black tea anymore.
Lots to learn. Fingers crossed she continues to feel okay. Mostly flu-like symptoms occasionally, hold/cold flashes, and fatigue.
The best advice ever? Get moving. Even if you don't feel like it. It helps. Oh. And let people help. It feels good for us caregivers.
You are all so brave.
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CCLYYZ- Good luck to your mom. She is lucky to have you to cook all those healthy soups for you.I am glad you mentioned Perrier. I used to like that. I stopped drinking it a few years back when there was some kind of health issue with it. I may just pick up some. I can pretend I am having a little bottle of wine.
HausFrauMi- Puppy sounds like a lot of fun.
Chmabo- While your tummy asks "Where is the coffee?" when I sit down for dinner my tummy wants to know" Where is my glass of red wine?"
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Reflect, is it possible that your "informed consent" actually did have the proper drugs on it? AC is the combination of Cytoxan and Doxorubicin (the brand name for Doxorubicin starts with the letter "A").
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Reflect,
This along with some other oversights happened to me too! (Taxol and Taxotere are 2 very different drugs!) It is absolutely unacceptable. I would definitely let the MO know. I'm the same way, I have researched the hell out of everything and so has my tittycommitte. What I have learned is that we are our own best advocates. We must speak up, because if we don't no one else will and our health is not something to mess with. These types of mistakes continue to affect ourselves and possible other patients down the line if they are not brought to anyone's attention. I'm sorry, but I happen to feel that although we are all human and are allowed to make mistakes, there are some professions, especial those part of a multi billion dollar industry "caring" for humans, where the price we pay should afford us a higher level of care and professionalism. They work for us! Don't ever feel bad for speaking up as our health is no joke. I call my MO and expressed my serious concern about the issues! It was 5 days before my first treatment and the cumulation of issues gave me a panic attack! I told him I was loosing confidence in his teams ability to care for me. "How am I supposed to put my faith in your hands with misinformation and bad attitudes!?" He assured me that he would speak to the chemo nurses and that moving forward I could rest assured that my health is a priority (I told him I was seriously about to walk and find another MO).
I have noticed a huge difference. We are getting VIP treatment now hAha, and no one gives me or my team attitude when we ask questions or make specific requests. This is a big business and they work for us! You would think great customer service in the medical industry is a requirement but it's not and It totally sucks that the squeaky wheel gets the oil in a place where all of us should receive the same level of great care. Stand up for your care and never feel bad about it and remember a stern please and thank you go a long way in situations like these.
We are all smiling now in our VIP infusion zone!
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Hi Elise, no it was an error. She apologized and corrected it.
Hi 33triple, thanks for you response. I will talk to the MO. There weren't any attitude issues (thankfully) but I was concerned with two errors, even if it was during the pretreatment teaching session. I want my team to be focused and have the correct information at all times! Now I will check everything.
Your VIP zone is glorious! Is that the ocean outside the windows? Sorry to say I will have nothing so lovely, but will have my friends!
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Reflect,
I imagine there's an ocean out there, but really it's a whole bunch of buildings 😉. My friend sitting in the chair to the far right kicked cancer's bottom 3 years ago. At that time she went and toured all of the infusion centers in Atlanta and found the only one with awesome windows! I followed in her footsteps. This is the back side of the main infusion room which has even more beautiful skyline views. They tried to tell me if I was using cold caps I had to use this tiny cramped room with an old hospital bed from the 70's. Ha! No thank you! Well, after the oversights and attitude my MO stepped in and they gave me the spot at the back of the center which is never crowded and gives us room to comfortably do the cold cap dance for 8 hours during my treatments.
I think now everyone realizes we can't stop/won't stop making sure I get the highest standard of care, so instead of acting like something is wrong with us they are being accommodating.
Let me know how it goes!!!
❤️❤️❤️
N
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hi, I just read your post and I have had a very similar situation. My first chemo was on 2/8 and I have not been able to control the diarrhea since. It started with heartburn and stomach pain something horrible. I live on Imodium i feel like. I have had the most positive attitude but I just want to eat.
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