Chemo Starting September 2018
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You look absolutely beautiful.
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sadlynew - DO your symptoms set in right away with AC or is there a delay of a couple of days. I was just wondering for your Thanksgiving. With TC, I have it on Friday and don't start feeling it until Sunday evening. I hope it goes by quickly for you - I know February sounds like a long time away.
Being Positive - Thank you! I decided if I was going to be wearing caps and scarves they would all be blue or green to go with my eyes. Trying to make the most of it! I think that eye discharge is a side effect of chemo. I found this article.
Heather - You look great! And good on you for going bare-headed. I think it should depend entirely on what's comfortable for you rather than comfortable with others. I'm at a weird in between patchy stage, but when I'm completely bald, I may go covering-free more often. I already do at home.
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picksie. I think we’re on the same plan four AC followed by twelve T. I also have node involvement. I have treatment two on Thursday.
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wanderweg, not sure as of yet. I’ll have my first ACT next Tuesday. Port placement this Tuesday. I’ve read these blogs so much to try and get a grip on what to expect. I know it’s all an unknown. February seems like forever away. I’m just hoping for an end day. Then I made the mistake of reviewing the Tamoxifen boards and the terror it can cause. Ugh. Going to take this day by day. The anticipation for the worst is deafening.
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wanderweg - Happy birthday! I'll raise a glass to you! Finally enjoyed some wine over the weekend which made me feel almost normal.
MandM - So sorry for your dental woes. My dentist said if something happened to one of the fillings we're "watching" she would just put a temporary one in until chemo is over. Hope there is a good solution for you.
Beingpositive - I have also had sticky eyes. It's quite a strange feeling.
I think I had my first hot flash last night - snapped awake at 1:30 covered in sweat with my heart racing. Anyone else? Thought it might take a little longer for those to kick in... I have also started having some vaginal discomfort over the past few days. Def not looking forward to this part. Hope it is temporary.
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I'm starting TC x4 this Wednesday. I'm 39 and have a toddler. I thought I would be skipping chemotherapy but my Oncotype came back very high. Here we go ... Good luck to everyone!
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Heather, love the shave! We are on similar regimens, but I will be doing four bi-weekly Dose-dense Taxol rather than 12 weekly. We end up receiving the same amount, but on a different timeline. If all goes as planned, my last infusion of Taxol will be 12/19. Hope Thursday goes well for you!
pcranky, forgot to mention earlier, the hair/glasses look is super cute! I might go get me some readers.
Wanderweg, Happy Birthday!!! I agree, that's a great color on you.
beeline... night sweats... ick. Sorry.
If you're inclined to experiment, perhaps CBDs might offer some relief. It's impossible to isolate any variable in our scenario, but I think it might have been responsible for minimizing my night sweats on a couple occasions. Perhaps? (and where's Stimp?) BeingPositive, any word on the eyes? First thing that came to mind is pinkeye. I hope it's resolved soon.
M&M, ouch! Sorry for the dental curve ball. How goes the head shaving?
SadlyNew, glad you're staying with us!
BT39, welcome. Wishing you a successful and uneventful chemo conclusion.
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Sadlynew, I also finish AC in November Lord willing and then twelve weeks of T, hopefully ending in February. Will you have radiation also? I will, for 6-7 weeks. I wonder if radiation will start right after chemo, or if I’ll have a break
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good evening everyone, cut it all off today. I just didn’t have the heart to shave it though. Will Wear the wig to work tomorrow. Probably hats elsewhere. Not sure how I feel. Heather kudos to you. you look beautiful
Wanderweg happy birthday! What a beautiful blue Thanks everyone for the wishes of support. Will call my MO tomorrow and see if I can have dental work. Doubtful from everything I’ve read. Besides the humiliation of the hair. I do feel pretty good tonight. Have a taste for dark chocolate for the first time. Had to chewvery carefully but it was delicious. Simple pleasures
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Hi heather - the million dollar question (radiation). My MO doesn’t think so. Of course, I’m skeptical. I want to hit this thing with it all. I have a second opinion tomorrow to discuss my case. I agree with ACT but I wanted a second set of eyes looking at the diagnosis and radiation especially. I’m very curious what they say. Cheers to a Finish line. I’m so ready to get started with AC. (I’m sure I’ll regret saying that soon enough). I feel like I’ve waited my recovery from DMX to get started and it seems like forever.0
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M-and-M, looks great!
re: chemo regimens, I'm also on 4xAC then 12 weekly taxol. My MO said there would be a one month break before rads which for me should be March, my birthday and anniversary month! Then hoping to be done and dusted end of April.
Piksie, thanks for asking after Stimp
(often known in our house as The Royal Stimp Here she is in all her glory:
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hello all checking in again day 5 after first AC. Everyone looks awesome sans hair! I chopped mine off completely the day I started chemo just to get it over with, kinda liking the coolness on top of my head but not brave to go bald in public yet. Loving the animal pictures too!
Feeling antsy and tired, come off steroids today see how that goes. Enjoyed some moes southwest grill yesterday, it was awesome. Taste buds are off and on but for most part on. No other issues other than tired and sticking on a schedule with nausea meds. I keep telling myself 3 more times of AC, I just wish I was there already sometimes.
We are doing it ladies, day by day we will get there and the celebration will be glorious at the end. You ladies embody bravery, u can do it
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WOW u Ladies are rocking it! If any of you want you can try using a sticky lint roller to remove the loose hair.
For those of you wondering about Rads, they usually start when you would have had your next chemo, ex: my chemo was every 3 weeks, so 3 weeks after my final chemo I started my Rads.
A few things you might see in the next few weeks are eye twitching, perfectly normal.
As for dental issues, my white fillings all turned a dark yellow from the chemo.
Keep up the good work Ladies!
Happy B-Day Wanderweg!
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Good morning all, I hope everyone had as nice a weekend as possible. We had a birthday party for my stepdaughter yesterday. My immediate family and our closest friends. my family went through this chemo thing with my sister in law (my brother's wife) 3 years ago who had a stage 3 diagnosis at 34. The only “good" news in all that is it makes it easier for me as every knows the drill. She had exact opposite kind of IDC from me, ER- and HER2 positive but did TC also.
My bone pain has subsided. I have been putting theseNUUM electrolyte tablets in water. Not sure if they helped or my body got better but not going to stop. Also helps with water boredom. They taste petty good especially with lots of ice. It looks like the pain is the chemo and not the neleusta.
A welcome to all the newbies and good luck to those starting this week. The anticipation is harder, at least on the mind. I can now say I am 1/2 way through chemo.
I do have a question re hair, cold capper not as I have extremely thin near bald spots. In feel more Brillo pad than peach fuzz. New hair coming in?
And I noticed last night I lost a few clumps of eyelashes on one side. That made me mad. Eyebrows are ok so far.
Have a good day
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Happy Belated, Wanderweg! Looking good ladies! Still trying to embrace the scarf/hat/wig situation and making mild strides. Hello to all the fur babies. I have included a photo of my boy Dusty this time, affectionately nicknamed "Mr. Luva Luva".
One week past my second AC and feeling pretty normal again, thank goodness! Thank you all for your kindness and uplifting words when I was down the other day!!
Reflections on this second round: don't mess with the meds. I took half doses of 2 of my 4 days of steroids in the attempt to avoid constant hunger, heartburn, and jitteriness. I didn't feel awful, but I didn't feel as good as round 1. I also started taking prilosec instead of just eating pepcids - mostly bc they taste so gross. Also, I got my period, pretty much right on time and I think that may also have played into my sadness for that day or 2 before onset. So far it seems milder than it would be normally - we shall see today and tomorrow.
My last AC is 10/22. Then 12 weeks of Taxol, which should end mid-January. I was told I would have a few weeks off before I started radiation, so I'm hoping all will be complete by late March, early April.
Other observations: for those of you who had mastectomies, do you notice increased sensitivity during your treatment week? I had been healing beautifully (trying to give these frankenboobs some love and positive thoughts - they are far from beautiful) but I notice in the days after infusion the incisions seem pinker and achier and just "off". I showed my plastic surgeon who seemed mostly unconcerned, but he did put me on a weeks worth of abx and said I would only have one more fill during my AC portion. Again, this brings me back to the damn steroids, which also inhibit healing. It feels a bit of damned if you do, damned if you don't.
All in all I am so excited for my "good week" that I have probably over-scheduled myself with fun things and placed too-high expectations on what I will accomplish around my house. Hope you all have a good week, too!
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Hello All.
Welcome to everyone new!
Wanderweg - Happy Belated!
Heather and M & M. Loving the short hair!
KK - What a beautiful kitty! (and thanks for the earworm!)
I believe I've come down with a cold. I'm sulking about it. I feel crummy and I don't know what I can take for itand I have to go in tomorrow anyway so i'm going to run it by them but WAAAAAH.
Ordered the Hi-rent wig today I went in and tried it on one more time and stil love it just as much! It arrives thursday
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Justkeepmoving - I'm sorry about your wait... You may want to get second opinion at another center just to see whether the pathology results and MO treatment plan would be the same. If they're still taking time with staining the sample and such hopefully this can make them move along quicker. I got a second opinion and considered all the different options until I settled on one I felt comfortable with.
pcranky - I woke up with a headache a stuffy nose too! Since my white blood cell count is still decent, I'm just going to sleep more and hope my body can fight it off on its own. Was drinking chicken soup and lemon juice (with water) too.
Wanderweg - Happy birthday! So glad you could enjoy your birthday!
Heather - Everyone's journey and perspective is different... so I would only share my own. I am grateful my cancer was found early despite me being the absent-minded person that I am. I find much support from my church as well and it has been very helpful. May God ease your fears and grant you a peace that is beyond understanding (Phil 4:7). And your head looks totally fine!
And for everyone going through chemo, we're doing this with a goal! I went in for an ultrasound today and asked them to measure the tumor since I'm getting neoadjuvant treatment, and it is shrinking! May all your treatment be effective too!
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I joined the club and shaved my head. A lot of tears but glad I did it. It was just gross falling out all over the place and the shower was the worst. Went to someone I have never met and she did it for free would not even take a tip. Did not expect that 😍
All your experiences are helping me so much.
Thank you
Ginger
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ginger - you look beautiful! My time is coming soon. I can only hope I look HALF as good as the women on this blog!
Pcranky - I’m still laughing about your reference to a “high rent” wig. I do feel your pain. Hope you get to feeling better as well. I feel like I’ll need to be seclusion once treatment starts to avoid colds (not that it’s even possible)
Had my port “installed” this morning. What an annoying little sucker. A little sore. Hoping it becomes more tolerable.
Sending well wishes to all :-)0 -
Sorry for being out of touch. Last Thursday was chemo day...so today is day 5? I've been lying on the couch, seriously, since then. With all the changes, I'm better....less steroids (my sobbing must have impressed them!), 25% less chemo, more anti-nausea drugs. But I still can't eat. haven't thrown up but I can't really eat anything but toast. feel really weak. Just coasting here until I start to feel better which might be 5-6 more days if it's like last time. Hang in there ladies!
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I’m loving all the shaved heads! What a sisterhood we are!
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Thank you all.
Turns out it was likely not a cold and was likely allergies which made me super susceptible to other allergies.
Today was taxol week 5. They discontinued steroids last week (and I was fine). Today I had a severe allergic reaction to Taxol (throat starting to close, pressure on lungs, turned bright red. bp went all the way up)
So the steroids are back. They gave me Steroids and benadryl and a nebulizer treatmetn and I was able to finish the infusion.
Good times.
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pcranky, I'm so sorry! That sounds terrible. I've had asthma attacks before, and not being able to breathe is the worst feeling ever! Hope you are feeling better now!
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@pcranky, so sorry to hear about your reaction. I hate the steroids too but I guess that is why, darn. I hope you are doing better.
Ginger and M-and-M you all look great!!
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Hi all! I am not a big board-poster, so I think this will end up being a loooooong post. I'll bullet-point it so it's easier to just skim over! ; )
I liked reading everyone's experiences, so I'll just plop mine here in case anyone else is like me.
I'm now sitting here the day after #5 out of 12 taxols/herceptin and 30 days into all this.
INFUSION DAYS:
Infusion 1: easy-peasy. no side effects.
Did get a few stomach cramps, but I think it was from neglecting to take my steroids with food or milk. Once I remembered to do this, no more GI issues at all.
Infusion 2: ditto. easy , unitlllllll……
5 days after this one, broke out in terrible hives! They don't think related to the chemo. No anti-itch creme or spray remotely worked. Loaded up on benadryl, and when that didn't work in the overnite hours, took even more. Right after that, seemed to get even worse. So following night, used allegra instead, cut out all benadryl, and they cleared right up. I googled, and it does seem as tho over-the-counter benadryl can have fillers/dyes, that CAN cause allergic reactions…? Who knows, but I will never take OTC benadryl again! The benadryl I get in IV at infusion is ok since no fillers or dyes. This is probably not the cause of mine, but I'm not risking it. ha! Those hives lasted into infusion #3, but luckily it was not delayed for that reason. They lasted a week in total. Had bruising up and down my legs for several days after hives cleared up. Hives were EVERYWHERE, face included. My face was swollen as well as my hands and feet. I now take an allegra every night before bed.
Infusion 3: easy.
Infusion 4 easy. But after this one, was too tired to do the usual walking of the dog when I got home. Not sure if I was just beat, or if from the infusion itself.
Infusion 5: Had a busy afternoon planned: had to get my sis to the airport, had to drop one kid at golf, pick up other kid up from ultimate frisbee, had to pick golf kid up, had to feed family, had to bring other kid to swim, had to pick that kid up from swim…. You get it! So asked for reduced benadryl just to avoid potential fatigue like last time. They instead switched me to Atarax? Hoping hives don't come back for any reason! But was not tired and was able to walk dog as usual AND get all that other stuff accomplished. ; )
NEUROPATHY I have not iced at all to this point, as I have to work during treatment, and I stand up. I think I will wait til I start feeling tingles to jump on this. So far so good. I do take B6 every day. I have all the icing stuff when/if needed. I hear after #8 or 9 this could be a big issue.
WORK I have only missed one day of work, and that was the day I was overmedicated and loopy from my hives! I work from home, so this has been easy for me. On infusion days I work throughout treatment (at a standing desk - it's great!), so literally have missed almost nothing.
EXERCISE I continue to walk the dog 2 miles per day. I also do HIIT training 6 days per week for about 20 minutes. This is 30-45 seconds of cardio, followed by 30 second of weights, planks, pushups, crunches, etc…then cardio again… back and forth for 20 minutes. It's great since I don't get too sweaty on my scalp, as I am cold capping. Wanted to ramp up the yoga, but find I am not having (or not making??!) the time to fit this in as well.
DIET I do not eat red meat. I do eat seafood however. So far all my labs have been good, but I wonder if the red meat thing will change this at some point. I do have a smoothie every morning with lots of dark leafy greens in it. I'm worried about all the antioxidants I eat as I read that those also protect cancer cells and therefore fight the chemo. I reduced my daily vitamin by half due to this. I cut down on my coffees (now twice a week instead of every day, and I do decaf now (ugh!) to avoid any added sleep issues). Also - I have stopped my beer/wine/cocktail intake cold turkey! I KNOW!!! This SUCKS!! I drink tons and tons of water (with a lemon slice), and I feel like for the duration, I'm going to baby my liver while all these toxins are swirling around inside of me. I have had two non-alcoholic beers over this time. It is football season, after all (Go Pack Go!! ; )
HAIR I am cold capping with Paxman. So far so great. (But I will not rest on my laurels as I know this can change at any moment!). I have been taking Biotin daily since a week before I started any of this. I rinse my hair the day after treatment, then wash 3 days after (with the paxman shampoo/conditioner), and that's it. Always with cold water. I comb out gently with a wide-tooth comb ONLY before rinse or washing showers. I grip my hair at the scalp and comb out the ends to avoid pulling. I have NOT used the brush thing that came with the kit. My hair is way too thick for that thing! After the 3rd treatment I started also wrapping the outer cap with an ace bandage to make tighter, as I learned from a girl I met there doing same. She was on treatment 9 with a full head of hair, so…. yeah. I was worried I didn't have things tight enough for my first two, but time will tell I guess. The ONLY cold capping rule I broke is that I do scrunch product into the ends of my hair as I have very thick frizzy (half-jewish) hair. With product it's a little more curly than frizzy. I am also doing satin pillowcases, and thanks to the girl with the ace bandage tip, I also now wear a hair net at night to avoid extra tangling. Anyway, so far, I seem to have lost LESS hair daily since I started than before this all happened. Maybe 30 hairs total? yay!
I ordered that EES stuff for brows. Hasn't been delivered yet. Got an Rx for latisse from my dr., but I keep reading it doesn't work so I haven't filled it… I may just teach myself how to do false eyelashes when that time comes.
It looks like my nose hairs are gone. I still have arm hairs, brows, lashes, pubes.. I haven't had to shave my armpits or legs for the last week tho, which is a huge change as I am pretty hairy and things grow fast and I have to shave every single day normally.
NAILS I am taking biotin for hair and nails, and am also applying OPI Nail Envy every now and then. I only started the polish two weeks ago. I also think I'm going to start rubbing something into my cuticles but not sure what yet. And I keep all cut as short as I can go. So far so good.
ATTITUDE This SUCKS, but in time, it will all be behind me! There is always someone worse off, so I do not complain. Some babies so sadly have to go through chemo, so I can certainly do it. On another note, I'm still hoping to go thru all this with no one knowing. My husband, sister, and kids know. No one else knows, even my best friends. My mom has terminal cancer right now, and if she knew this about me, it would devastate her. I also HATE attention, and don't want anyone making a fuss, which would just make me feel "more ill".
RADIATION DOUBTS: I am almost sick about putting radiation in/on my body after all this, and I am going to bring up to my doctor doing a mastectomy of some sort instead (on both sides). I tested negative for like 80 genes, but nonetheless, I want to put all worries behind me. I know nothing about the types of boob jobs that are out there. Tried to look into it a bit on this site but was unsuccessful. (I don't wanna see any photos yet!). I'm a pretty tough chick, so I'm not too worried about surgery or recovery. I'd rather have a short hospital stay than, what? Like 30 daily trips into the hospital for radiation treatments? And lots chicks get boob jobs purely for vanity, so I can do it too, right? To save my life? As it was, my chemo alone was somewhat voluntary as I was in a gray area, I guess, so, gonna hit this with all I've got and then put it all behind me as best I can. Advice on all this welcome!!!
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crap! My bloodwork showed low white counts. Retesting levels today. Supposed to have chemo tomorrow....the nurse said probably Nuelasta shot the day after chemo....anyone else have this issue? I’m disappointed...thought with my young age 39...I’d be okay without...
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Hello ladies, I am back after a week of first chemo round. Thank you all who replied on eye discharge. Thankfully it was just thing of that day and did not feel anything afterwards. So MO is not worried. But had terrible lower back/hip pain for last few days and couldn't sleep couple of nights. MO suggested to take advil instead of tylenol to address inflammation and that finally helped. Today I am feeling much much better though cannot say I feel back to normal 100%. Hopefully will be there in next couple of days. Upcoming hair loss is making me nervous. Will go for wig shopping over weekend.
Ginger, I feel you. But glad to see that you chose to look at positive experience out of it. You have very expressive eyes.
Sadlynew, good to know that port installation went fine. Hoping that chemo round too goes easy on you. Best wishes.
Fairchild, hope today is a better than yday. As you already said, we just have to hang in there. Wishing you strength and positivity.
Pcranky, really sorry to hear about your allergic reaction. I had read that one can get it in any round. I salute your determination and mind power to fight back. Hope you are feeling better.
Umakemehappy, thanks for posting your experience. It gives many good pointers. I am going to take inspiration from you on exercise. I do minimal yoga and i think i can do more, but just being lazy. Your exercise routine is giving me new aim. Thank you. And i am right there with you on attitude. I have also not shared it with anyone other than family and couple of best friends who are far away in my home country. I hope my upcoming hair loss will not reveal it and will get a good wig. So checking for work from home option.
Heather, so sorry to hear about low white count. I have no idea about it. I am sure your MO is suggesting the best approach for you. Hope you will be back on track soon.
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I haven’t posted much, but find so much info & comfort from everyone’s experiences.
After 1st treatment, Got an infection in parotid gland, huge swelling, & pain. On antibiotics, so now have a yeast infection!! It just keeps getting better!! NOT!! Lol
Had my 2nd FEC infusion last Thursday. MO added a patch for nausea this time. Really helped with the nausea, but the fatigue, and no energy is crazy. So this is Day 6, hoping I start to feel more normal soon.
Mouth issues are terrible this time, feels like razor blades trying to swallow. Using salt/soda wash/gargle helps just a little. Nothing tastes good😳. Have to make myself eat.
Next treatment will be Taxotere. I’ve heard lots of stories about the bone pain from it, so dreading it😢
Today, is a down day. I just wanna curl up somewhere, and do nothing!
I know we can do this, it just stinks, some days!!
Thanks for listening
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Joyce, I'm on Taxotere, too, and I haven't had horrendous bone pain, except for the first treatment when I forgot to take claritin. This time round I took the claritin in advance, and I've had nothing more than my regular aches and pains from lying around the house.
It sounds like you are having rough chemo, and I can certainly appreciate that, given that my own experience has been pretty bad. Same kinds of symptoms as you....profound fatigue, severe nausea/vomiting, and just feeling generally ill. I have months of leave time, so I've taken off, and I'm just resting, figuring that the less I go out in the world of germs the better. But I'm single and my kids are grown.
Anyway, I just hoped to encourage you that the Taxotere isn't necessarily painful. My doctor also gave me a patch, which is making this 2nd round of chemo so much less horrible.
Good luck!
Leslie
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Hey, do any of you understand WHY we get the drugs we get?
I've been so darned sick, I haven't been able to get this question out when I'm with the onc. But honestly, it's scary not to understand why we are getting these drugs. I sense my regimen is a bit different from most of you. I'm getting Perjeta, Herceptin, Taxotera, and Carboplatin.
I have 3 kinds of bc: inv. lobular (normal kind), inv. pleomorphic lobular, and inv. ductal. I'm on an AI because the ductal ca is ER+/PR+. But the pleomorphic lobular is HER2+, which (I think) is the reason they are giving me Perjeta and Herceptin. I have no idea why the Taxotera and the Carboplatin.
And the plan (if I have it right) is 6 chemo treatments with these 4 magic drugs, and then the Herceptin continues for a full year. And then I switch to another drug for a 2nd year.
Have any of you figured out these mysteries? Thanks,
Leslie
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