Chemo starting October 2017
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Just coming off a couch potato weekend. Had my third AC last Monday and this one took the longest to bounce back from. Nausea, bone pain and extreme fatigue. I'm sleeping more hours than I'm awake. I've lost 27 pounds since diagnosis. Have my last AC on Monday of Thanksgiving week. Then on to Taxol. Looking forward to the change.
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Hi ladies, hope everyone is doing ok this week. Tomorrow marks my treatment #3 and I am so not looking forward to this week.
The days after my TC infusion are really the worst. Tired as hell and just want to sleep all day for like 6 days, and the Neulasta shot the day after makes all my bones and muscles just ache like there's no tomorrow. I tried taking Claritin the last time and it didn't do squat unfortunately. Maybe I'll ask if I can take 2 instead of just 1. I'm feeling a bit blessed that I haven't had the other SEs that some of you are writing about. All that being said about tiredness and aches, I haven't had any mouth sores, no diarrhea, no constipation, no dry skin, and so far (fingers crossed!!) no more hair loss. Nausea is kept at bay with my variety of meds but honestly I am really only taking one Compazine during the day on week 1 and a Lorazepam or Ativan at night so I can sleep better. Week 2 is definitely a better week when the aches go bye and by week 3 I am feeling totally normal again. I really do see the light at the end of this chemo tunnel.
One saving grace I have found is Muscle Milk Protein Shakes. They are my new favorite snack so my stomach doesn't ever get too empty and I don't get nauseated. They have ones that are only 100 calories, 5 carbs, zero sugar and 20 grams of protein, so I am taking in calories regularly without having to force feed myself now-awful tasting food.
And thanks for all the wig advice! I finally took myself into three wig shops this past week and after all was said and done I ordered two. Hopefully one will be here before thanksgiving so I can try it out on my family. You guys were totally right on finding a local place where I could try something on versus trial and returns with online shopping. It made all the difference and the store owners where I ordered really spent the time with me explaining all the types of "stuff' with wigs so that I could find something that I really loved. These both made me feel like me again. Here's the pics.
These pic colors are really light - mine will be dark brown. The first one is human hair and should come first. I will cut bangs into it when it comes. The second is not quite the one I got but I can't find a pic of it exactly - it's a little longer than the other, totally straight instead of that flip at the bottom of the pic, and it's a monofilament hand tied with bangs so feels pretty normal. I have been pretty confident going out with beanies but am looking forward to sporting hair again.
Anyway, I hope everyone has a good week. Hang in there ladies!
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Scaligirl - I'm glad you went in person to a wig shop. It really helps, right? The two you are getting look great. I think the bangs will help de-wiggifying it!
I'm starting to have some changes to my tastebuds. They aren't totally gone but stuff is starting to taste weird, or not at all. I read about this cookbook and just ordered it as an eBook. The chapters are broken down by chemo-related issue like mouth sores, nausea, neutropenia, etc. I haven't cooked anything from it yet so I can't recommend any recipes, but there's a lot of good info in there. The book is "The Lahey Clinic Guide to Cooking Through Cancer: 100+ Recipes for Treatment and Recovery". I got it on Amazon: link to chemo cookbook on Amazon
For those of you who have been dealing with taste bud changes: Did your taste change over a couple of weeks? Do you eventually not taste things? Do you taste just as much but it's different? Right now for me things are just starting to taste odd and some things almost not at all. I would love to know what I might expect, knowing full well that everyone is different.
Hope everyone is off to a good week. Good luck to the Monday chemo girls!
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Agatha, my taste changes after chemo, up until maybe 5 days after. Eventually it returns to normal. For instance, today, 12 days post my most recent chemo treatment, my taste is back to normal. Water doesn't taste metallic any longer and things taste about what I'd expect.
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FYI, after checking with my MO, I started taking melatonin last night because I'm having difficulty getting a full night's sleep. Although they said it might take several days to build up, I slept like a rock! I cannot be absolutely certain it was the melatonin, but it's something that those who are having a hard time getting to sleep should consider. Of course, you should check with your MO first because there are some medications that you shouldn't take melatonin with, including high BP medications.
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Another hemriod solution. This one came from my aunt who is a labour and delivery nurse. Refrigerated used tea bags. Weird. But worked.
I agree with the melatonin. Helpful for me who hadn’t slept without a sleeping pill in two months. Melatonin helped me kick that habit.
A bit sad today. Chemo is coming which means I’ll be checked out for a few days. I so enjoyed this last week and a half of feeling well!
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Day 3, quarantine myself in our master bedroom. Kid still sick and trying not to catch it. I do have on and off runny nose, slight moist cough but no fever. I am at low wbc days, if this round it like #1. So been sleeping, playing sudoku, catching up on Hulu. The isolation has me feeling a bit down and back to some anxiety over diagnosis. Need to stop googling and just try to stay positive that the process is working!
Tomorrow is the 3rd annivarsary of my brothers death. So that doesn't help my mood. He was a alcoholic and died pretty suddenly of cirrhosis of the liver. He never went to doctors and didn't know how bad he was until it was too late. Even though some people don't have sympathy for someone who "did it to themselves", he still is my little brother who I wish was here cracking jokes and making me laugh. I feel for my poor momma. Losing her only son and now her only daughter is battling breast cancer at young age (in breast cancer terms).
Have not had much of a appetite. Pretty much sticking to a premier protein shake, cereal, English muffins. But did end up with a chick fil a sandwich at lunch and it was good!
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Oh girls. I wish we didn't all have to go through this all. Taste bud changes, nausea, trouble sleeping, hemorrhoids.... *big sigh* for everyone.
Agatha - I can also recommend this cookbook: What to Eat During Cancer Treatment And this one: Eating Well Through Cancer. I've made recipes out of both and liked them. I've only just had my second treatment today, but last week my taste buds seemed mostly normal. The first week after treatment wasn't good, but the second was fine.
Here's a question. My hair is definitely starting to come out. I had treatment 2 today, so I'm sure that will expidite it too. If I run my hand through my hair and tug just a little, I come away with a good dozen or so strands. I know it will start falling out more profusely. The plan was to have my husband shave my head when that happens. BUT...he is leaving tomorrow afternoon to go out of town until Fri. evening. I can have my mother-in-law or my hair gal shave my head, but I was hoping for it to be me and my husband. How long do you think I have before the mass exodus? Do you think I'll make it to Friday night?
I am wishing comforting thoughts to you all. It sounds like a lot of us are a little down and struggling today. Hang in there!!
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petey111 My hair has been shedding since Thursday. It’s definstely thin but I’m going to try and keep it a few more days. Lots is coming out now. I’m betting I’ll shave it soon
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Day 19 after my first AC. Started shedding massively when I showered this morning. Was surprised it held on till now since I expected it to start last Thursday when my scalp felt tingly while shampooing. My hair has always been baby-fine and I have my 2nd treatment this Thursday, so I'm sure I'll probably be shaving it by this weekend. Got a free wig a couple weeks ago thru a salon that works with the Look Good/Feel Better program, but even though she trimmed it up for me, it's still just too much hair. Looks like I'm wearing a football helmet. So I found a cute short little pixie style from Paula Young that looks much more like my natural style.
I just this past weekend have started feeling back to normal after my first chemo. Felt great the day after, but then I was physically, mentally & emotionally exhausted with little or no appetite for the next 10 days with an occasional day when I had a bit more energy. I was battling depression because I was just so sick of having to FORCE myself to do anything (get out of bed, eat, shower, get out of the house), but I've been on generic Prozac for about a week now & feel much more in control. Now that things are tasting normal again I'm enjoying eating much more. And thankfully I haven't had to deal with any nausea, constipation, diarrhea or mouth sores. So YAY for small victories.
Hoping the same will continue to hold true thru future treatments. 0 -
Agatha & Petey - thanks for the cookbook recommendations. I've been an insatiable recipe collector for many years. I just ordered all 3 from eBay for under $12!
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Thanks girls. Unless I wake up to mounds of hair, I'll probably try to wait until my husband gets back and do it this weekend.
Tabz - I'm glad you are getting something to help you out and feel better. And yay on the small victories. That's a great thing to focus on. Oh...and enjoy the cookbooks!!!
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good to see you rljess.. Hair vs vacuum.. Helped buy hair did come out much faster in the wash.. Fianlly got fed up and clippered it right to the head and regretted it for days.. Was rough and prickly. Even chemo hats got caught on the rough tiny hairs finally 2 weeks later hair has started to be not so prickly whats left of it anyway. Most of its gone.
Tmi time yet again. Dry vagina. Chapping skin ugh any advice? Ill be calling nurse if it gets any worse.
I start herceptin next treatment rljess but Herceptin was explained way differnent to me. Her2+ is a protein and Herceptin is protein blocker. I have 2 more chemos left and 1 year of herceptin was told cant get herceptin unless i get chemo beacuse of the human trials. The trials everyone was getting chemo. Anyway hugs hope everyone doing ok.
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Winnie I have had some external issues and my best remedy has been cortisone ointment. I apply some after i shower. Helps heal and protect any skin cracks. Reapply when you pee. And make sure you use ointment, not cream. You need more vaseline-like consistency here.
I havent had internal issues but I would suggest some plain old KY jelly. Just a fingertip and get on up there with it, the deeper the better. It'll spread itself around and gravity will work it out too. Don"t ask why I know this... LOL!
Speaking of hair.. before I forget, big TIP if you haven't cut your hair yet. Save some!! You can tape a chunk of hair onto a white piece off paper and a lot of wig places will help you find the right color match to the wigs you're thinking of buying. Make yourself a few of these. I wish I had known that earlier. Dark hair is very hard to tell apart from little swatch pics.
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Another night of good sleep. Yay! Today is my last day of feeling great, so I'm hoping to take full advantage of it. Tomorrow I tackle AC #4.
Tabz, enjoy the rest of your good week! There is light at the end of the tunnel.
Jennifer, so sorry about your brother. I can't imagine being a parent who loses a child. As crappy as BC is, I'm glad it's me and not my child. Hope you're sprung from isolation soon so that you can enjoy your kids. And the best advice I can give anyone who is battling any disease is to quit cruising the internet! It's not helping you. In fact, it's hurting you because it's increasing your anxiety level! Do yourself a favor and clear out your cookies and browsing history right now, so that you quit seeing ads and articles about breast cancer. And then, start trusting in your doctors, and yourself.
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Thanks Lisa for the support and advice. When I am not feeling well, I end up with too much time to wallow. I abandoned my hobbies and many daily activities when chemo started. Need to find those again. And not think about cancer especially TN cancer 24/7.
New SE last night. I had a freaking hot flash about 3 am. I woke up lightly sweaty (I don't sweat much anymore), hot,face flushed and heart beating faster. I took my temp as I am paranoid of getting a fever and I was fine. Had to turn on the overhead fan for a bit to go back to sleep. I am due for my period and I am usually very regular. But will see if chemopause is setting in.
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Hi, Jennifer. Glad you listened to Lisa. Nothing good can come from over-Googling TNBC. Trust me. Maybe you can pick up some on-the-couch hobbies :-)
And ah - the hot flashes. Now that I'm bald I can feel that my scalp sweats. :-) Super charming. I've become a temperature taker myself since I got that cough. It never goes up during my flashes either.
On a personal note, I just want to send you my warm thoughts about your brother. I lost one of my big brothers to his alcoholism. It's hard to lose a sibling and the complicated circumstances don't help.
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Agatha & Lisa- my husband came home tonight and told me a lady at work said, she heard about his wife and TN. She thought of me because she went through it herself in 2011 and just had her clear 6 year check up. Went through chemo, single MX and rads. She had the same surgeon as I do and loved her. I like my surgeon too. A mom of similar age kids as me. Really talks to me.
My husband works in a fairly small company with mainly women. Many have been through BC. Most just surgery and pills. Feels like a different ballgame when chemo is involved. But they have all been great wanting to give me things, bring meals, send cleaning lady to my home. But we try to hold them off until really need after surgery. So I can maintain some normal for now
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@scaligirl yep i used a lube for sensitive skin and helped the outter skin phew. Still dry and sore nut getting there. For inner dryness there is replenish a product designed for that. My chemo pharmacist recomended that. But thats not where my issue was... Thanks ladies. Just another SE no one warns uou about
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Has anyone found a good face moisturizer? I was just using my Clinique stuff, but my face is shedding like a snake skin. It's kind of gross.
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Hey, Petey - Funny you should ask. I started using this new one and it's been great! However, I still need to add a little extra ointment under my nose because I am constantly using Kleenex now. I got it from Sephora - it's not cheap but not ridiculous: Belif True Cream Moisturizing Bomb
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My whites are low. Maybe no chemo tomorrow. Retest in the morning 😞 Just want to stay on schedule.
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Sara, keep eating protein and greens to try to bolster that WBC. I completely understand why you want to stay on schedule. Good luck!
Petey, I alternate a 10% glycolic acid moisturizer with Aveeno Naturals or Olay. I've also noticed that the skin inside my ears is shedding like snake skin. So check your ears, ladies! I've been using Olay Body Lotion or Udderly Smooth on the rest of my body. Dryness is a constant concern. I bathe only every other day because the shower is so drying. It's easier to skip days now that I have no hair to get greasy.
Last AC Chemo is down the hatches! Woot! After lunch with my sister, came home and took a nap. Now I'm watching a few episodes of Game of Thrones. So a bit tired, even with the steroids, but no nausea. Crossing my fingers that I'll end this round of chemo on a positive note.
In my appt, the MO's Nurse Practitioner couldn't find my tumor, which confirms what I've been feeling. I asked if they'd be doing an ultrasound to confirm and she said no. I'll be getting another MRI before surgery in a few months, which will show everything in great detail, but before that they rely on feel. She said that she's very confident that my tumor has shrunk significantly already and that I should quit being a doubting Thomas. Also asked if they'd be doing a PET scan, ever, and she said no. That surprised me. So good news, even though I'd love to get another Ultrasound to confirm. Ah well, patience is not my virtue.
I'm ordered to get another echo next week to confirm that there was no heart damage from the Red Devil. There are times when I lay a certain way, and my heart protests. Not sure what that's all about.
I also asked if I could wean myself off steroids early and the MO suggested cutting down to half dose on the last one. I really need to keep on top of the nausea, but it's ultimately my call. She also said that my activity level is apparent, and that that has helped me stave off SEs. So even though I feel like a bowl of ice cream would be heavenly, instead I'll be pedaling for 25 minutes while watching the next episode of GOT.
So in 2 weeks, I start Taxol. For the first one, they give a whole host of medicines prior to the first one, including an anti-nausea and benadryl. After that, if I have no reactions, they will wean me off of those, and only have me take my "If needed" nausea medicine. I am SO looking forward to giving up the steroids and Neulasta. She reiterated that Taxol should be much easier than AC, so I'm holding her to her word! But she did emphasize that if I have ANY neuropathy, I'm to notify them immediately so that I don't suffer irreparable damage to my hands and feet. You can bet I'll be on top of that, because I use my hands every day for work.
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Hi Lisa,
Thanks for the update. Great news on the shrinkage. I am only about five days behind you in treatments so I have followed you closely to know what to expect next.
I get my last AC next Monday and I am so ready to be done with this. Very encouraging to hear that Taxol should be better.
You keep pedaling Lisa. "Winter is coming!"
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I will check those things out ladies! I use a lot of Aveeno too and did find a sample of Cliniques Moisture Surge Intense that I used after my shower, that seemed to help a bit for now. I have an Ulta and a Sephora nearby, so i can check that out too. I noticed my ears getting flaky too. How weird.
Sara - I'm sorry you are low. I can imagine how desperately you want to stay on schedule. Thinking positive thoughts for you.
Agatha - Congrats on the last AC chemo. I would totally want an ultrasound too, so I get that!! I don't want to do another of those stupid heart echoes, but I am sure that I will have to. wish they could use my port for it. Don't forget to ice during the Taxol! The gal I saw at treatment the other day put ice bags in oven mitts while she did hers. I thought that was a clever and cheap solution.
Hang in there gals!
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~Sara~ "Wonders never cease if we never cease to wonder." - Ziggy
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First time I've ever gotten home from chemo and napped...twice! I'm definitely feeling the cumulative effects, but very thankful that so far no nausea. Just fatigue and nausea. I'm hoping that I'll still be able to sleep through the night in between water and pee breaks.
Anyway, the MO's PA mentioned something interesting today. She said that they (meaning the international oncology community) will be re-classifying "stages" of breast cancer soon, as the method they are using is not aligning with the data they are receiving. Currently, they have three major criteria: tumor size, node involvement, and metastasis. While you can move up or down a level based on tumor grade or tumor type, it's not a major element of staging. In the new system, these two will take their proper place as key elements, while tumor size will only play a minor role, as they are discovering that large slow-growing tumors are not as dangerous as smaller, more aggressive tumors.
She said that this best thing about the new system is that it'll give patients better data. Currently, some Stage 0 and 1 people are actually declining chemo because they think that it's overkill. She also said that the new staging system will give a more accurate prognoses. She also predicted that survival rates for Stage 2 and 3 will actually improve over time because better data = better treatment plans.
She said that the major downside is that patients tend to do "research" on their own. And she included the air quotes, while I tried to look innocent. So after the new staging system comes out, new patients will have to translate their new stage to the old stage when reading older data, while older patients will have to translate to the new system to understand how the newest data might impact them.
Although she didn't say it, I believe under the new system, I'd be downgraded to a 1b or 2 because my tumor is a grade 3 triple negative. When pressed, she did say that my regimen is appropriate for my tumor type, and that my prognosis was still very, very good. Me? I honestly don't care what they stage my tumor at, because I don't plan for it to be around much longer.
Die, cancer, die!
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That is really interesting Lisa. I'll be very curious to hear more about it. My surgeon kept telling me that my micrometastasis in my one lymph node did not move me to a 2B, but when I got my Oncotype and treatment plans from the MO, they did list me as 2B. So even that little difference in opinion was interesting to me.
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Hi Ladies, I am new to this board. I had a right MX Sept. 12 and pathology said largest was 1.4 cm, no lymph node involvement, thank God. I started chemo with Taxol/Hercepton on October 12th. I will need 12 treatments of Taxol and then Hercepton for another 9 months every 3 weeks. I have had what I feel are great SE (if there is such a thing) compared to some of the posts on here. i would like your input on a few things. My hair started to shed pretty bad after about 2 weeks. I had shoulder length curly brown hair. At this point I have had to cut it to neck length and it is very very thin with my scalp showing in lots of places, so I am now wearing scarves/hats. My question for everyone is did you go ahead and shave your hair or did you hold onto it as long as you could till it all fell out?. To me for some reason afterr going through mx with tram reconstruction, this has been emotionally horrible. Not sure if it is all just hitting me now or what. Trying to stay positive but I think this has put me over the edge. I went to our local hospital to see about a wig and that was a terrible experience. They put a long blonde wig on me and said just imagine what it would look like in your color with a body wave... Really! Just imagine that your hair fell out lady, could you imagine! Anyway sorry to vent. Did you ladies get your wigs from local stores and did you get your same length hair or did you all go with shorter styles since the hair would take years to grow to that length? Any suggestions. My last question is did anybody experience severe nose bleeds and what did you try? I wake up every morning blowing blood from my nose and then it drys inside and it feels awful along with under my nose being chapped, peeling, repeat... Praying that everyone is staying strong through their journey.
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Counts are up to 2.3. Chemo is a go! Yay! The weird things we celebrate right??
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Was supposed to have AC chemo #2 this morning, but my WBC was a little low. So we've rescheduled for next Friday. But on the bright side, that means I'll actually have an appetite and be able to taste Thanksgiving dinner!
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