Chemo starting October 2017
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I'm sick and tired of being sick and tired. Had my last AC one week ago Monday and just now feel like I'm rejoining the living. Wednesday thru Sunday I had mild SE's - none of which were individually debilitating- but all combined-felt total yuck. Fatigue, nausea, achy, horrible metallic taste - sleeping more hours than I'm awake. Had to miss two Holiday events over the weekend. I have been existing on popsicles and White Peppermint M&Ms. Wow - where have these been all my life. They are delicious and really helped with the metallic taste. Feeling really low. I need to snap out of it. I have a long row to hoe. Hope you are all doing well. Would love to hear some happy stories
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hi simbobby, try something with ginger like ginger tea. or some chicken based soup with ginger on it and garlic and onion and maybe veggies like beans and carrots. ginger definitely helps keep metallic taste at bay.
or add some citrus juice to water. just not too much to trigger hyperacidity. a little bit to make the taste tolerable.
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Simbobby, you are in the same place that I was last week. One full week after #4 AC and I was sleeping 11-16 hours per day. Vacuuming left me breathless. Everything tasted awful, my digestive tract was in full riot, and it's not an exaggeration to say that I was at the lowest point in my life. I thank the cumulative effects of AC, which I'd tolerated reasonably well until then. And when you're feeling crappy physically, that affects you emotionally and spiritually. I cried a lot and felt sorry for myself a lot. It's like all the joy had been sucked out of my life.
I'm very happy to say that 5 days later, I'm feeling MUCH better. While I'm not ready to run a marathon, I have enough energy to stay up most of the day. My sense of taste is coming back slowly but surely and I'm only sleeping 8 hours per day. I still scare myself when I look in the mirror because I have really dark circles under my eyes, but all in all, I feel much better. So hang in there. You have to get through the next few days, and that chemo will finally be out of your system.
I start Taxol in 2 days. Here's hoping that it's kinder and gentler to us (not our tumors) than AC!
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Simbobby. Better days are coming. Hang in there!! I know on the bad days it doesn’t feel like good days could possibly around the corner. I’ve had some amazing days this weekend. I am so grateful! It’s hard to believe that in a week after FEC 3 I’ll be half done. I’m starting to think about the next steps; radiation, tamoxifen 😳 and profalactic left breast removal and hysterectomy.
My daughter shows horses and we booked in to show at the Winter Welcome at the end of February. I consider this a victory in my mental health. The finish line for chemo is Feb 8th. So I’m thinking of this show as an oppprtunity to celebrate. Hopefully I don’t break an ankle on the way out the door this time!!
Love to you all,
Sara
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Hello, ladies. I'm with you on the cumulative effects of the 4 AC's. Folding a heavy blanket leaves me out of breath!
Today I'm making a last minute trip down to Philadelphia for a few days to stay with a friend. She's newly separated from her husband and came back from Thanksgiving feeling especially lonely and anxious. It feels really good to be able to do something right now to help someone else! I feel like I've been on the receiving end of so much help since my diagnosis.
It will also be good for me to do something else besides stress about starting Taxol and my surgeon consult.
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Feeling the cumulative AC #4 also. Yesterday was just awful. Sleeping or in bed pretty much most of the day. Which is never good for me mentally/emotionally. After everyone went to bed. I laid on the couch with nothing on but the christmas tree lights on, curled up in this sherpa cuddle duds blanket I love. Very relaxing.
The NP says taxol should be easier, I sure hope so! Even now, trying to push myself to take a shower! I have zero energy. I am struggling too with the constant nose running. NP says it can be a SE of chemo too and not so much a cold.
Tomorrow morning is Echo and tomorrow afternoon is ultrasound. I will probably be really annoying with questions during the ultrasound because I want to see what is happening inside my breast. The first ultrasound that lead to the biopsy to be diagnosed, I didn't really understand what I saw. I saw a black blob and knew it didn't look good because it wasn't round like a cyst.
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So sorry to hear that everyone is really feeling the effects of AC. I am also down in the dumps and feeling fatigue. I had AC #3 last Monday and still feel it and this is my off week. Next Monday is my last AC and can't wait for it to be over! Then onto Taxol hoping we all have a better time with those side effects. Good luck this week to everyone! 🙏
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So sorry everyone is having cumulative SE's, but it is comforting to know I am not the only one. Totally missed all Thanksgiving get-together s but had no appetite or energy to go anywhere. I got out for a short walk on Friday, but could barely make it over 1/2 mile. Went again yesterday and made it 2 miles, but it was hard. I am like everyone else after #4, feel weak just doing laundry or vacuuming. Have to do everything in multi-steps. Today I had more energy but still taking Zofran, went to work for 4 hours and it was good to get out of the house and get some things caught up. I am taking tomorrow off and walking instead, seems I do not have the energy to do both. Hope to have enough energy to get some projects done this weekend, prior to next Chemo on Tuesday.
Thank you everyone for keeping us informed.
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hi ladies. To everyone who felt awful after last AC, hang in there. I started DD Taxol 3 weeks ago. It really is easier than AC in that I had no nausea. I felt very tired and got bad bone pain that lasted about 24 hours after the first dose, but less bone pain after the second. I'm not sure about effects of weekly taxol, but for the escape from nausea is fantastic. I'm still tired, still get insomnia etc but being able to eat is such a plus!!!
Hope everyone moving onto it finds it easier.
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Thanks for the positive words, Stage2ire. I'm starting Taxol tomorrow and dreading the thought of starting a new chemo with all its new SEs, yet at the same time very anxious to keep this ball rolling! It helps to hear from people who've walked the walk. Good luck on your last 2 treatments.
Question: Have you met with your surgeon yet? I haven't seen mine since the beginning and wondered when I'd start consulting with her. I have 3 months left of chemotherapy still but would love to start getting information for this important decision.
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Lisa- I meet with my surgeon on Friday and I have a appt with plastic surgeon next week. Although I might reschedule the PS one after meeting with BS. Not sure there is much he (PS) can tell me right now.
These appointments were set up before I started chemo. And I am in chemo till March 20th or so.
I still debate between getting implants or going flat. I don't know how I will be monitored with implants. Worry that a new lump can grow underneath them? But don't know if going flat, I could handle mentally. Flaps are not done in my area, and I don't want to travel 3 1/2 hours for procedure and follow ups
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Jennifer522 I had surgery pre chemo and chose flat. If you want to chat you could message me. I couldn’t be happier with my decision and I will go and have my healthy breast removed post radiation.
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Stage2ire - thanks for the info about your taxol. I too will be starting on Weds. 11/29 and hoping to kick the nausea. Just a couple questions. Are you on a weekly or biweekly schedule? Can you you judge when your worst day are like with AC? I will look forward to following you and LisaRXCincinnatti. The unknown is always so stressful. Thank you for your encouragement.
It seems many of us hit some low days this week but we have to remind each other that we can get through this and in a day or two we will be feeling better and become inspired to keep fighting. One thing this experience has taught me to be VERY thankful for good days
Today in Ohio it is going to be sunny and hit the 60s so I am looking forward to getting out for some fresh air and sunshine. Hope my Oct girls have a wonderful week0 -
Joyseeker - Congrats on making big plans for the horse show in February. All mental health victories are huge these days for all of us! And yes, be care on the ice.
Jennifer522 - I hope your echo and ultrasound go well - or went well if they are today :-) Is the echo to check for any effects that AC may have had on your heart? I assume that the ultrasound is to see how your tumor responded to the AC. I don't think I'm having either test. Hopefully they will be reassuring for you.
I meet again with my surgeon on Friday as well. I hope you get answers to all your questions. I have a whole list for mine. I'm hoping my tumor has shrunk enough for lumpectomy to be an option. This will be a surprise to her since in my first two consults early on I was leaning toward BMX.
LisaRx - Good luck on Taxol #1 tomorrow! I'll be right behind you on Friday.
Hope today is one of the good days for everyone!
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dkk, I get taxol every 2 weeks. Its a double dose, but given biweekly. Yes, Ive found just like AC I can judge the worst days. Ive found by day 5 I'm feeling pretty much back to normal, just tired. I'm always tired but just try get on with it. I do find days 5-8 tend to be an emotional slump and insomnia hits but because I don't feel sick and food tastes normal it's easier tolerate. Tbh, I find anything easier face without that yucky taste in my mouth and queasy tummy!!!
Ive small kids and I think me not looking queasy all the time is really helping them!
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Thanks for your input, ladies. I'll have to ask tomorrow why I haven't met with a PS or my surgeon again yet.
I go back and forth, but lately I'm back to having a double mastectomy. I'm still weighing whether to reconstruct or not. Part of me says to just stay flat because it's far less trauma to my already traumatized body. But I'm still quite a bit overweight), and I'm not sure how demoralizing it'll be to have my stomach being the most prominent thing on my front side. I'm working on losing weight and getting into shape, but most of the flat ladies that I see are fit and thin. What appeals to me about going flat is the much quicker recovery time, the peace of mind of having all the breast tissue gone (so less chance of local recurrence), and not having a foreign object inserted into my body. I've been small chested my whole life and never ever considered implants. I hate that I might have them as a result of cancer.
On the other hand, most of the women I've talked to have opted for reconstruction and not one of them has said she regrets it. Even the woman who has had complication after complication said she'd opt for flat if she had to do it over again. And maybe, psychologically, it'll be as bad as being bald. And I hate, hate, hate being bald.
The downside of reconstruction is the longer recovery time, the need for multiple procedures/operations, the implants are reportedly cold, the need to get an MRI every now and then to confirm that they aren't leaking, and the expander is really uncomfortable.
Decisions, decisions.
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Echo done this morning. Tech said everything looked fine. It was a quick 10 minute appt, not like my first echo. It was to check what the red devil is doing to heart. But he did say if problems arise, it's usually within the next 6 months. So another one scheduled in 6 months.
Ultrasound done. Just a spot ultrasound on the tumor. Didn't look around or at nodes. It seems to have shrunk by about 50% from the measurements I saw on screen. But they gave me a volume result which I didn't quite understand. That was not on my original ultrasound. Said the volume dropped from 5.6 to 0.3, so that sounds good but I don't know what it means. Measurements were all around 1 to 1.2cm (originally 1.9 to 2.6 cm). Of course was hoping nothing could be found or mm especially with feeling so crappy lately. I find it hard to judge and do breast self exams because it all feels lumpy. BS called them classic fibrocystic breasts.
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Hi ladies, just checking in after the long holiday weekend. I had a follow up today with the NP at my chemo center and all's good for my last chemo next monday. We started talking about what's next and it looks like I'll see my radiologist just after new year's and hopefully start radiation the 2nd week of January. It's hard to imagine life without chemo SEs but I am so totally looking forward to it.
I got my second wig today - pic below. It looks a lot like the other one - same color and bangs, but is about 3 inches longer. I'm seriously not sure how much I will wear these wigs though. I wore the other one for about 5-6 hours on Thanksgiving and omg I just about died in the first hour from the overwhelming heat. I was sweating so bad on the drive to my folks' house I had four air conditioning vents blowing on me and it was only like 65F outside. Thank god my parents house runs cold or I think I would have had to abandon it. Has anyone worn theirs for very long? Maybe I'm just a wimp lol. I'm going with my daughter to see a friend's daughter be Clara in a local Nutcracker Ballet performance this Saturday and was hugely relieved to find it is only going to be 2 hours.
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Scaligirl. You look amazing!! I haven’t gotten wig courage yet. Is still have “bangs” so I can fake it with a toque. I’m sure those will fall out soon. I’m pretty bald everywhere else
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Round 3 of AC (DD bi-weekly) was last Wed. and though I could eat well on Thursday, the last couple of days are really dragging and I barely want to get out of bed. I feel seasick much of the time. Eating makes bubbles that hurt. And now I feel a sore throat coming on. Sleep feels near impossible - I keep wanting to stay away from the lorazepam, though.
It seems easier this time to hang in there through the emotional issues than it was for Round 2 - thanks to you all sharing similar experiences and to knowing that it goes away. Over the weekend I was really crabby and angry for a couple of days. Despair doesn't feel as dark, but my lack of interest in doing "normal" things and even talking to anyone for more than 5 minutes is still in full force. Gotta remind myself.... my cells feel alien because I'm literally poisoning my body right now. (All for good reason.) Yes. I feel poisoned.
Simbobby - I totally relate to what you're feeling. I had AC #3 last Wednesday and I'm so dragging. You wrote exactly what I could be saying - not one SE making me useless, but all of them a little bit combined keeping from joining the rest of the world. I'm really looking forward to the several days before my next round when I start to feel like myself again. That was such an amazing surprise last round.
Scaligirl - what a great wig. You look fabulous.
Stage2ire - It's good to hear that the Taxol isn't as bad as the AC.
DKK & LisaRx - wishing you an easy time with the Taxol. Will be following you closely. Are you weekly for 12 weeks? I will be. First one is Dec. 21.
Jennifer - good to hear about your echo. My results came today - normal. I didn't realize that it would be 6 months of needing to monitor the effects of chemo on our hearts. Here's to wishing us all healthy hearts in addition to shrinking tumors and eradicated cancer cells, good white blood cell counts and healthy immune systems, .
I am SO not looking forward to my last AC (Thurs Dec. 7) - except that I am SO looking forward to having it behind me! I am cheering everyone on for getting through this week and for hanging in there for your next treatment. This is not easy, but it's so much better having this sisterhood to lean on.
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scaligirl girl, you look fab in your wig, very natural. I wear my wig to work so 8 1/2 hours. I have cotton wig liners and only the last day at work I felt a little sweaty. I initially started wearing it a few hours a day and increased. I haven't tried but you can soak the wig liner in cool water for a hot day. It is definitely hotter than my own hair so I adjust clothing to suit. Good luck
DKK, I find 2 days after AC difficult sleeping from steroids, so I take it easy the next day then day 5 tiring. More likely constipation in first few days from anti nausea drugs so I preempt with meds and diet. Starting day before chemo, just few a few days. Hope that help
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Lisa - I ordered that cap with hair from Headcovers Unlimited. I got a email last night, they were out of the color I chose. I picked another color but so disappointed as I was planning on wearing on Saturday for Breakfast with Santa with my daughter. I struggle with the expensive wig I bought and was looking for easier options.The no hair is getting to me lately, more than it ever has. I actually dreamed last night about having my hair back. I took a whole ativan to get some good sleep last night, I have never taken a whole pill (only half) before. But I was desperate to sleep through the night. And I did, other than 1am potty break.
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Hello October friends,
I wrapped up AC last week. Preparing for the start of Taxol. MO says it will be easier to manage, and I pray she is right. AC was tough and dose #3 and #4 were especially tough. Fatigue all the time. Mouth sores. I had no issues with my mouth or teeth before all of this so it’s been really upsetting. There is a prescription for that SE or this SE. 😟 Everything tastes weird and at times I feel like I’m floating on a cloud watching things happen— seriously that’s how fuzzy my mind has been at times. By day 5 I’m back to myself.
I’ve worked through AC and was able to manage but I wont say it hasn’t been challenging— emotionally more than physically but it has been doable. This BC situation continues to teach me about myself. I am stronger than I knew and that is what I will remind myself when I start feeling down about anything. We all have come so far so since the start of this thread. I guess we need to realize we are stronger than any of us could have imagined. I guess I will just have to wait and see how I react to Taxol now.
Still not used to my bald head. People say all sorts of interesting things in attempts do make me feel better. However often they come off sounding thoughtless. I said something about missing my hair and I actually had someone say “I wish I was bald...it’s so much easier right...” Really? Anyway.... as Holly Golightly might say, “the mind reels”.
Wishing you all the best as we continue forward.
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This lovely lady keeps me walking. Sunshine and fresh air is really the best medicine 💜
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Scaligirl - That wig looks fantastic! I have the same problem with my wig being too hot, especially with my lovely hot flashes. The most I've managed is 6 hours. It's a drag because I really like the way my wig looks, it's just too hot to wear for a full day.
Voilalia - Hang in there. You're in the homestretch toward the end of AC. Hopefully Taxol will be kinder to us all.
EightOutof8 - My hat's off (or wig, or head wrap) to you for working through AC. I really admire you for that. I tried and couldn't do it. The bald thing is still weird for me, too. I go bald at home and have a jolt of shock when I walk by a mirror and see my reflection. Luckily I don't have too many of them!
Joyseeker - What a beauty! I actually thought of you last night when I was watching a new series on Netflix. It's about the Old West and there beautiful scenes with wild horses, the relationship between a man and horse when the man is able to ride the horse for the first time, a timid boy learning to ride, etc. It's called "Godless" and it stars Sam Waterston, Jeff Daniels and an actress from Downtown Abbey whose name I can't remember. P.S. the bangs are so cute. Totally looks like you still have all your hair!
I'm physically feeling good but have been having a rough patch emotionally. In my head I keep getting hung up on my triple-negative status and not focusing on everything I'm going to do beat this. I had a moment last night with my best friend when she asked about planning a vacation together in June. I have no idea what stage of my treatment I'll be in at that time so I can't plan anything. I'm sure she was just disappointed but sounded to me at the time that she was pissy that I was ruining her plans for fun. She stupidly said "well once they cut it out isn't it just done?" That sent me on a mini-rant about people not getting it, what a long and changeable process it is, how the first few years are really scary for people with triple-negative cancer, etc. It just depressed me that if she could act like that so what can I expect from the rest of my friends, family and co-workers.
I am so grateful for all of you on this thread. It feels so good to have you to talk to.
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Agatha- one of my TN sisters I understand. I try to repeat this to myself when I get low "Most women with triple-negative breast cancer never have a metastatic recurrence or a new cancer". Taken from the TNBC foundation. I actually had to stop following some TN groups on facebook, to block the bad info. While it was great hearing about 5, 10, 15 year survivors. I hate to think of my life with a timeline of years left. You have to remember those that are doing well, rarely post. They are out living their lives. Most who post are in need of support and are reaching out.
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Jennifer and Agatha. I personally know of a 12 yearTN many many nodes out living her life survivor. I also stopped following everything but this thread. It was not good for my mental health. A good piece of advice I have been given is “stay in neutral and don't borrow trouble."
Love to you ladies....
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I'm scheduled for AC # 3 this Friday. With my first treatment, I was in bed for four days. With my second one, it was a week before a bounced back. Not sure what's in store this round, but I'm both dreading it and needing it.
The good news is that I can feel that my tumor is much smaller, and it's hard to find now, honestly. I'll go through anything to make that happen.
Like some of the other posters here, things have been hard emotionally. I've cried a lot this week over big things and little things. I just cry a lot.
I'm trying to cope with this paralyzing fear of recurrence and mets. Cough -- it's in my lungs. Headache -- brain. Arm itches -- liver. It's overwhelming.
Agatha, I'm hung up on the TN status, too. Must.Stop.Googling.
I went for a Reiki appointment today. Can't say I really believe it has a healing component, but it was very relaxing and helped with my anxiety. Trying to get ready for Friday!
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Well, I'm back from my 1st of 12 Taxol treatments. Here's the run down. I met with my NP and she asked about my general health and felt again for the lump. Once again, no sign of it. Woot! She also assured me that the lumps that I was feeling elsewhere in the same breast were normal breast tissue. She said that she had a LOT of experience in feeling for tumors and that I needed to trust her judgment on this. She assured me that there weren't "super tumors" growing in my breast even after being deluged with powerful chemo. So no ultrasound for me, and I'm going to put my trust in her.
After that, they took my vitals and drew blood and sent it off for the lab. That took about an hour and a half. Snooooooze.
Turns out I'm slightly anemic and had low WBC and RBC, but not enough to stop me from getting treatment. But I think it shows that I need to eat more veggies and protein. Recently, I've been eating more and more carbs and I need to stop with the comfort food and get back to nutrition. I AM fighting cancer, after all.
Anyway, about 45 minutes before the Taxol arrived, I was given 5 pills: 3 Dexamethasone (steroid), Benadryl, and Pepcid. I was also advised by my NP that I could and should start taking Prilosec or Pepcid daily since I was suffering from acid reflux. I think I'll start doing that because even though I've felt very good in the last few days, I do have a lot of acid churning in my gut, so there's no reason I shouldn't try and alleviate that.
Once the infusion started, I took out frozen booties and put them on my feet. Then I took out my frozen bags of peas and put them and my hands in my coat pocket. The ice packs that came with the booties didn't last 15 minutes before they were melted, so I switched it out and put my feet on a large ice mat. Next time, I'll use 2 ice mats and try to cover the tops of my feet with them, too. I switched out the peas after 30 minutes, but need to remember to put ice in the cooler to keep them colder. The icing was slightly uncomfortable as my nail beds are already kind of achy, but if it stops neuropathy, it'll be totally worth it.
I'm happy tor report that I experienced no nausea or discomfort at all. In fact, the only slight bit of pain I felt was when they stuck into my port. My SIL and I went to lunch afterwards, and I feel fine right now. I'm also glad that tomorrow I don't take meds, and no Neulasta, so I have a feeling that tomorrow I'll experience my normal "let down cause I'm off steroid" day, and then I'm hoping that'll be it. I plan on drinking and eating a lot, too. And I'm also going to walk the mile to my club tonight for Ladies Euchre so that I can hopefully get this drug out of my system soon.
I asked the nurse whether she'd ever seen anyone ever have a severe reaction to Taxol and she said "Once in a blue moon." In fact, the week prior, someone started Taxol and she turned as red as a tomato. They had to stop the infusion. But she said that it's very rare, and I imagine she sees dozens of BC patients each day.
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Re TN BC: I, too, freaked out a bit when I learned what "triple negative" meant. Initially, I assumed that triple negative was a good thing because you want your cancer screenings to be negative, right? In any event, although it is true that TN is the "worst" type of tumor to get, TN does tend to respond to chemo much better than other types because of their nature. TN tumors tend to be more aggressive and divide more quickly than others. Both A/C and Taxol target quickly dividing cells. so our response rate (e.g. shrinking of the tumor) is actually higher than patients with other tumor types. So woot for that. Kinda makes up for the hair loss.
Keep this in mind: Although TN survival rates are lower than other breast cancers, we ALL still have excellent 5-year survival rates, and it keeps improving every year thanks to early detection. Fact: Breast cancer, INCLUDING TN, has one of the highest survival rates of all cancers, beaten only by a handful of cancers such as testicular cancer. A huge reason is because our body part is non-essential. We are so lucky to have the option of lumpectomy or total removal of our breasts. People with pancreatic, esophogeal, or liver cancer do not have this option. They would LOVE to have our survival rates.
Also remember, there is compelling evidence that our overall health is an important component in battling new AND recurring tumors. While we cannot do a thing about our age or our tumor type or our stage, we CAN take steps to improve our health. Exercise, healthy weight, nutrition, and removing stress from our lives are all things we CAN work on right now. We can choose a salad over fries. We can get up and move more. We can quit cruising the internet and agonizing over numbers that only tell half the picture.
And finally, remember that there are clinical trials in the works right now, including a TN vaccination which could be a godsend to us. Medicine is improving every day, and pharmaceuticals are being refined every day. I really do believe that the strides they are making in staving of debilitating SEs, such as nausea, are helping to improve survival rates. While most of us have experienced days where we wanted to crawl under a rock, I daresay most of us haven't wanted to crawl under a rock and die rather than continue treatment. Wanting to fight, wanting to LIVE is a key component of survival that cannot be measured.
Peace to all. I'm off to kick butt in Euchre.
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