Chemo starting October 2017
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My thumb nails are turning purple! Somehow this is worse for me than hair loss:( At the same time, I guess that means the chemo is working and killing cells. I have one more round of AC and then start 4 rounds of taxol. Has anyone used the hand/foot mitts during taxol? I'm not vain and don't actually care about losing my nails but am concerned about taxol and neuropathy. Thanks!!
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hi everyone,
i've been reading for a while now. coming in from the september thread. currently on EC but starting weekly taxol + carboplatin next week.
i hope you don't mind if i hang out here.
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I'll ask about Benadryl tomorrow, Petey.
Paulette, I hope the next 5 weeks flies by for all of us! Just think that by the New Year, you'll be done and on your way to a complete recovery. When you say that the recovery period is too short, do you mean that you're tired all the time or that having weekly treatments doesn't allow you to live normally for a week? Also, do you get Neulasta with Taxol? Steroids?
VL22, I'm going to ask if I should take a B complex vitamin during Taxol.
yes I'm a TN girl, however I knew that before starting, so they decided to do chemo first and surgery last. There is no evidence of lymph node involvement from the original ultrasound, and the pre-chemo MRI indicated no other tumors in either breast, but I guess I won't know for sure until after surgery in March. I'm not even completely certain that my tumors are shrinking at this point, because I only have my and the NP's opinion from poking around. I'd sure love an ultrasound to confirm, but I realize that insurance probably wouldn't pay for it and that one of my lessons in all this is that I need to learn more patience and trust.
Q: I see that you had a lumpectomy. What was your thoughts on choosing that over mastectomy? To be honest, I hadn't even considered a lumpectomy after the TN diagnosis. However, now I'm reading that the risk of recurrence with TN is pretty much the same as with other BCs. And now I'm wondering if a lumpectomy + radiation would mean far less trauma to my already overtaxed body, and actually lead to a more favorable outcome.
So much to think about!
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tri-lady 7 - my thumb nails are turning slightly purple after round 3 of AC. Not falling off at all but definitely are discolored. I'm thinking of icing for my last round of AC and definitely for my 4 rounds of taxol. My MO doesn't believe in ice but I didn't ice for round one of AC and had horrific mouth sores. Iced the last 2 rounds of AC and have no sores. So my fingers and toes will get an ice bath too from now on:)
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Jeng, I ice my hands and feet during taxol, I don’t want to lose any nails and worry sick about neuropathy. So far my nails look fine, right thumb has a little discolor. I have been using OPI nail envy to strength my nail.
Lisa -I’m doing weekly taxol so I don’t have get Neulasta, if you do DD taxol, I think you will get Neulast. First four weeks of taxol for me was fine, I have more good days than bad. Once it got to #5, my body got fatigue, I need afternoon nap all the time.
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Hello ladies,
Just finished my 3rd AC and I think it really wiped me out more than the first two. As usual suffered from severe nausea. But this time went in for an additional infusion of amends and fluids. This did help not only with nausea but also with the constipation. I was a water only girl, no pop and now I can't stand the metal taste and not getting my fluids like I should. Searching for something I can tolerate.
Day 5 started feeling normal but hit with such depression and this is not like me. Even though my energy level is low, I am getting my butt out of the house today.
Just a couple tips for those who also suffer from nausea and are just starting.
- Take meds before you feel sick, start the day before chemo and continue around the clock
- Set the timer on your phone for your next dose, especially through the night (hard to get rid of severe nausea once you have it; all about preventing it!!!
- Keep something on your stomach every couple hours, even if it is something little. (Chicken noodle soup, ritz crackers and peanut butter were my favs.)
Always sooooo thankful to start feeling normal again. My biggest tip....... Take full advantage of your good days! Do something for yourself that brings you joy thanks for all your support girls we can do this!0 -
Lisa - my TN tumor wasn't discovered until the actual lumpectomy- it was behind an ER+ tumor - never seen on mammo, US or MRI! I was obviously devastated and immediately wondered if I should have gotten a masectomy and considered getting one after chemo. However, after talking with my doctors, I'm happy with my choice. I completely understand why people go with theMX, but for me this is the right choice.
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VL, your turmor didn’t show up on MRI, that’s scary. Did you have it remove during your surgery?
DKK - put some lemon or lime in your water, that should take the metal taste away. Yes I learned always have something in the stomach helps nausea. Also I found Ativan really good for nausea at night. I try to do all my appointments or shopping on my good days. Also enjoy the good days while you can.
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I’m so grateful that fatigue is marginally better today. I did have really watery eyes (not sure who asked) this round. So much so I had large clumps of sleep in my eyes in the morning. I’m wondering if any of you just feel “off”. Like you drank too much wine. Lol. My head is tippy and woozy but otherwise I’m good. This weak feeling isn’t fun.
Oncology massage tomorrow and Vitamin C infusion on Thursday. Hopefully I’m feeling better by the weekend.
Oh. And the cravings!! McDonalds cheeeburger. Wtf? Never would have eaten that pre breast cancer. Today I want chicken fingers. Salt!! Yes please! So odd.....
I’ve signed off all other boards/support groups. I was feeling so down with wha I was reading. You gals are my only group. You’re actually helpful 💜
Sara
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Starting to get my energy back today (chemo #2-day 8). And some of you ladies deal with the big D. Well I went the opposite way in the last 3 days. Never had issues before even when I was pregnant or taking oxy after dental surgeries.
My mom has been here the last month and she is going home tomorrow until I start taxol in December. Two more AC to go. I am really sad about it. It's been nice having the constant company and a back up taking care of my daughter. I am 45 and still need my mommy.
I am a TN and my MO is recommending a bi lateral mastectomy. I am doing it. Scared but doing it. I have what is thought to be a benign calcifications in the other breast. These were just discovered in January and I was getting mammos every 6 months for them. Never biopsied as they were stable.Never saw anything in the breast where the cancer actually is until I found the lump. It's still something that baffles me. You can see microcalcifications that are a size of a grain of salt but never saw a cancer lump growing in the other breast.
And I am down over 20 lbs since early September when this all started. Not that I didn't and don't need to lose 30 lbs more or so.
Joyseeker- yes the tipsy feeling is pretty common for me now. Not a lot of nausea just lightheaded. Drinking water helps and taking a Ativan if I need to pull myself together
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Thx for your input, VL. There really is no "right" path for everyone, is there? I wonder if they'll let me get a lumpectomy at first, let my body heal for awhile, and then do a prophylactic double mastectomy when my poor body has recovered.
Sara, I'm glad that the fatigue is slowly evaporating. I didn't connect the dots at first, but now I see that you also had a mastectomy 6 weeks ago! A lot of us haven't had surgery yet, so we came into chemo much stronger than those who've gone through a MX. It makes perfect sense that you're feeling so tired! And, yes, I know exactly the "off" feeling you're describing! It's how I feel most of the time, even on my good days. I don't know if it's an after-effect of the chemo, lack of quality sleep, or some sort of PTSD. And it's funny because throughout this whole treatment, I've been craving a Wendy's Single, fries, and a Coke which is, or rather WAS, my go-to "hangover" meal. So I can definitely relate to the hangover feeling.
"Whose wine? What wine? Where the hell did I dine?"
(I'm aging myself, aren't I?)
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Petey and Joyseeke S)r, looks like we're on the same schedule, though Petey, you've got Neulasta (once/week? or only on chemo days? -- oh, looks like you've got something attached?) and I have Granix which does the same thing but I have to have shots 3x a week. Ugh. The first one seemed to go fine. Yesterday was my 2nd one, I forgot to take Tylenol a 1/2 hour before, and last night not only did my menstrual cycle kick in early with pain (not much flow though), but the aching in my shoulders, hips, rib cage, elbows, ankles, etc... just took me out. Tylenol dulled it just enough so I could fall asleep finally with a hot pad on my gut and I dreamed about pain, but I slept! Didn't go into work today. Yesterday was decent rocking ship in the morning, laid down for 45 mins (we have a space for meditation/yoga screened off a shared office room), and seem to rebound for the afternoon and early evening. I hit a depressive bump, though, coming out of the Cancer Center after the Granix shot. The reality hit me that I have cancer. I've accepted it and am doing what I have to do, but yesterday it was like I couldn't believe it!
I sucked on ice chips during the Adriamycin, too. I will need to remind myself each time - just like the Tylenol before the shots.
Looks like from VL22 and Paulette that the Taxol experience could be just as varied as we're seeing for AC. While I'm not excited for it, I'm glad the countdown has finally begun.
Joyseeker, I hear you on the feeling so tired. I'm so ready to put these aching bones to bed... I really should go for a walk instead. Just. Can't. Motivate.
Everyone, good luck to all on your next rounds, getting enough rest, tackling the diarrhea and constipation, and just feeling strong!
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Paulette - yes, the BS saw it and took it out. Not knowing it was there obviously took neo adjuvant chemo off the table, which upset me at first. But then I thought about it and I realized that this is all upsetting. If I had chemo before surgery and the tumor didn't respond 100%, I'd be fretting about that
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Sara - I only go to the threads I picked now, such as praying threads and several chemo threads. Once I got myself all stressed out by reading and I couldn’t able to sleep.
VL - most important you got all of the tumors. 🙏🙏🙏
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There was a lot to catch up on today!
I'm throwing this out there as something I like - https://www.truelemon.com/ - It's crystalized citrus (orange, lemon, or lime) that you can sprinkle into your water or whatever. It seems to work well for me. I've also started using a protein drink (Vanilla Ice Cream flavor from Max Muscle) and Carnation Instant Breakfast. It's not water, but it's liquid that gives me a few extra nutrients.
Sara (Joyseeker) - It was me with the watery eyes and I felt woozy too after my first one. I haven't had cravings yet though. I haven't had much of an appetite in general.
I'm worried about my nails. My doctor already mentioned keeping finger in ice during taxol, but not during AC. Logistically, I'm not sure how bags of ice would work on my toes, but we'll figure it out I guess. How long are taxol infusions for you guys?
My Nulasta Onpro pack went off just fine yesterday. (I assume the needle doesn't retract back into the device for everyone is that correct? I was a tad worried I should have waited longer to see if the needle goes back in.) I don't feel 100% this morning, but I don't feel awful, so that's good so far.
I've started wearing my fitbit to monitor my HR. I think the steroids are making my resting heart rate a little high. Probably not high enough to really be concerned about, but I can certainly feel it. I need to ask them about that the next time I go.
The weather decided to change here pretty good yesterday. Cold and it even flurried. Happy Halloween! My husband took my son to his best friend's house to trick or treat. I got to stay home up in my bed watching tv with all the lights off. I didn't want to hand out candy. Only had one person knock. It was early enough in the night that they might not have been able to really tell our lights were off. This morning it's sleeting or snowing or something out there. We have definitely changed seasons!
I'm a little sad that I will be going through AC during the holidays. They are my favorite time of year and I love doing stuff for people and seeing all my friends and family. But it will have to be much more low key this year probably. And yes Jennifer - I can totally relate to still needing your mommy! I wish mine was still around to come visit and help! I have a great mother-in-law and step-mother though!
I think it's time to try and force myself to eat something. My stomach is making a ton of noise, so maybe if I eat, that will get moving too.
Hang in there ladies!
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I'm on akenzyo, it's replacing apprepitant as it works on different pathways to prevent nausea and lasts up to 7 rather than 5 days. Still causes constipation so get and stay on top of that. I'm going to double my doses of constipation drugs on round 2. Hope it works for yo
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WTF my period one week early? No wonder I’ve been an emotional wreck. Maybe this will be my last. Here’s hoping....
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Hi, everyone. Haven't been on in a while.
I've had a really bad head cold and cough all week. It sucks. I suggest everyone try their darnedest not to catch a cold while we're doing chemo! :-) No fever so I didn't call the oncologist - I'm hoping that it won't interfere with Friday's infusion, AC#3.
I also have an appointment with my surgeon on Friday. Lately I've been really wrestling with my thoughts about what sort of surgery I should opt for. My tumor is large so I don't think that a lumpectomy is an option, even if the chemo shrinks it. When I was first diagnosed I wanted a BMX with no reconstruction. As I've researched and learned more and lived with the diagnosis I've changed my mind, deciding against the BMX. Now I have to figure out what sort of reconstruction, if any, is right for me. One big concern is healing time. I live alone and don't know yet what I'm going to do immediately after surgery re: help. Reconstruction may just not be a good option given that factor.
Have all of you neoadj. girls made your final decisions on surgery yet?
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Agatha-I have been thinking of you since I haven't seen you post in a while. Sorry you have been sick. One bad thing about chemo this time of year, so many sick people. And those who refuse to get flu shots really make me nervous.
I still struggle with surgery. Overwelhmed! I want to do as few as possible. I have never had a surgery other than dental. It will be March before I am done with chemo. So a lot of thinking to do. I meet with the breast surgeon again on December 1st and plastic surgeon a few days later to keep talking.
Petey- I wear a Fitbit Hr charge 2. I normally have a low resting HR (57-61 average). I have noticed some nights my HR gets scary low (in the upper 40's) and sometimes will be beating faster than normal (80's-90's fat burning zone) when I sitting doing nothing. But I am wondering if the faster is a response to caffeine. It's usually after lunch and I have been drinking tea or eating a piece or two of Halloween candy. I need to cut those and see how I respond. As for the low, it was normal for me to get into the low 50s at night but need to see if their is a pattern for the 40's. I saw a cardio doctor about 4 year so ago for heart palpitations. My daughter was 10 months, nursing and never slept more than a few hours at a time. He said i was fine, just needed to sleep and lower my BP. Once I did, they stopped
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My BP has been an issue for several years now. Still not great. I didn't even have my caffeine today. And it's been around 85-106 just from sitting and making lunch and going upstairs to change. Nothing strenuous. So, I'll have to ask about that.
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Jennifer - I had never been under anesthesia before my lumpectomy and I was extremely nervous. The nurses, surgeon etc were all acting like they'd never seen anyone who had never been under before. Keep asking me if I was sure. Ahhhh..yes. I had to go in for a re excision and felt like a pro.
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AC # 3 is done! I met with the MO as well. He did a thorough manual evaluation of my right breast and said that he was having a hard time locating my tumor. "So I'd say we have pretty compelling evidence that the chemo is working." Yipppee! Die, cancer, die!
My cousin drove me to my appointment, even though I'm fine to drive by myself, and we went for lunch and shopping afterward. In the car on the way home, she said, "Admit it. You're faking this and there's nothing wrong with you." So I showed her my bald head. She said, "Well, I guess you're not faking. But you seem perfectly normal to me!"
Today, I cheated and ate some Halloween candy. Peanut M&Ms. They weren't all that good, to be honest, because my taste buds don't seem to be tasting much these days. I had my husband take the rest of the candy into his work. I sure don't need it.
I asked the chemo nurse about Taxol. She said most people bring in ice packs and just make sure that their feet and hands are covered. One lady wrapped her feet in a towel to make sure that the ice packs stayed in place. For my hands, I think I'm going to bring in frozen peas.
Agatha, I'm still wrestling with the decision as well. I figure at some point in the near future, I'll have to gather more facts about my particular tumor, and I believe that will guide my decision. My feelings today, which are different from yesterday, is that I'll do a double mastectomy with reconstruction.
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I know it is such a hard decision ladies. I would just make sure you have all the information about your cancer types before going into it. And your genetic results. I went in thinking BMX, but after talking with the doctor and then researching it some more, I discovered that he was dead on with his recommendation for lumpectomy for my situation. Having all that information is very helpful in trying to decide I think. (Of course, I'm a librarian, I always like having information.)
The doctor's office just called to check in on me. Which was reassuring. We talked about staying hydrated and coming in for fluids if I need it. Being a little constipated and that heart rate (in addition to the steroids) could both be a dehydration thing going on.
I feel like my head is tingly and itchy all ready, but that could just be mental. I didn't wash my hair yesterday or today either. LOL My one rogue chin hair fell out though. Yesterday, I thought...I should pluck that. And this morning it was gone. Could hair changes already be occurring? Not major, but minor?
So weird. Nothing about this whole thing is normal.
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Agatha, I am not sure if a lumpectomy is on the table for me too. but i'm hoping neo adjuvant chemo would help. considering my tumor's reaction to EC, i feel a bit discouraged at the moment. and anxious about switching meds on my next chemo.
I was notified my DNA test results are available. I haven't spoken to a surgeon yet. But i think i pretty much know what I want when it comes to surgery. it's just a matter of hoping and praying that that option is there for me to pick. :
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I ice my feet’s and hands, I use ice socks for my feet and frozen peas for my hands. My infusion is long so I got three packs of ice gel now
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Agatha,
With my DX and the fact that my mother had breast cancer twice, I want both of my breasts removed ASAP. I never want to have to worry about every bump, lump or pain in my breast. With that being said, I am ER-/PR- but HER2+, so there is a chance that I will have a re-occurrence/metastasis at some point. I want to be as proactive in prevention as possible. Good luck in whatever you decide is the right choice for you.
I had chemo round #2 yesterday. That went well, but today I missed work because just like my first round, I was really shaky all day & extremely nauseous. I've been good about taking my anti-nausea meds, so hopefully the shakes will subside. I need to be at school! I don't have enough sick days for all the things I need to have done, and I really cannot afford to have my check docked for missed days.
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Thanks Petey for posting the cold therapy socks. Never knew such a thing existed. I'm getting these
That's why I love this place. I haven't started Taxol yet but wondering if perhaps these would work on your hands too. Looked at the ice gloves but they didn't get great reviews.
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So today, I had other good news that I hope you'll find amusing. As you know, the chemo is causing us to lose ALL our hair. Well, last week, I was passing the mirror one day, nekkid, and saw a mole in my, ahem, nether regions, that I never realized I had. (I swear I groom!) Anyway, I got out my make-up mirror and looked closer at it. Then I furiously googled an article on how to tell the difference between a mole and a melanoma. Let's see, A: Asymmetrical. Mine was not symmetrical. Yikes! B – Borders – distinct borders. Mine has distinct borders. Whew! C- Color – uneven color. No, mine has an even color. D – Diameter, larger than the circumference of a pencil eraser. Mine covered a very large area. Yikes! E – Evolving. Well, how do I know if it's gotten bigger? Let's say Yes because I've never seen it before.
So 3 out of 5. Icy cold tendrils going down my back. So I called immediately to make an appointment with a dermatologist. I told her my background and asked if I could get in asap to get my mole inspected.
"Sure." She said. "We're scheduling out to February 2018."
February 2018?!! Are you kidding me?
So I had no choice but to spring it on my poor, grossly underpaid oncologist, who incidentally, I've spent about 20 minutes with in total. He patiently listened to me explain that I had an, um, concern, with a mole on my (I pointed down there). He looked a little surprised, and was probably thinking "Egads, I hope she doesn't expose that to the sun!"), but he was a really good sport. He first had to call in another person to act as a witness that he did not, in fact, take wild advantage of his 51-year old, bald, anxiety-riddden, overweight cancer patient. Scary world we live in. I pulled aside my underwear, said, "Do you see it?" and waited for the bad news. Instead, he said, "Yeah, looks like a regular old mole to me. Keep an eye on it and let me know if it gets bigger, but that's nothing that I'd be concerned with."
Thank you, sweet Jesus!
I apologized for being such a hypochondriac, but he said, "Do not apologize. You get burned once by your body, you quit trusting it. Always be open to ask me anything."
Aww, he was so nice not to make fun of me. And now maybe I can sleep...?
PS - Upon further inspection, it wasn't all that huge. I was looking at the 15x size.
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Hello ladies, I'm from September 2017 thread, but I see a lot of people from there migrated here. So, considering I'm doing neoadjuvant chemo and will be in treatment for a long time, I may post here as well.
Lisa, regarding your mole. I'm a self-proclaimed mole expert! My father had 2 melanomas and I'm being monitored for abnormal moles. I never thought I would get BC, but was pretty sure I would get melanoma at some point in my life. Well, I still might, right?
Anyway, I recently took my 13 year old for his dermatology check up (everybody in my family goes at least once a year). He has a larg'ish mole on his head (so, also usually covered by hair), and it looked like it grew. Of course, he is also growing, so dermatologist wasn't concerned. She said border, color was good, pretty symmetrical, and they are no longer putting much emphasis on size. In fact, they see small melanomas and large normal moles all the time. Hope this, along with your oncologist reassurance, helps.
Oh, and my dermatologist is very difficult to get an appointment with. It seems like they are the most in demand doctors!
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wow this thread is just a moving! Second chemo done with much better results no allergic reaction and knock on wood no headache yet! Still woke at 1230am to pee (and to deal with period that still hanging on grr) and 3am all sweaty. But no complaints so much better with out headaches. And i gained 2 pounds with last chemo... I not overaly worried about the weight gain. Im not overweight. But with starting Herceptin next chemo round and some sort of AI in January weight gain will be a concern im sure. Right at the end of chemo day a nurse from a different section of the hospital had her daughter with her it was take kid to work day. Anyway she greated my husband first with warm hugs and asked questions on daughters behalf. Anyway we unanswered all her questions. I took off my hat and allowed the girl to witness hair loose she got a hand full of hair lolol. I then showed her my scars and talked about breast cancer. Lots of warm hugs from a fantastic nurse and her daughter. Made my day. Woke this morning thinking about the nurse and her daughter. Some people are just born into their careers.
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