Chemo Starting August 2018
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Had Taxol #3 today, one more left then onto hormone suppressors, but done with chemo. My eyebrows thinned out a bit over the past week but eyelashes are hanging on so far. I still think my body is playing tricks on my and this hair coming in on my head is gonna fall out. I totally get tuning out socially—I’m right there with you!!
I know I’m gonna be up all night tonight after the steroids for the Taxol dose...ugh!! And I’m not ready for a week or more of bone and muscle pain, but I know it’s coming. But I also know life could be worse and so many women have it worse, so I will just be happy that I’m closer to the last treatment!!
I hope and pray you are all doing well and feeling good.
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Moongirljess, you made me laugh for the first time in days with you universe comment. I felt the same way last night but you added humor.
I really don’t know what I would do if I didn’t have this group to help me get through this. I gree with Kelly-Anne and santabarbarian, I have no interest in outside conversations that start with you sound or look good, REALLY!!!! Couldn’t live without my 🤞👍😃 emoji.
Hughope1, will be thinking of you and wish you the best. Would love to hear how it goes after your surgery since we are headed for the same experience. Keep us posted.
This is day 8, my mouth is improving a little so hoping better in a day or two so I can start to put some weight back on. Monday I go for my ultrasound to see if my tumors have shrunk, hopefully so, as OC said he could reduce dosage of taxotere. My experience with this treatment continues to get worse so I’m 🙏🏻 for good news. Maybe a smaller dosage will make it slightly more tolerable.
I think I might be one of the last holdouts, number 5 is day before Thanksgiving, we have decided to postpone that holiday, and my 6th and final is December 13.
Thank you all for being there for me....😘0 -
Taxol has WIPED ME OUT! I'm sore/in pain all the time. I'm having issues with my port (since Day 1); it's like a permanent heart cramp (heart attack has been ruled out; as have blood clots). 2nd last chemo this Tuesday, one more on the 27th and then DONE! Surgery isn't scheduled as yet; will find out more on Dec 5.
I've decided to have a DMX; I really never want to go through this nonsense again. Going flat seems to be most logical for me; I hate my boobs now, they've become the enemy. Bonus: No more bra's!
I am more emotional than I've ever been in my life; randomly bursting into tears. It's ridiculous! I look like an alien (approx 4 eyebrow hairs on both, no eyelashes, no hair). I'm pretty sure everyone who asks me "how are you" really wants to hear "I'm fine, all is well"; although the general response is a poop emoji.
Thank you for sharing all of your "stuff", it's nice to know that we're not alone. Mad love to all! xoxo
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If it is not TMI, the hair loss thing is sort of baffling:
armpits - all gone
baby-fine blonde 'skin' hairs (peach fuzz on arms, face) - not gone
eyebrows - still have 75%
eyelashes still have 60%
90% of hair on head - gone; head hair that's not gone is "baby" hair - light blonde/ nearly clear. All the dark blonde/brown hair fell out
lower legs - still bristly! apparently my leg hair can survive nuclear war
upper legs - all gone
pubic hair - 50% gone
???????
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KWilli - I actually woke up today thinking about my decision to have a BMX. I've heard so many stories of local recurrences and I know it doesn't bring your local recurrence chance to 0, but it's close. I feel like I've pulled myself out of the mammogram cycle and that's a relief. I have no regrets. But still, it was a hard choice. The tough thing is, there are NO good choices in all this, so you just have to trust your gut about which one is the best for you. I hope making the decision brings some peace. And don't feel like you have to tell people you're fine when you're not. It's okay to say it's been rough.
MACTAZ - my mouth issues got worse each round. A couple of days ago it looked like someone had taken a nail file to my tongue. I'm on Day 8, too, and it's improving on diflucan.
santabarbarian - I have weird patterns of hair loss, too. My legs look I just shaved them yesterday, but I haven't since August. But I have my susal peach fuzz on my arms. No hair in my arm pits, sparse pubic hair. The hair on my head is still brown but there is very little of it. Still look like a baby bird. But I'm 8 days PFC and I have yet to lose my eyebrows or eyelashes. I don't understand any of it.
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thanks wanderweg, I will look into diflucan. Based on your chemo start date, same as mine, we are on the same schedule. I’m improving and was able to eat a little yesterday. Still no weight gain but hoping in next couple days will see some improvement. Hope you continue to feel better until next session.
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MACTAZ - Thank you. I actually had four rounds of TC, so I rang the bell last Friday and am now 10 days PFC. I’m sticking around to learn about how things change post chemo and to cheer on everyone who is on longer chemo regimen
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wanderweg, I missed that. Congratu
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wanderweg, thanks for sticking around! Some of us will be dealing with this for another several weeks at least, and someone mentioned going into December.
I have one last chemo on Nov 27. I am very happy to be nearly there! Today is day 6, and I feel pretty decent.
Love to everyone emerging from the fog....
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Hair status—
Head—has that white fuzzy stuff on it. My husband and mom just like to rub my head. They say it's soft 🤷🏼
Eyebrows—6 hairs on each side
Eyelashes—I had to cut them down so now none. I had about 4 on each side and it looked awful so I trimmed them.
Pubes—5% left, maybe
Armpits—no hair for months
Lower leg hair—fine clear hair, nothing dark
FACE—I woke up with a face full of that fine peach fuzz 2 days ago. A face full! My face had been hairless. It was awful looking. Looked like a side show exhibit. Freaking bearded lady. At least I had fresh razors at the ready.
I have chemo #6 tomorrow. Then weekly Taxol is half done. I'm tired. December 24 is my last Taxol, hopefully.
Congratulations to those that rang the bell! So happy for you, wanderweg!
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WANDERWEG!!!! Yeeeeeaaaahhhh Baby! Congratulations! I hope you rang that bell so hard! Thank you for your kind words and sharing about BMX.
Santabarbaian: we’re done on the same day! Hang in there, two weeks left! Woot woot!!
MoongirlJess: what a great holiday gift, last one Dec 24.
MACTAZ: I hope that diflucan has helped, that you’re able to eat and put on the weight you want/need.
XO
Ki
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Kwilli— I’m usually on-call at the hospital so I’ve not had a proper Christmas in years but I am so looking forward to it this year. The chemo nurse last week said, ‘Are we even open Christmas Eve?’ I had better hope they are open or I’m breaking in and giving myself Taxol #12. Merry Christmas to me and send bail money.
Jess
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Hello everyone..
first time posting here.. done with chemo and skin got so dry and now have deep wrinkles especially in mouth corners. Was wondering if anyone tried or got ok to have fillers (ie. Restalyne, juvederm) done?
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Wndrwmn—hello! chemo trashed my face and continues to currently make me unbelievably dry. My NP said no to my Botox request so I know if I asked for fillers she’d give me that look again. I don’t know how long we have to wait post chemo to have fillers or fillers touched up. Maybe someone else knows. At this point my lips still look good (which were filled prior to BC diagnosis) and that’s about it.
Jess
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KWilli, good to hear we will cross the finish line together.
Sooooo close!
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Well I seem too have “lost” today. Slept the entire day away. The docetaxel seems to just take me right out.
My DH looked after the daily routine and seems happy for it. (I woke and was worried he would be annoyed at doing all the work.) I’m thinking that I’ll brush my teeth and head to bed for the night. Maybe tomorrow will have more go go power.
Hope everyone is well.
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Kelly-Anne—I’m so jealous of your ability to grab a nap! I would love to sleep the day away. I would find it productive! Hope rads are going well for you. My Taxol makes me tired, too.
My ability to sleep well has taken a hit from the hot flashes and night sweats that have invaded my life. Last night was freaking awful. I was trying to throw off my 20 poundgravity blanket and rip my T-shirt off (and not disturb the sleeping cats!) all while dripping with sweat. Hubby was snoring soundly. The nerve of that guy.
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KWilli - Thank you! I did, as much as I could (I was a little spacey!). I got my husband to video it, so I could see it when my memory was a little clearer! You get to do it soon!
Santabarbarian - And you, too, will be ringing the bell soon! The 27th will be here before you know it.
Moongirl - Hang in there - I hope 2019 is better for all of us.
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I had a new chemo nurse yesterday and she destroyed me by saying your last chemo will be December 26!?!? Huh? I was supposed to be done December 24! She said they aren’t doing treatments that day. I had my end date in mind and to push it back damn near ripped my heart out. I’ve be in chemo since the end of July 😭 I’m 10 chemos in, let me be done! After chemo yesterday, I called infusion center at the hospital and I can have my last treatment Christmas Eve at the hospital. Gotta make this happen! Finish line in sight.
Then last night, the onc office called me at 530 pm and asked do you want your last Taxol Friday Dec 21? I can do chemo on Monday and Friday and be done. YES!!
I just have to stay well through these last 6 chemos and get this in the rear view mirror. Silver lining is that I can bow out of holiday parties I don’t want to go to. You know, low WBCs. . . Can’t do crowds. . . 😃
Hope the last few of us are holding strong. Talley ho, ladies we got this.
This Mama needs a drink.
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Okay girls,
Hope everyone is getting close to the end of our treatments? I get blood work done today and LAST ROUND OF CHEMO FRIDAY.
Surgery is scheduled for Dec. 13. I am sending best wish and hopefully we will all be able to eat by Thanksgiving. That may be a little to soon for me, usually takes a good 7-10 days before I am able to do much of that.
I will write more later. Stay strong, we are all in this together. Hughope0 -
Good morning you beautiful STRONG ladies!! Pushing through some tough SE'S! And I am so excited for so many of you getting so close to the end of your journeys and ready to move on to your next season!!
Congrats to you wanderwmn on ringing that bell!! I was bummed to find out they do not have a bell at Hopkins, so I may have to take my own, or maybe a blow horn or something!!
MACTAZ, have you been gargeling with salt water or any special mouth wash they recommend? I've had mouth sore here and there with the AC, which I completed 2 weeks ago, but they are uncomfortable. The salt water rinses really help, however this past time I had ulcers pop up on my lips. I can't wear my Burts Beeswax lip ointment because it makes them worse, so I carry vaseline and have been putting mupiceron on them so they don't spread. My lip got all swollen and nasty looking for a couple of days. I had to back off of orange juice and acidic foods also.
Praying your tumours have shrunk!!
KellyAnne- I agree about gossip and politics and all the nonsense on tv. I shake my head and tune out! Life is too short for such drama. I also start watching movies and I just can't enjoy some of the stupidiy in some of them these days.
Jess, I'm with you on all the hair loss se's. I just started round 1 of 12 taxol yesterday, so I'm waiting for the eyebrows and eyelashes to come out. I did have the eyebrows microbladed before chemo treatments, but they have faded, and I can't get my touch up until after I am done with chemo, but I think I have somewhat of lines to follow with brow pencils and gels. And I will try fake eyelashes, not sure how that will go. I've never worn them before.
Wndwmn 2000, I have developed those same dry deep wrinkles around the mouth. I purchased Lindi moisturizer and face serum (developed for chemo patients) and it helps, but has to be reappied often. I also cake vaseline on those areas hoping to keep them setting in permanently, I HOPE!! And I am drinking water, water, water. Praying it all helps.
I completed 1 of 12 Taxol yesterday. My last date is 1-29, so I have a ways to go, then I begin radiation for 6 weeks. We are hoping to slip a trip in between chemo being done and the beginning of radiation. Hoping my blood counts don't dip too low by then. They've been ok so far though AC, wbc has been high because of Nuelesta, but rbc gets lower, but not too low.
They said Taxol will be easier on me. We will see how it goes. With AC I would end up in bed for 2 days with absolutely no energy or stamina. They said doing the 12 Taxol is lower dense dosage. The benedry the gave me did make me sleepy but wore off by the time we stopped to eat dinner.
I've been able to run about 20 miles since last Tuesday...7 days post AC, so I hope I can continue to run through the weekly Taxol treatments. It makes me feel better both physically and mentally. I did some food prep yesterday before my treatment by cutting up fresh beets, broccoli, I sitll need to get carrots slices and cut. Just to have them readily available and to grab.
Have a great week ladies! Hang in there, most of you are getting close to the finish line!
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SmilingDawn, I am absolutely in AWE of your ability to run like you have been during chemo. I finished TC and have started rads, and have let my exercise routine go to the dogs. I’m trying to get back on track, but am not doing a great job so far. I hope Taxol goes well for you
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Smiling Dawn—sounds like you will do just fine with Taxol if you can run 7 days post-AC! I couldn't barely stand until day 11. I get tired from the Taxol but absolutely no N/V which is awesome. The Taxol makes my pee stink and I have a dry cough but my body aches are hit or miss. Sometimes nothing sometimes I'm looking for the person who hit me with a 2x4. Ouch. But nothing like the Neulasta pain.
My counts have been all over with the Taxol. One week ok. One week meh. Goes back and forth. My last neutrophil count was 1600 and I can't go below 1000. Wbcs 2.7.
I traveled to Hawaii between AC and Taxol. I sucked it up but I was pooped. I have one boob, a sore left arm post axillary dissection, skinny, and bald. Not the vaycay of my dreams.
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Moongirl - Bumping your last chemo up to 12/21 is a good Christmas present. You might still feel lousy, but you won't be going back for more.
Hughope - Yay! Hope you are able to eat at least a little on Thanksgiving,
SmilingDawn - Thanks! And I'm using vaseline for my flaking lips and dry skin, too. On my skin, I use a post-chemo lotion and then vaseline on top of that. I've always had dry skin but this is crazy. And good for you on running through chemo.
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Smiling Dawn—I bought one of those 'tattoo eyebrow pens'. I tried to fill in where I believed my approximate eyebrows used to live. All I can say is a disaster ensued. Anybody want 2 gel eyebrow pens?
Wanderweg—I couldn't agree with you more. Need to avoid sick people and pray my blood work cooperates so I can put this behind me. Dec 21 here I come.
Went to a new acupuncturist today. She said she can help with the night sweats and hot flashes. I will be cautiously optimistic.
Santabarbarian—I asked for Metformin and the NP shot me down completely. She went on about kidney failure, etc. sounded like bullshit to me. I'm not afraid of Metformin but apparently she was horrified by the idea. I think I'm more horrified by the AC they gave me.
Hughope—that’s fantastic! Last chemoFriday! So happy for you!
Jess
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MGJ - I agree with you. I am more concerned about metastasis than whatever metfomin may do to me... Especially as there is no simple follow up therapy where TNBC is concerned. Rather throw everything at it now.
Finally feeling more officially "back" on day 10...
Wishing a good day to all.
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Thank you both for shout out, I am heading to the bell tomorrow if all goes well. You will both be in my thought and best wishes. My grandsons birthday 12 yr old on Saturday. I am suppose to go to Great Wolf Lodge with him for it, I hope I'm up to a water park.
I love him and don't want to miss it, but don't really think I should be around all the kids. 0 -
Finished A/C. 2nd Taxol today. Oncis conferring with surgeon regarding doing surgery after 3rd of 12 taxol. A/C worked well, 2 of lymph nodes reduced by a centimeter each. I would prefer to finish chemo first. Does anyone have experience with surgery in middle of chemo?
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MGJ, Glad you were able to move yourchemo up, it will nice to be done with it.
Santabarbarian, glad you are feeling better.
Hughope1, good luck tomorrow and ring that bell so all can hear. CONGRATS.
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hughope - I’m thrilled you’re getting to ring the bell today, but worry about you taking your fresh-out-of-chemo self to a water park. Be careful!
Moongirl - Your description of the eyebrow pencil made me laugh out loud. That would so be me - I have no make up skills.
Benji - my surgery was pre- chemo, so I can’t help, but I did want to say that’s great news on your tumor shrinking
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