Chemo starting October 2017
Comments
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Sara - Like you, I am ER+/PR+, HER2-. However, my tumor was much less involved than yours. I was IIB, but only just slightly because there was micrometastasis in 1/4 lymph nodes. My tumor was 2.5cm. However, like someone else above, my surgeon said, removing either breast in my particular situation, isn't going to help much. It won't affect my reoccurrence rate. And in fact might be harmful. He said the general consensus now is that radical BMX is being performed way too often. However, this is definitely a conversation to have with your surgeon and oncologist!
Also, I was led to believe that tamoxifen wouldn't start until after rads, but I haven't gotten far enough to really know for sure.
I'm on Pacitaxel. So, I'm of no help there. Those of you on this (taxol) with nail issues, did you ice during treatment from the very first treatment? Just curious.
Started Taxol yesterday and it wasn't so bad so far. (I laugh because it's only one treatment...who knows where I'll be by the 8th!) I didn't have any reactions, but they gave my IV Pepcid and Benadryl before hand. Heartburn is clearly going to be an issue, but we'll see what we can do about that. Any other advice from those once a week taxol people?
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Hi, Petey - Good luck with the Taxol. Congrats on getting one treatment in the books.
I actually started icing during my last A/C treatment because I started getting some nail/peeling issues on my feet. I ice 15 minutes before the Taxol drip starts and now will keep my hands and feet on ice 15 minutes afterwards, too. I got that advice from the oncological dermatologist I just saw.
The peeling on my feet has improved and the discolored/lifting big toe nails haven't gotten any worse since I've been on Taxol. However my fingertips are very tingly and numb despite the icing. It has me a little concerned.
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KimCee “I did that freakin twice”. Bless you. I needed that laugh.
Thanks for the advice about doxetaxal. My mouth is good. Just numb. And I am dry!! I feel like all the moisture has been sucked out of my body. Lots of random body pain too. Just keep telling myself it’s the chemo not the cancer. And that chemo is harsh and that I need to rest. 35 days left on chemo.
I’m glad to hear I’ll go on tamoxifen before Rads. I just want that extra protection so badly eventhough I know Chemo stays in our body awhile.
Everyone’s insights about BMX are so wise. I think I’ll adopt the “no sudden moves” and keep thinking and talking to other women. Love to you all
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Petey...good sign that you are good after Taxol number 1. Most who will experience side effects do from the get go. I did number 11 today. I am not really feeling any different, but, nose is dry and bleeds. I use saline a few times a day and take a Qtip with ky jelly and roll it in each nostril. My head had little bumps and itched like crazy but that finally stopped. I never had heartburn, ever, but yup have that a few times a week. I iced for about 5 treatments and got lazy and quit. Nails are fine.
Glad you got a chuckle Joyseeker lol.
Agatha, keep monitoring the neuropathy symptoms and tell your oncologist before each treatment.
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Thanks, KimCee. I'm definitely going to discuss the neuropathy with my MO tomorrow.
Also a new SE that's a little gross. A couple of weeks ago I started to notice what felt like razor stubble on the undersides and sides of my breasts. Upon further inspection there were little, coarse, white hairs poking through where I've never had any noticeable hair before. Most have seemed to have fallen out by now, but there are still some.
Has anyone else experienced this charming phenomenon ?
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Agatha, are you sure they were hairs and not fine dissolving sutures? I had 2 of those.
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KimCee - good thought but I haven't had surgery/sutures yet :-) They were all over both breasts, unfortunately not simply a few isolated stubbles.
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Agatha,Oh my gosh...silly me. Ok, they are not sutures lol. 😂
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Kim - That's awesome advice. I'm very dry as well. I was dry with AC as well, but I did notice that my heel today feels like it has a dry skin split. So that's fun. :-) I'll start icing sooner and stay icing longer. Probably while they flush my port. Thanks for the advice!
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Agatha- That's an interesting side effect! Haven't had that yet will let you know if it happens I am behind you in treatment. In the anticipation that I will lose my eyebrows and eyelashes soon, I will be getting Taxol #4 on Monday, I ordered fake human eyebrows and fake eyelashes from Headcovers.com. Since I started back to work I didn't want to look to much like a cancer patient. Hopefully looks ok. Has anyone further along in Taxol lost their eyebrows and eyelashes
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Petey - I just had my second weekly Taxol treatment today, and it was much like the first one. The infusion went much faster this time since I didn't have a reaction during the first treatment. My MO recommended ice for both my fingers and toes, but I only opted to use the ice bowls for my fingertips. She also recommended that I take Biotin supplement daily which I've been doing since starting AC at the end of October. The icing isn't bad at all, and if it allows me to get a much needed manicure when this is over in 10 weeks, it will have been worth it. I did breakout in a rash 4 days after the first Taxol treatment, but have been using a topical steroid cream which has calmed it down quite a bit. I'm also on Herceptin and Perjeta, but they are unsure if the rash was caused by Taxol or Perjeta. We'll soon see.
Joyseeker -I had also asked by breast surgeon if I should get a double mastectomy also. He said that if he thought I would have had a better outcome by removing the breast, he would have recommended that. He also added that I'm only 44. He ended up taking a 3" cube out of my B sized breast and other than a small scar on my areola, it's nearly impossible to tell that I've had surgery. Ultimately I think that you have to follow your gut instincts as to what to do. During this diagnosis, I've found that I am always listening to doctors, family, friends, and sometime lose sight of what I feel is the right thing to do.
Has anyone started to have hair regrowth on Taxol? My son shaved my head after my second AC treatment because it was falling out in clumps. I have some stubble, but unfortunately my eyelashes and eyebrows are now thinning out considerably.
Hotflashes are the worst! We were driving down to Sloan this morning for my treatment during a blizzard, and I kept opening the window to cool off. I never thought I would say that I miss getting my monthly period, but I do!
Stay strong ladies
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I had my third DD Taxol on Tuesday of this week and I am doing great. Last time I had few SE's and this time the same, except for "Tastebuds" gone!!! I tend to eat more during these times, I keep trying to find something that tastes good, but nothing does!!! I have gained about 5 lbs over the last several weeks with Christmas/Chemo and I am ready for it to stop. I have started working out again, about 3 days a week, because my energy level has really started to return. I only have one more DD Taxol left on 1/16/18 and I am done with Chemo, then I wait about 6 weeks for surgery. I too have felt a little hair growth on my head... and although it is minimal, it is exciting. I still have about 70% of my eyebrows and 50% of my eyelashes... hope I can keep them. I also did not ice any during Taxol, mostly because I am lazy about the icing thing, but have had some soreness in fingertips, but nothing that is bad.. no nail lifting.
I feel like I can start working at the office more now that the SE are not so bad, I was able to work this week with great energy. I too, like others, have wrestled with the decision on surgery. At first the surgeon thought I would only need a lumpectomy, but because of the spread of the 3 tumors said it would have to be a Mastectomy. But I am fine with that... I then started to worry that I should just have a double mastectomy while I was having surgery, but after reading some of your posts, realize it will not help avoid another case of breast cancer... which was my whole reasoning behind it. My surgeon has consistently stood behind the idea that I should NOT have a double mastectomy. Now, I feel it makes more sense to follow my surgeons advice. Really appreciate everyone's posts, it really helps with all the decisions... and fears that I have.
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Trilady, I ordered the lashes from head covers.com. They are awesome, Cardani I think. I am not good with applying so I ordered the applicator and wow, first try nailed it. Since Taxotere 18 years ago I never got all my lashes or brows back. I have been using brow powder forever. I lost my hair on Taxol after week 5. I just did week 11 today and no regrowrh ☹️ But I am a weirdo...most do start regrowth after AC and on to T.
I mixed Laxmom's answer in with Trilady...ooops chemo brain.
Petey, one more thing. Lube up with lotion...I am so dry that when I take my clothes off I see fine tiny white airborne particles...skin shedding like tiny dandruff. Gross. It has to be Taxol.
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Laxmom. How much biotin are you taking? I thought I might ask my MO if I could start taking it as I near the end of chemo. My desire is to have hair by May. 35 days of chemo to go.
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Joyseeker -It must be such a wonderful feeling to only have 35 days left of chemo! Congrats!! My MO told me that I could take 5000 mcg. daily and I started taking it after my second AC treatment.
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Glad so many of you are able to get a lumpectomy instead of a mastectomy. If I just had one cancer lump and that's it, I would probably make that choice.
I have other probably benign issues in both breasts. Microcalcifications, cysts, fibrocystic disease. Just makes sense to me, to take care of removing both now.
I have been going back and forth on staying flat or reconstruction with implants. Right now I am thinking delayed recon. Do the BMX, see what pathology is and if I will need rads. Before putting expanders in. The downside is it adds another surgery if I do choose recon. I meet with PS on the 24th, so this is really on my mind
Hoping my MO will put me on Xeloda after all this. We haven't had the conversation yet.
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Kim - I've been shedding skin like that since I started AC! It's so gross. But, I guess if that's the least of my side effects, I'll go with it!! I've got so many kinds of lotion and moisturizer it's a little crazy! Nothing really seems to help my feet or my head though. :-( Oh well. When all is said and done, it will be spring and I'll be far less dry!!
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Kim (And anyone else on Taxol) - My taste changes seem to be a bit different this time on Taxol. I sort of have a sweet taste in my mouth all the time. Everything seems to taste a bit sweet - so kind of a little off. Anyone else have that?
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In the chair now awaiting my blood test results before starting final AC. Then I start on weekly Taxol with Herceptin on the 26th. I always completely lose my appetite for the weekend post-AC, but I received a $20 Chinese restaurant gift cert for Christmas so I'll be cashing that in on my way home in hopes that having something tempting on hand that can quickly be reheated will make it easier to/more likely that I'll eat more.
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Tabzls good luck with your chemo today. I’m felling like today, day 8, could be my turn around day on this new drug. Rode the stationary bike this morning, swept the barn aisle, cleaned out a bunch of junk. I finally feel close to myself. Thankful.
One bad thing? My skin! My nose, random patches, my lips are like they have had a chemical peel from the inside. Thank you Doxetaxel.
Having a sleepover at my moms today. Hubby and son have gone to claresholm for basketball. We are going to make a veggie stir fry, homemade spring rolls watch the World Junior finals (Go Canada!) and mixed Olympic curling trials. We are pretty rowdy
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Joyseeker, I hope once I start on Taxol (paclitaxel) I'll be feeling closer to "normal" before day 8, since I'll be receiving it every 7 days for 12 weeks. LOL. Hope you're enjoying your sleepover. Sounds like fun! I've got all the curling this weekend set up to DVR.
I don't know why EVERY time I have to go in for chemo or blood work it always has to be the coldest and/or snowiest day of the week. Was -9° with a -32° wind chill when I went in this morning. We got at least 4 inches of snow yesterday afternoon/evening and then another 4 overnight, so the roads were absolute crap. But at least when I go back on Monday afternoon for my Neulasta it's actually supposed to be 35° with only an inch of snow. WOOHOO! We've been below zero or single digits for the past week and a half. Supposed to be below zero with wind chills in the 30s below this weekend, so I'll be hibernating. Though I know it's likely much colder where you are, Joyseeker.
BTW - any word yet on when the episode of Heartland that your hubby & daughter are in will be airing?0 -
Tablz it is the season finale. So it will air in March. I PVR’d all the curling too. Not gonna lie. Sometimes I skip the leads shots. Lol.
We just came out of a wicked deep freeze. Consistently -40C with the wind chill. It was miserable. Chinook blew in. It’s been about -5 with glorious sunshine this week. It really helps my mood.
I’m on a 21 days cycle with this drug. Longer time to feel like myself than you American women on the weekly schedule. 34 days left on chemo.
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Petey, I have had no taste change on Taxol at all. Kind of wish I did as I gained freaking 10 pounds! on the skin...no matter how much I pour on cream, no help ☹️
Joyseeker...holy moly, wish I would get that energy! Maybe if I exercised a bit, I wouldn't eat everything in sight.
Tabz, I hope you breeze through Taxol. The weekly is easy for me. I work full time during it, and Herceptin should be even easier.
Does anyone know when our hair will start growing back after last Taxol? I finish next week which is my 12th.
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i did dox sara. Lots of sore muscles some bone pain sore finger tips. i didnt feel like doing anything.. 7 days of feeling like i was hit by a truck.. Not sick to tummy but steroids i was on mas me graze at food .. Heartburn like sysmptoms now learning it was food mobility issue just not wanting to go down. Carbonated drink to burp with.. Dont lie down after eating and milk for back up ic it turns into heartburn. Tiny dixie cups at sinks with salt n baking soda mixture. Rinse when your at sink. Before n after eating. Dox really wiped me out. Good luck
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KimCee - I really hope so!
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KimCee, Sara and everyone else with peeling, cracked skin on your feet - my pharmacist recommended foot lotions/creams containing Ammonium Lactate -12% was the amount he said to look for. A couple of products are Amlactin and Lac-Hydrin. There was a problem with getting the Rx the dermatologist prescribed me so I've been using this instead and it's helped the peeling a lot. My feet are so much better now.
Sadly my finger tips are not better. I saw my MO today before what was supposed to be my 3rd DD Taxol infusion. She's concerned about the level of neuropathy I have already and switched me over to weekly Taxol in hopes of stopping the progression of nerve damage in my fingers. She thinks that it won't get any worse with the reduced, weekly doses and it should be reversible at this point. If I kept doing the DD I could have permanent damage. Soooo - my 14 day chemo count down has turned into 35! :- ( But hey, no Neulasta -- that's great.
I asked her about the little white hairs on my breasts. She said she'd never seen that and of course they are all gone now so she might think I'm just a nut job! She said maybe it could have been pores pushing out dry skin since Taxol dries us out. I still swear they were hairs.
She did give me a heads-up that when hair starts regrowing I could get a coating of soft hair on my face! Have you guys heard of this? I think I may have seen something about it in the "Hair Hair Hair" thread, but my chemo brain can't really remember. It's not permanent thank goodness. She didn't want me to be alarmed. What could possibly be alarming about sprouting a beard?! I immediately thought of this classic magazine cover from the 60's.
No word on a new surgeon yet. I am so anxious to meet with someone to discuss how the tumor may or may not have invaded the chest muscle and what that means for surgery, like how much of the muscle might need to be removed. An additional surgeon might need to be in on the deal, too.(Ironic side note: the husband of the breast surgeon I just quit is married to one of MSK's thoracic surgeons.... hope they don't assign him!. Awkward) I have an MRI scheduled for 1/30 - hopefully that will give some clue if the tumor has left the muscle or not. I am not good with the unknown, admittedly a bit of a control freak. This is driving me nuts.
Jennifer - I hope you do speak to your MO about Xeloda. I talked to my MO about it again today and feel reassured knowing there is something additional available for us TNBC peeps. It has to be taken after radiation is over because it synergizes poorly with radiation.
No way I'm getting to sleep any time soon since I had a 3 hour nap after chemo. I'm off to do some binge watching of my new favorite series on Netflix. It's called "Glitch" - it's Australian. It's about the mysterious reappearance in a little rural town of a small group of random people who'd died there over the past 200 years. Very binge worthy if you are looking for something while you're taking it easy on the couch.
Hope everyone has a good weekend! No Neulasta shot tomorrow - yay!!!
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I'm 3 days from my 6th Taxol. Still suffering through an upper respiratory virus I picked up at Christmas, including a nasty cough that has left my throat in tatters.
On Monday, I finally get my mammogram/ultrasound to gauge how my tumor has responded to chemo. I got completely conflicting information from two NPs who felt it manually, so I insisted on an US. (One said it's gone, and the other said it's 2cm.) Wish me luck!
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Lisa- so glad that you are able to finally find the answers you have been waiting for. Sending you good vibes and best of luck on Monday!!!
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MrsWinnie your experience sounds just like mine. I’m grateful I only have two more of these. Thanks for the insight. 34 days left of chemo
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AgathaNYC the shaving picture cracked me up!!! I just finished my 6th weekly taxol. I have noticed those white downy peach fuzzy hairs on my face! Not all over, but I was sad about loosing my eyebrows and noticed this week I have more peach fuzz than eyebrows!, So I took my razor and got rid of the peach fuzz. I didn't look as good as Marylyn but I could relate. LOL!
I also see a lot of white peach fuzz on my scalp. Normally it would look like my hair was growing and I would get all excited, then I would get my chemo and I was back to skin head. This week I feel some course stubbles, my scalp is real tingly, I am excited and I am hoping it is going to stay 🤩 I have read the white peach fuzz will fall out but I am hoping my stubbles keep growing. My eyebrows and eyelashes were down to about 3-4 hairs and they are coming back very fast.
My worst SE is I am SOOOO tired (sick & tired of being sick & tired) I still work part time but last night I was to tired to get up to go to bed. I slept in the recliner. I read how excercise will give you energy but I am so tired I can barely do anything without having to rest.
I also lost 15 lbs. with my first 6 cycles of AC but I gained it all back FAST on Taxol now that my taste buds are back. Steriods gave me an appetite back. Hope I don’t keep gaining but I need to eat heathlier now that I can tolerate food.
Have a great weekend. Looking for forward to some warmer weather next week or at least out of the zero range.
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