Weekly Taxol group
Comments
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Yes, Labscientistmom, the handout from the oncologist mentioned the mustard gas origin. I also learned that the taxanes (Taxol & Taxotere) are from the Pacific Yew and Cytoxan is from a soil fungus Streptomyces. Does your son or daughter sit around thinking, "You know, let me grub about in the garden & garbage can to see if I can find a new chemo drug"?
Katjadvm , I can't blame it on chemo yet, but I've periodic burning / shooting pains like needles in my breast and sentinel node area since my lumpectomies.
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Hello ladies,
Going in for infusion #3 today. Preparing for hair loss this week, and I've already noticed thinning greasy hair so I guess it's inevitable. From what Ive read on posts it happens this week - about day 16/17 - is that when it happened for you? Holding onto my long hair as long as possible. Once I see significant loss, I know I'll be traumatized no matter what mental preparation. Will probably go in and get a super short cut this week or next so they dont fall out so long. Been blessed with long hair that is easy to care for - hard to say goodbye.
I am a single mom with a 5-year old daughter. I feel like Ive been handling well most days, but I feel so bad when Im not as patient as I used to be and cant do things physically that I used to do and want to do with her. Just trying to be the best mom I can through this
Appreciate all of you sharing SE's and what you have done to relieve those. What can I expect in the coming weeks? When does the neuropathy start? Did anyone get migraines? When does the nausea and exhaustion get significantly worse? Any vaginal pain -- do you still get periods?
Sending all of you hugs & kisses as we go through this challenging time together. So grateful we have each other.
Karen
This picture is from last week. Trying to take weekly pics. Will take another today when I go in later.
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Dear Karen - my heart goes out to you. I was a single mom for 12 years. Do you have any help? As humbling as it can be, please allow others to take care of you and your daughter during this window of time. Your hair is beautiful and so are you. The SEs I felt on week 3 were hair loss, diarrhea, dry skin, nose, and eyes, gas and bloating, and bloody noses. I also had long hair like you and gradually cut it starting before chemo and my BMX. Here is a pic of me on chemo #1 and #3. I have since shaved.
I am icing my hands and feet following the protocol used in the study I posted earlier. I was afraid to experiment with peas and ice packs. I also suck on Popsicles to avoid mouth sores. I am going to try frozen grapes this Thursday (thanks for the idea Fireheart).
I do not have vaginal pain, but I am worried about it once I start Tamoxifen. I had an ovary removed due to a cyst three weeks before my BMX. Yet, I had a period on week #3. My nurse said periods are unusual during chemo. Go figure.
Chris - the bruising seems unusual. I suggest talking to your MO.
PS. I only wore the F Cancer hat for the pic. Inside I am screaming F Cancer, but I am also thoughtful that the hat might be offensive to others. Personally, I love the hat!
Bird
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This is such a great thread. Thank you to everyone for your perspectives and hopeful comments. I don't write often but appreciate you all so much. Hopefully soon I will be able to give more...
Bird of Light and 3 Rosebuds - your pics are beautiful despite the circumstances... Fireheart - your new do is fearless!
I'm wondering if anybody has some insight for me. I've completed 2/12 taxol + herceptin infusions. Unfortunately I got a second path report that has encouraged my onc team to suggest the addition of Carboplatin and/or Perjeta. I already had a mx with reconstruction so Perjeta would be used adjuvently, which is currently off label. One of the oncs says to add Carboplatin only and the other says to add Carboplatin and Perjeta - I wish people were in agreement. My body is super sensitive and I'm having some trouble this week with SEs after just round 2 of taxol/herceptin. I feel massively hungover and ill - like I had 37 martinis without any of the chandelier swinging. I can't do anything useful - I have no brainpower and can't really exercise or eat. Hopefully it will get better. Does anybody have any thoughts about the Carboplatin and/or Perjeta in terms of side effects? I think this is usually a regimen that is done every three weeks. Supposed this every week dosing will be easier? I can't do anti-nausea drugs so I am really scared of feeling super sick. Last week I was supposed to add the Carboplatin but the nurse and pharm came running in and said "Oh my god, you can't do that without an anti-nausea medication What is going on??" So I didn't do the carboplatin. I have to do it this week. My onc today said "Oh, I think you'll be okay. They just follow protocol". I don't know about that. I think nurses spend so many hours in infusion centers they know perfectly well what is going to go down. Anyway, again, I'm frustrated and sad that every step of this road seems more complicated.
Thank you. Hope everyone is having a good night and gets some sleep! Best wishes.
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Willa216, I'm naturally curious so would want to want to know from the oncologists specifically what was on the pathology report that supports the addition of new drugs . What is the expected benefit vs. possible risks? I will say that both Carboplatin and Perjeta were part of my recommended drug therapy (along with Taxotere and Herceptin which you already have covered) when I was initially diagnosed as HER2 positive although mine would have been pre-operative / neoadjuvant.
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my3rosebuds - You are beautiful! I can understand how it will be traumatic to lose your hair. But I'll bet with your sweet smile that you're going to make bald look truly stunning. Don't worry about not being super mom. Your daughter doesn't need you to be able to do everything, she just needs your love.
Periods unusual during chemo? I wish someone would tell my body that. At 52, I would welcome that. Mine started right before my first infusion and has been with me since. Just a very light flow after the first 3 days, but seriously???
Bird - Your pictures are great. Love the hat. Frozen grapes were really tasty during the Taxol. A friend of mine sent me some popsicle molds and great recipes. I plan to make some protein pops and take one with me this week. It better not melt before I get to eat it, or I'll be one cranky patient. LOL
Willa - I'm with VLH...I'd want to get specifics about why they're adding those meds to your infusion. I know it's so easy for us to get overwhelmed and not ask all the questions we want to. Sometimes my head practically spins when I think about it much. There's such a wealth of info out there, and it can be so hard to sort through. But if you don't feel right about something or have doubts, definitely push for answers. Is there someone who can be with you (or on the phone with you) when you ask the MO your questions? It can be incredibly helpful to have another set of ears listening to what's being said.
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VLH and Fireheart - thanks for your help. The reason the oncs want to add Carbo and/or Perjeta to Taxol and Herceptin is that the tumor measured 2.4 cm with the second path report. The original path report measured it as 1.4 cm - so this news took me from stage 1B to 11A. I also have a tiny spot of secondary cancer and micromets in 1 of 4 lymph nodes, data which was known upfront with original path. A bit surprisingly (to me anyway) neither of those two points swung the decision from Taxol/H only but the larger tumor size did. The hard part for me is the study that has guided Taxol /H "chemo light" treatment for small node negative Her2+ tumors uses 3cm as the cut off. I wasn't myself yesterday (so sick) and my husband couldn't go to appt, so I didn't ask questions as I normally would. Just rambled incoherently and tried not to throw up on new doctor. I'm so nervous about additional side effects of two more drugs, as well as the use of Perjeta adjuvently because it's such a new approach. Drugs scare me which is crazy because I work in the pharma industry ;( But I will get these questions answered.
Thanks to you, and to others here, for always being calm, intelligent voices of reason. I am in awe of everyone's strength and achievements.
Hope you're feeling good!
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Hi willa216 - Ah, so that explains it as I was also wondering what the 2nd path report could have done to change the chemo regimen. That 3 cm cut-off was from the APT trial that I brought up in another discussion thread on these boards. My core bx report and surgical path report from 1st lumpectomy took size from 1.1 cm to 1.7 cm. My pre-op MRI characterized size as 2.1 cm but that was due to hemorrhagic artifact from the bx procedure. But when my onc and her fellow were discussing the Taxol/herceptin option they too were saying if it was over 2 cm they would probably recommend something else.
I love the photos of yourselves bird and 3rosebuds it's nice to put faces with our pseudonyms. 3rosebuds, I am now 27 days into therapy. As of yesterday, I still had hair but it was falling out at a furious rate, so I gave up and got it buzzed (see with and without hair pics below). It still fell out last night on my pillowcase, but at least the hair is a lot shorter and I can pick it up with a lint roller.
Labscientist: I try to remind myself of the key principle you emphasize and that is the chemo is seeking out and killing all of those little cancer cells that may have escaped elsewhere. My initial reaction was to be very angry that I was basically going to be poisoned in order to do this, but I have come to be more accepting. I read a response on one of the boards that the individual actual holds her bag of chemo and sends it love & gratitude. I'm not ready to go THAT far but I do try to visualize during the infusion that is spreading around my veins in a beautiful lavender-white light making me well. BTW, I also worked in medical laboratory; retired 2 years ago from the Asst. BB supervisor slot. I'll be thinking of you as you go from the taxol to the AC portion of your treatment.
fireheart: what a bummer to be having your period during chemo. Absolutely. No. Fair. At. All.
I've found the fatigue factor be somewhat cumulative and I am not recovering my energy level anywhere near as fast, or so it seems after this 4th round. Maybe I just had an off week. Neuropathy has been quite interesting this week - progressed from my feet to my fingers - off and on feels like they are being attacked by little burning prickles or stinging insects. Finally decided to go to a meeting of my local support group, tho' there won't be many there apparently as we are in the last gasps of summer on the East coast and everyone is busy with August vacations, etc. But, it's an excuse for an outing, albeit a poor one.
Now I'm going to get a walk in before the support group meeting. Number 5 taxol / herceptin infusion tomorrow; am getting my usual day before infusion jitters; can't seem to help myself.
Wishing everyone a good week with minimal side effects. (( ♡ ))
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Gosh, that's a significant error on the tumor measurement, Willa216. I know tumor size & micromets can drive chemo / targeted therapy, but understand your reluctance to add more drugs to the mix, especially when you're already not feeling well. Both the number of drugs (TCHP + Neulasta) and the duration (six months) were the reason that I passed on neoadjuvant treatment. With my diagnosis changed to triple negative based on the excised tumor pathology, I feel compelled to pursue chemo.
It is fun to see the photos of group members. :-)
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Roofcat - Great pics. You look awesome with your buzz cut.
It seems we're all so reluctant to lose our hair, but when I see pics of the women on here I don't see the hair. I see the smiles and the determination to beat BC. We are not defined by our hair...or our breasts. We are each so much more than that outside appearance. Hold your heads high, ladies, whether you've got long locks or a cue ball atop your shoulders. YOU. ARE. BEAUTIFUL.
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Taxol/Herceptin #5 done today. Had another echocardiogram. The fluid is still around my heart. Going to see the cardiologist tomorrow.
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roofcat59: you look better in short hair than I do, wish I could pull it off so well. I had them cut my a bit longer than shoulder length hair at 5 weeks into taxol, and I think its actually grown, but looks so weird from the bare places. Its nicer to have smaller hairs to clean up, as its still falling out too, weird!!! Yay another, CLS. I miss the lab, been off since my surgery in April, but I don't miss the germs. I love blood bank, its my favorite. I am only doing hematology as my other dept to work as a generalist, as I only work 3 days a week parttime. I sent my friends pics of the scary malevolent red/orange bag of Adriamycin and said here' the red devil I am dancing with today. Take that cancer cells, DIE, die!! It helps to have the right mindset and I appreciated by lymphoedema PT suggesting it when I expressed my not looking forward to the A/C. I have only 3 more to go, survivied the first one yesterday and got my neulasta shot today! nothing scheduled for the next 3 days, so If I need down time, I am good. blessings to you, A
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Labscientist - Have been wanting to tell you that I like your profile pic. We have 6 cats and 4 house rabbits. With all the animal hair we end up with maybe I could make a wig. Bunny hair sure would be soft.
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Katjadvm, thanks for your reply, much appreciated. I will look into those as soon as.
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Did anyone develop a rash in the bikini area during treatment? Had 3rd infusion and the day after got rash. They think not allergic reaction to Taxol, and possibly just sensitivity due to lower immune system. Anyone else experience this? A little worried.
Thank you
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Bunny hair would be nice!
Rosebud, I have gotten a rash around the port that Benadryl cream took care of. I also have rash like bumbs on my neck and pimples. My doc says chemo pushes things out of the skin. Maybe try some Benadryl.
I love this thread! You all rock. Had #7 today. It's all down hill from here.👍
Roofcat, I buzzed my hair last week. We had fun with it first!
Chris - keep us posted on your heart. Your post prompted me to ask my MO today when my next one would be. He said after chemo (3 months). I wish it were sooner.
Bird
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fireheart: I liked your bunny too! glad you like the pic of my noisy girl. She is Sofia & part Siamese so very talkative. Heres my other Ragdoll, Mocha. Pet pics are good for smile & reminder of life still going on!
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Birdoflight: You have beautiful smile and spirit. Keep smiling!! This is just a bump in the road.
Chemo has done weirds things to my skin, besides dry it out. I have zero body odor, even now that my underarm hair is growing back in. I used to get some adult acne. That completely cleared up after the first two weeks of chemo. I wonder if it is the chemo or my healthier lifestyle choices. Interesting.
jemever: your welcome. Be vigilant with the supplements and the neuropathy is controlled. If I forget a dose it really acts up. MO said to take them for at least a month beyond my chemo.
Last chemo tomorrow. I could dance around naked, I am so happy!!!!!!!!!
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interesting... I have had also noticed a distinct lack of body odour and acne also.
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Katjadvm, yippie!!! Last chemo tomorrow! So happy for you. Ring the bell! 🍾🎉🎈🎊
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Fireheart - I agree with your post about our hair! We are so much more. Thanks for reminding us!
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Bird - You look awesome. I've decided to keep my wacky, spiked, mohawkish look until it's too pathetic to continue. I'm having fun with it and the students I see daily like it. Have a bin of hats & turbans in the waiting. Bought them to look professional, but based on the kids' response I may have to find a way to keep it outrageous.
Katjadvm - Sooooo happy for you to get to the final round. Go ahead and dance around naked. Do it in public. We'll pool our resources to bail you out.
And about that bunny hair wig...I was a step closer last night when Gingersnap and Biscotti decided to empty the living room trash in search of something to play with. Like they don't have toys. *sigh* They sure are lucky they're so lovable.
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Fireheart, I love your sense of humor and positive spirit! You shine all the way to Utah where I live. Keep smiling and sharing. You are a star
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Hello to everyone and I hope you are all coping with the ups and downs of this ride. Today is one of my down days but coming here to read of everyone's latest "adventures" makes me realize all that I have to be thankful for.
Bird - you look fabulous; what a gorgeous smile you have in that 2nd picture. Congrats on #7 done and over.
Katjadvm - so happy that you made it to the last round even with the neuropathy concerns! I think it's interesting that professional boxing matches have a max of 12 rounds - do you think that's how they chose 12/weekly taxol treatment? Just joking
. Definitely clang that bell since you made it out of the ring having kicked AC-T's behind to the curb. fireheart - you are so right that we are defined by much more than our breasts and our hair. Glad your students are having a positive response to your hairdo - I say keep it outrageous
. You must have an interesting household with 6 cats and 4 rabbits! Speaking of cats, we have just one now. She was one of 5 kittens born to a mother cat who somehow made it up to the 3rd floor ROOF of the hospital where I worked to deliver her litter. There were 4 grey ones (3 males and 1 female) and one black - my Rufie (roofcat). We spent several weeks during an incredibly hot summer in 2005 making sure the kittens and mother were fed and watered and gradually plucking each kitten off the roof after they were weaned. We had access to the roof through our conference room windows - that was a sight as we squeezed ourselves in and out of the windows. All 5 kittens were adopted out to co-workers. We also successfully got the mother; she was adopted by another co-worker who made sure she was spayed never to have kittens on a rooftop again.labscientist - thinking of you with the "red devil" A/C combo. I hope you make it through the really crummy days afterwards with not too many SE's. Your kitties will help you feel better I'm sure.
chris8325 - I hope the visit with your cardiologist goes well. Adriamycin is pretty cardiotoxic so it's possible the fluid found in your first ECHO when you started Taxol is the result of the A/C phase. Perhaps they can reduce the taxol dose or stop it for a while if need be and resume later - at least that's what my oncologist said when we discussed possible side effects.
VLH - Wishing you much luck with whatever chemo regimen you decide to pursue. I am curious why neoadjuvant therapy was recommended for you and what factors go into the decision for neoadjuvant vs. adjuvant therapy. Will you also undergo radiation at some point?
My reminder for today and for all of you too:
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hi Ladies, I am new to your group and hope I am in the right place. We met with my oncologist yesterday and he gave me several options .
I have the Her 2 +
Lumpectomy done 8/15 ( 7 mm Tumor )clear margins
sentinel node removed and clear.
Option : Chemo 12 weeks & Herceptin 1 day a week for 39 weeks
Followed by radiation 33 days
Is that standard protocol. Should I do it?
I have a phobia of needles. :-(. Should I do a port. ?
So many questions .. Did any one get a second opinion.
Thanks so much ! Sara
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roofcat: thanks for your thoughts, and I like your simple reminders pic, good word!! We are all strong and courageous!!
fireheart: ok, my phone refused to post a picture, so here's a picture of my ragdoll Mocha from my computer:
So far, so good for SEs after my first A/C. More gas and reflux than nausea but I am making sure to take my zofran ON TIME. Not hungry at all, which is different, but listening to my body what I can eat. Really tired and dried out a bit worse than taxol. One day at a time!! blessings all, A0 -
Hi Sara. You should always get a second opinion and if possible go to one of the top concern centers if possible. You can google the top ten. I has been worth the three hour drive for us to Dana Farber because they are top of the heap and determine my treatment protocols with my oncologist in Maine. Never go by only one opinion. You need to know what grade your tumor is. The higher the grade, the more aggressive, but also more responsive to chemo. that is why I had neoadjuvant chemo. Dana Farber does not typically recommend radiation if you are node negative. Sorry you are in the club, but chemo and the other treatments are doable. Take care and welcome.
thank you everyone for your positive wishes on my final day of chemo. I ate my lobster roll (ate one every taxol chemo session) wore a funny head band and whooped it up with my wonderful nurses. FUCancer!! I got this. Thinking of you all. Fire heart you should totally rock some outrageous, even faux hairdos.
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Roofcat - Thanks for sharing the story of you Rufie. It's truly amazing how our furry friends come to us. And it's cool to know the background of your screen name here. I often wonder about the stories behind the online names people choose to use.
Sara - Welcome to the sisterhood we have here. Glad to have you among us, though we all wish that you didn't need to be here. Katjadvm is spot on about the benefits of second opinions. I think you also have to factor in your own intuitive sense of what is right for you. Sometimes you just know and have a peace...and other times you will have more inner turmoil.
My personal experience in this BC adventure has included both. When I've had turmoil, I have learned that it is best to push, ask the treatment team tough questions, research, seek additional opinions/advice, and generally be an assertive advocate for myself. On the few times when I "settled" for what I was told but didn't feel truly comfortable with it, I realize it was a mistake to not get that second piece of advice or trust my gut. (No regrets because I can't change the past. But definitely lessons learned.) I did get a second opinion early on when it involved the choice to do a BMX. When it came to the specifics of my chemo regimen, I did not get an official second op. I did, however, consult with my BS who is at a different facility and at the top of her field. I also did my own research. Feeling confident that the suggested protocol was appropriate and feeling confident in my oncologist I went forward. That is what was best for me in my situation.
So if you feel like you have any doubts or unanswered questions, definitely get that second opinion. Even if the doctor tells you the exact same thing, that may be the very confirmation you need to feel comfortable with your choice. You may also find that there are other options available to you or that you like the 2nd doc better. A 2nd op also gives you the chance to arm yourself with a list of questions. Ask the ones that have come to your mind since you met with your doctor. Don't be afraid to probe until you have the explanations that you understand. That looks different for all of us. We each have our own ways of gathering and processing info.
I guess I've said all this to say: In the end this is YOUR decision about YOUR body and YOUR life. Do whatever it takes to empower yourself to make a choice you can be at peace with.
Labscientist - Mocha is a beauty. We have had 2 blue eyed kitties. I found with our Siamese mix barn kitty rescue that I could rarely get a good photo of his eyes. They were always red. We now have a Khao Manee (how somebody surrendered a gorgeous pure bred kitty with the heart of a lover I will never understand...but we're glad to have him) and I never have that problem. Wonder what made Koko's eyes do that but Kazimierz's don't. Hmm... Devil kitty? LOL
Well, finished infusion 3 of 12 today. That means I'm 1/4 of the way through the Taxol/Herceptin regimen. Woot Woot! After next week I will be 1/3 done. Felt wiped when I got home. I guess working a half day followed by infusion is a lot for a body. My heart wanted to take a walk on the rail trail. My body wanted to zonk out. The result? Body 1 Brain 0. Slept for almost 2 hours out in the hammock. Woke sweaty and drooling. I know, TMI.
When I woke up I went on a hunt for where I'd put my phone. I have a work phone, so I grabbed that and called my personal line.No sound. Must have turned my ringer down or off at my infusion. Finally found it and checked messages. Gee...I got a call... Hmm...no voice mail... Don't recognize the number. Then it hits me. I looked at the time and realized it was the call to myself from my work phone. HAHAHAHAHA! Old age? Tiredness? Chemo brain? Probably all of the above.
Wishing you all a wonderful weekend.
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Roofcat (your name kept autocorrecting to podcast!), Perjeta is typically only prescribed for neoadjuvant use for early stage cancer. The neoadjuvant use of the Taxotere Carboplatin Herceptin Perjeta combo is considered standard of care currently for hormone receptor negative / HER2 positive cancer. Many oncologists are now doing the Anthracycline-Cytoxan combo before surgery as well, but it's been done post-surgery for years. The advantage with neoadjuvant AC+T is is that the doctor can see whether a patient responds to that particular chemo combo worked. I'm not sure I answered your question. ;-)
I spoke briefly with the oncologist's nurse yesterday. I was disappointed to learn that the order for my genomic test (that will hopefully determine definitively what chemotherapy drugs are appropriate) was intermingled with other papers. She had another call so I don't know what date the order was actually sent, but it wasn't 8/16 as I'd thought. Since the test can take 2-4 weeks and change the treatment plan, I'm obviously feeling a sense of urgency.
Radiation is recommended because of the lumpectomy vs. mastectomy, but chemo is typically completed first. I saw one study that showed a significant advantage to chemo before radiation, but I don't recall if it was a large study across a wide range of patients.
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Hi everyone. does anyone know how long we are supposed to stay on the glutamine after we have finished chemo? I just had my last infusion and have been taking glutamine three times daily to stop neuropathy. thanks, kelly
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