Chemo starting October 2017
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Agatha: TNBC, and my OC has not suggested the chemo pill Xeloda, he did mention two additional chemo drugs he would try if I had no response from the A/C & T. But since we saw a response after just a few treatments, nothing additional is recommended. I was going to ask him on Tuesday when I go for my last Taxol infusion about Xeloda, because I had been reading about it on here. I am like you though, I hate to push it and then have problems with neuropathy, which I have had more issues with after my last Taxol.... I do not want to end up with permanent damage but on the other side, I do not want to have cancer come back. I will trust my doctor's opinion, which has been great so far. Thank you for asking this question, I will look forward to other's responses.
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ABCMom and HikerVA - thanks for your answers. While I know it's better for me to just deal with this all one step at a time I can't help but think about surgery, radiation and then more chemo.
HikerVA - I hope your neuropathy eases up. Are you doing weekly or DD? I totally get the tension between wanted to push treatment but being concerned with long-term SE's. After 2 DD's my neuropathy got pretty bad. My MO decided to switch it up to weekly. I've had 2 weekly infusions now and I'm not sure if it's better, but it's definitely not getting worse. On Friday when I have my exam with MO before treatment she's going to evaluate the neuropathy. I'm hopeful that I can just do one more DD and be done with it.
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Agatha: I have done the DD Taxol, Have one more to go of the 4 treatments. I had no problems with neuropathy during the first two, but about 8 days after my 3rd dose, started having issues. But it may be my own fault, because I have not iced. I will be icing during this last treatment. My issues are not severe, just some numbness in my toes at night, my fingers are still pretty good. I have only had one nail issue, that is with one big toe, the nail is looking partially milky, which is the nail separating slightly, but I have had similar issues with that toe from running, so that does not worry me so much. The numbness is rather alarming though, and I do not want to have more damage. I read more about chemo related neuropathy and one article said that after chemo, your hands and toes need to stay cool for days...to avoid hot baths or showers, exercising etc... I do not know how much of this is necessary... or if it just randomly happens to some of us. That is why I did not ice. I wish my chemo facility had the ice available, like some have the cold mittens and stuff available to patients.
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As I get further into chemopause I am getting very emotional. Like I used to be right before my period. Do you think that’s expected??
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Sara - I do. Your hormones are on a roller coaster ride right now. I'm sure that - although it sucks - it's completely normal to feel emotional. :-( I'm sorry it's rough for you right now!
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I have been crying every day. Think it is all really hitting me.
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Joyseeker - I don't know if it's the chemopause or not, but I definitely feel that "day before my period" feeling where the slightest frustration or sentimental TV commercial has me in tears. I notice it more right after infusions - maybe it's the steroids?
In fact yesterday I was crying because I couldn't find the entrance to a movie theater in a shopping center and was going up and down escalators searching while my friend waited for me. What would usually have us laughing at my ridiculous game of chutes and ladders around the building dissolved me into a puddle of tears instead!
On a positive note I got in 8000 steps yesterday which is a lot for me these days. A lot wandering around that damn shopping center ;-P
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I agree that it's been an emotional roller coaster. I can't believe that it's been 3 months since I started chemo. I am ready to be done. Everyone here is such an inspiration. We are strong we will get through this. Almost there! Taxol #5 today. 49 more days to go
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Taxol #6 for me today. Progress.
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My husband and I went to our lake house for the weekend. It'd been 6 weeks since we've been able to get out there. It was so nice to watch the snow falling, and hunkering down in front of a fire, or doing a jigsaw. Our dear friends came out on Saturday and that was a nice treat, too. The lake house is one of my "safe" places where I can go and walk around bald as a bat.
At the lake house, the light in the bathroom is really good and it appears that I'm finally getting the "white feathers" that people talk about in the Hair thread that precedes actual hair coming in. I'm 7 weeks into Taxol, though 5 weeks into the 25% reduced Taxol. I'm really glad that my hair seems ready to return, though I imagine it'll still be 3 or 4 months before I can ditch the chemo caps.
My fingernails are a wreck. They are brown where the blood has pooled underneath the nail and then white where the nail is starting to lift. I can still do tasks, such as shuffling cards and putting on my bra, but they are definitely feeling the Taxol more than any other part of my body. As soon as I'm done with chemo, I'm going to paint them a color that masks how awful they look.
I had a tearful day on Friday. My husband's uncle died, and I was only able to attend the mass and part of the visitation because everyone wanted to hug me, and I am still on the tail end of this horrible cough, and 2 days past chemo, and I just didn't want to exchange germs. So rather than continue to try and explain again and again, I ended up just sitting in an anteroom and feeling sorry for myself because I could really use hugs right now, but my immune system is struggling already and it's cold and flu season. Sigh.
29 more days of chemo! (5 more weekly Taxols)
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Just finished my morning walk. Inside. -35 here this morning!! Anyone have a constant eye twitch? I’m going on day 3 🤪.
24 days left of chemo.
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LisaRX - My condolences to your family. They aren't the same but I'm sending you a virtual hug.
Joyseeker - I did have eye twitches earlier on AC, but not with the Taxol. I've had them in the past (likely from stress) and my eye doctor told me to drink tonic water - the quinine in it calms eye twitches. It worked for me. Worth a try.
-35 !! I'm cold and it's in the +20's in NYC. How do you get your walk in? Do you have a treadmill? Do you go somewhere to walk? I want to keep my activity up but it's really chilly outside.
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Agatha. I drive about 30 mins to the local Liesure Centre. I walk 5km then have a shower and get ready for the day. A Chinook is blowing in so I should be able to walk outside soon. So cold here. But beautiful. Fluffy snow and hore frost. It’s like a postcard!
Thank for the eye twitch tip!
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Medicine Hat, Alberta Canada -350 -
This morning was blood work and office visit with NP. Don't know my blood numbers as the lab was being slow this morning. I asked about getting a US check up mid way through taxol since 6 times every 3 weeks is a long time. Was told MO usually doesn't do that. I was asked if I still feel my tumor. And I do, I don't think it's changed much since AC. Although with that US after AC was done, it shrunk by 60% (around 3cm to less than 1 cm). But since I was needing some reassurance, my next office visit before chemo will be with MO instead of NP.
Lisa, sorry for your loss. Chemo really sucks when you can't live your normal life.
Today my daughter is off school and I would love to take her to lunch and go to the craft store. But the fear of germs and the flu, is keeping me in.
Agatha, it was in the 20's here this morning and will be cold for a few days again. I can't bring myself to walk outside if less than 50 (our normal temps this time of year). I haven't been walking and gained some weight back I lost when all this started. Too much Christmas goodies and birthday cake! I want to start walking. We have Roku tv and I just put you tube on there, so I can do some of the walk away the pounds. I see they also have daily burn and beach body that are paid services. Don't want to commit to those yet.
Chemo tomorrow. Hoping for no reaction!Since after the last one I was flushed faced and itchy from about 6 hrs after to 3 days. NP seemed concerned about that this morning.
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Hi Ladies, well I've finished Taxol, now on to 9 months of Herception. So thankful that the bad stuff is over. Now just waiting for side effects to ease up. I finally shaved my head. That was horrible. I think that is the worst part, at least for me. Any encouragement? Anyone have any suggestions for hair growth. My friend didn't shave it smooth. Do I need to, or is it ok to have the stubble left?
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Tried to post picture but it didn't come up on thread. I went under inset image and choose a file??? Can someone tell me how to do it...Dang Chemo Brain
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Joyseeker - WOW! you really do live in a winter wonderland. Winter is my favorite season - I love snow. Maybe because it is such a rare joy to have a white, untrampled blanket here in the city -- and I don't have to drive in it :-)
Jennifer - good luck with your infusion - here's to no bad reactions! Thanks for the info on the YouTube channels. I'll check them out.
2brandy - CONGRATULATIONS on finishing Taxol!! I may be able to join you on Friday if I'm able to get the triple dose. Otherwise I'm in for 3 more weeks :-( I just checked and the image insert button is working for me. Maybe make sure the file you are trying to attach has the extension .jpg or .png? I can't insert .pdf's
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Thank you AgathaNYC, I am really excited to be over that part. You are right behind, hang on. Thanks for info about .jpg. I forgot..... Here ya go Ladies.
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2Brandy- I had my husband buzz my head when my hair was falling out like crazy. I never shaved. The short spike buzz hairs came out over time, about 2 months later I am pretty smooth blad. Actually my head is dry, peeling skin and a little irrated now and I have been using skin calming lotion (targets version of euserin) on it the last few daysand it's getting better.
I never noticed those buzzed hairs on my pillow or bed. I still shampoo my head each day and assume most came out in the shower. Now my eyebrows and eyelashes are thinning.
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2brandy, congrats on being done with Taxol. 5 more treatments for me! Your hair should be growing back in no time, no? I think Herceptin thins it, but it's still able to grow... Many people take biotin and use hair growth formulas. I'm not sure if I'll ever resort to that. I'm pretty sure it's going to do what it wants to do when it wants to do it.
Jennifer, I use conditioner on my scalp instead of shampoo. If you want to continue with the shampoo, maybe follow it with conditioner? I don't have dryness issues on my scalp, but that's about the only part of me! My feet are peeling pretty good even though I moisturize them a lot.
Agatha, I, too, haven't exercised in months, since I started Taxol. I'm going to have to get motivated soon because my back is starting to hurt from too much sitting. We must motivate each other because I'm turning into a slug!
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Had my 7th of 12 Taxol today - only 5 more to go. 35 day countdown.
Biggest problem I have is this chronic cough that is now on the third week. Is it chemo cough or some kind of virus? Have reported it to both Mo and chemo nurse but they say there is a lot of crud going around. It was a full house at chemo today. I'd say about half were wearing face masks including me. I barely have a voice, but no sore throat and lungs are clear so they aren't worried.
Met with my MO last week. Love this guy. We talked about surgery. I told him I hadn't decided yet because I haven't had my genetic testing. He is a big proponent of genetic testing and said he normally would not make this recommendation. However, despite the outcome of the testing and due to my strong family history of BC, (both of my sisters got it and our Mom died from it back in '93) he is recommending a double mastectomy and believes I am a good candidate for diep flap reconstruction. Unfortunately, I will need radiation so the deep flap would be performed after that. I was so hoping for immediate reconstruction, rather than delayed.
My MO and Breast Surgeon work together as a team so he will be meeting with her for her opinion before any decisions are made.
I just want this chemo to be over. For me, both AC and Taxol suck. I have been sick in some way, shape or form for the last three months. But MO is "thrilled with progress". He wants an MRI after Taxol and before surgery. He's Having a hard time finding the breast tumor but underarm mass is still prominent. So it's worth it
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Hi, Simbobby. Those lingering coughs can be such a drag. It's great you don't have a sore throat - that combo is what gets me. Thank God for those masks. I bet I'm going to want to keep wearing them way after chemo just to keep germs at bay.
It's good to hear you love your MO. I love mine, too, and I think it's made this whole experience easier for me. As a fellow "big tumor" woman I love hearing that your MO is having a hard time finding your tumor. Congratulations!
Are you meeting with the breast surgeon / plastic surgeon soon discuss if you can get immediate reconstruction? I'm anxious to get going with mine so I can have a firm idea of what surgery is possible and on what timeline. I still don't have a firm understanding on what can be done after radiation.
Stay warm!
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Hi everyone. It's been awhile since I've posted. Every week or so I read through your posts and think I'm going to reply, then I stop myself. I think I've been overwhelmed with just everything this past month.
At the end of November, my dear step father passed. I was fortunate enough to be in a good enough condition to visit him his last few days. Right at the end, his doctors discovered he had advanced lung cancer. He had been in the hospital a full month and one of the things he was being treated for was copd. I will never comprehend how they didn't notice the cancer. I will miss him though my perspective on death and dying has changed and I don't find myself mourning. It feels strange to not mourn with intensity.
I had my final treatment of cytoxan and docetaxel on December 15th. Most of my side effects have gone away. My skin is very slowly recovering from it's leather-like state but I can feel some progress. My wounds are very slow to heal as well. Every now and then I'll sprout a tiny, extremely itchy blister that last about a day. My eyes are still dry at times and one of them twitches here and there. It's lessening. There's just enough going on to remind me that I am still recovering.
My energy level is starting to come back and I finally feel like I can do a few things. My oncologist says it'll probably take a few months to be back to 100%.
My hair, I did cold capping so I've got a good bit left. The top and sides are really thin, the back and bangs almost look normal. I stopped shedding from the final treatment last week. I have new fine hair coming in. It's blonde, as blonde as my bleached blonde before temporary color. I was naturally light brown so I've got inches of bleached blonde, the inch or so of light brown that grew out after bleaching before chemo, and just a tiny little bit of new blonde growth. It's ridiculous and kind of delightful.
Less delightful, my chin hair is back with a vengeance. Oh well. It was nice having a few months off from tweezing. I've also got leg stubble.
Oh, speaking of hair, I just loved this. I was laying in bed topless one night and my significant other reached over to brush a hair off my breast. It didn't brush off so he pinched it and pulled. Ow! That sucker was attatched! It must've been an inch and a half long, right on the top of my breast. I have examined my breasts about 50 thousand times since my diagnosis, there is no way I would have missed that thing! I could envision this one super hair defying chemo and growing with all it's might! I almost felt bad plucking it
I do have one side effect that has not gone, bone pain in my hip and right thigh. Yea, I'm nervous. It's not getting better and may be getting worse. It's hard to tell if the pain is just more apparent as I regain activity and also have fewer symptoms to distract from it or if something bad is happening there. I have a check up at the end of this month and my oncologist said if it's still hurting they'll do some imaging. Trying not to think about it.
I took my first tamoxifen yesterday and will be going in this week to get set up for radiation. I'm getting my first tattoos, three little dots they'll use to line me up. I'm telling everyone they are pictures of the Earth as seen from Saturn.
All the best wishes to you all.
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Jade. So sorry to hear about your step father ❤️
I can understand your anxiety about your leg. I have some vague rib pain I worry about even though I had clear scans three months ago.
Yoga. Restorative class #2 in the books. Eye didn’t twitch the whole time. Back now 😜. Oh the joys..
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The eye twitching has got to be from the docetaxel. Mine is twitching less daily and I don't think it did at all today now that I look back. Short lived
I had some issues with super dry eyes near the end of treatment. Might be good to have sone eye drops on hand just in case.
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KimCee, hope you're feeling better now. I do think that the enormity of what we're facing hits us all at various times. I try to be rational, but there are times when I succumb to raw emotion and cry like a baby. Then I feel better. But grief and fear are quite normal and quite healthy, so go ahead and cry if you want to!
JadeShiva, loved your hair story. Congrats on finishing up with chemo and letting us know how you're doing. Good luck with the hip. It's hard to know where reality ends and paranoia begins, especially since many of us didn't catch the fact that we had breast tumors growing!
I'm getting Taxol #8 today. Gawd, this 20 weeks has dragged! 28 more days til I'm done with chemo!!
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Taxol #3 today. Went completely fine. I'm just tired. Went with my sister-in-law and it was a lot of fun. My husband is good support, but he always needs to sit and work. My sister-in-law and I talked and talked. Then I dozed a bit after getting the benadryl. Then we talked some more and then went to lunch. Now I'm tired. :-)
I get frustrated with the scheduling at the center. I just spoke with an office manager about it and yet I waited a while today. When about 5 people that came after me got taken back, I checked in with the desk. The scheduler isn't very good and she checked me in (which isn't normal procedure - usually there is a check in person). The check in person asked, "Did you check in late?" I said no and she said she would figure out what was going on. So then I asked the MA if the scheduler had forgotten to check me in. She said no, but said that all the people who went before me were seeing the doctor today and I didn't need to. Which I totally get, but then don't stinking schedule me at that time then. Schedule me 15 min. later for pete's sake. They do stuff like that all the time and it's annoying because it wastes so much time. Oh well. I should just let it go probably.
The cough has gone away for me. A lot of side effects have gone away. My appetite, taste buds, and a tiny bit of nausea still hang on. Dry skin and dry eyes. But the achey pain was much better after treatment 2. I hope treatment 3 is the same. Oh....and my eyebrows have SERIOUSLY thinned out this week. There is still some there, but not like it was even a week ago. :-(
After getting done with AC, my BP has been horrible. It hadn't been great before that and my primary was going to fiddle with my meds after chemo. During AC, my BP was lower and beautiful. I've read that online, but my MO said there isn't any "precedent" (or something along those lines) to show that AC lowers BP. I was like....uh...ok. Since I stopped AC, my BP is not good. They said today to start with primary and she would rather the MO do it, she can. Hopefully, we can get it under control.
Jade - I understand being overwhelmed...reading and not responding. It definitely can get that way. I'm sorry about your step father. It is interesting how the Cancer Perspective can change our view on things. Funny about that hair. I had one of those before treatment. I'll be interested to see if it comes back!
Sara - Systane Ultra is the kind of eye drops recommended to me. They helped some. For me, the biggest help was my protective eye glasses. https://www.zienaeyewear.com/collections/verona/pr... I have a pair of sunglasses with these cups too (because I have bad allergies and baseball games were killing me!) and I love them. I got a pair of clear "indoor" ones for my birthday and they have stopped my watery eyes so much better! They hold in your natural moisture and block breezes and irritants. I can also see, thanks to the cups, how much my skin flakes off into/over my eyes. That had to be irritating too. I am thinking about going to a local place and trying on this other style of sunglasses. I meant to do that Monday or Tuesday, but the -30 wind chill kept me home!
Lisa - #8 - You are getting sooooo close! Hang in there girl!
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Petey - Thanks for the link to those glasses! I've never seen anything like them. I bet they'd really help me when my seasonal allergies set in. Right now dry eyes aren't that big of a problem. Dry nose, yes! Thank God for humidifiers and NeilMed.
I've been having a hard couple of days. As I get closer to chemo being done I'm starting to get scared that it hasn't worked as well as I needed it to. I try to not go too deep down internet rabbit holes but I've been reading too much about triple negative BC. Need to stop that. Ever since I found out that my tumor invaded more into my pec muscle than I was originally told by my ex-BS I haven't been as confident in my progress. Nothing objective has changed about my situation, just my perception of it. I know fear won't help me; I just haven't been able to shake it the last couple of days.
Is anyone else feeling the end of chemo shakes?
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Agatha, sorry that you're getting scared. Joan Lunden speaks of the end of chemo shakes in her book. She said that intuitively, you'd think that you'd want to celebrate being at the end of chemo. But in reality, it was more sobering than festive. She said that she felt really anxious not having constant interactions with doctors and monitoring of her blood counts, etc. So I think your reaction is very normal. I akin it to jumping off a diving board into a pool whose depth you don't know.
At the end of the day, all we can do is trust medicine and God and take good care of our bodies. And quit cruising the internet! That information is several years old and not helpful to our psyche. The mind is very, very powerful, so only feed it information that will help you fight!!
Petey, I'm going to my local university (teaching) hospital to get treatments because the hospital is literally 10 minutes from my house. So convenient. But I have the same frustrations with their protocols. My infusion lasts exactly 1 hour. But it's not at all unusual for me to be at the hospital for 3 1/2 to 4 hours. It's such an inefficient system. I've learned to not let it bother me. I take my ipad, my Kindle, a puzzle book, and my phone and just chillaxe until the procedure is done. Many patients take the opportunity to get a good nap in. No sense beating your head against the wall when it's clear that they have zero interest in being more efficient. P.S. I do think that other hospitals have much more sophisticated systems than mine. I chose based on convenient location. If I were to choose again, I might do more research and choose one that valued my time more.
So I had #8 Taxol today. 4 more to go. I saw my NP in the infusion room and we chatted a bit. I told her that I'm doing fine physically now that I'm over that awful cough, but that I'm getting weary of how long treatment is. She said that she hears that from all her patients and it's usually around treatment 10 to 12. She said that in the beginning she doesn't emphasize how long it is, but by the end, everyone complains that 20 weeks is a really long time.
And speaking of that, how is Julia Louis-Dreyfus already done with her chemo? She was diagnosed the same week I was and I still have a month left. Good for her, but no fair!
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