Chemo starting January 2019
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Hi Alden722, yes I’ve switched (have had 3/12 Taxol after 4 AC) & am finding it much easier (apart from an allergic reaction week 1). Like you I’m mainly just TIRED. Also a bit achy around day 3, and have nose sores - but it’s nothing like AC.
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Alden, I’m the poster child for nasty Taxol SE. I’ve had many of them. I either caught a bug or had a bad nausea reaction after the first one and ended up spending the weekend vomiting after the first one. Also got a red sunburned like reaction and super high blood sugars. Round two went slightly better, they gave me extra anti nausea meds and so wasn’t violently ill this time. I still got the red sunburned look although it only lasted a day and sugars didn’t go quite as high. I am super tired and have soul crushing bone pain days 3-5. I am keeping going and push myself to keep doing things but Sunday I never got out of my pjs! I keep telling myself only 2 more since I am on the dose dense version. This too shall pass!
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Only two more is awesome!
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Hello! Its been a month since my last infusion today. While I am happy about this its been a struggle. I developed fluid retention 15 days after. Left foot and ankle was worse than the right. MO sent me for an ultrasound to make sure I didn't have a blood clot in my left leg. I didn't. Worst part is the muscle pain. I feel like I have worked out for the very first time. Everything is tight and sore. MO says the fluid retention will eventually go away. However, as of today I still have it and its worse when I sit for a longer period of time. MO is leaving it up to me if I want a diuretic but I am trying to push through it.
Otherwise, still dealing with fatigue which is par for the course. Taste is back. Meet with the PS tomorrow to schedule surgery for reconstruction along with ovary and port removal. Started Tamoxifen and baby aspirin last Saturday as so far no issues. I did have to stop my Busiprone at night as this was causing hot flashes! This was before I started the Tamoxifen.
Hope everyone is well!
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Jenkins00,
Funny you should mention fluid retention. I am four weeks past last chemo as of yesterday, and although I've had some fluid retention in my ankles since #2 or so, my right arm (surgery side) got really tight as of yesterday evening, first time I've noticed it in my arm. Pretty significant pitting. Unfortunately, I had my first follow-up appt with the MO yesterday morning! So now waiting to hear back from her about this development. Have you - or anyone else - had any late-surfacing fluid retention in your arm? What is being used to deal with that? The PA yesterday only said to keep an eye on the ankle situation, but it is not as bad as the arm...
Otherwise, I'm feeling pretty good. My watery eyes and nose have dried up finally, and I think I may be able to wear eye makeup again just in time to start radiation treatments next week. Woohoo!
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Well I ended up having the full blown allergic reaction to Taxol, so I am not on Abraxane (which is essentially the same med). Thankfully the side effects haven't been bad but I have pretty much had a cold off and on for over a month now and its rearing its ugly head again and I'm running a low grade temp. Hopefully I am ok by tomorrow morning so I can get my treatment and stay on track.
Hopefully those of us still doing chemo are doing well! Almost there!
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hi all!
I am 1 week post last Taxotere/carboplatin dose. Still tired, but improving. Eagerly anticipating hair starting to grow and eyes and nose stopping running. Wondering if I will yet lose my eyebrows, they are mostly still there. Some pins and needles soles of feet at night...hoping that resolves. Still have the Herceptin till December, but everyone says that is easier
Meeting with radiation oncologist Friday, so hoping to get that behind me by end of May. Anyone doing radiation now, any advice?
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Kaylajane, congrats on finishing your chemo! Woo hoo! Looks like we have very similar Dx and treatment, you’re a little ahead of me. I have round 5 of 6next Friday, so I expect I’ll be starting radiation around mid-June. I had my consult with my RO today to learn the basics, so I’m interested as well in hearing any advice.
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Congrats kaylajane!! I have #3 of 4 Taxol tomorrow. Can’t wait to be done in two more weeks!
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I’m so jealous of those who’ve finished chemo (though it certainly doesn’t sound like any of you are having a walk in the park!). Congrats & wishing you strength for the next step in your treatment / recovery. I’m going in tomorrow for #5 out of 12 weekly Taxols & it’s beginning to feel a bit endless. My body is getting quite run down, I’ve spent the last week with a cold and am on antibiotics for an eye infection and have developed chemo rash especially on my face.... I just want the chemo to be over!
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B74– it’s interesting you mention chemo rash. I have Rosacea, but it hasn’t been an issue but the last week I have had a terrible breakout/rash on my face. I will be sure to ask my doc today if she thinks it is a rash from chemo or Rosacea and if I should do anything different to deal with it! I also agree with being jealous of those being finished, however in two weeks I will be done and do not have radiation afterwards and already had surgeryso hopefully I will start healing and feeling better.
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KaylaJane, I finished chemo on March 21, and just had my first radiation treatment yesterday. There is an April 2019 Radiation thread which I have been reading and there is plenty of good info there too. As for me, the only thing that seems different for me than from many others I've read has to do with the marks they make on your body to guide the machine. The tech drew on me with some kind of Sharpie pen and then covered the marks with a very thin, transparent sticker similar to what was used on my incisions right after surgery to keep water from washing off the marks during a shower. That's all well and good, but because they are there, I cannot apply near the stickers the Aquaphor that was recommended to keep the radiated skin hydrated. So I'm concered that I will get more irritation than I would otherwise. I'll be posting this on the other thread, too, to see if other fellow travelers have any advice.
B74: I had a rosacea type reaction on my face around treatments #2 and #3. My skin became inflamed and then extremely dry on my cheeks, so bad that my usual facial moisturizer had no effect at all. So I tried using the CVS store brand of Cetaphil and that worked great, though it felt rather thick on my face. In just a few days, the intensely dry and flaky areas had pretty much healed up. I've been using the same lotion on my face since then during #3 and #4, and the dryness and redness never came back at all. I plan to keep using it until the radiation is over, and then return to my regular product.
And lastly, my MO had me do an ultrasound of my right arm, the one with the edema, to rule out a blood clot. I had that done yesterday and hooray! no clot! But now she's referring me to a lymphedema specialist to see if that's the problem. You think you're done with chemo, but it just keeps on giving...
Good luck to those who are still braving through this stage!
Anne
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B74, it does seem endless, doesn’t it!
Does anyone else use a Fitbit? I have one that tracks my resting heart rate, and each chemo cycle, it rises to a peak about 11 days after dose, then falls, but never to where it was originally. This morning my resting heart rate is 84!! Highest ever in my 4 years of fitbitting. No wonder I feel crappy—that is not very restful! I try to laugh when I come up from the basement (laundry) and feel like I’ve run a 5K—but jeez, I feel like I’ve aged 10 years in the last 4 months.
Here’s to resting heart rate going back to more normal 60s!
PiperKay, I go for my radiation prep session today. I am hoping they use the sharpie rather than tattoos for my spots. I don’t desire any more permanent reminders of this experience.
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Kaylajane, I haven't been using my fitbit during this whole thing, but I have measured my heart rate on occasion using an app on my phone and where I used to have a resting heart rate in the mid- to upper-60s, I am now regularly measuring in the low 80s. I have been attributing this to my relative lack of exercise, so I'm trying to get back some stamina now that chemo is over and radiation has begun.
And I am not complaining about the use of the stickers instead of tattoos. Like you, I already have too many permanent reminders...
Happy weekend everyone!
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kaylajane I have an Apple Watch and my resting heart rate would go up to as high as 110 for a couple weeks after each round. The last round it was still up a couple of times during week 3. My MO said as long as I didn't have other symptoms such as dizziness I was ok. And my heart rate is on the lower side so I was surprised when the heart rate kept getting so high. As for the tattoos for radiation I have mine from 15 years ago and felt they were always a reminder of what I have overcome. They are so tiny and small I very rarely notice mostly just the one that is in the center of my chest. Over the years it has faded so much it is almost like a tiny mole.
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To those of you watching your heart rate with your fit bit I have noticed my resting heart rate has gone up, and i typically run in the 120's when doing anything mildly active. My Onc attributes this to my body compensating for being anemic. Hoping as I progress with the Abraxane the anemia will slowly improve.
I have 8 more Abraxane treatments, it does seem endless, and then I get to go to surgery in July for a double mastectomy and tissue expanders, and then surgery again in November to put in the implants....they told me it would be a year and they weren't kidding!
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Alden,
How far up did your resting heart rate go? My peak was 85 eleven days after taxotere/carboplatin #6.
Rrshannon’s went up to 110!
I do notice on our usual dog walking route, there is one slight hill where heart rate normally goes to 120, 2nd week of chemo cycle it can hit 170! It may be anemia. My hemoglobin was 9.0 at last infusion.
Looking forward to going in next week for Herceptin only! Yay! Won’t I be surprised if Herceptin has noticeable side effects
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Hey y'all! Just wanted to report the emergence of some noticeable peach fuzz where my hair used to be and this sighting has been confirmed by more than one third person so it's not just my imagination. Last chemo was March 21 which makes this just short of six weeks out.
Other good news: Nose and eyes have stopped dripping like sieves, hooray!
Hope the rest of you are experiencing some good news of your own and continue to do so!!
Anne
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Anne,
Your nose and eyes stripped dripping, hurrah! I’m 3 weeks behind you, cannot wait
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Hello! I hope everyone is doing well.
It will be 8 weeks on Monday since my last infusion. Fluid retention has resolved. Hair is starting to grow back. but I have lost most of my eye lashes and eyebrows. It has been fun trying to draw brows. Takes me longer now to get ready. My finger nails are a mess. Bumpy, peeling and just thin. Overall my strength is slowing coming back. Walking 30 minutes a day but I can't walk and talk still. I get out of breath.
This month has been full of appointments and surgery is set for July 24th. In the meantime my hubby and I have booked a few weekend camping trips and looking forward to getting away.
Take care! Happy Mother's Day.
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hi Jenkins! Glad things are moving forward! My last infusion will be in 2 weeks, so it’s nice to hear from someone on the other side. I haven’t completely lost my lashes and brows yet but I’m sure that’s coming. I hope the SEs continue to fade and you get your strength back soon. Vacation sounds nice, and well deserved!
I had my usual “bleh week” following my r5 infusion on 5/3, but this time the fatigue was significantly worse. I felt like I was hit by a bus all week, could barely do anything without being exhausted and out of breath. I called the nurse yesterday and she had me come in for an infusion of fluids and steroids, and blood tests. Seems like I was mainly dehydrated. The lab work didn’t show anything concerning, and I feel soooo much better today. So hopefully I’ll be back to semi-normal for the next 2 weeks, then get that final round of chemo behind me and move on to the radiation.
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Kathy,
I also had Taxotere/ carboplatin/ Herceptin, final dose of taxotere/ carboplatin was April 16. I still have eyebrows (lost some of lateral brow) and thinner eyelashes, so MAYBE I will keep them. 2 eyelashes did fall out this morning, so maybe not?? But it has been almost 4 weeks now.
Those last 2 cycles were tough! I still had some insomnia and GERD after the Herceptin only infusion 5/7, but overall energy level is improving. My oncologist said he tells people it will take twice as long as the chemo to feel back to normal..... so that will be November! But I already feel some better.
I've started radiation. 4 ;out of 19 done. So, I suppose the fatigue from that will kick in sometime next week. Always something fun to look forward to.
Every morning I pet the stubble on my scalp and imagine it is getting longer! Mostly my imagination so far, but soon, it really will!
PiperKay,
How is your radiation going?
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Hi KaylaJane, I'll be having my 14th radiation treatment today and things are pretty good so far. I'm a little red in places, but no pain, blistering or anything like that. I've been using the Aquaphor and keeping a positive attitude. I've also not suffered much fatigue, thankfully. Evenj etted off to Chicago over the weekend for a family event and to see Hamilton. What a show! Surpasses all the hype and took my mind off this thing for three hours. Perfect!
Petting the stubble is a thing! I do it all day trying to see if it's getting any longer, and it is!
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Hi All! Greetings from over two months post-last treatment. Hair is growing in pretty well - interesting to see the colors, very dark brown and gray evenly distributed on the top mostly, but grayer on the sides. Can't tell whether it will be curly or not, just too early for it to be bending at all.
Something I thought I'd avoided, though, has shown up. Discolored fingernails and toenails. Not too bad, but certainly noticeable on close inspection. Interestingly, my left foot showed it the worst though it was my right pinky toenail that came off very easily with just a gentle nudge after I realized it was detaching from the nailbed. Despite this, it looks like all nailbeds are healthy as the nails grow out, so I'm not concerned. I'm just covering it all up with nail polish!
Judging from the lack of active discussion, I'm hopeful that everyone has come through their chemo cycles without too much continuing adversity. The body is a wonderful thing and apparently can withstand a lot of misuse - cutting, poisoning, radiating - and bounce back relatively well.
I finished my course of radiation last Tuesday, and now, with triple negative BC, I am done with all treatments. Fingers crossed that all that abuse did the trick and annihilated that sucker for good.
Best of luck to everyone who continues with additional treatments, hoping you all fare well!
Anne
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Hi PiperKay! Thank you for the update. I’m in the February group, but have been watching this board too. Glad to hear you’re on the other side of treatment. Can’t wait to be there myself one day. My diagnosis was +++ so there’s quite a bit of road to cover before the finish line. Nevertheless, wishing you a long, happy, healthy life
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PiperKay, I’m right behind you on radiation. One more to go Monday...the rad therapist callied me a short timer when I left yesterday. 😀 so far, skin has been well behaved...waiting to see what next week brings
Paloma, Triple positive here, so still doing Herceptin for another 10 doses (that is so nice, the Herceptin only infusions, in and out), and start Arimidex next week. Curious what that will be like.
Hair just starting to grow back...I’m impatient though! Pins and needles in soles yet, but energy level approaching normal, which is wonderful, since being able to garden brings me such joy. Stamina not quite back to normal yet.
Feel like I’m emerging from the tunnel, but wondering what life with Arimidex (and without that endogenous estrogen) will be like
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I also have hair returning.
I had some bumps in the road during my surgery and had some adrenal issues, still on meds for that but starting to feel myself once again thankfully as I had a busy week this week back to work full time and my daughters high school graduation. I am going back in for more reconstruction in a couple of weeks. Started my Ai, Letrozole, 3 weeks ago and so far so good. I also have the beginnings of lymphedema so I have been going to PT. Looking forward to a short trip with my daughter and mom before my upcoming surgery.
Hope everyone is doing well.
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Paloma - Thanks for the good wishes! I plan to make them come true!
KaylaJane - 13 days out and have some minor, very thin peeling with just healthy looking skin beneath. Looks very weird because what's peeling off is very dark and it's very light underneath. Certainly glad it's not Mardi Gras time because I'd be unlikely to earn any beads by flashing these mismatched girls! Lol! (JK, I wouldn't do that no matter what!)
rrshannon - I've got some early stage lymphedema, too. After seeing the PT and getting a compression sleeve and glove and wearing them during all waking hours for 2 weeks straight, I went from a 12% size difference between my arms to only 5.8% difference. So I can say that if you're supposed to wear them, know that they work! I now am allowed to keep them off during times when I'm not stressing my affected arm too much, but to definitely wear them when exercising or doing more strenuous activities or when out in the heat.
And just as a general update on the fingernail situation, the nails of my left index and middle fingers are definitely loose toward the tips, much more so than is normal. I am wearing bandaids on them just to make sure I don't bump them too much. They're not in danger of falling off, but if I knock them around too much, I'm afraid I could pull them up too far and rip some skin underneath. I'm also keeping the nails as short as possible for the same reason.
And finally, my MO had made an appointment for me to have my port removed last week, but apparently had not consulted with the surgeon, because when I arrived all excited to have that @#&* thing taken out of me, the surgeon said no. She didn't want to open the incision again this early in the summer so that I could feel free to be outside, swim, etc. without fear of increased infection risk. Boy was I disappointed. So now it's scheduled for September.
Have a good week, all!
Anne
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I thought I made it safely through without losing any nails but so far lost four finger nails with new ones coming in very short. I think at least one toe nail might be going as well.
All the other fingers look like they might come off as well. I also cut them all very short in hopes as to not bump them.
PiperKay sorry about the delay in your port removal.
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