Weekly Taxol group
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My head hurt each time before a major hair shed. I went through three major sheds, twice on AC and then once a couple of weeks into Taxol.
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Hi Nina,
My head hurst every week, but only started really hurting a few weeks into things. By 5 or 6 weeks (end of Oct) it was really bugging me. I had short hair but relief came when I shaved. I do get tiny aches throughout the week but not waking me up at night. I think my hair is shedding and growing at the same time… but even though I have stubble I would be very thin if I had kept my hair.
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Hello all! It looks like those that posted had a good Thanksgiving. Yay!
I'm going to do a two weeks tomorrow post Taxol update for you all. The one thing that I feel fortunate for is the fatigue is starting to lessen. I had 4 days off this last week and I slept until almost 11 am. NOT normal for me at all in many years. I did wake up those days at my normal 6 am, but for some reason was able to go right back to sleep.
My taste is still off, but improving. I could only taste sour while on Taxol and it is improving even though it's not back to normal yet. I also lost 2 pounds this last week. I had told my friends I was ready to deliver my chemo baby as in bloated stomach which I assume is from the steroids I took for so many weeks. My face is still quite full looking and that will probably take more time to leave. I was overweight when I started this cancer journey, so I have plenty to lose.
Bloody nose is still happening, but not as bad as it was two weeks ago. I hope it completely stops soon.
Neuropathy, yep. Still there, but not as had as before. Fingertips are still tingly, but not quite completely numb as they had been, Feet are both still feeling it and I've been having some weird shooting pains through them. I just keep imagining that those are my nerve endings trying to come back.
My eyelashes are returning! Yay! This was a big one for me. My hair loss on my head was traumatic, but my eyelashes were worse for me. I have a few on each side and they just joined the party this last weekend. I hope that they continue to come back.
So, that's about it folks. Improvements in all areas as far as I'm concerned.
For those of you still on this Taxol train, you can do it. It will start to build in your body, but it will get better, too. I promise.
If anyone has any specific questions, I'm happy to answer.
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KotchAJ I appreciate your update sooooo much! Thank you! I get dose #11 tomorrow.
I think my neuropathy went away after dose 10 breifly bc of the steroids but my hands are feeling the neuropathy for sure now. Feet are still ok. I had lots more nausea this round and I’m wondering maybe it’s the Herceptin. It was very sporadic and very manageable still, but usually I have mostly none. I wish I would have tracked symptoms according to taxol with herceptin vs just taxol, but I didn’t think of it. Port rash though is officially gone! So that def wasn’t Herceptin. Haha. Now I won’t have to make them yank it when I go for surgery!
Im up a wee bit in weight. Hovering 1-2 more pounds that usual but not concerned. Period is still MIA. 50 days since my last cycle. I wonder if my body’s prepping for one? I usually gain weight and eat more the week before my period. I def feel physical and emotional symptoms I get before a period. Not sure if anything will become if it. Guess we will see. I’ve been super hungry this past week. Pimples are worse this week then normal too. Usually they subside by Mon but I still looked like teenage today.
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1982-
You are almost done!! Congratulations! I'm already through menopause, but man do I remember that feeling before my period would start. Not fun. Of course, the only fun part about any of this is being able to connect with others that are going through it and understand it
I do feel very thankful and grateful for this site.I will say that first Monday after I was finished, when I would normally go in for bloodwork before work felt weird. I felt like I was missing something. I did go in on Tuesday over my lunch time like I used to when I would get my infusions, but it was to drop off a cake for my nurses there. They were surprised and I told them I'd miss seeing them each week. They were all so good to me. It felt weird to not have to stay there for an infusion! I got over it quick, though, lol.
My husband picked up something for my neuropathy called Nervive. It has B1, B6 and B12 in it. I've been taking it about a week now and honestly not sure if it's helping or just not being on the meds anymore is helping, but it might be something to look into? I'm sure there's a million and one things on the market for this type of thing.
Happy Tuesday everyone!
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KotchAJ, we are on the same schedule, and it is funny to me that we both could only taste sour - actually, sour was the only thing I could enjoy really. Mostly everything tasted bitter, and now 13 days past my last taxol, today, FINALLY, my coffee tasted like coffee and not penicillin, and my lunch tasted like fish, which it was, and not penicillin. It was so NICE!
My skin is still a little blotchy, but improving daily.
Neuropathy - definitely improving. Fingertips are still numb; my feet are still a bit wonky; right forearm is still numb, but I'm not falling down, and my coordination is much better. Exercise helps a lot, and I've been taking B vitamins and Norwegian fish oil, which are supposed to help, too.
Hair - still don't need to shave legs or armpits at all. I cannot see that anything is really regrowing for me. Actually, leg hair keeps trying to regrow, but it all washes off in the shower still.
Energy - I've also noted the need or ability or both to sleep lots more. Slept til 8 or later every day this past long weekend, which is bizarre for me.
Overall, though, I'm feeling much more normal. Everyone still stuck on this garbage for the 12 week protocol, it does end, and so do most of the side effects, I promise. Hang in there.
Got my radiation tattoos today, so here comes the next phase. I have 2 weeks to myself before that starts, and I'm planning to take advantage of them as much as possible.
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Just to update, they did completely stop my Taxol because of what I would call mild but persistent neuropathy. She said because I can feel it all the time, if we kept going it would definitely get worse and it isn't worth it.
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Thank you for the update. Im glad there on top of it for you. Everyone else's MO seems to be very concerned about neuropathy, mine doesn't seem overly concerned. Maybe bc I'm still mild? I definitely felt it progress this week. Im getting #11 today and will chat with my nurses too about it more.
How are you feeling gb2115? Happy? I guess you are now done? Perhaps complex feelings about it?
Thank you AGM for the update on post taxol life! I really love those updates bc it gives me some goals. Weirdly, my taste can be impacted for a day or two but really I have pretty good taste buds still. The worst was the first week and I couldn't taste anything. I have gotten wee tiny sores very transiently, but otherwise my mouth has held up really well. Nausea has been a bugger for me for this last round. It comes and goes, never so bad I throw up.In four hrs I'll have only a single taxol left. I'm very relieved about that. I find it ironic that my middle finally was eligible for a Covid vaccine and he will be exactly two weeks post first immunization when I finish chemotherapy. A little ironic. Lol.
I’m desperate for more sleep but with my littlest, who is four, it’s just not possible. I try and try to nap and can’t unless it’s a chemo day. The Benadryl helps. She started waking up at night again. She just started sleeping in her own room and through the night just before I was diagnosed with cancer. This last several weeks she’s been struggling. Trying all sorts of bribes- mostly I’m using TV. If she sleeps through the night she gets TV. It worked a few nights ago, but not last night. Sigh…..
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Hey AMG2!
Congratulations on getting through the chemo! The sour thing was just weird. My coffee is tasting weird still, but not as bad as before. I have noticed that I can no longer tolerate the Starbucks Christmas blend:-( It was my favorite for the holidays, but it smells absolutely horrible to me and the taste is off. I think that will be something I'm now officially done with forever. Oh well. If that's the only thing not so bad.
I go to the surgeon tomorrow afternoon after getting another mammogram and US tomorrow morning so he can decide what surgery to do. Since they found cancerous cells in two of my lymph nodes, I will be getting radiation, so please keep posting so I can know what to expect next. I think that it is so helpful to hear from others.
I've been given 4 weeks in between chemo and surgery and I'm so thankful for that time.
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1982M---I am done, but not very happy about it. I wish I had been able to finish. I think if this were my first cancer, it might not bother me as much, but because this is a locoregional recurrence, it does have me concerned. Also, it's propelling me very quickly towards my ALND, as well as Zoladex injections, both of which I'm very nervous about. I'm not ready for all of it mentally, so yeah, not super excited.
I guess all the docs are different with their approach. Mine was adamant that even though the neuropathy is mild, because I could feel it all the time she was concerned. I guess some people have symptoms that come and go? I am relieved though, that they're not sending me headlong into severe neuropathy. I like to go for walks and do crochet, so that would have put a dent in my hobbies.
Also, it will be nice to not have the port stuck anymore (she said to have the surgeon take it out during the ALND). I will finally be able to go out and get a prosthesis and bra. I haven't bothered because my port is prominently right under where a bra strap would go, sticks out terribly, and stings to the touch half the time.
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gb2115-I'm sorry to hear your suddenly finished, especially with a recurrence. I can see why you wouldn't be thrilled about that. I hope your neuropathy heals
I asked the nurses today when it's considered a good idea to stop/dose reduce and she said it's pretty individual and up to the patient. She said generally is I can't do up my buttons or loose strength.
Mine is intermittent. There are days and times I don't feel it and days and times I do. I've had a few tingles in my feet but almost none, pretty rare. Hands come and go. Guess I'll just carry on since I'm done #11 out of #12.
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1982, so yours is intermittent. Mine has been constant, but it's tolerable. I have slightly numb fingertips, but the bottoms of my feet feel prickly when I walk or touch them. At rest I don't feel anything. I think if my symptoms were intermittent they would have carried on. She asked me multiple times about whether or not it was constant!!
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Yeah, I’ve noticed particularly after chemo it’s gone for a few days and then comes back. I’m thinking it’s from the dexamethasone though. Unless it gets really bad this week I’m going to push on with only having one dose left. I still have muscle strength and can do up buttons and tie shoes etc. I hope that’s the right choice! I would hate to have permanent issues.
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Just had Taxol #7. This week they tried starting at 1/3 the normal rate and slowly bumping up every 15 minutes to see if that helped the rash/hives. It did! The rash still happened but was noticeably milder. Also no heart pounding or doom feeling. So I guess we're going to stick with this. It added 30 minutes to the infusion but that has been happening anyway from every time we have to stop and watch and restart, so whatever.
ANC dropped to 1.3 this week, from 1.9 last week. Hoping it plateaus or there might be a problem next time.
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Yay gamzu710 !! That's great news that the slower rate helped. So glad to hear that. Every week seemed to be something different on Taxol for me. On AC I could kind of track my symptoms, not so much with Taxol.
I'm so glad that this is helping. You're more than halfway through now.
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Gamzu glad to hear the slower rate worked!
I'm two days post dose #11 and now that my port rash has finally healed I have a rash under my right butt cheek. I noticed one bump yesterday and I thought it was part of my steroid induced teenage acne, but now I have five more hive like things developing. It's a bit itchy but not overwhelming. I'm looking forward to being overall less rash. My eyelids are sensitive too. They are red and slightly swollen. Not overwhelming either but noticeable to me. I just keep telling myself one dose left!
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gamzu, I'm so glad you got some relief!
1982M, my pattern was the same for coming and going with neuropathy, with it being mostly gone while the dexamethasone was in effect, then very present once it wore off, and I did have significant weakness. At two weeks out, I'm mostly back to normal. Still a little weak and wobbly when I'm very tired, but my feet are otherwise ok. My fingertips are still quite numb, and that was something that came at about week 6 and became persistent. Stuck my index finger in boiling water 2 days ago and felt nothing at all. (It's fine! I figured out it shouldn't be there before anything too bad happened). It's an issue that I hope will resolve.
Hair report: still no sign of significant body hair return. Eyebrows are still thin, but I started with ferocious eyebrows. Eyelashes never left and are still there.
Taste: I am REALLY enjoying eating!
Rash: fading. Chest and back are normal finally. Face still has some residual issues. I hate the rash.
Nosebleeds: gone, thank heavens.
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I've been posting in the November chemo thread and not here, but wanted to jump in RE reducing the dexamethasone—my treatment team was willing to swap it out at my request for another, shorter-acting, steroid, because of the severe mood side effects I was experiencing. We tried reducing it, but it didn't help; we tried eliminating it, but I had an allergic reaction.
I can never remember what the new one is called (yay, chemo brain!), but it clears my system within 24 hours. Then I start vomiting, right on schedule, but I'll take that over mania any day. Nothing's perfect.
So do ask if there is an alternative, if you are willing to accept some trade-offs.
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Roo, I'm so sorry you've been dealing with the dexamethasone roller coaster and nausea and vomiting. I'm glad you at least got some relief from the roller coaster, but vomiting, ugh. The 2 day mania followed by extreme sadness on days 3 and 4 following taxol really were a pain.
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Yes, definitely a downwards mood swing on days 4 and 5 with this new steroid. Knowing that it will dissipate by day 6 helps. The agitation from the dexamethasone was unremitting and getting worse and worse, and weirder and weirder, so I am happy with my "bargain".
(I'll admit that, while I'm very thankful for the less severe side effects of the weekly protocol, the short cycle is a pain.)
On the plus side, I ended up with 3 kilos of homemade glacé cherries, candied citrus peel, and brandy-soaked raisins for Christmas cake, made under the influence of the dexamethasone. I hope my MO likes Christmas cake, because he's getting some. Maybe a slice for the pharmacist too.
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Oh Roo73, that rollercoaster sounds awful! I’m so grateful Wed is my last chemo and last dexamethasone.
Also, I laughed out loud about your Christmas cake comment. To funny.
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1982M, I'm thinking of you today for taxol #12. Hope it goes smoothly, and congrats on being over and done with that garbage!!! Hope you're feeling better and rash free very soon. I'm in the chair awaiting my first herceptin only infusion, and it feels so much better to not be dealing with dexamethasone and all the SEs that go with taxol. We shall see what herceptin alone is like.
Take care and big hugs to you!
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Thank you so much AGM2! I just started my dexamethasone. The nurse today is so very friendly, which is nice. I can't wait to not have to arrange rides and bring all the ice protocols!!!
I am feeling more tired this week then normal. Yesterday and today I felt very exhausted- hard to do the walking I usually do. Blood work though is good. Leukocytes, lymphocytes, and monocytes all low but nothing concerning low. Neutrophils are hemoglobin are fine and basically fine the whole time!
Neuropathy is less tingling and more numbness. It is generally fine a few days after treatment and more prevalent the days after.
I still have the rash under my butt cheek, but it's healing. Not very bothersome though anymore. A wee bit sore but only if it rubs on cloths. More good excuse to wear jogging pants! Lol.
I met the plastic surgeon and breast surgeon this week. Struggled a bit with it all. I don't feel like I have great options. I prob am going unilateral mastectomy with implant based reconstruction since I don't have tissue for a DIEP. Although I really wanted a re-excision and a oncoplastic reduction, they don't have a good way to mark the tissue for boost radiation. I asked specifically about how the radiation oncologist and breast surgeon oncologist communicate from surgery and they said they don't. They don't put clips in, they don't communicate. I don't feel ontologically safe with that choice bc of my age and Her2+.
The breast surgeon told me that my survivorship plan includes MRI q12 months and mammogram q12 months for the rest of my life if I keep the other breast but could re-evaluate if my breast density changes. Not sure how I feel about all of that. My husband thinks the double mastectomy is the best choice. Im not so sure. Im thinking unilateral and see how I feel going forward and then doing the other later potentially.
Im super happy to be done this first lag of treatment. Herceptin sounds nice- no premeds and just the infusion in and out. I do have call my Center in the morning of my appointment to let them know I will come to my appointment so they can mix the Herceptin. Not sure why but that's their processes
Edit: Today's post final treatment day 1- I slept pretty good. Chemo and steroids were later in the day, and I knocked myself out with Benadryl. I woke up at 2am briefly but right back to sleep. One thing I noted is that at-least twice I found they nurses had premixed my dexamethasone to 10mg. I didn't check it every time but I wonder how many times they maybe messed it up. Somewhat disappointed that there double checks weren't done. Anyways- that was my bone of contention. So advice if your changing your premeds- double check them with the nurse! The nurse yesterday also never heard of injections Herceptin. So prob not approved at my Center.
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Congrats on finishing, 1982M! Big milestone and it probably feels like summiting a mountain! Good luck with your surgery. I hope that all side effects resolve and things return to normal.
I just had #8 and was concerned about my CBC going in as my ANC last week was only 1.3 and my WBC was heading down below 3. Turns out the secret to improving those is to catch a mild cold: my ANC shot up to 6.0 this week and my WBC doubled. Lymphocytes tanked but I've read that happens with a virus. Glad to know my immune system is still working!
They repeated what they did last week with starting the Taxol really, really slow and gradually titrating up and the rash stayed as just a few small blotches on my stomach rather than huge blotches and actual hives erupting all over.
I have noticed my skin has gotten super dry and flaky in the last week, which is new. Especially on my sides, upper arms, and legs.
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Hi Gamzu, hope you're doing alright, and the skin issues aren't too horrid. I've been thinking of you, and wishing you could be done with the taxol, too.
I also came on here to mention, you know how it is said people can continue to lose eyebrows and lashes when taxol is all done? Well, it's true. My eyelashes are fine, but 3+ weeks post taxol, my eyebrows, which had been just somewhat thinner after 12 weeks of taxol now look like moths have been at them, and every day they look thinner. Oh well. :-/
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Gamzu,
Glad they figured out a way to reduce your reaction during the infusion. #8 done for you! Your on your way! My eyelids are dry and sensitive and my butt rash kinda went away after the Benadryl and dex however, it’s back now- only really ugly.
Thanks for updating AMG2. I was wondering if I’ll loose the eyebrows and more hair. I def had a good shed after this last round. But I am also noticing the hair that’s left is growing.
I’m four days post last taxol. I felt better Thursday and Friday but the steroids have warn off and I am beat. I wish I could just get extra rest but with the kids it’s pretty tough.
Hoping everything goes smooth for the remaining treatments Gamzu. I’ll come back and update a few weeks post taxol. I really appreciate knowing how things come along!
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Not having a particularly fun weekend. Upper respiratory infection has caused bilateral pinkeye. Fun fun! Woke up this morning with my eyes crusted shut with yellow goo and had to pry them open with my fingers and comb gunk out of my eyelashes. Yuck. Urgent care sent a prescription for antibiotic eyedrops, going to pick it up now. We're not sure if it's viral or bacterial but they suspect bacterial and I think they wanted to be cautious with a chemo patient anyway.
Interestingly, I was taking Advil this weekend because of the cold and noticed that I had a lot less face and chest acne than usually happens with the dexamethasone. Wondering why that would be.
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Is there anything to put on an itchy, Taxol #4 baldish head (have some wispy hairs left for a slight "comb over"? I can't see, but I can feel little lumps. I'm airing out my head now after wearing a cap and hat on top for the theater. I could leave head alone (aside from gentle rubbing), cold water? thanks
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Nina, sorry to hear of your lumpy head. I used Cetaphil to keep the pores clean on my baldy head. I don’t know if that would help though.
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I was curious if my period would ever be returning and found this article. It’s been 2.5 months since I had a period. Anyway, thought I would share if others were curious!
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