Weekly Taxol group
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Hey all! I'm down to 20 days and 3 more Taxol treatments. I'm not counting down or anything as you can all tell, ha!
I ended up with low magnesium counts this week, first time through all of chemo that this has happened. I ended up getting IV magnesium on Tuesday and have switched to pill form to keep my levels up. I go back in today for fluids. I've noticed with the weather cooling down that I am really struggling to drink my water. Anyone else having trouble with it? I miss putting my lemons and limes in it as well as my metal YETI cup, but I can't handle that again yet. Tastes icky.
1982M-I'm so glad you got the cream, it does make a difference!
I don't know if I mentioned, but they've not been able to get blood when they access my port. They get it when they take out the needle, but not going in. I've had the same nurse now for the last few times, so they've quit freaking out and I can taste the flush, ick, but not horrible. One of the nurses said that she thinks I might have a blood vessel or something that has grown across it which would cause this. No biggie, but just thought I'd share in case someone else may have the same issue and everyone freaks out about it, (because they WILL) as it can also mean that the port isn't accessed. You wouldn't have the taste of the flush if that was the case, though.
Anyway, have a great day. It's what my friends and I call Friday Eve here, sounds much better than Thursday!
Amanda
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Nina, I am cold capping on weekly taxol. I just finished the 9th of 12 yesterday. While my hair has thinned a bit, and we haven't capped perfectly all 9 weeks (had some mistakes here and there), I still have a full head of hair with no bald spots, and my grey is coming in, so it seems to be not just shedding, but also growing, albeit very slowly. I still have eyebrows and lashes and hair on my arms and hands but am basically bald everywhere else. Haven't had to shave since ~ week 2, if I'm recalling correctly, so I would say, yes, cold capping for taxol works pretty well. Still have 3 weeks to go, though. :-)
1982M, congrats on getting half way through it!! The insomnia is pretty obnoxious. I will be so glad when that stops. Also when the nose bleeds stop, and the super messed up, nasty skin stops, and ALL my hair comes back (ok, the axillary can stay gone), and the exhaustion stops, and my appetite returns, and foods and drinks stop tasting weird to horrid. Yes, I am getting very tired of taxol.
Gamzu, I'm upset about your liver enzymes and think you're right - they didn't check your blood work before infusing you with the first dose. My center made a huge point of letting me know, the MO checks the blood work, and then the infusion nurses double check the blood work, and even if the MO thinks it's ok, if they don't think it's ok, they won't infuse. They'll go back and fight with the MO until things get resolved and everyone is comfortable infusing, even if that means delaying a week or two. Do you happen to have MyChart with your system? My center is, I think, really good, but as soon as they tell me my labs are back, looking good, and here are my premeds to chug, I check MyChart from my phone just to see where my red counts, hemoglobin and hematocrit are (these are the ones that have been low and dropping since the first infusion for me), and to see if anything else is out of whack - kind of a triple check, because I'm the one who has to live with the long term consequences of any mistakes. I don't know if that is an option for you, but if it is, it has been making me more comfortable with the process. For me, CBC is done each week, and CMP (the one with the liver enzymes) is done every 3 weeks. I wonder, if given this error, you could ask for a CMP to be done each week until things are at least heading in the right direction. Yes, it is important to get the cancer killed, but there has to be some kind of balance, and you have to feel comfortable with and confident in your treatment plan, or at least feel that the benefits are really outweighing the risks, and there is no better option, and you're not going to lose your liver in the process.
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Home from #2. I had a long conversation with the NP about lab work. She confirmed my suspicion: they did not look at my labs before starting last week. The CBC comes back immediately and they do look at that before starting treatment each week, but the CMP takes a day to come back. They do do a CMP every week. She explained that for patients on some other chemo drugs they sometimes make them come in the day before to get the CMP done but for weekly Taxol patients they do not because they don't expect changes to the level that would make them reassess doing treatment that week.
It's not MyChart but they do have a portal where all my results pop up, so I can see them in real time. The NP also went through my CBC line by line with me today, maybe as reassurance that they're paying attention? My counts have taken a small hit from last week but not too much. Hopefully that levels out and isn't the start of a linear trend.
I'm not sure if I'm satisfied with the explanation I got, or if it really matters if I am or not. My oncologist specializes in BC, is one of the most highly regarded in the area, and has been doing this for over 35 years. I don't want to switch, and if this is her experience with patients like me, then OK, I guess. Just because others do it other ways doesn't mean this is wrong. We'll see what the enzymes look like when the results come in tomorrow. My ALT and AST were high but not near a danger zone that tells you your liver is about to shut down, and my bilirubin was fine. It's all going to depend on the trends.
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I guess this is the Abraxane group too? I find myself here after Ibrance failed after 3 years and Piqray after 3 months. I felt good with Ibrance but hated Piqray. I'm hoping and praying Abraxane works for me. I am on my second cycle as of today.
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Good news! CMP results from today just posted: ALT 39, AST 28. Back down to the normal range! I can stop worrying.
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gamzu710, that is great news!
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JACK5IE, hopefully this one works. Fingers crossed.
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Anybody dealing with vision side effects? I feel like my distance vision has gotten slightly worse already. Not really blurry, just less acute. I already wear glasses for driving but wore them all day today. Near vision seems fine. Searching the forum has revealed that this can be a known thing, so I'm not too concerned, more just mildly annoyed.
Still not finding much of a rhythm with side effects. Last week I had noticeable leg aches on Sunday. Today, nothing. I did take Claritin today, which I didn't last week while in the midst of flipping out over my liver enzymes, so maybe that helped. Constipation the first couple days definitely seems to be a thing, but then today I can't tell if it's really gone the opposite way or if it's due to overdoing it with the Miralax. Once a day doesn't quite do it but twice seems a little too much. Still finding a happy medium.
I haven't really lost any hair yet but am considering buzzing it anyway because I am becoming consumed with wondering when it will start happening. I've had memorable dreams about it the last three nights in a row. Maybe taking control on my own terms is the way to get past that.
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gamzu710-YES to vision issues. I had eye surgery in 2015 for early onset cataracts and my vision has gotten progressively worse since I've been on chemo. My distance vision has gotten progressively worse. I don't know if this changes or not once done or if it stays like this. I am also having some serious eye twitches in my right eye only. Has been going on for the last three weeks or so and is just about every other day or so. Annoying!
I haven't had side effects that I could expect on this like I did on AC. Very annoying. Constipation for me until Friday, I get my treatments on Tuesdays and take Colace those two days and leg pain on Saturdays and Sundays. Everything else is a free for all and it is different every week.
I did shave my own hair. Actually, my husband did and shaved his off too at the same time. It is actually just starting to grow back in now and is very sloooow. His has already grown back!
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gamzu- no vision changes here. I am going into week 7 this wed and the side effects are now getting a bit more predictable for me. I had pain the first week, and now none. I shaved my head this Friday and it feels so much better. I really started shedding a few days after my second infusion but was starting to have noticeable thinning by week 4-5. It also really started hurting. I'm relieved it's gone and I can sleep better. In hindsight I wish I would have shaved slightly sooner. Part of me was like “but what if it doesn't fall out?". I seem to still have other body hair, but it's growing awfully slow.
if your interested I posted an article here about taxol hair loss:https://community.breastcancer.org/forum/69/topics/881007?page=1#idx_28
Biggest complaint is still tired and occasional diarrhea and acne. Since they lowered my dex I've been a wee bit nauseous the Friday after, but I sleep better so I'm sticking with 8mg. I also have been living off Halloween candy for a week so that's not doing me any favours for sure! No neuropathy since the first week. No mouth sores yet. So far I’ve also avoided catching a cold from my kids. They keep bringing them home. I’m terrified to miss treatment but so far I’ve managed to stay healthy.
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Number 10 is done!! Double digits finally! I also talked the MO out of reducing my Taxol dosage. Has anyone had their dosage reduced? Is this normal? Why do I feel like I'm flunking some kind of test if we reduce it? My neuropathy has progressively gotten worse and now my magnesium levels have been low the last two weeks.
He did say to me this afternoon that if my neuropathy has gotten any worse that he will reduce the dosage. I just don't want to. UGH. I want to kill this thing inside of me and I worry that if the reduce the dosage, that it won't. I know that it can reoccur anyway, but still....I don't want it to come back which is what everyone wants to do.
So, if you're reading this and they reduced your dosage, did it help with side effects? Did it matter? I'm trying to find some answers as tow how this can effect my treatments on the web.. yeah, scary, huh? I haven't spoken to Dr. Google yet though....
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KotchAJ, congrats on #10! You're almost done!!!
My taxol dose was lowered (to 80% of the starting dose) due to elevated liver and heart enzymes. My MO pointed out that even if people get the same weight-adjusted dose to start with, they can still have different blood levels of the drug because of differences in how we absorb and metabolize it. She thought that the elevated liver enzymes were suggesting that I was actually getting too much. Apparently it is pretty common for people to get dose reductions of most chemo drugs.... these are really toxic agents and they are trying to give you as much as possible without causing too much collateral damage. On the lower dosage of taxol, my liver values did get better, but heart didn't, which resulted in them cancelling my final dose. I really understand what you mean about feeling like you're flunking, but you're not!
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Has anyone been on Taxol more than the usual 12 weeks? Just wondering since I might be in that situation. thanks.
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mle42- Thanks! It made a difference to hit that one. I did talk with my MO yesterday at my appointment and he did explain that to me as well. It did make me feel better about it. We will lower the dosage next week for the last two and I feel better about it now than I did when I posted this. Crazy how this brings up the weirdest reactions and feelings about things. I also discussed surgery, which is coming up in December. I feel like things are starting to move again.
NinaCA-I hope that someone can answer you on whether or not they've had more than 12 weeks. I know that it's given in so many different ways. Some people have had Taxol every other week for 6, some have had a dense dose every 3 weeks, etc. I'm not sure anything is normal with this.
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I'm not sure how we're counting for weeks on Taxol, but I'm on cycle 8 which means I've had 24 weeks of taxol & no talk of stopping it. Except that my port blew up yesterday so it needs to be replaced. Not sure how long that will take.
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GG37: I’m so sorry your port blew. That really sucks. How are you doing after 24 weeks on taxol?
I got my 7th dose today and my hands and feet have been tingling off and on. Thumbs feel numb. I see my MO after another two infusions so I’ll mention it. I had it only really after the first dose. I’ll see how it progresses this week.
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Finished with Taxol #3. Oddly, when I came in my chest was red and blotchy; I didn't even notice it until the nurse accessing my port frowned and asked me about it. I have very pale skin and just get randomly blotchy sometimes, but it was definitely there. She checked my stomach, back, head, and had me take my mask off to check my face and inside my mouth, but there was nothing anywhere else. I told her I really didn't think it was anything and that my skin just gets weird sometimes and then it goes away. But then it vanished after the pre-meds. So I don't know.
Anyone had anything like that? I wasn't even slightly concerned but the nurse was, so now I'm not sure what to think. Guess it'll just be more watching and waiting.
Liver enzymes also continued to drop and were in the 20s this time (30s last week) so I'm feeling way better about that. Whatever caused them to skyrocket appears to be gone.
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Hi, I get my port put in tomorrow- my first one was 23 years ago so I am currently going a bit backwards. thank goodness for the all the Oral medications they have been developed over the years. Two days later I will get my first Taxol only infusion. I hope it will be okay with the port. Blood Tests-I've been told that the way they do it, is you have blood tests the day before (can order port access or just "regular") then the infusion the next day. Their reasoning is that they will have medications ready for you. Other people I talk to have the blood draw from their port the day of, wait 1/2 hour and then start the infusion. One less stop at the Lab. Just wondering what others do. Also some people have told me to get numbing cream but when I asked the nurse she said they have a numbing spray that is safer to use than the creams, more sterile. Just wondering what others have done before an infusion. Have not heard back from my MO as to my new tumor markers (I always hear back right away) so I'm thinking they were much higher and he doesn't want to alarm me since I'm about to change medications anyway.
One last question about pre-meds for Taxol (If you can remember). This is what has been prescribed for my First Time Meds- Day before -5 decadron (dexamethasone 4 mg) at night with dinner, 5 Decadron in morning 2 hours before Infusion. 1 hour before infusion I take 2 pepcid (famotidine 20 mg) tablets and one 1 zyrtec (Certizine). Second Treatment and beyond will include only morning 3 decadron, famotidine and Certizine. I don't think there are any pre-meds in my infusion. thanks, Nina
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Gamzu710-
I've had something similiar, looks like a rash on my face and hands the last few infusions. They check it every week when I go in, but haven't stopped anything. It usually fades away as the week goes on.
Glad your liver enzymes are going down!
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Hi NinaCA,
I hope your treatment goes well! I'm not sure if this will be your case, but my first infusion was the one I had the most side effects with. I'm thinking they did a loading dose? I'm not sure if they did but I mention it bc I felt a little overwhelmed with dose 1, and since then they all have felt very similar, if not better! Right now bc of CoVid I can't use my port for blood draws so I go to a local lab the day before and get them done from my veins.
I use Elma cream 1hr before they access my port. No one mentioned anything different. They clean the port before accessing so I would think that helps with keeping the site sterile?
I take 1 oral famotadine, and then 8mg Dexamethasone IV, and then 25mg Benadryl IV. I don't take any meds at home.
General update: finished week 7 taxol, #3/17 Herceptin on Wednesday. Peripheral neuropathy has set in pretty good in my left hand, particularly my thumb. No nausea this round but bone pain. I’m wondering if that’s from the Herceptin since I generally don’t get that with taxol? I had it on infusion 1 of Herceptin as well. I guess I’ll only tell when I finish taxol.
I'm wondering if anyone else had unilateral neuropathy? My feet are fine and my right hand doesn't seem to be as affected. I feel it lots in my left, which is weird to me. I am wondering if the icing is helping my feet and right hand? I eat ice with my right? Who knows…. I'm going to focus my attention on my left hand this next infusion.
Oddly, I have two cats. One likes to sleep beside me at night. Since shaving my head the other cat keeps trying to sleep ON my head. Lol.
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Good day all.
I started on Abraxane and it was going well other than vision problems (consult sent to ophthamology). 3 weeks on, 1 week off and finished 2 cycles when I got a message from my oncologist explaining there is no Abraxane available. Had my fist Taxol infusion today with IV dexamethasone, benadryl and pepcid--don't remember the dosages. I lost most of my hair with 18 months on Ibrance, so I did cold-cap, and so far so good. Mind you the stupid hair on my legs is doing fine, so still shaving. Ugh. I am also using cold mitts and cold socks with great success-no neuropathy so far. I initially was going to have a port placed, but vein access was going well with the Abraxane--will have to see what happens with Taxol. The port placement was turned down by anesthesiology--my breathing is that bad. Fingers crossed that the veins hold out. For sleeping I have had great success with melatonin and CBD (legal in my state).
Always fatigued beyond description. My breathing is very difficult making any movement nigh on to impossible--the nodes in my chest have not shrunk enough to improve that (lower left airway and left main airway are obstructed by lymph nodes crushing those airways, leading to exceptional breathing workload--those were some really scary pictures).
My fingers are crossed for everyone!!
Moving
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NinaCA- you asked earlier about people being on taxol for more then 12 weeks- there is one group with some info. It’s a weekly group for people on Taxol with Mets. I’m not sure if it’s as active as this thread thought? But it might help too? https://community.breastcancer.org/forum/8/topics/790290?page=86#idx_2560
movingsoccermom: I’m so sorry to hear of the fatigue and the run around with getting what your prescribed. I hope you find some relief with the taxol.
I had my 8th out of 12 infusions today. Went well. I tried much harder to freeze my hands this time since I have numbness on and off in my thumbs. My four year old is sick again. It’s driving me crazy.
My four and eight year old are rotating colds this whole months. They are weakening mask and we’re doing our best, but I’m so paranoid about getting sick and missing any of my chemos. They both got FluMidst vaccine and anxiously awaiting Canadian approval for Covid vaccine for my middle child soonish. I do have 3 vaccines so I’m hopeful I’m COVID protected but still worried about getting sick and not getting treatment.
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4 out of 12 in the books, but it wasn't entirely smooth sailing this morning. My ANC bounced back but I developed a blotchy rash all over my chest and stomach 10 minutes into the Taxol infusion. But it wasn't itchy and I had no other symptoms of an allergic reaction. The nurse immediately stopped the infusion and the rash kept getting more pronounced for another 5-10 minutes and went around my sides and toward my hips but still no other symptoms. It stayed like that for about 15 minutes and they were talking about giving me more steroids but then it gradually started to fade. The nurse restarted the infusion at a slower rate at the 30 minute mark, let it run like that for about 20 minutes, and then when no more rash developed, bumped it back up to regular rate.
We don't really know what it is. I am very pale and used to getting blotchy for every reason and no reason, although these definitely looked odd today. It was sort of like what happened the first week on my arm that we thought was angry veins, but this was with a port and all over my torso. It's definitely some kind of skin reaction to Taxol but it goes away on its own and doesn't come back even when the infusion continues so it can't be a real allergy. Baffling and annoying. I'm glad I was able to complete the infusion but it's not fun being the patient in the big chemo room that the nurse is most worried about and keeps coming to check on every few minutes.
Anyone dealt with this?
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Sorry to hear about the reaction Gamzu. I have a port reaction but that's it. After I had my port in for two weeks I got two itchy bumpy patches on either side of my port. It almost went away and then came back. I thought it was from tape but we haven't used the allergic tape in weeks. Currently it's calming down. Not sure what's causing it, but if it doesn't settle by the time I go to surgery I'm going to ask they remove it. I can do Herceptin with IV's. Not worth the pain!
I'm day 4 in dose #8 of taxol. The neuropathy in my hands is definitely settling in. Almost exclusively in my hands. My feet feel a wee bit more sensitive but I notice numbness and tingling in my hands much more. I also had a lot of aches in my hips and thighs this round. These weeks are actually speeding by. I was worried I'd gain a bunch of weight on chemo from the readings I did, but so far I'm pretty much exactly the same weight. I don't know if tamoxifen will change that or not, but I'm glad I don't need a new Christmas wardrobe.
for those of you who finished treatment, did you feel pretty much normal by week 2 of being done? On my normal week I feel kinda crummy Wed-Sat and then pretty good Sun-Tues. My blood work is low normal but not far off from where I started. I’m hoping if I finish by Dec 8th I’ll be feeling up to some Covid safe Christmas events by the next week. I’ve been really sticking close to home during chemo bc of the Covid situation here. I’m so excited that kids 5+ can be vaccinated in Canada soon. I’m so envious of the USA right now! I really want my 8 year old vaccinated before Christmas. Then I just have the 4 year old to worry about.
Any advice or thoughts on going out around Christmas? I have Chemo on Dec 8th, Herceptin on Dec 15th and then nothing for a couple of weeks. I’m worried they may try to do my second surgery the week of Christmas. I’m debating saying no. I also offered to host Christmas with my family (just my parents and my brothers family). I’m not sure if that was stupid or not. I wanted to be at my house and not drive around. I genuinely have a very helpful husband who could do most of it if needed.
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hi Gamzu and 1982, I was just stopping by to ask if anyone had ever had a rash on their palms from taxol or herceptin. I have this new and unpleasant SE now after infusion #11. Seems it is the week for rashes for all of us, and I'm sorry for all of us!
I have had a face and chest rash since about week 3, and it just gets worse each week, but mostly fades by tues before infusion on Wed. Gamzu, how much dexamethasone and/or benadryl are you getting? After I kept developing anaphylaxis, my dexamethasone was increased to 20, with benadryl reintroduced and kept at 25. Slowing has always helped with SEs that occur during infusion. I just don't like that approach because I want to be done, and it prolongs the whole icing thing. They've also added extra dexamethasone and benadryl iv when things have seemed otherwise unresolvable during infusions, and once just stopped the infusion entirely, but since increasing the dex to 20 and consistently using benadryl, I've had no issues during infusion, just afterward. Maybe this could work for you. I hope infusions start to go more smoothly for you, and that your bloodwork doesn't worsen.
1982, I'm sorry about the neuropathy. It annoys the heck out of me. I've gotten to the stumble around stage, and will be so glad to get this over with. I will keep checking on this thread after Wed and let you know how my own SEs are resolving. It's a question I have as well, so will be happy to pass along my own experience.
I'm not sure what to do about the holiday sched, other than ask your infusion team and MO what they recommend. Seems they could delay surgery by a week without causing issues. I hope that all gets resolved in a way that lets you have a good Christmas.
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AMG2 and 1982M, thanks. Sorry to hear we are all coping with weird skin things. The rash made a couple of transient reappearances Thursday night and Friday morning but then faded again. I woke up Friday morning with my usual warm red face, though interestingly this time my temperature was a tiny bit elevated when it has not been before (99.2; not a fever at all but normal for me that time of day is more like 98.0). I monitored it carefully and it dropped to normal by the afternoon, which also coincided with the rash vanishing and not reappearing.
I think my Benadryl dose is 25mg, not sure about the dexamethasone. They were going to give me a rescue dose of something on Thursday but then the rash faded on its own and didn't come back when the infusion was restarted and there hasn't been any talk of changing the pre-meds. I may be due for a meeting with my MO this week as I think #5 is technically the start of a new "cycle," so maybe she will have some thoughts. I would like to have a label for it just to know what's going on, but at the end of the day, my priority is to get through this treatment on schedule so if an annoying but transient non-dangerous rash is something that's just going to happen, then fine.
Are either of you doing dose reductions for the neuropathy?
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Hi gamzu,
I am still full dose but I only talk to my MO before each 'cycle' so my next appointment is on the 18th. I’ll be starting my last 3 treatments (last cycle!!!!. I'm hoping to push through. My dad had cancer @ 45 and had neuropathy and he was very encouraging about how it improves over time.
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I did 2 dose reductions for neuropathy, first a 10% reduction, and the following week another 5%, so a total of 15%. Since my last one is Wed, I doubt there will be another reduction, unless the weird blister thing warrants it. The reduction seemed to make the nerve deterioration less steep. Skin stuff almost seems like it has accelerated, but maybe it would be worse if it were full dose.
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Hello everyone! Just checking in today. I had my FINAL #12 Taxol yesterday. This is the first week that my bloodwork tanked on me. I've also had increasing neuropathy in my feet and hands, surprise:-) They had reduced my dose to 65% for the last two. My oncologist said to me yesterday that I didn't have to "do" the last one. I told him I WAS doing it and luckily he just laughed at me and said that he figured I'd say that. I didn't want to not do it. If it comes back, I don't want to think if I would have done that last dose it might have made a difference. I'm not a masochist, but since I'm already doing it anyway...might as well finish it out, right?
I go December 2nd for my mammogram and US and then onto to surgery FINALLY the week of December 13th. Radiation after that.
One more thing to check off the list as complete!!
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Congratulations KotchAJ! #12 all done is so so so exciting!!!! I get #9 today- 75% done. I hope surgery and radiation go well for you!!! How soon after your surgery are they planning to start radiation? How many sessions are you getting?
I’m also getting more neuropathy. I’ll talk to my MO on the 18th. I don’t want a dose reduction but I’ll take it if suggested. The neuropathy is annoying but not severe, but I really don’t want it to get severe.
What do you mean tanked? Neutrophils? Hgb? My blood work is a tiny low but holding pretty steady. My last infusion is suppose to be Dec 8th so I’m hoping my counts hold up.
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