Weekly Taxol group
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1982M I'm not sure I would wait to talk to your MO. Mine was adamant that neuropathy was one of the few "tell us immediately" side effects with my regimen and that if it happened they would reduce the dose, and the infusion nurses ask me every single time about that specifically. It seems important. Maybe the attitude varies from office to office.
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Thanks Gamzu. I talk to them tomorrow since it's to late for a reduction for this dose. I did let the infusion nurse know though!
I did tell them the first time I experienced any neuropathy and they just said keep my hands and feet warm. It's definitely grade 1 but I'll def discuss it tomorrow with the call. I’ve been reading about it a bit and I’m more open to a dose reduction if that’s what the deem necessary.0 -
Thanks 1982M!
My hematocrit, monocytes, leukocytes, lymphocytes and erythrocyte volume were all below normal levels so my white blood cell count was down. I've had good labs throughout until the last few when my magnesium was down. I was glad it was at the end of them.
I didn't want the dose reduction either, but I was told since it was at the end, it really wouldn't matter much so I caved.
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I found this article specific to weekly taxol and mensuration incase anyone is interested. I was hoping for ‘chemopause’ to help decrease estrogen, but it seems less likely. My first period was day 41 and now I’m on day 37 wondering if I’ll get a period or not. Officially 9 cycles in! 🥳
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i also rang the bell yesterday for completing 12 of 12 Taxol. Of course, I go back next week to start the higher dose of Herceptin only that will go every three weeks until the end of August 2022.
Congratulations KotchAJ on finishing yours as well!
No dose reductions for me. I do have side effects: I have some reduced sensitivity in the fingertips of the outer three fingers of the hand. Occasional neuropathic cramping in the pinkie finger side of the left hand. On gabapentin (300mg daily total). Occasional constipation/hard stools. Waking up in the night frequent. Dry nasal passages and vulva tissues (ouch). I'll be so glad to not need to ice my hands and feet for 90 minutes weekly. Had a weird low flow 10 day menstruation in September and since then, seems to be in chemopause. Blood: low hematocrit, hemoglobin, neutrophils (lowest was 1.5 before Week 6). Red blood cells. Low total protein (borderline low albumin), LFTs rising again (might be chemo or new statin)
Hair- major even shedding on head weeks 7-10. Buzzed it on Nov 11 before infusion 11, 90% loss of axilla hair. 70% loss of pubic hair (the undercarriage is 90+% gone. Eyebrows and eyelashes are still present. Arm air still present. Leg hair 40% gone (outer calves shedding). Fingernails and toenails still growing. No thinning or growth lines noted. Slight darkening of one toenail.
Will start radiation in mid December. Moderate hypofractionated 13 sessions and 6 boost sessions. (4 weeks). Then, it's Tamoxifen time.
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Congrats Kotch and Smooth! And congrats 1982 on being 3/4 of the way there!
I also rang the bell yesterday, and am on to herceptin only and radiation Nov 30 for the simulation at any rate. Was hoping for a longer pause, and will see if I can put it off a bit.
SEs: hair: arm hair departed sometime in the night. Had hung in the entire time. Oh well! Eyelashes and eyebrows are thin but still there. Leg and axillary hair gone since week 1. Comes and goes, but mostly goes. Pubic 90% gone. Head - cold caps work for taxol.
Blood: red count, Hemoglobin, hematocrit have all been below normal but not too bad since week 1. Monocytes went below normal yesterday for the first time. Everything else has been ok.
Neuropathy: I'm hopeful it's temporary. Could walk quite normally both Tues and Wed. It's 4 am so haven't tried today (stupid steroids, I'll be so glad to be shut of those). Hands are working mostly again, but fingertips are numb. The dose reduction really did help, I think. I've also been taking some fish oil in addition to glutamine. It's supposed to help and maybe it is helping, too. A liter of fluids was added to my protocol for the last 3 weeks, and maybe that has helped, too.
Weight: continued losing for the first 6 weeks or so, then bottomed out around 115 and maintained that.
Skin: oh my lord, not even as a teenager has it been this bad. Just ugh with this rash and acne, and thank goodness for masks and that zoom filter that touches up appearance, lol! I hope the hand and foot blisters do not return again this weekend. It's my baby's 21st bday on Saturday, and I'm planning on cooking him a feast.
Nosebleeds: can't wait for that to stop.
Work: other than infusions, only missed half a day and that was last Fri.
Can't believe this phase is over. I guess next Wed when I just get up and go to work, it will seem real.
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Wow! Congrats everyone! So many finished this week! Good luck on all your recovery and further treatments.
My nails are also fine so far. No difference. I still have body hair, but I'm not shaving any more. I shaved a couple weeks ago and since then I've left it.
Dose #9 yesterday and my hips hurt like crazy. I've always had hip pain on and off but it was a lot last night- poor sleep. I did nap two hrs after chemo and then went to bed at 11pm with 2.5mg of melatonin. I'm grateful I still got broken up sleep last night. I don't usually work today anyways. I take a sick day bc I never know how I feel.
We don't have a bell at my center for chemo so no bell ringing for me! I'm also back the next week for Herceptin only. I plotted when my rash broke out on my arm and both times it got worse after Herceptin. It's milder right now so I'm curious what happens next dose. If it comes back with a vengeance, I'm calling it related to the Herceptin. I'll bring it up to my MO who I get a call from at 10:30 today.
Edit: Met with medical oncologist and no dose reduction. I’m into my last round and it’s a grade 1 neuropathy so we’re going to press on. He said the port reaction could be so many things and keep a close eye on it for infection.I brought up Neratnib and he sounded pretty excited. He is happy I’m reading and informed. He said it may be an over treatment but that my case is a bit complicated with my age, my DCIS etc. I also have a variant of unknown significance on PALB2 and significant history of breast cancer and cancer in general in my family and since I’m hoping to keep some breast tissue I feel better with over treatment going with a bilateral reduction and radiation vs mastectomy. We’re going to discuss it closer to the end of Herceptin.
He said it will go chemo, surgery, tamoxifen then radiation for me- all the while I get Herceptin. Then maybe neratnib/Nerlynx.
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Congrats SmoothOperator and AMG2 on finishing! That's fantastic. You made it!! And congratulations on being on the last round, 1982M!
#5 for me today, and again what is becoming a regular litany of rashes. The Taxol rash reappeared all over my chest and stomach within 2 minutes of the infusion starting this time. It might have been that fast last time but I didn't check until 10 minutes in and this time I was watching for it. My regular nurse was on vacation this week and it was a substitute who didn't know me so I made the slightly risky decision to say nothing about the rash and just see what happened, unless it got really a lot worse or I started noticing other symptoms. Because I knew the new nurse would understandably freak out and we'd go through the whole rigamarole again and the infusion would be really dragged out, probably pointlessly. So I watched and waited and sure enough, it faded on its own within 15 minutes. My best guess at this point is that my body is trying to start an allergic reaction but then the pre-meds do their job.
I have, however, developed an allergy to Tegaderm. Nice itchy rash that developed after they accessed the port and put the dressing on. I may have been allergic the whole time; normally the pre-meds go in pretty quickly and probably cover it up, but this time I sat around with the port accessed and no meds for almost 30 minutes while I waited for my required consult with the NP. Which gave the reaction more time to get going. The nurse changed it to a hypoallergenic dressing and that relieved it. But add one more thing to the list!
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Sorry to hear about your rashes! Glad it faded without extra interventions. One more dose for you and your half way done!
I’m worried about the sensitivity of my skin and surgery. I hope I quit being so sensitive or I don’t know what they will possibly put on my breast after.
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Yeah, I have serious worries about radiation for the same reason. I've read that many people get Silvadene to help with skin breakdown. It's a sulfa antibiotic cream. Except I have a major sulfa allergy, much more serious than any of these piddling rashes I've dealt with so far, and cannot use it. I get "delayed hypersensitivity syndrome" that causes a massive hot rash on every skin surface and makes me look like a boiled lobster, accompanied by a multi-organ system reaction with random fevers, heart palpitations, dizziness, shortness of breath, and vomiting. The trick is that it doesn't start for a few days so it looks like you're in the clear and then BAM. The last time it happened (due to doctor error not reading my chart and me not double-checking the prescription), the doctor walked into the room, took one look at my body, and told me it was the worst rash she'd ever seen from that antibiotic and she wished she had a med student to show it to (yay?). Benadryl does not really work on it as it's some other kind of immune-mediated response. They told me to take Zyrtec to try to help my skin and basically told me I would be miserable for a week. So. Not touching Silvadene! Literally. Hoping they have an alternative or I won't need it.
Funnily enough I have zero food allergies and don't really get pollen allergies either. But apparently just entering a doctor's office makes me get a rash.
Hopefully your skin will respond smoothly to surgery, 1982M, and that you're in the hands of experienced doctors who have seen it all and know how to either prevent it or deal with it easily should that turn out not to be the case. It's hard not knowing what to expect. I hope everything should go very very well for you!
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So I had a talk with my friend's husband, who happens to be a hospital physician specializing in allergy and immunology, about my weird transient rashes with Taxol. He asked a ton of questions about the presentation and timeline and his opinion is that it is indeed an allergic reaction that is being mostly but not completely suppressed by Benadryl. He had some explanation for the rash involving mast cells and "degranulation" that I didn't totally understand. His feeling is that if the Benadryl was increased to 50mg (currently at 25) that we probably wouldn't see the rash either but doesn't feel this is necessary as I'm not having other symptoms and that much would probably knock me out. I'm feeling reassured and better informed after talking to him and now I know that any potential future plan to reduce Benadryl or steroids like other people have been able to do to cut side effects from those would be a very bad idea.
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Gamzu- glad you got some answers! I did scale down to 8mg dexamethasone but decided not to ask for further reductions with the rash on my port too. Just incase bc it didn’t seem totally tape related. Better safe then sorry!
Im day 5 of dose #9. I’d say I’m more tired this round. I’m getting sick of the blood in my nose. I don’t have bloody noses but rather blood ever present. I have a small nose so it feels plugged.
I was having diarrhea frequently ish in the beginning but it’s been better these last couple of rounds. My hair stubble was hurting last night. Still so thankful for my shaved down stubble head.
Interesting note- my neuropathy has not showed up this week at a real noticble leve. I did a way better job of icing my hands- finally figured out a method to ice hands and mouth all at once. I really don’t know if it’s related but I’m a believer. I find it weird it would disappear that quickly, but it was pretty transient and mild. Maybe something else was going on? Not sure but I’ll take it!
Port rash is looking pretty good. I’m interested if it will stay gone.
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gamzu710-
I have a reaction to sulfa as well and am concerned about the Silvadene. I won't start radiation until the new year, but am hopeful there are some choices to use.
Even though my last chemo was last Tuesday, I naively thought that my side effects would stop, lol. No, they haven't and most likely they are reaching their peak now in my system. Duh.
Legs feel very heavy, weird sensation. Also feel very weak at times.
Stomach has finally settled no more diarrhea or constipation.
Neuropathy, yep. Fingertips and feet. Feet were numb up to my ankles this weekend. It's better today and am using a peppermint lotion to massage feet with.
You all have made this journey so much easier by sharing your own stories and made me not feel so alone in this. Thank you.
I'll be off to the December surgery group if someone has started one:-)
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Thanks for the update KotchAJ. Good reminder about side effects. I am planning a lot the week of Christmas bc I’m so sick of being sick. I should prepare myself that I might feel not up to all I promised myself.
Please pop in and say hello! I may be a Dec surgery! I’ll find out in Dec!
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KotchAJ--sorry to hear that the side effects are continuing, but thank you for the warning on what to expect. I hit the halfway point this Wednesday. Definitely noticing more fatigue this round. Also some weird hot flashes last night (Zoladex?).
Best of luck on your surgery and with rads! My surgery is done already but we may intersect in the rads thread.
I'm feeling reassured by having the information from my friend's husband, but also a little more nervous going into this week knowing now that it really is an allergic reaction to the Taxol. He noted very nonchalantly that I should just double-check to make sure they have an EpiPen nearby. I have seen the big red drugs box and can see epinephrine in my orders on my portal, so I know they do. I will probably be absolutely fine this week but get all kinds of psychosomatic itching or something, because that's how I roll.
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I’m sure it’s very scary for you. Given the rate of reactions to the meds I’m 1000% sure they have all the rescue meds and a crash cart. Doesn’t help to make sure they are prepared to use it!
I sure hope it goes smoothly for you.
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KotchAJ - congrats again. I am a day behind you and I am still feeling effects. Was told the peak might be two weeks out, but we will see.
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Treatment #6 in the books. Mostly fine, dragged out again. The rash made its usual appearance within the first 5 minutes of Taxol despite them slowing the rate to see if it helped. My friend's husband the allergist had told me this probably wouldn't make a difference so I wasn't surprised when it didn't work. This time it was accompanied by a maybe 1-2 minute spell of my heart suddenly racing and pounding and feeling really anxious and wobbly and like something bad was going to happen. I just felt really weird. No other symptoms. It faded and I think it was probably just an anxiety attack. But then when I reported it, suddenly I had a crowd of nurses checking my vitals and they got one of the MOs to come over and have a look and see what he thought about more steroids. They decided based on past history to give it a few minutes and try restarting at an even slower rate, and sure enough, same as previous weeks, it gradually faded and didn't reappear (which I have been told is because the mast cells already degranulated immediately to cause the first rash and don't have time to reload). They were able to gradually increase the rate but once again I was there almost an hour longer than planned.
So, same old same old. The 1-2 minute anxiety attack or whatever it was, was very unpleasant though and I hope it doesn't happen again. It wasn't at the start of the Taxol, either, more like 10 minutes in. My heart felt like it was thudding out of my chest and I felt so panicky. It came on like a switch flipped and stopped kind of the same way. Never felt that before. But, #6 successfully completed!
I did reach out to my friend's MD husband again asking about this and will see what he says. Palpitations and sense of impending doom are symptoms of both panic attacks and early anaphylaxis. He obviously can't diagnose me via text but if he thinks there is a chance this was a warning shot of more than just anxiety and that next week could be worse, I'm meeting with my MO next week before my infusion and will ask about increasing the Benadryl. I don't want to be knocked out but I even more don't want to feel like that again, or ignore signs that the allergic reaction is starting to intensify and escape the pre-meds.
There seems to be a shortage of hypoallergenic bandages; anyone else's office experiencing this? They said they were on backorder and were running low and were only using them with patients who definitely couldn't tolerate the Tegaderm ones (like me). Wonder what they will do next week if the orders don't come in. Scotch tape and toilet paper?
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Gamzu, sorry to hear the taxol reaction is there to stay. That must be scary for you.
My Center is also running out of things. The needles to access the ports- there are two types and they can only get one in. They are out of chlorhexodine swabs so have to use an alternative. Definitely shortages in our system too!!!! Funny they just use this blue hypoallergenic tape on my port. They put one piece of tape over it. Seems to work well. They only put bandages if I were to have to leave it accessed, which I don't so just tape.
I finished dose #10 of taxol with dose #4 or Herceptin on Wed. I feel like it's all catching up to me a bit. My skin is very sensitive- my eyelids are irritated, red and slightly swollen. My face is pretty broken out and my chest too. This morning I was nauseous (manageable) but food lots it's taste. Normally it's pretty normal for me.
I don't have a sore throat but I feel something weird about my throat last week and this week. I thought maybe I would get a sore throat but I haven't. I also have had a very slight cough but it's not getting worse, nor better. It's very slight so I'll keep an eye on it.
Neuropathy however is still gone. I swear it was bugging me week 7 but had disappeared. I'm icing 1000x better now then before. I'm not sure why it left, but I'll take it gladly. EDIT: week 10, day 2 am I’m feeling the neuropathy in my hands. I just spoke to soon.
The hair on my head seems to be falling out and growing…. I have a few little patches of bald, but still some stubble and a bit of fuzzyness. Very strange hairdo in rocking. Lol. Pubic hair is disappearing. But eyebrows and eyelashes are still present.
I'm 45 days from my last period. Prob not getting it back while still on chemo. Other then the steroids flush I'm not getting hot flashes I don't think. I'm not sure if it will stay or go permanently.
13 more days then done! (As long as nothing gets delayed). My blood work is dipping a bit- Monocytes, Lymphocytes, and leukocytes are all below normal, but not severe. My lymphocytes were below normal before chemo too, so they pretty much are at my normal. Everything else seems to be holding up.
Edit to add: the worst is the blood nose boogie situation. It started fairly soon after I started chemotherapy and my right nostril is always plugged with bloody bits and boogies. I’ve got a relatively small nose. Now that it’s cold where I am from I end up having a runny nose/bloody nose combo. I will be very grateful for that tissue to heal up.
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Sorry to hear it's getting harder, 1982M. I'm about 4 weeks behind you so I guess I have that to look forward to. People's experiences on this drug seem to be so variable, though. It's hard to know what to expect. Also, just throwing it out there: funny throat feeling, slight cough, loss of taste, have you been tested for Covid? i know you mentioned colds in the house in another thread. Taxol is the most obvious explanation, of course, but hmm.
My friend's husband does not feel that i was experiencing warning signs of anaphylaxis, which was good to hear. He did not think it would have stopped on a dime like that if so. He thinks it was either neurological (i.e. panic attack), or also noted that some drugs cause transient tachycardia, which could have also triggered even more anxiety. I found a pharmacology site that does list transient tachycardia as a possible side effect of paclitaxel, and I have also noted some much milder palpitations sometimes with the Herceptin infusion, so maybe I'm just sensitive. So, good news there and I will work on distracting myself next week to see if I can't head it off at the pass.
However, I described some minor differences I noticed in the weekly rash to him this time and he said it sounds like it is starting to morph into actual hives and not just red blotches. Some parts of it were raised this time and there were some red rings with white insides. I am due to meet with my MO before treatment this coming week and will discuss this with her. It is not anything that will interrupt treatment, thankfully, but my friend's husband's opinion is that probably the only way to stop the hives is to either double the Benadryl or switch to a 3-4 hour infusion. The question is, with no other symptoms aside from the fact that it is becoming stressful to me to watch it happen, do we bother with that inconvenience. They have tried slowing the rate but not nearly to that degree (more like 1hr15 instead of 1hr). I'm tempted to just push through and hope for the best as I can't imagine doing the necessary but annoying icing for 3 hours, but will see what my MO thinks.
1982M, you're only getting Herceptin every 3 weeks now? Mine is every week with the Taxol and then will switch to every 3 weeks after. I wonder why the difference?
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Hi 1982M and Gamzu, I'm checking in at 1 week plus one day out from taxol. 1982, week 10 I had very similar symptoms with the nausea, weird throat feeling and face and chest rash. The nausea dissipated, and the throat thing came and went. My sense of taste was messed up the entire time I was on taxol. Week 10 may have been the week I got a Reuben sandwich and could only taste the cheese - saurkraut, corned beef, Russian dressing were totally flavorless, it was weird.
I'm sorry you're both dealing with the stupid rash. One week out, it was still just as bad, but finally today it is starting to fade for me. Hair pain is still present. Sense of taste is mostly returned to normal, but not quite. Neuropathy is still quite bad. My right arm is tingly/nearly numb to the elbow. Fingertips are totally numb, feet still have that weird sensation that there is plastic on them, and I still have some trouble walking - fell down in the grocery on Sat, I think everyone thought I was drunk - but that is coming and going more frequently, so I think most of this will be temporary. Fingertips I think I may have lost. Taxol just kind of sucks, but I hope it did it's job.
Happy Thanksgiving to all. Hang in there, and I hope you all have a relatively easy time of it next week!
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1982M, I wanted to let you know, you may be ok at Christmas. I cooked Thanksgiving dinner with very little difficulty other than some annoying neuropathy, and I'm a bit tired, but like you with Christmas, this is what I wanted to do for Thanksgiving to celebrate being done with taxol, and it worked out fine. I hope your Christmas does, too, and is just as you hope and want it to be.
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Hi, Week 3 of Taxol got canceled because ANC was too low. They will try again next week and reduce the taxol by 15%. At least Thanksgiving tasted wonderful with the taxol canceled! good news is that my markers started going down after 2 infusions. YEAH! I am transitioning from Xeloda hand/foot syndrome to Taxol hand/foot issues. At least I was able to wear my old shoes for the first time today, other than Cozy Crocs, which were the only comfortable shoes I could wear for a year during Xeloda. Got a haircut and will do more wig shopping next week. I'm thinking back to last week, and wondering if I can reduce my pre-med decadron to 8 mg from 12, so I don't have to stay up all night. What is the lowest dosage people use for this drug?
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Hi Nina, I'm glad you got a good Thanksgiving dinner that you could taste properly, but sorry for the issues Taxol is giving you. Neuropathy has been my biggest issue with it, so I'm sorry you're dealing with it for this on top of having just dealt with it from another therapeutic. That just stinks.
Dexamethasone- I think the plan was for me to start with 8, but had a nasty allergic reaction with the first few infusions, got extra iv, and then was placed on 20 for the duration. I have read here of people managing to go without any at all, however, and I hope you're able to get alway with less. The sleep issues are a pain. Melatonin helped me some with it.
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Hi all, I had Taxol #8/12 last week with a 20% dose reduction because of neuropathy. I go back for #9 on Monday but still have the neuropathy. My feet are prickly all on the bottom, and very slight numbness in my fingertips. I see the doctor before treatment. I wonder, what are the chances she will further dose decrease or just stop treatment at this point? I have very mixed feelings about it all. I wonder at what point it doesn't make sense to continue.
Just for reference, I'm 43, had an intermediate Oncotype, but my cancer is a lymph node positive locoregional recurrence and I'm not a candidate for repeat radiation.
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Gamzu- glad to hear they don’t think anaphylaxis. I do have rapid swabs at home, but I think it’s taxol related. My two kiddos have been sick back and forth and we did swab them for Covid and they were negative when they were sick. My taste has gone on a few rounds and returns in few days. It’s strange that not all rounds end up with the weird taste issues, but this round did.
I was surprised I only get the Herceptin every 3 weeks bc lots of people do get it every week with their weekly taxol. I’m happy bc it’s shorter days for my chemo only days then…. I’m not sure why the difference.
AMG2- I’m sorry you are dealing with such bad neuropathy. I hope your OK from your fall!? Thank you for updating post taxol. I very much appreciate when people come back to update.
Nina: sorry to hear about your ANC/dose reduction, taxol hand/feet. Very happy to hear you are having a good response with decreased tumour markers! Yeah!!! And a tasty thanksgiving. I am only on 8mg of dexamethasone and if my port wouldn’t have gotten a rash I would have asked for 6mg this last round. However with 2 left I’ll just put up with it. I did the first three treatments with 10mg. 8mg did help with sleep at first but now I’m sleeping poorly on chemo days even with melatonin. I am getting bad restless legs on chemo days, prob from steroids. I do take melatonin on those nights.
Hi gb2115, I’m sorry about the neuropathy. I think usually unless it’s grade 2+ they don’t usually stop taxol? I have grade 1 neuropathy- so no muscle weakness but numbness/tingling to hands, and they didn’t even dose reduce me (39 years old). I did read younger people tend to recover and have less long lasting neuropathy. It is a lot trying to balance the side effects with the next 40 years of your life. I’m sorry your going through this. Please keep us updated on what they end up doing.Happy Thanksgiving American Friends!
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I don't know how to tell if I have grade 1 or 2. I keep reading different descriptions!
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I liked this guide when I was looking up neuropathy. I definitely feel like right now I’m in grade 1, but I would def talk to your oncologist about it.
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Interesting, I'm not asymptomatic like Grade 1, but I would call the symptoms mild, not moderate. Not limiting ADLs though. How do you know if you are asymptomatic, do they do some sort of in-office test?
I guess mine is Grade 2 since I can feel it. :-(. I will find out on Monday what she wants to do.
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Hi, A question here about my head "hurting" during my second week of Taxol with an extended second week. I used Ice yesterday and it feels better today but I'm curious if this is the recommended solution for my situation. I am not cold capping, and I realize I am in the midst of the shedding process (unless I decide to shave it all off- my daughter did ask if she could give me a mohawk hairstyle first). I got a very short haircut last week, so the gradual loss of hair is easier for me to deal with. Wig shopping Tuesday.
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