Topic: Weekly Taxol group

Nov 18, 2021 06:42AM - edited Nov 18, 2021 06:44AM by 1982M

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.

Nov 18, 2021 12:09PM 1982M wrote:

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! 🥳

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5057177/

Nov 18, 2021 10:25PM AMG2 wrote:

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.

Nov 19, 2021 06:40AM gamzu710 wrote:

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!

Nov 19, 2021 09:03AM gamzu710 wrote:

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!

Nov 22, 2021 01:53AM 1982M wrote:

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.

Nov 23, 2021 05:32AM 1982M wrote:

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!

Nov 23, 2021 07:58AM 1982M wrote:

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.

Nov 25, 2021 09:12AM - edited Nov 25, 2021 06:23PM by gamzu710

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?

Nov 26, 2021 02:04PM gamzu710 wrote:

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?

Nov 26, 2021 03:43PM AMG2 wrote:

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.

Nov 26, 2021 06:32PM AMG2 wrote:

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.

Nov 27, 2021 12:47AM 1982M wrote:

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!

Nov 27, 2021 05:51AM 1982M wrote:

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.

https://www.albertahealthservices.ca/assets/info/hp/cancer/if-hp-cancer-guide-supp010-peripheral-neuropathy.pdf

Nov 29, 2021 04:55AM NinaCA wrote:

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.