Weekly Taxol group
Comments
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Thanks, 1982M, my periods will not be returning because I'm too old, but I was curious anyway because I kept having cramps like they were returning all through taxol (they didn't). Anyway, it definitely has some manner of uterine effect even on us oldsters. :-)
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Will they delay chemo for laryngitis? I'm on the tail end of this cold, my bilateral pinkeye is looking much better after 2 days of antibiotics, but my voice still sounds like a frog in a tunnel. I guess it could still improve before Thursday but I'm worried that as soon as I get there and they ask, "Hi, gamzu, how are you?" they'll hear my voice and send me packing. I really don't want a delay!
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Can you call your oncologist? Did you have the cold last thurs and did they give you chemo?
I’d just call to check to be safe. Hopefully they are fine with it since your on the mend!
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I did have the cold, in its early stages, but didn't tell them. I thought they'd wonder when my ANC and WBC came back high instead of low and my lymphocytes tanked, but they didn't. It got worse over the weekend and is now better.
I'm averse to calling the office because I have this hope that my voice and everything will continue improving and be passable by tomorrow; I've been making an effort to do very little talking and it's not back to normal but does sound better today so I'm hopeful. So if I call them and ask and they tell me not to come, and then I wake up tomorrow sounding tons better, I'm going to be mad.
Part of me feels like this voice problem IS related to side effects. Taxol is making my nose bloody and scabby all the time. So now I've got post-nasal drip with blood mixed in going down my throat all night which is probably irritating the crap out of my vocal cords.
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Gamzu, I'm so sorry, and hope you get totally better soon and don't have to have a delay. You're so close to done. I can imagine the Taxol is also exacerbating things. My voice changed on it without ever having an extra illness. I am just now realizing how totally run down Taxol made me feel - I just opened a birthday present (received in Oct) a few days ago (it was from my wonderful brother who is totally understanding, thank goodness), and someone asked me why on earth I waited so long to open it, and I realized, all my energy was taken up by work and things that HAD to be done like taking care of my pets and laundry, groceries, cooking, cleaning, mail, and bills, and I literally did not have the energy left over to even get out a knife and open a box that did not have to be opened right then, and it seems so ridiculous right now, but that's how it was. I cannot imagine having a cold on top of it. Hang in there. Hugs to you.
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I totally understand. It's terrifying to miss treatments. I was terrified to catch a cold this whole time. I would have done the same prob- I didn't want to miss treatment unless it was essential.
I think you could get away with saying you enjoyed a overly boisterous football/basketball/sports like game if someone asks?
AMG2- totally. I’m so exhausted and my husband doesn’t really get it. He’s attending work parties and lunches and I’m attending chemo, bloodwork and seeing surgeons. Between kids, working a few days a week, breast cancer- to care about anything else feels like a whole mountain.
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Gamzu, if it were me, I'd call. I think part of that would be the worry that I'd infect someone else with the cold. But if you don't think it's a cold, that's more tricky.
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No delay, thankfully, #9 is in the books. Bad time with the Taxol, though. For whatever reason, the intermittent rate increases did not work this week. The normal rate is 300 mL/hour and they have been starting me at 100 and bumping up 50 every 15 minutes. When we got to 150 I noticed that the rash wasn't fading like it usually does. And when they bumped to 200 it went haywire. It spread rapidly all over my torso, back, face, arms, and legs. I got tachycardia again and started to feel hot and very weird. This time I did feel something odd in my throat and my voice was growing hoarser. They quickly gave me more Benadryl and steroids, which fixed most of the symptoms, but the rash lingered on my legs and around my waist for some reason.
So they had to have me sit for 45 minutes, then they restarted at 50 mL/hour for 30 minutes, then bumped to 75. Both times the rash returned and faded. We got to 100, and the rash returned and started getting worse before our eyes instead of fading, and my heart rate jumped again. Another pause and observation, then back down to 75. Even at 75, I was still getting rashes coming and going every now and then, but it was at least transient.
The nurses called my MO to come consult and there was a brief discussion about whether 8 Taxols was enough and we should stop, but my MO was against it because of my young age (and I agreed). We really want to get in all of these.
My MO's plan is to switch me to abraxane for the last 3 rounds. But obviously there's a nationwide shortage and it's being rationed strictly. They're putting in a request but they're not sure they can get it. They're hopeful since I only need 3 doses, but I'm sure everyone else also needs it. If they can't get the abraxane, they're going to add Solu-Cortef, a new steroid, to my premeds, and keep the infusion rate at or below 75. The downside being it will make the infusion take basically all day. Which is a pain, but I just want to get the full course in and do as much as I can to prevent recurrence.
I've been told I need to take Claritin or Zyrtec every day this week as a precaution against further reactions.
All in all, not a great day. But I'm 75% done.
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Gamz, if it takes all day, that's what has to happen. Only three left. You can do it
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Yup. They're going to call me before my next infusion about whether they have been able to procure abraxane for me or not so I will know what to expect going in. If it takes 6 hours, it takes 6 hours. I just want to complete this.
My iPad battery held out that long but my AirPods needed a recharge. And next time I will bring food. Thankfully I thought to bring along my antibiotic eyedrops so I didn't miss a dose of that. It's doable, it will just take a bit more planning.
I think the other concern, though, is that I'm STILL getting rashes at 75 mL/hour. Today it came and went and came back at the very end. Previously these rashes were coming and fading and not returning. That has now changed, and at higher doses it eventually spiraled into something more serious. So the question is, when I go in next week, will I still be able to tolerate 75 mL? Really hoping they are able to get abraxane for me.
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Oh gamzu,
I really hope they get abraxane in for you! I’m sorry that your reacting. 75% done though! Honestly those last three flew by for me.
I had my first solo Herceptin this wed and it was so easy compared to taxol. It took longer then I expected but that was bc they were really busy. They started me late. No premeds was lovely.
A week out and I feel like my hair is actually growing. I’m not totally sure, but the hair that didn’t fall out seems to look longer and fluffy.
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1982M I'll try cetaphil, an old time name brand I used to have but think I cleaned it out of my closet, 20 years is a long time to keep it. At the moment I have some wispy white hair I've kept (did not shave it all off let it fall as it may) so have not used shampoo or cream, just water or hdrocortisone where itchy. I don't want to rub too much so the hair won't fall out. Whatever, taxol is really working for now, just got a drop of almost 700 points on my CA15-3 tumor marker since 3 weeks ago after 2 infusions- almost 800 points since being on 5 rounds of taxol (yes it was very high to start and still is).
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I only had 8 Taxol because of neuropathy and both the oncologist and the breast surgeon said that was great. In fact the surgeon was like you "DID GREAT" when she asked how many treatments I got. I got the feeling many women don't get the full course.
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Nina- I'm so sorry about your scalp. I'm happy the taxol is working for you! I hope your feeling ok with the taxol.
gb2115- I think your right! I read somewhere that only about 50% of people complete the full taxol regime without a reduction or ceasing- mostly bc of neuropathy I think.
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Just got a call from my MO's office. They were able to get an allotment of abraxane for me and my insurance has approved coverage. So hopefully next week will be better!
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Excellent news!
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Hello, I have completed 9 treatments and it has been EASY (THANKING GOD). Hair is gone but I found the CUTEST wig. Day of treatment for me has been insomnia and restless legs at night. No nausea, no fatigue. First treatment I did have dry heaves but I got that under control. This stuff has been a blessing and my tumor markers are coming down. POSITIVE MENTAL ATTITUDE AT ALL TIMES.
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4 weeks out from Taxol being abandoned after #8. The neuropathy is definitely not getting better. Does anyone else's neuropathy cause itching? My toes/feet are now numb, prickly, itchy. It's not severe, just weird.
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Hi gb2115, Sorry to hear your neuropathy isn't getting better. That's frustrating. Mine doesn't itch at all. I'm only 2 weeks out though.
ElaineK, glad to hear you keeping your spirits up and you found some wigs you like! Great news on the tumour markers! Hurray!
2 weeks out and neuropathy is still present. Occ feel some tingling in my feet, but it's mostly my left hand. I read it's almost always bilateral, but my left side def took the brunt of it. It however, hasn't gotten worse in the last two weeks so that's good! My fingers are def very sensitive to warm/hot water.
Nails handled everything fine. No dark spots, no lifting. They even grew during chemo.
Hair is growing back for sure. I had a shed on day 3 after my last dose but it's growing now and coming back white or blonde. I can't tell. I have dark hair to start with so this will be interesting. I def have 'ducky fuzz' head.
I'm so glad my energy is returning. It's not 100%, but getting there. My appetite has been normal but I did end up with several mouth sores- something that hasn't been an issue otherwise. I currently have three but they are healing. No diarrhea this last week, or maybe even the week before? I can't remember but I had a sensitive stomach the whole time on taxol and didn't know when I would be fine or when I would immediately need the bathroom after eating. I'm grateful to be tolerating everything.
My skin is still an issue. Acne has not disappeared. My rash is getting better. Almost gone. I did however end up with a new (minor)rash from the sticky pads from my echocardiogram this week. I am now very sensitive to skin adhesives which makes me anxious about surgery.
Weight through the whole processes fluctuated within 3-4lbs but I’m squarely where I was before. I did lose a wee bit of weight just before from stress, but I weight the same as I did the day I was diagnosed. No return of periods just yet either. It’s been 70+ days.
Otherwise I'm just super grateful to feel a bit more like myself again.
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I'm sticking with this thread even though I'm on abraxane now. First infusion went wonderfully. They did NOT do any premeds, no Benadryl or steroids at all, which made me a little nervous, but I had no reaction at all.
Only snafu was that the doctor forgot to renew the Kanjinti order along with the abraxane when the switch was made, and I had a new nurse, and when she brought out the abraxane without any Kanjinti and I questioned it she got all confused. She brought my MO out to talk to me and must have told her I was upset or confused about the abraxane switch, so my MO started to explain it to me again, and I was like no, I understand that part, but I want to know why I'm not getting Herceptin any more. And so that confused my MO who reassured me that I was, but then I pointed out that it wasn't in the orders I'd been shown and they had brought out the abraxane without it. So then my MO fixed the orders but it had to be re-authorized by my insurance and the whole thing took an extra hour. But at least I got everything I was supposed to.
The tail end of my cold is hanging on and I have an intermittent dry cough that will not quit. My voice is also still raspy and I'm waking up with a sore throat every morning. The air is SO dry right now and my membranes are all dried up and my nose is basically constantly scabby or bleeding at this point so I think it is probably dripping down my throat all night and irritating everything. Hydrating and humidity (like the shower) basically get rid of it so I've bought a humidifier and am chugging water.
I've also noticed a decrease in appetite but it's hard to tell if it's a side effect or because I've been sick. I had gained about 5 lbs. and now I'm back to where I started. Going to work more on that this week, especially now that I don't have the steroid boost. Only two more to go.
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I just wanted to pop in and see how you are doing gamzu? Have you got through your cold and recovered? Second to last treatment today right? 11/12? So close!
I’m 3 weeks out. I generally feel better then I did on chemo. However, I was unprepared for the extreme fatigue when I over due it. I hosted Christmas, and in hind sight should have scaled back and asked for more help. I thought I would bounce back 100% but I was absolutely exhausted Boxing Day and the 27th. My husband helped a ton, but even visiting makes me tired. I was so exhausted I thought I must have contracted Covid on Christmas…. but after two days of rest I feel better.
I hope your feeling well Gamzu and could enjoy some type of holiday break even with stupid omicron circulating.
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Thanks for asking, 1982M! #11 is tomorrow; my usual day is Thursdays but was Wednesday last week due to Xmas.
The cold is not fully gone even at the 3-week mark, unfortunately. But my voice has gotten a lot better in the last couple of days (sounds nearly normal now), as has the cough. Urge to constantly clear my throat has also gone down. I started sleeping with a humidifier practically next to my head as it definitely seems like a reactive cough triggered by dry/cold air, and that helped. So it is getting better, just slowly!
What is concerning me is that the conjunctivitis came back on Sunday, around 2 weeks from the last bout and a week after I finished the antibiotic drops. It cleared up within 24 hours of starting the drops the first time and I did finish the full 7 days as directed; the bottle was still half-full so I started it again this time and once again it cleared up within 24 hours. And it seems I caught it early enough that it didn't really spread to the other eye this time. But obviously I'm wondering why it came back. I don't know if it's just bad eye hygiene, bad immune system, something related to my eyelashes being irritated and getting ready to fall out due to chemo, or totally unrelated. I have a meeting with my MO again tomorrow and will see what she says. She may just send me to my PCP and that's fine but I want to get her thoughts first as it seems to have passed the point of being straightforward pinkeye and it's got to be somehow chemo-related as I've had dozens of colds over the years but haven't had pinkeye since I was 6 and now it's twice in 3 weeks.
Other than that, abraxane/Herceptin with no steroids definitely made me a little queasy on and off for about 3 days, and I also had a feeling like I had a fever between 2-4pm on those days but the thermometer did not agree. But really nothing major. Advil seemed to help both problems (never heard of Advil helping nausea but whatever). And they were right about less GERD with abraxane as my Pepcid consumption is way down.
11/12 tomorrow and a meeting with my MO. I've made a list of questions about pinkeye, my next echo, continuing Herceptin, hormone blockers, and Nerlynx; I think this is my last meeting with her for awhile so I want an idea about all these things and where we're going. It's a little scary!
Glad you are continuing to bounce back and thumbs down to the stupid omicron. I've had three full doses of Moderna (third dose was right before chemo when my immune system was still normal) so I'm not terribly concerned about getting a bad case but it is definitely messing with things around here. I work for the local early intervention agency and we just got told today that we're going back to 100% Zoom for the month of January.
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#11/12 done and dusted. Yet again zero reaction to abraxane, no premeds at all. I also had a good meeting with my MO and we discussed where things are going now that I'm nearing the end of chemo. I made my first Herceptin-only appointment and am expecting a call scheduling my next echo.
I cannot figure out any rhyme or reason to my blood counts. Hemoglobin, RBC count, hematocrit slid down incrementally for weeks and are below normal but seem to have flattened at "mildly anemic" and stopped dropping. WBC and ANC have been all over the place. ANC was 1.7 last week and I thought this week might be trouble but it jumped to 3.4 and WBC also jumped quite a bit, back into normal range. My platelets have been borderline high the last couple weeks, which is weird, and a week off steroids and drinking too much Coke seems to have made no difference whatsoever in my blood glucose. I'll be glad when I can stop seeing these numbers every week because I don't think it's good for me mentally.
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gamuz710- About your eyes- Mine started bothering me on Xeloda, they said it wasn't related, but I say it was. They still bother me on TAxol. I've learned that it is not pink-eye, it seems to be a combination of things including dry eye. At first they said blepheritis, dandruff on your eyelashes. The anti-biotic cream helped, but I didn't need to keep taking it for 7-10 days after it kept returning. I learned just a regular eye cream and regular, frequesnt washing of eyelids helped. My eyes stick together every morning, and hurt in the evening, but eye drops like Systane keep them feeling better and a washcloth with warm water clears them up. I did have a eye surgery to remove some of my loose skin on my eye lids, so my eyes are more open now (better for driving and seeing) and they hurt less than before the operation. Taxol affects mucus membranes so why not your sensitive eyes.
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Hi Everyone!
I notice a few names from other previous and current threads! Question for the group as it is, of course, a Saturday and a holiday so I won't likely get a hold of my doctor until Monday....I completed infusion #8 on Thursday and as of last night started feeling a dull pain in my shoulder back and under my arm. I didn't see anything but it was uncomfortable enough that I did not sleep well last night. Now today I have a rash starting under my cancer breast toward the middle of my chest and under my arm. It is red but not itchy (yet anyway) but also has the dull pain. My shoulder back might have it, too, I cannot see. Research says this can be a reaction but is normally in the first few weekly Taxol infusions. Has anyone had, seen or heard of this? Should I be concerned? THX!
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Your MO should have an on-call nurse service or something. I might call for that if it's red and hurting. I had bad allergic rashes with Taxol that escalated to the point that I had to be switched to abraxane but pain was not a feature of them, ever. It might be nothing but there are a couple of scarier skin reactions that can happen with chemo that you'd want to catch sooner rather than later.
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Hummingbird- could it be shingles? The description of the area makes me wonder.
I had lots of rashes- I have some on my cheeks at almost 4 weeks out- almost like a heat rash. I had a bumpy one on my thigh/under my butt check and an allergic one over my port.
I agree to call- just to be safe. Sorry to hear about the rash.
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So I made the mistake of not doing much Miralax this week and I'm 99% sure I now have an, um, fissure. OUCH. OUCH. OUCH.
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#12/12 completed this morning. I go back next week for Herceptin only, and I have my radiation oncology consult the same day.
I don't really feel like celebrating. This feels like the start of the marathon, not the end. I'm nervous about moving to the next phase, nervous that we missed something (with only checking one sentinel node and no other scans), nervous that this isn't enough. Everybody's like, "Yay, you're done with chemo!" and I don't really feel like that. I also feel like I got off "easy" with this regimen compared to what a lot of women have to do and I will pay for it later. But I know from reading this board that all these feelings aren't unusual.
Anyway, onwards.
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gamzu- that’s exactly how I felt. I thought I would ready to party and celebrate but instead I was a bit sad and nervous with all that was still happening.
I think some people think everything else is a walk in the park. Like chemotherapy is the absolute worst and surgery, radiation, targeted therapy, hormone therapy etc are nothing. (Which for some they might be)!
I am glad you got through the first part of your treatment! I hope your fissure is healing. I did end up with one too midway through chemo and feel 100% better now that I’m four weeks out!!
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