Weekly Taxol for Stage 4
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thanks for the words of encouragement Teedoff. My tag line was too long, so I shortened it to only the last treatment I was on, I'm actually on Line 6 or 7 for mets unfortunately, so I do have a lot of experience with the different chemos etc. This will be my fourth trial as well.... so keeping my fingers crossed that it too works for a long time.
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Had my second infusion (week 3 but missed last week due to a cold) Again I had an anaphylaxis reaction. I asked if they were upping my premeds, nope, they would just run it slower which they did, but then they didn't tell me they were upping it to 100% again, and boom, 3 minutes in, anaphylaxis, this time, worse as I also had horrifying pain in my lower back and hips as well as I couldn't breathe and the top of my head felt like it would explode, I couldn't move, think 9 on a pain scale of 10. They kept trying to lay me down in the chair but I couldn't breathe and the pain was so bad that I didn't want to be moved.
I really want this trial to work for me, but I can't do this every time. The RN practitioner who came to help said "oh we deal with this every day, not to worry, it will be over in a few minutes" well it doesn't happen to me every day & you're not the one who feels like they are dying so just stop with the platitudes.
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oh GG, I'm sorry, that sounds so horrible. Is a switch to nab-paclitaxel out of the question for this trial?
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OMG, GG! That is horrible including the nurses blase reaction! I am so so sorry.
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I can't believe there wasn't a doctor or another NP on duty. Just curious as to whether your center posts nurses/doctors notes after each visit to your electronic medical record and that you have access to how they describe your reaction to the infusion. An allergic reaction to taxol can be serious. Moth gave you really good information on protocols. Here's hoping they have a defined plan for you at your next infusion and that you can regain confidence that you will be carefully monitored. Sometimes there are no adequate words to describe what we go through on this cancer journey.
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Teedoff, wow..just wow. So sorry you have one more stress to handle.
Brain is tired, this message is for GG27.
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thanks all for your kind words. I will be seeing my trial RN and MO before my next infusion. I'm not sure if the charting is done electronically or not, but the RN's did call my MO & she said I could either skip this treatment or they would continue it at 30% which is what we did. My MO & I have a very good relationship, she knows me well & will have a plan but I just could not believe this happened again. I don't think my body can handle it one more time.
I don't know if nab-paclitaxel is available or not, honestly I don't even know what that is, but thanks Moth for giving me that name so I can ask MO & do some research. I did read the list of protocols for an allergic reaction to taxol & was surprised that they did not give me any more premeds, I did ask.
The Dr who was in the chemo area the week prior was much better than this nurse practitioner that was there, she was a piece of work that's for sure & honestly I didn't even like the RN's who were working in my room that day. I don't like the Vancouver centre nearly as much as Nanaimo but the trial refuses to let me have paclitaxel closer to my home. I am going to fight this as yesterday there was nothing done for the trial, no blood work, nothing.
I am quickly running out of options so I need this to work for me. I will post any updates. Again thank you for all the support, it means the world to me. cheers, dee
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dee, nab-paclitaxel aka Abraxane is albumin bound paclitaxel. It doesn't cause nearly as many allergic reactions as plain paclitaxel and they administer it with no premed. It's way more expensive though. They're sort of the same but not all MOs or trials consider them equivalent drugs.
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GG, hope your next infusion goes well and that bloodwork and scans give you good news that Taxol is working for you.
Moth, you always have good information about treatments. I guess we learn a lot along the way
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I had your reaction last October with my taxol infusion. I wouldnt want to go through it again. They added steroids to start a day before and continue a day after plus the day of. It worked but I eventually went manic and my DD begged me to talk to the oncologist.
I was then switched to abraxane with no steroids and just compazine for a premed. I also get a liter of fluids with it to combat any dehydration. I’ve not had any reactions.
It’s a crime to be subjected to that kind of reaction more than once. I would ask how your treatment is prescribed and if it’s not slowed down have them call your doc.
You are one strong lady to get on a plane afterwards.
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Hello Taxol people! I started weekly Taxol with Avastin last Friday. So far I've been very tired yesterday and today (so days 3 and 4) with some light headaches and a sore sore mouth. But otherwise ok. I had 8mg of dex IV before the infusion (to pre-empt any allergic reaction mostly) along with some stomach meds and Benadryl. I felt really well on Saturday but very chemo-y yesterday. I'm hoping by tomorrow I start to rally so I ghave some decent days before doing it again this Friday.
If anyone has any Taxane mouth tips in particular I'd appreciate them - it's the thing annoying me the most at the moment.
Oh, and I'm 4 weeks out from whole brain radiotherapy too. Which will be adding to the tiredness
Solidarity to all
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Hi Phet,
I started to have some mouth sores last October after having been on taxol for a while. It was a mild case that went away after a few days. Magic Mouthwash is good to have on hand and and warm water baking soda rinses work for some people as well. After I had a slight dose reduction and went on a 3 week on / 1 week off infusion regime, I never got them again.
I had a bad case in 2015 with my first chemo, AC. They were so miserable, so I hope you get yours cleared up quickly!
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For those on weekly Taxol, does your MO switch you to different treatment when (or if) you become stable? That is, before you progress on Taxol.
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Not yet because there isn’t much left. Depends on next scans. Even if working, we may want to try what’s left in the shrinking options and may return to Taxol depending on results. I only have one mutation and Piqray was so awful with side effects that we had to quit. We may circle back to earlier treatments if my oncologist can document supporting evidence to get approval. He is very pragmatic, consults with colleagues, and draws on what works with both his and other’s patients. He is big on quality of life and weighing risks/benefits. I am confident inhis approach.
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I started Taxol in late September and my first scan in January showed fantastic results. My second scan was a mixed bag and that coupled with my rising tumor markers indicate that I will probably be switching treatments in the immediate future after my next scan which is coming right up. My neuropathy has become severe over the last three months and has really diminished my qol. I too have very limited options.There are a couple of chemotherapies left for me but they both also cause neuropathy so that really isn't a good option.
I haven't tried aromasin or arimidex yet.
If I had known about local treatments by IRs when I first developed liver mets I think I would have been better off, but now both lobes have a lot of very diffuse tumors and I'm not a good candidate for that either.
On the plus side, I hear that leeches are making a comeback!
Onward and upward!
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Katty, a quick question: What are IRs?
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To answer your question, Sandi, for me, at initial mbc diagnosis with extensive liver mets, my oncologist said we would try to put it into remission with taxol, then maintain with hormonal therapy. She planned four to six cycles of 3 weeks on 1 week off. After cycle five, I described my neuropathy (back then we did not ice), and she said we should stop there so the neuropathy would not become permanent. Fortunately I had achieved NEAD, so that decision was not hard. I do not know how the plan might have changed if I had already had other lines of treatment for mbc, or if I had not been NEAD. There was one member here in Australia who stayed on taxol for years, I think.
IR=Interventional Radiologist
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Thanks Kattysmith! I'm going to ask the nurses for something better for my mouth when I'm back in for next treatment tomorrow. At the moment they've just given me Caphosol and to be honest it's not doing much. So far it's my most annoying side effect. I also have a sore lower back and thighs today, I'm taking some pain killers which is managing it but I think it's the Tax aches.
Interesting to hear some people have done Taxol for years!
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I have a question to all. Why do you/your MO choose Taxol, rather than Abraxane? A taxane is likely in my near future as I already failed two lines of endocrine therapies and Xeloda. So I’m trying to weigh pros and cons of taxol vs. abraxane. From what I read it seems abraxane has less side effects, and maybe more effective (?), but why we have so many people here on weekly taxol?? Any thoughts orinsights are greatly appreciated!
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Taxol is cheaper.
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Figtree - I agree with Shetland. My MO put me on Abraxane however. I had Taxotere when I was early stage. Don't know if that factored into the decision at all as the MO never even mentioned an option of going on Taxol. But that does not seem to be the norm as you have observed here. Insurance covered Abraxane with no problem though. Good luck.
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Agree, Abraxane costs x12 the price of Taxol according to my oncologist. He starts everyone on Taxol , no quibbles with insurance .Then ,if like me, you have an allergic reaction during infusion or severe side effects he transfers patients to Abraxane , without arguements from insurance. I have private health insurance in the UK.
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Thank you shetlandpony, moissy, and denn10 for your reply! Yes, insurance coverage plays a big role in what we can or cannot do, unfortunately:(
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hi got a question for anyone who has been on gabapentin or other drug for neuropathy.
I'm not on Taxol now - last dose was back in 2018
But I AM still on Herceptin/ Perjeta which also lists neuropathy as a side effect.
I was having slight pins and needles in my feet for awhile which has gotten substantially worse since my second dose of COVID vax. I had an episode of swollen feet and ankles five days after the vax. That subsided but now the tingly feeling has gotten worse and when I lay down at night it crawls up up my ankle and calf. The initial tingles were very tolerable but what I'm feeling now is getting uncomfortable. Not possible to know exactly what the cause is - just saying the intensifying discomfort coincided with my second dose
My question is - if the doctor puts you on Gabapentin for neuropathy , does the neuropathy go away ( is it “cured ) or do you just keep taking this drug to manage the pain/discomfort ?
Thanks in advance for any responses
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Hi Olma,
Gabapentin is used only to manage pain and discomfort. Be sure to let your doctor know what's happening and hopefully you won't see any worsening of your symptoms.
Good luck!
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Thanks for that info, KattysmithI also just listened to this podcast here on BCO, apparently the chemo induced neuropathy can resolve on its own so that's good to know:
https://www.breastcancer.org/treatment/side_effects/neuropathy
I'm also going to ask about getting checked for deep vein thrombosis or similar issues, since I had an episode of swelling after flying last year and now this.
I had told both my cardiologist and my onc about that last year but they were kind of “wait and see if there are further issues" so we did nothing else. But my onc did say I could be referred for US to check for vein issues. So, we shall see.
Thanks again and I hope your treatment is going well.
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Gabapentin does help, but it made me dizzy and constipated. I now take Lyrica at bedtime with no side effects. Calms the feet and helps with sleep. I've been doing Taxol 3 weeks on, one week off for eight months so neuropathy has gotten worse over time. Now on a reduced dose which seems to have helped with neuropathy.
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thank you, good to know! Take care
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Hello Weekly Paclitaxol friends,
My 3rd weekly infusion was canceled due to wbc 1.2, ANC 0.3.
My MO is checking liver function tests and CA15.3 and will decide to either go with 2 weeks on, 1 week off or proceed with Y90.
My questions are these:
1. How long did your Ca15.3 start decreasing after ca cell die off period? Mine is still increasing at week 3 after starting Taxol.
2. Did anyone still have increasing alkp, but decreasing SGOT after 3 weeks? My tbil and SGPT are norm.
My mets are only in liver..3 cm, 7 cm and 10cm plus diffuse. My MO plans to scan at 6 weeks and the F1 is pending.
I will post in liver mets if don't hear feedback from this thread.
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My MO does tumor markers every three months, and the drop was pretty dramatic the first 6 months. I'm due to be tested again next week. Over the past 5 years my trend has been a gradual rise in tumor markers before scans showed any progression. My MO is starting to agree that markers actually indicate treatment failure for me. So far WBC, RBC, and Neutrophils take a hit each cycle but have never fallen far enough to cancel treatment. Hepatic panel still good. Kidneys a little stressed but seem to rebound. Creatinine and egfr hover at normal or slightly below.
It is so true that we all respond differently to various treatments along the way. I'm in for big time anxiety next week if markers go up. No scans until August. There's not much left on the treatment menu that isn't scary. I just turned 73 and have been at this for a long time so getting the energy for a clinical trial is not an appealing adventure. On a purely personal level, I would try Y90 if I qualified.0
