Weekly Taxol for Stage 4
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Welcome and I hope taxol is a successful treatment for you. Getting your hair cut short is a good idea. It will fall out in a few weeks unless you choose to cold cap. I did wear beanies around the house but decided to wear a wig when I left the house. headcovers.com is a good resource for wigs and accessories. I learned how to draw reasonable eyebrows and wore eyeliner to camouflage my lashless lids. Low and behold, I now have a fuzzy hair that seems to be growing Trying not to get too excited but at least I don't need a sleep cap to keep warm. I'm sure you will get good advice from the other ladies as well. It's true that everyone is different and you will find what works best for you. The good news is that Taxol and Abraxane can be very effective
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Thanks, Teedoff. I hesitated about moving to IV chemo, but it became clear to me that if I want to live another year, I need to. I picked out several scarves to wear, and I guess I will get some kind of wig, but I find them so uncomfortable. That may be because I've only ever tried the cheap, costume style wigs, though. Do you find yours too warm or too tight, or too itchy when the hairs brush your face or neck?
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To add insult to injury, I have a large head and am limited in choices. Human hair wigs are way too expensive and require lots of maintenance. My favorite wig brand is Ellen Wille. Her wigs are less dense and not wiggy looking. I do use a wig grip. After a few hours they get somewhat itchy and uncomfortable. You do tend to forget you are wearing a wig if you are busy. None of this is easy, but bottom line is we hope to gain more time.
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NineTwelve - Welcome! I'm newer here myself, so I don't have the experience of the others here. I have learned so much from these lovely ladies! I've had two treatments with abraxane, my cycles are two weeks on, one week off. I've never had my hair fall out before, so this will be a first for me too... Wishing you the best outcome with this new treatment! Take care and be kind to yourself
Teedoff - I'm not cold capping, so thanks for the info about head coverings and wigs! I'm looking into that as I suspect my hair will start falling out soon.
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Thanks, Teedoff and lafsunshine! I'm also not cold capping, so the wig recommendation was welcome. I did buy some ice pack thingies to try to keep my feet and hands cold. I'm trying to get a few things taken care of ahead of time so I don't have to deal with them when I'm not feeling so hot. I'm single and living alone, so no one to delegate to.
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Please let us know how your treatment goes. You are a “smart cookie" (you can tell I'm an old lady) to have done your homework and are starting off well prepared. We are all here to answer questions. No question is too weird or unimportant. At least one of us will be able to provide good information or at least know who we might ask. Together, we have a pretty big brain trust. I learned so much from reading this thread from the beginning as well as having had Taxol back when I was first diagnosed.
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Hello Weekly Taxol folks!
I have completed my 5th Taxol infusion. My MRI of liver shows stable disease..no progression, but no regression either. My largest tumor, 10 cm, showed a centric necrosis. My MO said that was good. But is it?
Now that I am stable, I will have the Y90. Taxol Washout, I believe is one week. So my IR and RO are deciding when. My IR and MO both agreed that I was a candidate for both lobes at same time.
After Y90, will either go back to Taxol or try the antihormonals again. I asked about effectiveness with the FGFR1 amp mutation as I thought this mutation would not work with AIs or any antiestrogens and CK4/6. But my MO said no documented and validated proof to that. Except, I did progress quickly on Letrozole, Ibrance, I assumed it was ftom this mutation.
So, I am making my list:1. Aromasin/Afinitor, 2. Faslodex 3.Verzenio. I also have a liat of the antibody conjugates and CK7, plus trials that I qualify for now or later.
Will cross post to liver mets.
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SandiBeach57- Good to hear on the stable scan and that you can do both lobes at the same time. Wishing you much success with the Y90!
I also have the FGFR1 mutation, and I also did not do well on Ibrance/Faslodex, (10 month run), I did not know that there could be a connection with that..... very interesting. I'm curious to see what you and your MO decide on what your next course of treatment will be after Y90.
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SandiBeach, all the best to you on your Y90 treatment. Go get those little buggers and hope they stay away!
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Hi all,
I'm on a trial with Tomivosertib & Abraxane (weekly for 3 weeks, then a week off) I am having terrible SOB on exertion of any kind and just don't feel well at all. MO doesn't seem terribly concerned about it and the chemo RN last week kind of indicated that this is how it is.
I changed taking tomivosertib from lunchtime to after dinner to see if that helped, but I think it's probably the Abraxane. I know the RN said my platelets were somewhat low (100) so not low enough for a transfusion & I have had anemia my whole life.
I can't just sit around all day, feeling like crap, maybe a couple of days but this is ridiculous. Any thoughts? tricks? tips?
thanks! cheers, dee
cross posting to the clinical trials thread as well.
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Hi GG, I hope you got an answer to the shortness of breath.
I'm popping in to say today is my first day of weekly Taxol. I feel all the feelings and I don't think I'm ready. My friend assured me that if I'm not ready today, I can use what I learn and be better next time. This is a long haul we're on. Couldn't sleep last night for hours because of the steroids, so I updated my epitaph. Some day I need to get my affairs in order. How mortifying it is to think of my brother scratching his head at my desk and saying, she didn't take care of any of her financial business, but at least she wrote a poem about death.
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GG27 - I’m sorry to hear that you’re having SOB. I have had 4 treatments of Abraxane, and I have not had any issues with that -other issues, just not that. Is it possible it’s something else that is causing the SOB and not the Abraxane? I’m sorry I’m not much help....
NineTwelve- thinking of you today with your first treatment of weekly taxol - Hang in there,You can do this!
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GG27: Shortness of breath may be a result of loss of normal activity so that when you get up to do anything you tend to huff and puff. For me, the more I lounge around, the less able I am to easily move around. Kind of a Catch 22. This is just my experience. I am pushing to be more active, but it’s not easy.
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I'm afraid that my SOB isn't from not doing anything, I painted my kitchen 3 days ago when I was at the end of my 2 weeks break from chemo. I push myself everyday as we are renovating our home, doing all the work ourselves. Today I am filling the holes in the ceiling so I can paint tomorrow, but I fill a strip, then have to stop because that small amount of exertion causes me to need to sit down before I fall down. The day or 2 after chemo I can barely stand long enough to have a shower. They have held the trial drug until next week to see if that helps.
No one seems to have any answers. My WBC counts were good, as was my ANC, tho my platelets are at 100 and I have always had anemia.
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GG27, in 2016, I developed undiagnosed SOB. It turned out that my liver mets had spread to my lung arterioles. Neither Xray nor CT picked it up as everyone was looking for PE.
A VQ scan confirmed there was lung perfusion problem. I could not have gold standard of lung bx as I was in pulmonary distress.
It was tumor emboli and called "Pulmonary Tumor Emboli Syndrome'. AC took care of it.
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Thank you SandiBeach. I will send this info to MO. I haven't heard of most of this that you posted, but I will do a bit of research.
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My first day of Taxol was pretty good, except for an infuriating string of texts from a friend at 8 am about her cat which I replied to, and I mentioned I was doing my first IV chemo. I told her it was weekly taxol for stage 4 if she wanted to look it up. Note, I have been doing the cancer thing for seven years and she knows that. She didn't know what treatments I have already had, and she has never had cancer and is not a medical professional of any kind, but she assured me AS I WAS HOOKED UP to my infusion getting the taxol drip, "This sounds awful! Hair loss, maybe permanent, plus not good results. Are you sure about it? You don't need to do this."
This is the friend who told me at the beginning to never to do chemo because it's poison and I should follow the Budwig diet instead.
I wrote back in all caps YOU ARE NOT HELPING. I sent her a picture of the IV rig next to my chair. This is happening now, I wrote. You are a good friend, please be kind.
Note, she does not reject science and she is fully vaccinated. She does not understand cancer and she never will. I just wish I hadn't mentioned my treatment to her. I thought I could count on a "good luck and I hope it goes smoothly" from this friend of over two decades, but I was wrong.
My treatment was over in about three hours and I went home and had a normal day. Didn't sleep as much as I usually do. Still feel pretty energetic.
I have a question about the anti-nausea meds. I think I'm supposed to get some nausea on day 3 (tomorrow). Should I take a pill with my first meal of the day, or wait until I feel some nausea symptoms?
Edit: They gave me generics for Zofran and Compazine.
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NineTwelve, I never had nausea on taxol. We don't get anti-emetics for it. I'd clarify with your infusion center if that's a scheduled med or a PRN.
Sorry your friend is so unhelpful. Sigh. People just don't get it.
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Thanks, Moth, that's a relief. I hate vomitting and feeling sick to my stomach.
Yeah, I wonder at where some people get their ideas from sometimes. Like, sure, chemo can be terrible, but I don't think it's as bad as letting the tumors completely take over both lungs.
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NineTwelve, I am given Zofran under tongue prior to Benadryl infusion, then followed by Taxol.
I had steroid infusion the first two times, then stopped when it appeared that I would not have reaction to chemo..but still have the Benadryl.
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Thanks, Sandibeach. The steroids were a trip. At first it felt like I just did some poor quality speed or drank too much caffeine. But later it was like I had all this strength and youth again. My aches and pains were gone and I felt pretty good. Haven't been sleeping very well for the last couple nights, though. Anyway, I'm relieved that the dreaded IV chemo that I've been so afraid of for years was not nearly as terrible as I thought it would be. Now I just have to worry about the cumulative effects. (Yes, I do have to worry about it. I always have to worry about something.)
So far, no nausea.
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Checking in to see who is still doing Taxol/Abraxane for Mets and to ask how it's going for you. After 10 months and one dose reduction, I've just switched to one week on, one week off due to increased neuropathy, fatigue, shortness of breath and some episodes of tachycardia. I will be getting an ekg in a few days. Good news is that bloodwork still unremarkable and July scans stable. Well, we'll see if this schedule makes a difference in how I feel. I hope to be able to continue and that Taxol is still working for me. Not much left in the tool box
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Teedoff, I'm still here; I'm doing Abraxane q 3 weeks w/ one dose reduction.
It's great that it's working for you but sucks that you're SEs are mounting up.
I assume you're icing and using B6? i had SOB but I seem to have recurring pneumonitis so I don't think mine is related to the chemo. My fatigue comes & goes - definitely need a nap the day or 2 after treatment but then it gradually becomes manageable, esp with exercise.
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Teedoff, I am still on weekly Taxol ( 2 weeks on/1 week off). Just finished infusion #8. Had Y90 two weeks ago on right lobe, in 4 weeks will do left lobe. Staying on Taxol during Y90. Tired after infusion, but make myself walk even just around my house or mailbox. It does get better a few days after infusion and I become more active. My platelets an WBCs are hanging on, but my Hgb runs low, like 8.5.
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Funny story, I signed up for the Look Good, Feel Better make up program via Zoom. I did this thru my cancer center and a make up kit is mailed to you.
I do not wear make up, but heck, gave me something new to learn.
While the instructor was showing us how to apply mascara, I stuck the wand in my eyelid twice. Then I used make up remover to remover mascara, thus also removing the foundation, concealer, eyeliner and eyeshadow. So while I was trying to fix this (and unsuccessfully) , the instructor had moved on to blush and lipgloss. I was visible to everyone on the Zoom call...so I am sure I entertained a LOT of people, but no one said a word.
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No pneumonitis so far. My SOB comes with walking, making a bed and basically any minimal exertion accompanied by pulse over 100 until I sit and rest. Oh, yeah, I do ice and and B6 plus Alpha Lipoic Acid. Lyrica has helped with neuropathy tingles and sleep. Walk like a drunken sailor sometimes. Trying to balance side effects with longer survival. Um, survival wins for the time being. I'll know when enough is enough!
So glad you are here and doing well on Abraxane. I hope you get a long run. I enjoy reading your posts on other threads. You have done your homework and are more than generous with your knowledge and empathy. Thank you.
SandiBeach, thanks for sharing. We've all had those Oh No moments. Could be a whole new topic if people want to fess up.0 -
I have been on Taxol ,then abraxane since Dec 2020. I have recently dropped from weekly to every other week because of increasing side effects . Oh that drunken sailor walk ; if i get up and start moving without concentrating.
Last week, I may have had shingles [ waiting for results to confirm] followed by a urine infection both of which laid me out flat and I was ready to stop all treatment. I am slowly getting better but now have to face chemo tomorrow with very mixed feelings. I am seeing my oncologist first, so hopefully that will give me some clarity. I hate cancer!
Thanks sandibeach for lightening the tone
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I’m on Abraxane, have had 5 infusions, #6 is next week, (2 weeks on, 1 week off). SE for me are diarrhea, facial flushing, body aches and tiredness. The body aches and tiredness usually just last for the first couple days after the infusion. Facial flushing comes and goes, (when it happens, I look like a tomato, lol). It’s the diarrhea that I’m having issues with....trying to get that under control, Imodium is my friend! Scans in a couple of weeks to see if treatment is working.
SandiBeach- wishing you much success with the Y90! Thanks for sharing the make-up story, it made me laugh!
Denny10 - how awful having to deal with shingles and a urinary infection, glad to hear you are starting to feel better!
Teedoff - congratulations on stable-mabel, that’s great! Sorry that you’re dealing with so many side effects, fingers crossed that the new dosing schedule will help!
Moth- sounds like you’re holding your own -(I’m hoping to get to that point), glad to hear it!
Thanks to all you lovely ladies for sharing-Praying that our current treatments continue on for a very long, long time and that our side effects are manageable!
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denny10, shingles and a uti?! 😟 that sounds awful, hope its resolved. I am on prophylactic antibiotics for uti for well over a year now. That seems to be working for me though recently had to switch the antibiotic as I was having some breakthrough symptoms.
Lafsunshine, yeah it's been 18 mos now, first taxol, then abraxane. It's been a pretty tolerable treatment for me so far. I even had totally normal neutrophils last cbc (low lymphocytes tho but that's my baseline norm...) I feel very fortunate to have such a long run on this.
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Moth, thanks, interesting that you are on prophylactic antibiotics, I will jot that down to discuss with medics if uti keeps reoccuring.
The tests proved I have shingles. I now have pregabalin, lyrica, to ease the pain. It looks like it may help with neuropathy and low mood too. I have been advised not to drive for the first week, which is already making me feel trapped [ but i have not been driving much anyway!!]
Bloods ok , oncologist said it was ok to have chemo, so I went ahead.
I am trying to be positive and pleased it's not a cancer flare, but it's hard at the moment.
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