Weekly Taxol for Stage 4

1798082848588

Comments

  • JoynerL
    JoynerL Member Posts: 1,392

    Oh, Grant....this is so helpful! It sounds as though were you to do it again, you and Liz might not have shaved her head initially? Thank you!

  • lizo1
    lizo1 Member Posts: 94

    Lynn - In hindsight, I'm not sure. Liz had big long hair when we first met and lost it all back in 2006 (we shaved it first) after her first treatment of AC. I think she looks beautiful with short hair and even now with a buzz cut. Liz has a couple of permanent bald spots due to rads in a a couple of areas, so keeping it short works well to blend those areas. It's also much easier to care for her short hair so I'm not sure how long she will grow it out.

    I guess in retrospect, she probably wouldn't have cut her hair if she knew it wasn't going to fall out.

    Grant

  • JoynerL
    JoynerL Member Posts: 1,392

    Thanks, Grant!

  • Kattysmith
    Kattysmith Member Posts: 688

    Lynn, my hair my hair was already short when I started taxol late in September, but as soon as I started to lose it , I went to a very covid-conscious barber and had him buzz it to about a half an inch. Within a couple of weeks I had lost most of that too and I had sort of a moth-eaten look, haha! I was completely bald until about a month ago when I noticed that I have a very very very short white fuzz all over my head so maybe it will continue to grow!

    Katty

  • moth
    moth Member Posts: 3,293

    My hari was a bit longer than chin length bob when I started taxol. It all fell out about 6 weeks in. I didn't shave it, just let it fall out.

    I was bald for about 4 months, then started getting stubble and it started regrowing. When I switched to abraxane in Nov, it all fell out again and now I have little bits of stubble again. Taxol does weird stuff to hair follicles so it's hard to predict how things will go. I don't mind being bald and have worn a wig exactly once since being dx'd with mets. Though it's been so cold I'm almost always wearing a toque right now.

  • Jjzn
    Jjzn Member Posts: 114

    Ok I'm getting a little jealous of you guys who are getting your hair back! :)

    I lost my hair after three treatments and have not had any grow back. I just started my 5th month on taxol.

    JoynerL I do have to say my favorite wig is a halo wig. It's so easy to put on and I just put a hat over it. Quick and easy.

  • JoynerL
    JoynerL Member Posts: 1,392

    Well, the MRI as okay. So, for now, I'm sticking with Xeloda. I expect it's a matter of time before the Taxol infusions. Thanks to all for the information!

  • lizo1
    lizo1 Member Posts: 94

    Lynn - That's great news! I'm very happy for you!

    Grant.


  • Kattysmith
    Kattysmith Member Posts: 688

    What great news, Lynn!

  • Jjzn
    Jjzn Member Posts: 114

    Has anyone switched to abraxane after they progressed on taxol? My tumor markers have started to go back up. They are not back to where they were when I started taxol but I want to catch it before it goes too far. I am thinking I want to try abraxane but worried my mo will say it won't work if taxol isn't working. So just wondering if anyone has done this. Or gone from abraxane to taxol because of progression? I know some have moved because of side effects.

    Thanks

    Julie

  • moth
    moth Member Posts: 3,293

    I switched to abraxane from taxol. Taxol Mar-Nov 2020 then switched to Abraxane. But it wasn't really due to a progression, although coincidentally I did actually have two (lung & bone, offset by continuing liver shrinkage so I'm 'technically' stable)... it was more because the evidence for the immunotherapy I'm on is that Abraxane is the more effective combo & I was coming off a clinical trial where taxol had been used.

    There are some studies showing that even in taxane pretreated groups, abraxane had some benefit. This is a study from my provincial cancer agency "Those findings potentially support the hypothesis of non-cross-resistance for nab-paclitaxel despite exposure to the other taxanes currently used in the treatment of breast cancer. As well, our results are consistent with other studies of palliative treatment, in which higher response rates are typically observed in first- and second-line treatment rather than in later lines of therapy." it's a free pdf download if you want to use it to try to convince your MO https://www.mdpi.com/1718-7729/20/2/1256


  • Jjzn
    Jjzn Member Posts: 114

    MOTH

    Thank you for the info. I just don't want pass any drug up because they think it won't work because of a previous drug. I will check it out! Of course I know it could be due to something else. I'm having problems with one kidney draining so hoping that may be the cause for the increase? But still waiting for my appt to have that checked out. And I did miss one apt due to snow. But it was creeping up before then too soo?

  • moth
    moth Member Posts: 3,293

    Hello taxane friends! As we know, our ability to stay on these meds is often until progression or "unbearable toxicity" which often is neuropathy.

    I wanted to share this review article from the Journal of Cancer Survivorship about chemo induced neuropathy

    First takeaway is that studies are scant & poorly designed & hard to compare....

    BUT just about the only thing we can sort of say is that EXERCISE either helps or at least doesn't hurt.

    I think, even given this tiny bit of poorly defined data, I think it's still prudent to exercise as much as we can and is safe for us to preven/treat neuropathy. If it lets us stay on a treatment longer, it's well worth it!

    "A systematic review of behavioural and exercise interventions for the prevention and management of chemotherapy-induced peripheral neuropathy symptoms"

    "Ten exercise and two behavioural interventions, including those that improved CIPN knowledge and self-management resources and facilitated symptom self-reporting, led to reduced CIPN symptoms during and/or after chemotherapy treatment."

    https://link.springer.com/article/10.1007/s11764-0...


  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122

    Thanks moth. I don’t notice it so much in my feet except when I put on socks or have been on my feet for awhile. Thankfully they don’t hurt. Does it get any better when the meds stop or is it permanent?

  • moth
    moth Member Posts: 3,293

    zillsnot4me, I think it depends. I've heard some people have it improve with time and others not. Some people are fine and then get sudden worsening. Doesn't seem predictable at all :(

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122

    Thanks again for your wisdom moth.

    Another question. What do you all do about the fatigue?

  • moth
    moth Member Posts: 3,293

    I ultimately needed a dose reduction. I've never tolerated any chemo full dose. So I ended up dose reduced on weekly taxol as well and that helped a ton. I still needed naps but not every day. Now (on dose reduced abraxane) I usually only need a nap on days 3&4 post treatment

    Also daily aerobic exercise and boosting my protein and fluids really helped

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122

    Thank you moth

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122

    just checking in to see how everyone is keeping up. My dose has been lowered and on gabapentin for neuropathy. Scans in July. Vacation in July. Wonder if I can just skip treatment and play before my scans. Fatigue is cumulative and I feel it.

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Hello.

    Leaving Xeloda..starting weekly paclitaxol after 2 week wash out, June 22.

    Looking into cold scalping.

    Here I go...

  • moth
    moth Member Posts: 3,293

    Hi SandiBeach, hope weekly paclitaxel goes well for you.! I found it pretty tolerable but did need 1 dose reduction early on for extreme fatigue and bone & muscle pain.

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Good to know. Thank you for the heads up!

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    Moth, my MO is waiting for bx. If TN, then will go Abraxane/atezolizomab. We are not sure if Medicare will pay for another F1, so not sure if I will have mutation burden #. My March blood bx showed 8. My MO uses 10 as minimum # for immunotherapy


  • moth
    moth Member Posts: 3,293

    Oh I've never heard of that before. I was told if it's triple neg, then only PD-L1 matters for atezolizumab. It doesn't work if the tumor is PD-L1 negative.

    tmb matters for keytruda for ER+ but I haven't heard it mattering for atezo. Interesting. Mine is low: 6.3

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122

    just wanted to let you know I had my vitamin D levels checked. Mine was 40. I believe the scale is 30-100. I upped my vitamin intake. I have way less fatigue. It’s amazing.

  • GG27
    GG27 Member Posts: 1,308

    hello all,

    I had my first taxol infusion a couple of weeks ago on a trial with tomivosertib. Within minutes of the infusion starting I had an anaphylaxis reaction to the taxol. I missed last weeks infusion due to having a mild cold, but am scheduled for my third weekly infusion tomorrow. I am more than a bit worried about another reaction. I haven't had a chance to speak to my MO about how they will mitigate this and my trial RN is away for a couple of days.

    Just wondering if any of you had an bad reaction & what they did? With the first one they were able to get everything under control again and give me the infusion but I wasn't in the frame of mind to ask what they did.

    thanks for any insight. cheers, dee

  • moth
    moth Member Posts: 3,293

    Dee, I've never had a rxn to taxol but I've witnessed two people having one. I had a reaction to adriamycin the first time they ran it... BP bottomed out & I got dizzy (which I guess is a Grade 2 rxn from their protocol)

    BC Cancer has a standing protocol of infusion reactions. You can read what they did when you had yours and what they will do next time:

    http://www.bccancer.bc.ca/chemotherapy-protocols-s...

    They will likely preload you with a bit more meds to prevent it and run it way slower. I'd prepare for a long day there.

    Hope it all goes smoothly this time!

    m

  • GG27
    GG27 Member Posts: 1,308

    thanks for the link Moth, it's interesting reading, sounds like I was somewhere between grade 2 & 3. My appt is at 12:15 and my flight is a 5:50 pm, fingers crossed that I make it ok. I assumed I would have more premeds and probably a slower infusion. I'm trying not to worry, but it prays on my mind.

  • teedoff
    teedoff Member Posts: 63

    Allergic reactions to Taxol can sure be scary. Moth is right on about beefing up premeds and slowing the infusion. I am new to participating in this thread but have been through many treatments. A great resume for experience that I wish I didn't have.

    My current premeds are IV and include Pepcid for my tummy, Benadryl to ward off allergic reaction and Dexamethazone for all the wonderful things steroids do like cool down inflammation. Finally comes the Taxol. Already feeling the steroid energy. Will crash on Thursday and gradually rally in time to do it all over again.I do three weeks on, one week off. Please be encouraged that Taxol can work really well keeping your Mets in check and actually make some liver Mets shrink and even disappear. All the best.