Weekly Taxol group
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Sorry you’re having this SE. I did rinse my mouth every couple hours with salt water while having the taxol treatment. I also got a prescription for magic mouthwash in addi, worked great. I hope this works for you as well 🙂
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Sorry you're having this SE. I did rinse my mouth every couple hours with salt water while having the taxol treatment. I also got a prescription for magic mouthwash in addi, worked great. I hope this works for you as well 🙂
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Hi All,
I just had my first Taxol, Herceptin, Perjeta infusion last Thursday (as well as all the premed steroids/Benadryl/anti nausea). This is my first round of chemo (I haven't had anything else up to this point and I haven't had surgery yet). On Friday and throughout the weekend I came down with a headache and major brain fog/disorientation. It felt very similar to the time I had a mild concussion (headaches, mixing up words, slow thinking, disoriented, queasiness from the mental confusion) to the point where I wasn't able to drive. Has anyone had this issue? I felt like I was losing it mentally, it was awful.
Thanks!!
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Gryffy-those are all common side effects of chemo but given it was your first run and you had that significant of a reaction I'm guessing it's too much or wrong fit for you. You might want to call your nurse/ md about it. I hope your feeling better!!
~Katie💗
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ipenelope: thank you for your advice! Thankfully it lifted on Sunday afternoon. I will be meeting with my md before my next infusion on Thursday and discussing this. Unfortunately, I am not even on the heavy duty stuff, just Taxol at the moment. I may have to work through it and accept I will be confused for a few days.
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Gryffy--I tolerated the pre-meds/T/H pretty well every time, but what you're describing sounds similar to what I felt sometimes after H only (after I was finished with T). You hear it's really no big deal, and relatively it's not bad but there were some sessions when I left feeling like I was a little drunk--like driving myself home was *really* hard. I ate a *lot* or protein through chemo, had cut down after I finished, and thought maybe that had something to do with it. I started making a point to eat red meat the two nights before my H infusions, and it helped A LOT.
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Hi everyone!
Im on round 6/12. I'm curious if anyone has experienced:
1) unbearable hand itching that is randomly triggered. For the itching, I've tried topical benadryl, claritin, and zyrtec - nothing touches it. It's mostly the tops of my hands, and in between my fingers, but not my palms.
2) bone pain (not just joints - but the bones themselves), not on neulasta or other bone stims.
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yes to the bone pain! It's a known taxol side effect. It was bad for me around 4th to 7th treatment and then got better. I had number 13 last week and no bone pain at all this week. Mine was in my whole torso - shoulder girdle esp, hip girdle, and femurs. Gabapentin plus Advil sort of helped. Got opioids as back up but ended up never using them.
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Thanks for helping me feel normal. I thought it was just me! It's been fleeting, but I find it becoming more frequent, even if it does come/ go.
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When to shave your head...
I am on a clinical trial of weekly THP, then surgery, if cancer hasn't cleared then I do ddAC.
I have heard your hair on taxol can either fully fall out or just thin out. I am not cold capping. I just had my third infusion this past Thursday. My hair has started to fall out. Not clumps, strands when I run my hands through it.
Do I see if it just thins or just bite the bullet and shave it? How do you know when is the right time?
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Gryffy I knew when my hair falling out made me itch all over, it was time, but I did a.c. first, taxol my hair started to come back before the last dose I did dose dense taxol.
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Gryffy--you will lose your hair. I had a college reunion after treatment #3 and enough held on that it looked pretty normal. Around #4 I cut it down to about an inch (for another party) and that Sunday put the smallest attachment on my nippers and got rid of most of the rest (after a shot of courage!). I think you'll know when it's thinned enough that it starts to look weird.
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Hi everyone! I'm 28 years old - just finished 4 cycles of AC and I begin 12 weeks of taxol in a few days.
I'm curious - I lost my hair on AC, but managed to keep my eyebrows and eyelashes. What are the chances I'll keep them on taxol? My nurses seem to think that if I didn't lose them on Adria, I probably won't on taxol, but the internet seems to think different.
Has anyone else kept their eyebrows and lashes on AC, but then lost them on taxol?
Thanks!
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Dear Gjubak,
Welcome to the BCO community. We are sorry for your diagnosis and glad that you reached out with your questions to our members. We hope that you will find support and helpful information here on the discussion boards. You can use the search function in the tool bar and look for other posts/members with similar issues. You can use the words "eyelashes and taxol" for example and it will lead you to other posts with those words. Be sure to use the quotes when using multiple words. Here is a link to the Cold Caps topic where members are also discussing eyebrows and lashes. You also might want to check out the form for Those who are Young with Breast Cancer as a way to connect with others in their 20's. Stay connected here and let us know how we can help you to find the help that you need.
The Mods
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Gjubak, welcome to the group! Sadly you will most likely lose them on Taxol. I kept my eyelashes and eyebrows through AC though they thinned but i did lose them completely with Taxol. Sorry!! Many women are trying stencils or brush on berries type things. I'm losing my lashes and brie again, seriously thin, so i just outline my upper eyelid with a line that's the same color as my mascara and use an eye shadow without any sparkle that is close to my brow color and full in on my own.
Best of luck!!
~Katie💗
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Ingerp and Gamb: thank you!!!!! Very helpful. People have noticed, mostly because I am constantly running my hands through it and see it fall out. It is making me a little light headed feeling and anxious watching it fall out. I need to put my big girl pants onthis weekend, break out the clippers and and rock the shaved head. I really appreciate your responses!!
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I hope everyone is doing as well as they can! I started a thread but was directed here. So much great information! I wanted to see if I could get some hopefully piece of mind from some of you that have been on Taxol for a bit. I just ended four cycles of AC and am starting Taxol on the 14th. I have really struggled with nausea and heartburn and am trying to find out if I'm in for the same with Taxol or if your experiences were better? Thank you in advance for any advise.
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Has anyone had sinus issues while going through weekly taxol?
I am being treated for a sinus infection but I am wondering if it is a side effect of the Taxol. I have been having sinus headaches/pain for about two weeks now. Not really congested though. Driving me crazy0 -
Kay,
I've been through it and thankfully both those issues went away once done with AC!! I hope they do the same for you!!
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ipenelope: Thank you for the information! I had my treatment yesterday and so far so good...knock on wood:) I got the okay to start using L-glutamine for neuropathy. If anyone has used it what was your dosage? As well as did you use capsules or powder? I've read the powder can help with mouth sores as well?
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In 2018, I used l-glutamine powder, 30g/day divided into 2 doses. It's tasteless and doesn't really want to dissolve - more of a suspension. I took it with B6 and icing and had only mild neuropathy which resolved.anout 2 mos after end of treatment.
Be aware that it can cause liver enzymes to change. This time around I had to stop using it. We're not sure if my liver enzymes were fluctuating due to mets or immunotherapy or this, so I cut it just in case. Someone else on these boards has liver alterations from l-glutamine.
Now I take only B6 100 mg for neuropathy prevention . And I ice like crazy during treatment! Lots of very very cold packs. I've been on taxol this time for almost 6 months and have had very very minimal neuropathy.
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Did you do Carboplatin as well? I don't really want to ice during that portion of the treatment because it 4 hours and the Taxol is only one. That being said, I will!
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no carbo, just taxol in 2018 (after adriamycin & cyclophosphamide - didn't ice for those). Now I have taxol with immunotherapy (but the immuno is only 30 min) I ice for the 1 hr taxol + 10 min before (I start during my premeds) & after.
I think carboplatin is less likely to cause neuropathy but to be safe I'd check with your MO
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Moth,
I iced during my taxol treatments as well. I brought a large cooler full of ice packs and wrapped my hands and feet with the packs. I wore socks and thin gloves to prevent skin damage. I think it worked because I do not have neuropathy. When an ice pack would get warm, my partner would just switch them out. We used long bands to wrap the ice packs around hands and feet. The bands had velcro to secure them. I iced 15 minutes before and 15 minutes after each taxol infusion (took about two hours total because they usually gave me quite a bit of saline solution with each treatment due to very low blood pressure)
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I just finished my 4th AC infusion this past Monday. Despite taking Claritin, I've had bone pain from the Neulasta each time. It has definitely been the worst part of treatment for me. I'll start weekly Taxol on the 28th. My MO told me I would no longer need Neulasta while on Taxol. But he also told me to take Claritin throughout Taxol. Has anyone else been told to do this?
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Hi Brittonkb.
I was told to take Zyrtec before each taxol infusion. I did not have to take it at anytime other than before the infusion. I was told that it would help with allergic reactions to Taxol. I was also prescribed dexamethasone, which was also to be taken before infusions. I was told that the corticosteroid was also to help prevent allergic reactions. Luckily, I was able to tolerate taxol well.
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Thanks! That gives me hope. I have so dreaded the bone pain with Neulasta.
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I'm the oddball who both in 2018 and now too has to take grastofil or neulasta even on taxol. Most people manage.to keep their wbc up without it but there's a subset that doesnt - so just in case it happens to you, you're not alone. I do 3 shots after every weekly taxol, starting on day 3. I take desloratadine, and am also on gabapentin. No pain . I'm active, and restoring my fitness.
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Moth - I saw your post about using L-Glutamine. My MO also recommended this. Have you found a tolerable way to get this down? I've heard it's awful with water. I'm thinking orange juice but not sure.
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brittonkb, I had it in juice. Cranberry cocktail or orange etc. I did gulp it in water too. It's pretty tasteless, just chalky and gritty.
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