Weekly Taxol group
Comments
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IslandMama- yes on the headaches- 2 advil or a small dose of tramadol should help. You should also try using Vicks vapor rub on temples, forehead and base of head (seriously it's very helpful for headaches).
Hang in there DaniellaD! I was talking to a friend today about how difficult Taxol is, even though it's touted as the "easy chemo." I'm finally DONE with Taxol, but only because my results were great and my SEs were extensive enough my doctor decided I could skip #12 (I burst into tears with relief). I was lucky; the Taxol absolutely destroyed my tumors. He's called the progress "remarkable" and can't believe he can't even feel them now (I can't wait for the ultrasound Monday). So, the GOOD news is, Taxol can be extremely effective. The bad news is, it's tougher to endure for some than most people lead you to believe, because it's cumulative and you're unable to escape. My friend and I agree it feels like Chinese Water Torture while you have a constant hangover.
She told me FAC is definitely a "sledgehammer" and while awful at times, she swears the breaks in between doses made it easier for her than Taxol. I start FAC Monday, so I'll see soon enough.I did have a few "wins" during Taxol I appreciate and may help you: 1/ My lashes and brows are still thick due to my constant use of Latisse (my doctor took off his glasses and peered at my eyes because he couldn't believe they were mine). I'm curious to see if they hang on through FAC as well. 2/ My finger and toe nails are as healthy as they were before Taxol (Dr made me take off my polish, because he didn't believe this either- ha). The tricks other survivors gave me really worked (nails painted black the ENTIRE 12 weeks with nailtiques as base and topcoat, and then I iced all nails while the Taxol was dripping... tough to do but worth it). 3/ I didn't have any numbness or pain (neuropathy) until 4 days after my 11th dose (and then it was so bad for 5 days sometimes my legs wouldn't work right!). Since I had so many other symptoms, I don't know how in the world I managed to avoid this common one for so long, but on the advice of others I increased my B6, B12 and Magnesium, so maybe that helped (I would have taken L-Glutamine too, but my dr said no).
As for the symptoms you're having now, a fairly small dose of Tramadol did wonders for the cramps, headaches and body aches. Vicks in your nose helps immensely (it doesn't burn) or Aquaphor (fyi another trick for headaches is Vicks on your forehead, temples and base of head/neck- it doesn't burn as badly as something like Tiger Balm but is still soothing). Hot water with lemon and honey is great for "Taxol Cough" which sometimes follows the nose issues.
I'm sorry you're having a hard time!!
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thanks Texas
Did you keep your hair? I feel like a bit of an ostrich. I have some growth but not sure what to expect
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thanks Texas! I'm using Latisse and hoping to keep my lashes - they are as much my crown of glory as my hair. Since I'm doing the cold caps, I can't fathom icing my fingers and toes. I do paint the nails black and use a nail hardener from Columbia that is super strong.
The SEs are more annoying than debilitating although running around after my 16 month old makes it a little harder. Can't wait for this to be over for all of us!
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Islandmama- I don't have my hair. It began falling out exactly 19 days after my first Taxol (in fact, once I realized it was "loose" in all areas of my head, I put it into a bunch of tiny ponytails and cut it all off for donation, then shaved my head. I know it sounds scary, and yes it was a tough day, BUT I love knowing I didn't let cancer throw my long, thick, healthy hair into the trash!). I have a few hairs here and there that I guess are trying to be heroes and continue to grow, but I can't stand to see them, so I shave my head every other day while in the shower (it's gotten quite easy). I'll keep shaving until it looks like all my hair is growing back. I have no desire for a "patchy" or "scraggly" look.
FYI- my oncologist said NO cold caps, though he did also say it's probably overkill to not allow them. Apparently, there's an EXTREMELY rare chance breast cancer will return to the scalp, so MD Anderson's oncologists would rather the chemo run through your scalp, which the cold cap would keep from happening.DaniellaD- I can't imagine adding ice to your nails with a cold cap. I did NOT enjoy the ice, but am so happy I did it now. My dr said no on the cold cap (see above) and also told me he didn't think it would work well enough through Taxol and FAC anyway. Yes, the Taxol SEs are very annoying because they're ALWAYS with you!
I can't imagine having a toddler to run after. Mine are 11 and 13 yrs old thank goodness (they were 4 and 6 my first time around though, and I think often how much more difficult chemo would have been then). Thankfully, annoyed is how most women feel through the entire 12 weeks of Taxol, so I hope you're in the majority. I hit a big wall week 7 and had a very rough time afterwards, but PLEASE remember I AM IN THE MINORITY that have such a hard time with Taxol! 0 -
Hi there. I don't come here often as I finished Taxol July 24, but I wanted to put in my 2 cents re icing hands and feet. While I was in treatment, I posted often about this--I used 2 sets of Elastogel gloves & booties. You are supposed to ice ideally 10-15 minutes before & after Taxol, and of course, during the infusion itself, which for me, was only one hour. The gloves & booties don't stay cold enough for all of that, but worked perfectly for me, switching half way through.
Although I lost 2 toenails during AC (very unusual, but it happens), I did not ice for my nails (although not losing more was a nice side benefit). I iced to prevent neuropathy ladies, and I don't have any signs of it whatsoever, for which I am SO grateful. I had read many posts and know ladies personally who still suffer horribly from neoropathy pain years after treatment has ended. I would have done anything to prevent that.
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MomMom- thanks for the info on the Elastogel gloves and booties. I went the homemade route only because I'd heard they don't get cold enough and would not last through 15 doses of chemo! Also, I agree the ice helps neuropathy. Even though I only iced my nails (essentially meaning ⅓ of my fingers and all of my toes), I still think the ice helped keep the neuropathy from showing up earlier, since I didn't experience it until 5 days after my 11th dose of Taxol.
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hello, I started weekly Taxol 3wks ago. I have to say this is worse than AC. A few days ago I started having sight problems so I need to go see an ophthalmologist. Now I just feel so light headed, I feel like I can't move too fast or else I will faint. Somebody had mentioned how they felt they were in a constant hangover....without the nausea. I'm hating it!
I'm trying to do the icing but it's so cold I kinda dip my nails in and out during infusion. And I put latex gloves on to make it more manageable.
What is with the black nail polish? Does this actually work? Does it have to be black or just dark? And why nailtiques base top coat?
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dancingdiva I Also have had vision problems (blurred vision), it sucks! I hope you find some relief.
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dancing diva- I'm so sorry you're having a rough time with Taxol. After completing 1 of 4 FAC I completely agree it's much easier to take than Taxol (it knocks you down, then it actually lets you get up!). I almost lost it yesterday when I heard someone tell a patient Taxol is the "easy chemo."
My eyesight got very blurry after my very first Taxol, and I was so lightheaded the whole time I'd have to put my hand on a wall or piece of furniture every single time I got up or moved too fast. The eyesight was worse in the beginning, then improved slightly and would kind of come and go, getting much worse the more tired I was. Glasses or no glasses- it didn't matter. The lightheadedness never left though. I wish I could tell you it did. I know exercise would've made me feel better, but I cldnt do a thing without feeling very faint!
The black nail polish DOES work. My nails are as healthy after Taxol as they were before (my doctors have been absolutely shocked). I used Nailtiques as the base and topcoat (I have no idea if it helped too but I wanted to mention it). By the way, when you take the polish off, replace it immediately. There's something about light damaging your nails in combo with Taxol, so you don't want any getting in if you can help it.
I know it's hard, but stick with the ice. I didn't get the nueropathy numbness in my extremities until my 11th dose, which was great. I'm 4 wks out of Taxol now, and it's almost gone (only now in the very tips of my fingers and toes). The way I did the ice: put ziploc bags and cover hands and feet in very thin cotton gloves and socks. I used ace bandages to strap the ice bags to my toenails and then just laid ice bags next to my sides and kind of squished my fingertips into them, focusing on the nails. You can either bring ziplocs with you and fill with ice or make your own at home and bring each time (use ⅓ rubbing alcohol and ⅔ water to fill them- the alc makes them a little bit "moldable.").
Feel free to ask anything or send me a private message. I hope things get a little more manageable for you!
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Sorry for another post after that VERY long one, but I have to mention a positive note about Taxol (something I'd wish I'd known while I was feeling so bad); at the end of treatment my scans showed Taxol shrunk my tumors over 83%!! So, it WAS worth it. I HATED it, but it DID hold up its end of the bargain.
Hope that makes you feel a little better.
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I haven't iced my fingers but I have been regularly taking L-glutamine powder (with my onc's OK). Yesterday was tx #10 of 12 and I have not had any real issues with neuropathy. Occasionally my fingertips tingle a bit but it's minor and transient. Can't swear the L-glut was the answer, but I wanted to share the idea. My nails are fine, too, but that can be random, I know.
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does anyone have body aches?
I got this intense pain in my upper back 2 days after my last AC. It started in my back, came around to my chest, up my neck and down my arm. I know it sounds like I had a friggin heart attack but it wasn't. The pain subsided but now it is just an annoying pain. I've been to my doctor, massage and physio. They all think it's muscular. If I rub my neck the pain gets better in my back but only temporarily. It is so annoying, just lingering. It doesn't stop me from doing anything, wake me at night but it's just there.
Is it just the taxol preventing me from actually healing?
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Texas, u made me laugh!
I will be putting ice bags then on my hands instead of the hands in the ice. Hopefully I can withstand. I'm feeling numby fingers and toes since yesterday. It comes and goes over the weeks. I was taking a B vitamin as well. I think I will continue on that too.
My MO did mention muscle aches on Taxol. So that's what I was expecting, not eye problems.
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I take B Vitamins and Magnesium, which I've heard may have helped. Definitely ask your onc about the L-Glutamine. Mine said no, but lots of women say it helps!
Aches and pains- I had tons of those too (I'm telling you, I was a MESS on Taxol!). They felt they were deep into the bones. Ouch! Thankfully, Advil or Tramadol worked. I also recommend getting some clear Tiger Balm. I found it soothing.
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texas94, I will be starting weekly Taxol at MDA next Tuesday at MDA. I've already bought black polish and will hopefully get my hands on some Latisse this Wednesday. Thanks for the tips!
Thank you everyone for sharing your stories, tips, and advice. It has definitely helped me prepare for next week.
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Sorry for the typo
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You're welcome! FYI as crazy as it seems, MDA doesn't stock Latisse and my onc didn't even know what it was! I find it bizarre more chemo patients aren't asking for it. I filled it at Walgreen's, which leads me to my next FYI- I paid $127 for 30 days bc insurance didn't cover it.
If you do get it, use it on top lashes and brows (I'm guessing it seeps to the lower lashes, bc mine still look pretty good). Use 1 brush, 2 drops, then carefully swipe across top lash lines (see instructions for exactly where, so you don't get the liquid in your eye, but don't use a separate brush for each or you'll run out of brushes). Then use the same brush to "fill in" your brows as if you're using brow powder. I usually add one more drop before the brows, and that's enough.I'm glad you're starting Taxol first, so you can get it over with.
Don't forget to ice all your nails and keep ice in your mouth!Good luck- Feel free to PM me if you have more questions, especially since you're at MDA!
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So glad I found this thread. I finished a/c end of Aug and started weekly taxol mid Sep. I have numbness in feet and pain, joint aches, muscle aches, the type head twinges Islandmama mentioned and lots of bowel issues. I have the bloody nose mucus in the morning. My onc is keeping an eye on the neuropathy. It is very mild in my hands. My hair fell out with a/c and the taxol is keeping it out. I have my eyebrows and eyelashes, but no hair north and south. I also feel lightly dizzy most of the time and have noticed my eyes aren't seeing as well, but thought it was my prescription.
So glad again I found this thread. Will be taking taxol into Dec and finishing into next Sep with the Herceptin. Yes, they told me it was the mild chemo also. I am very glad I have my port, because my arm veins are worthless for IV's.
On a side note, any tricks for keeping a cap on at night? My head has started to get cold with the weather and it falls off.
K.
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Hello ladies. I've been on weekly Taxol & Herceptin for 3 weeks, go for #4 Thursday. So far it has been very manageable with very few side effects. I keep feeling I'm waiting for the other shoe to drop (not that I'm complaining!). My question is about hair for those who have only done only the weekly Taxol. Most of responses about hair are from women who have done something else like AC before Taxol. About 4 or 5 days ago it started shedding, but that's it. It comes out in strands during brushing & showering. I haven't cut my hair short & I have crazy thick hair. I know I can't count on keeping it & honestly I had assumed I would lose it. However, I keep hearing that it comes out in clumps & comes out quickly. This hasn't happened. I know everyone is different, but just curious after it starts shedding when do most people notice larger amounts coming out?
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Miscraw, My onc told me that if I had not done the a/c, the taxol might not have been strong enough to cause me to lose all my hair. It is strong enough to keep it from really growing back.
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missingmercury- I'm sorry you're having SEs with Taxol, but I'm happy you found this thread early and don't feel alone. I've said before I didn't have neuropathy issues until after #11, when my fingertip numbness suddenly exploded into my arms and legs, but you reminded me that's not actually true with your mention of head twinges and bowel issues. After Taxol #11 I did a lot of research and realized I'd had neuropathy issues since dose #1 but wasn't aware (bc, of course, everyone tells you Taxol's the easy chemo). Neuropathy was probably the reason for many other SEs I had: pain in feet and hands, face and body twinges (one eye twitched for awhile, and I had moments where I'd feel my mouth might not work the way I intended), lightheadedness, dizziness, muscle weakness and a feeling of losing muscle control (every once in awhile toward the end of Taxol, I'd reach for a doorknob and miss it, or I'd misjudge a doorway and run into the side of it), blurry vision, hearing problems and even bladder and bowel issues (3 weeks out of Taxol, I still have a minor issue fully emptying my bladder unless I really put my mind to it). In addition to upping your B vitamins and taking Magnesium, ask your dr about the L-Glutamine. Mine wouldn't let me take it, but so many women swear by it, so it's worth a try if you get the ok! Nosebleeds, as I'm sure you know, are from dryness. Try Aquaphor or Vicks inside your nose. It won't help the bleeding, but it will give you some relief. I used Vicks (no it doesn't hurt). It soothed my nose and also helped a little with the constant sinus/hangover type headache (Put it on your temples, forehead and neck too... wherever you felt pain. I even put a bit inside my ears when they'd bother me). You can also put Vicks all over your feet before bed (cover with socks); again, it didnt cure anything, but it did help me sleep and had the added bonus of helping with dryness on the bottoms especially. For body aches, use something stronger, like clear colored Tiger Balm (the brown one stains everything) and Advil or Tramadol. I have no suggestions for keeping the cap on at night (which I'm sure surprises everyone, since I'm the weirdo with what seems like every single Taxol SE, so you'd think I'd have something to say about this), but I found I didn't want a cap anyway after a few weeks, since Taxol often makes your neck, face and head feel persistently hot. Try the tips about painting your nails black and icing them during Taxol. You don't want your nails falling off and hurting on top of everything else, and it may also help stave off the numbness.
Miscraw- Fingers crossed you continue to do well on Taxol! Regardless, I'm happy you found this thread, so you're not caught off guard by anything. On the hair, oh how I wish I could tell you you're not losing it, but what you describe is all too familiar, and I began Taxol with a full head of hair (Two weeks after my first FAC, I'm experiencing the little bit of fuzz growth others mention, but I assume it's the change in drugs and will again begin to fall out around day 19). My onc told me the opposite of missingmercury's- he said it would definitely start to come out around day 19 (I wish all our oncs would get on the same page!). Maybe my hair would have come out in clumps eventually, but once I realized it was starting to fall out easier and easier, I took charge, cut it all off and donated it to Locks of Love (I had thick, long hair too- they'll accept any hair unless it's bleached or all gray). It's not the right decision for everyone, but it gave me power over Taxol and my cancer diagnosis, which I desperately needed. I'll never have to remember losing my hair, and my heart is very, very happy imagining there's a little girl somewhere swinging my hair around and feeling quite sassy in her new wig! Feel free to read more about my decision to go from a full head of hair to bald in one day: "Fear and Perspective". You can also read about the day I received my Locks of Love certificate: "Surely She's Got Some Sass". Writing is my therapy (as if most of you haven't already noticed!).
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MissingMercury, I had a problem with bloody noses, too. I started applying Ayr saline gel inside, 3 x a day, using a Q-Tip. Gradually the problem diminished. I have had only one very minor one in about 4 weeks.
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Miscraw -
You may want to check out the forum Taxol and Herceptin for Stage I Her2 Positive. I was on Taxol and Herceptin. My hair was shedding slightly at the start, but it began to come out more and more after treatment #4. I always had short hair, but I did get it cut very short before the start of treatment. I have been post taxol since Aug 28th and it is filling in nicely. I haven't yet been able to go out without a wig. Can't wait!
Marie
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Texas, u definately can write! Gotta checkout ur links....
Missing, I use saline solution too in nose and put some Vaseline around the edges to keep it moist . I also wear these head coverings from buff wear.com. I got them at a sports store. They are tightish but lightweight. I really like them
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Thanks, ladies. I will try the tips for the nose, toes and head. Glad I have chemo today and see GI tomorrow. Now have a persistant pain near my right hip. My onc told me to keep my feet warm to help with circulation and I do think my feet feel better. Also ordered some cool compression socks.
The VA nurses gave me a small book written by a lady who had bc about losing her hair. It was funny and informative. She said how she had long hair and cut it short as she thought seeing her long hair fall out would be more upsetting. I cut my hair short before it started falling out. I don't wear a wig. I wear hats, caps and scarves. Everytime I think; 'is my hair growing back?' I see my grown nephews who shaved their hair with me and know it is not. Their hair is at least an inch. Mine is barely shadow, though I was upset to see when I am back lit there are longer, wispy hairs. For some reason that is not as nice looking as shaved. Plus, before bc, I was getting thin on tip, so that wispy look is kind of scary. My daughter grows her hair long and then donates to Pantene.
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Missingmercury - Welcome! I had the same issue with my nose. It disappeared shortly after I finished Taxol. Neuropathy started about halfway through taxol. I am now 8 weeks PFC. and it hasn't gotten much better. I am finally getting some feeling back in my big toes but that's it. MO tells me it could get better or be permanent. Everyone's body reacts differently. Most other SE's have disappeared, thank goodness! The muscle aches were awful. Hair growth is very slow-but happening. My hair is maybe a half inch? But coming in grey. At least it's hair!
I am almost ready to go out in public with a hat.Hoping you are feeling well. lilyrose
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Hi. I'm new to this thread. I just started taxol last Friday. I am doing dose dense so every two weeks. So far it hasn't wen to bad except for the leg pain. First two days I was fine then woke up Monday morning in such pain. Feels better today, I hope this isn't soemthing that gets worse every time?
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I asked one of my nurses about toe nail loss. She said a woman who finished taxol a few weeks ago came in with a fingernail that fell off. She said some things could show up after the taxol is done. Mine look fine right now. I asked her about black toe nail polish. She said usually they don't recommend polish as it can let bacteria build up. I'm thinking if I am careful and take care of my toe nails, it will be ok.
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missingmercury - I was told the same thing about the nail polish at my Cancer center. I have 4 toenails that turned purple a few weeks after I finished taxol, but have not fallen off. They are starting to grow out normally. My fingernails did the same thing but are growing back normal also.
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Kellogg2000- The pains definitely hurt!! However, there's good news. Mine didn't get worse. They stayed the same in intensity and would come and go randomly. Also, they seemed concentrated in the first ½ of my Taxol treatments. Hopefully that's typical! Advil actually did a good job, but if not, Tramadol would knock them out. I'd also recommend some sort of menthol muscle rub. Good luck!
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