Weekly Taxol group
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Hi, All,
I'm jumping in here because I just had my first Taxol infusion yesterday. I'm on a weekly schedule for 12 weeks after 4 rounds of bi-weekly AC. So, anyway, this morning I noticed numbness and tenderness in my fingertips--it hurts to type! Just got the call back from my MO and she says we can wait a few days to see if it subsides and even into my next infusion. If it continues or gets worse, then, she says, we might have to consider stopping the Taxol, but she also says that the neuropathy won't be permanent, which is a bit confusing. She suggested that after we wait and watch a bit, if it doesn't get better, I could try glutamine and even Vit E. Has anyone here tried those supplements, and to what effect?
Thanks!
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Jsd44 I have been taking Vit E for 10 years on and off (mostly on) because of the implants I got back then. I was told to take glutamine powder (1 TBSP) with juice, water, tea three times a day for the first five days of treatment. I had my first Taxol on Friday. I am getting Taxol though every other week for four treatments (just like the A/C) I had some bone pain in my hips and thighs and just a feeling of not being able to get comfortable for a couple days and that was it.
So I take daily dosages of Vit E, D, B6 (100g) and the glutamine at the start of treatment.
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Homemom, Tomorrow will be a week from my last chemo, and so far, no signs of neuropathy. Although you can still get it months post chemo, the fact that I've not yet experienced any of the signs is in itself a good sign. Yay!! I did ice for all 12 treatments. I started the first infusion with only one set of Elastogel gloves and booties. One set does not stay cold enough for the entire treatment. At most they remain cold enough for about 45 minutes. I then went to the Elastogel for half the infusion, and half way through alternated with homemade ice packs. You can make those slushy ice packs with 1 part alcohol to 3 parts water. Put in double bagged gallon Ziplocs for your feet and quart size for your hands. You will need two sets for each hand and each foot. My hubby wrapped them around my feet with small bungee cords which you can get a pack of at Home Depot or a similar store. I took a small wooden stool to the infusions on which I rested my feet flat. - one gallon Ziploc on the bottom - one on the top - tied together with bungee cord. Same for quart size with each hand. The smaller size stayed on OK without the little bungee cords. If your feet are not flat, ie, you're lying back in the chair, the bottoms of your feet and toes will not be iced properly. I have a friend who iced but with her feet up in the air and that's the only place she's had some neuropathy.My husband took all of this to each infusion in a rolling cooler filled with ice packs - a 30 minute drive. We found that the ice packs stayed colder if he put them in the infusion's freezer as soon as we got there as opposed to just keeping them in the room in the cooler. After two sessions of that, the coldness of the homemade ice packs was intolerable to me. They were ridiculously cold. After seeing me in pain from the cold, before infusion #4, he insisted that we order a second set of Elastogel gloves & booties. So I switched off between the two sets for all remaining infusions. I doubt insurance will reimburse us, but we've submitted, so we'll see. In any event, I've spent more for less (one of my favorite sayings:-).
Here's the thing though. You are supposed to freeze 10-15 minutes before and after each Taxol, not just during the Taxol itself. My Taxol infusions took just one hour. I guess your MO is giving it to you more slowly or in a dose dense for it to take 3 hours. Obviously you would need back up homemade packs so you would have them cold enough for the entire 3 hours plus, rotating them in the freezer. We never threw away the homemade packs. They're so cold, they continue to make excellent ice packs. Don't give yourself frostbite though. If too cold, give yourself mini breaks, or you may want to put on thin gloves or socks as a buffer if too cold.
Regarding my nails...I lost both big toe nails during AC, which is unusual & a nail next to one of my big toes got some funky filling inside the top of the nail. But that was all from the AC. The only thing that started new with Taxol on my nails is that my thumb nails are somewhat indented - I do not expect to lose them. None of my nails are discolored. The icing is supposed to prevent neuropathy, but I've heard it also protects your nails, although I've head of some doing homemade type icing having issues with their nails, so I'm sure results vary.
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Wow. Did you ice on the way home too? Ice in the waiting room? Is it just to prevent neuropathy? Did you take the glutamine? I know they don't have a freezer, just a small fridge for extra drinks. My toes look totally normal.. Here are my fingers: The are a little darker then they look here. I cut them down this morning
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I iced but my nurses and MO was very supportive. The nurses would give me a ziploc bag full of ice and latex gloves to wear and I would put my hands under the bag of ice. Then for my feet they filled Biohazard bags with ice and slipped them over my sock worn feet. The biohazard bags have a nice sleeve that the nurses could use to slide them over my feet.
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I think if I asked for help and they could accommodate, they would. I just don't see any ice anywhere. I will put something together for the next trip, but I'm concerned that if I don't get to ice the entire time it might be a waste of time.
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mmtagirl: my neuropathy started as burning - I actually thought it was the shoes I had been wearing. It was like the burning/abrasion feeling you get when you are getting a blister. But I'm happy to report 7 days PFC, I haven't gotten any worse. I did do 5 weeks of acupuncture and I've done a couple neuropathy massages. I feel like it is definitely better, but I'm not there yet. And somehow, my eyebrows are growing. They are clear, but they are growing, so it's easier to pencil them in with the stubble there. I also have really really really short eyelashes coming in. Didn't take too long!!
Homemom: my place also was very negative on icing. I don't get it. If it works for some!!
I had my first radiation simulation today. It wasn't bad.
Onward, onward!! I'll start 33 treatments on 8/18.0 -
Just a thought, but since there are a lot of people that end up having no nail issues, there is a possibility that a lot of people that iced wouldn't have had a problem anyway. I know my MO thought it wouldn't really make a difference, and I never saw anyone at my center icing (and there was an ice machine there, so ice was readily available.) I guess there's really no way of proving it works unless someone iced one hand but not the other and compared.
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I guess icing hasn't made its way to New Zealand as I've never seen anyone doing it or had anyone mention it too me. I haven't iced and after 43 infusions I have no neuropathy and my finger nails are in great condition but I have kept them coloured with a dark polish as I had heard nail problems with taxol are because of light sensitivity. Wish I could say the same about my poor neglected toenails. My two big ones have lifted a bit and now have some funky fungal thing going on under them. My Onc said that fungal toes are to be expected especially after 10 months of chemo. I visited a podiatrist who gave my feet a good going over. She recommended tea tree oil to treat the fungus which I have been doing for the last month and I seem to be getting on top of things slowly.
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My onco nurse said some women swear by tea tree oil to save their nails. Haven't tried it yet. She did say that icing would not have an impact on the nails, only neuropathy. Her only advice on the nails was to keep them short and polished (no shellac) along with the tea tree oil.
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The nail polish thing is another big question mark. My doc said not to put anything on your nails because it promotes fungus growth - even clear. Shazzakelly, you're the second person I saw post here that their doc said the opposite, to paint your nails due to light sensitivity. I had on a dark nail polish during A/C and when I took it off I had these darkened areas on my nails. My toe nails I always keep polished and they don't have anything on them. I only have 3 Taxol treatments left so maybe I will re evaluate next month and polish them!
I'm taking the glutamine and B6 for neuropathy and it seems to be working. I have no tingling or odd feelings in my feet or hands.
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So I did a google search on the nail subject and this is one of the things I found:
Self-Care for Nails During Chemotherapy
- Use clear polish to help keep nails strong
- Avoid artificial nails and colored polish, especially dark colors
- Wear gloves when washing dishes and gardening
- Care for nails and cuticles gently
- As Beau's lines grow beyond nail bed, cut them off
- Increase iron in your diet
- Cut back on or avoid caffeine
- Try taking vitamins for hair, skin, and nails
- Wear comfortable shoes that allow adequate room for your toes
NEED my coffee in the morning!
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JSD: my nails were tender from AC and continued through 12 weeks of tax and still are now 2 weeks PFC. Typing, opening things with my nails, etc hurt. Try to avoid those things it may make your nails start lifting. My MO knew about it and stopping was never an option. The only time they said they would stop treatments is if I could not function with the pain. Good luck!
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Homemom, I only iced for one hour and 20 minutes total - one hour for the infusion itself + plus 10 min. before & after. I took one tablet of L-Glutamine 750 mg - a lot less than most are taking and one 5000 mcg Biotin. At the advice of MO's office, also put 100% tea tree oil on nails throughout. I also read on several threads that acupuncture can help prevent/lessen neuropathy, so started that once a week. I had never before had an acupuncture treatment in my life and I absolutely love it. I feel SO relaxed each time I leave. I plan to continue it weekly through rads.From the photo, most of your nails look a little dark to me, but I don't think that means you will eventually lose them. I don't think it would be a waste of time if you miss icing for the first one or two. I think any icing you can do may only help. My MO is very highly regarded in the DC Metro area and is rather conservative, but believes in it wholeheartedly. She's seen such good results from it, that she is beginning a clinical trial for icing during Taxol.
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I guess everyone is different. Not only do I keep my nails painted a dark color but I use shellac. My nails are also fairly long much to my oncologists horror. But I love my manicured nails and am not going to let cancer take that away from me. I do have them professionally done every 3 weeks as my treat for making it through another cycle. I guess along with everything else to do with cancer we just have to do what works for us as individuals. Everyone seem to respond differently.
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jhodro, I'm jealous! I'm 2 1/2 weeks out post final chemo and I am still losing eyebrows and lashes! I now have zero bottom lashes and hardly any top lashes. My brows still look alright. I'll be purchasing fake lashes today. LOL Also, I'm a week ahead of you! I start rads 8/11 and will have 34 treatments.
HomeMom, I hear you on the coffee! No way in hell am I giving it up!
Besides, there are all these studies supporting drinking a cup of coffee each day. So, I'll follow the advice of those. Tee hee!Shazza, I agree! We do what works for each of us and as to your nails, rock it! You deserve a treat indeed, and if it's not hurting you AND making you happy, then who's to fault you? Keep it up! I did a mani/pedi one day when I was on my harsh chemo. My GF who is visiting and helping me dragged my tired and sore ass to a salon and it was great! Even though I felt so bad, it was so nice to get out and let someone pamper me! So I highly recommend all of us ladies doing them!
My hubby got a gift certificate for a mani/pedi and I can't wait to chisel out the time to do it!0 -
I put some Sally Hansen's Miracle Cure on my nails today. I'm meeting halfway on the nail polish thing. I was taking Vit E and just read that it is too high of an antioxidant and you should not take it? So I took a B6 B12 and a Vit D3 5,000 iu. I have to get my Vit D levels up. That is something that stood out in my blood work at the GYN office. She told me to take a 50,000 IU once a week for four weeks and then 5,000 per day for two more weeks then get my blood taken again. I didn't have the time to go in for blood work so messed that idea up. So I'm taking the 5,000 per day until I go back next March.
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For those who actually lost a toenail, did it fall off completely or did it grow out eventually and the bad stuff just gets cut off? My big toenail is just about coming off as opposed to my fingernails which are growing out and I'm able to cut off the dead stuff. I am afraid my toenail won't grow back in if the whole thing comes off completely....
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Xrayalli, I lost my big toenail once when I a kid stepped on my foot and ripped my nail off. It did grow back so hopefully yours will too.
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Xrayalli, I lost both of my big toenails from AC, not the Taxol. After AC, one was so lifted that the podiatrist I went to at the MO's advice decided to take it off. Lots of shots in the big toe area and I learned that there are tons of nerves there. It wasn't a pleasant experience and it took forever to heal and was quite sensitive. I had to "dress" it twice a day with special bandages, benedine (sp?) and such. A pain in the A**. My skin was so comprised after the AC that even the little bit of skin the special bandages touched could peel if I wasn't very careful. At some point, I gave myself a pedicure and painted my toenails hot pink (minus the now gone one big toenail). The other big toenail got looser and looser. The PA in the MO's office told me it would be better to KEEP the big toenail rather than have it removed (unless there was some sort of infection, which there was not). So, I babied and babied that other big toenail & it kept lifting more & more. I put a Q tip in the tea tree oil bottle and applied that liberally every day to all my nails. When the nail lifted enough that I could apply the tt oil under the nail I could see that there was the beginning of new nail growth underneath the still hot pink just-barely-hanging-on toenail. It took about two months for the dang thing to finally fall off & I thought about framing the hot pink shell of a nail. It served its purpose. It protected the new nail growth underneath, and when it finally came off, the underlying nail area was already calloused and wasn't sensitive all at as the other one had been. When the nail was really loose, I slept with thin socks on so it wouldn't snag.0 -
Thanks for the tips, Mommom. I will try to keep the bad one attached and hope for the best. It doesn't hurt too much, thank goodness.
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MomMom - I have not had any tingling or issues in my fingers or toes with the first infusion which is apparently a DD. I put a heaping Tbsp of Glutamine powder in tea/OJ/lemonade three times a day for the first five days and I started taking the B6 two weeks before my first infusion. I'm not convinced I need to ice. Maybe I will give it a shot this week to see if I can keep the ice frozen long enough. I seriously was there last time from 8:45 to 3:00 (the time I walked out of there) There was a lot of time waiting in the exam room first for the PA and then my MO. ZZZzzzz
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Hello ladies! I start weekly taxol for 12 weeks next week. Just finished AC last week and finally feeling close to my old self again, less the hair and plus 10 pounds, lol. From what I have read and been told, taxol should be easier for me than AC was. AC was horrible, I felt miserable the entire time. What can I expect from taxol? Also, anyone getting herceptin and perjeta added to it?
Thanks!
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Homemom, Such a long time! How long was the actual infusion itself?
Basia, Yes, Taxol is much easier than AC for most. I didn't have many SEs for either,one of the lucky ones. Worse thing on AC was having big toenail removed and some skin and mouth issues a week after AC ended. Also loss of taste buds with both. Taxol completely doable though. See earlier posts about preventative steps to prevent neuropathy which is very common on Taxol. Good luck to you!
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Hi all, well I ditched the fake eyelashes, however, my niece had a makeup artist for her bridal party and I was able to have professionally applied eyelashes. Wow, what a difference. They looked and felt great for a special occasion. Each lash was applied individually and looked very natural. I am so glad I did it especially since I wasn't feeling so great that day.
Every week is so different and this past week fatigue and terrible taste buds hit me. I felt better yesterday and even took a 4.5 mile walk and mowed the lawn. Taste buds are still a bit off. It not as bad as they were. After tomorrow I am 1/2 way through taxol. Woot woot!
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MomMom - almost 3 hours+ for the infusion. I'm only getting 4 treatments, one every other week, so they are longer. Once in the chair they took my blood and had to wait for that outcome. Then she went and asked if I needed the Neulasta shot since my WBC was high, and I do since I am going every other week.. THEN they started with the pre meds, etc. It may have been close to 11:00 by the time he treatment actually started.
mmtagirl - that's great that you were able to take your walk etc! I found that the day of and the day after my first one I was able to go shopping etc, felt totally normal. It did hit me on the next two days - total fatigue and some aches. This week is my second of four treatments so I will be half way through too!
Basia - I hated A/C, I couldn't stand the queasiness. I hate losing the taste buds, and I have that with Taxol as well. They get better though about a week after.
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In the chair for Taxol NUMBER TWELVE!!!
Oopherectomy scheduled for 9/2.
MO said I can get my port out in 3-4 weeks!
Radiation sim will be scheduled today for sometime next week.....
All good things, but best of all, chemo is OVER!!!
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Jenwith4kids, Congratulations!!! You did it! Yay!!!!!
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Woohoo! Congrats Jen!! Pop the bubble and celebrate!!
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Congrats Jenn! Where did you get the head cover....cute cute!
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