Weekly Taxol group
Comments
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I have seen people mention buying special hand and foot mitts to ice down during taxol treatment in order to prevent neuropathy. Is there a link anyone could post or a specific title to look for? I have searched and can't seem to find it! Also, instructions for use such as how long to do it, do I do it at home as well?
I have also heard of people using bags of frozen peas but dont see how they would stay on properly. Any help would be appreciated!
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Nutszy - I was going to buy the mitts and slippers on Amazon but they only last about an hour. The booties are Natracure on Amazon. I was worried that I would have to buy extra packs, if my treatment went longer. I ended up getting 2 6x12 and 1 (2 pack of smaller 6x6) of the Cryomax gel packs on Amazon. Someone recommended them. They last up to 8 hours. I just wear cotton socks and gloves and slide them into the covers that come with them. I made a slit in both of the hand covers so I can poke a finger out to use my phone or tablet
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I do ice during treatments, but I did not buy fancy sports socks or gloves. I bought lunch box ice packs at target. I hold one in my hands and have a foot on one each. I have not had neuropathy or lost my nails. My MO and the nurses at the center don’t think icing works, but so far so good. 4 more treatments to go
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I bring a small cooler with ice for my hands. My hands have been fine. I started getting numbness in my toes last week so today I brought round ice packs that were given to me after my biopsy to use on my toes. It's so uncomfortable but hopefully will help.
Hope all is well Laurencl
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OK great, thanks so much for the tips! I have already begun developing neuropathy from the AC. Either that, or from the Neulasta, but it is very troublesome so I really want to make sure that I am covered. So, Dogmomrunner, you got two of the 6×12, I assume for your feet, and a twin pack of what size for your hands? Also, did you just ice during the actual treatment, including premed and that's it, or do you continue doing it at home as well since it is still circulating throughout your bloodstream? Thanks in advance!
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The infusion center allows us to fill the plastic barf bags with ice. I hold onto one, and then wrap the other two on to my feet with a scarf. I ice 15 min. before, during infusion and 15 min. after. Also, I take mini breaks when my fingers are frozen. I have finished #9, and so far it hasn't been too bad (knock on wood). My toes started to get a little numb, but it hasn't been consistent. The infusion center I go to doesn't necessarily push for ice, but an on call nurse told me that their other center highly encourages everyone to ice.
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Chiming in on the icing. My MO was not very positive about it but the nurses all really think it helps. I bought the booties from Amazon and like them fine, but the hand things I bought I don't really like. I have been icing during my Taxol but not the premeds, so about an hour. My hand things I bought do not stay cold for that whole hour. At the recommendation of one of my nurses, I then ice for 15 minutes twice a day for about 3 days after treatment, and I think that helps too. I have only 2 more treatments and so far just a bit of tingling mostly in my thumbs and a couple other fingers. I have 3 nails that are looking iffy/pretty bad. Only a little tingling on and off in big toes.
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Had my 9th Taxol today. They changed things up a little by giving me Benadryl through the IV instead of the capsule I have always gotten. My nurse said it may make me drowsy which the capsule never did. I slept for an hour when I got home. Unusual since I'm usually on a steroid high. Now I'm wide awake so I guess the steroid has kicked in. I iced my toes for the first time today. It was extremely uncomfortable and I was freezing 😯
My toes are better this week. I get tingling but numbness has only been in my 2 smallest toes on my right foot. Much better than last week. Fatigue was better this week also.
My eyebrows are just about gone. Luckily my wig hangs down so only very noticeable when I'm not wearing it. Not much left of my lashes either but what's there is getting a ton of mascara.
3 more Taxols to go!
I hope everyone is having a good week with manageable or no side effects 🤗🤗
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Nutszy - sorry I didn't notice that I didn't say what size of the packs I use for my hands. They come in a two pack of 6x6. I curl my fingers around the pack. I don't do the packs after I get home but I'm thinking it might help. I have horrible hot flashes the night after a treatment. Maybe I should ice my entire body!!
Dawn - I get the benedryl iv and it makes me somewhat sleepy but I also get a bizarre side effect of muscle twitches in my legs. Sometimes it's almost painful. I hate the benedryl! Woo hoo Dawn, only three more!
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DogMomRunner…...My first two taxol infusions, I received Benedryl capsules. The third session I received it by IV. Well, the next session I told my ONC that I was miserable the last treatment My legs hurt, twitching, couldn't sit comfortably. She looked at my record and said it's the IV Benedryl. She put me back on the capsules and it never happened again.
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Snooky - that's exactly what I've experienced. I'm going to tell my NP or MO at my next visit. Hopefully I can get it changed to capsules
And Woo hoo for notdefined on number nine!!!
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DogMomRunner, do you get chemo cheeks? I wake every Saturday to such a healthy glow 😅. It's the only thing I'll miss when chemo is over. I bought a self tanner last month because my daughter was graduating and I didn't want to look sick. It's all natural and organic. I've been using it weekly now and on Saturdays I look like I've just returned from a tropical vacation.
I hope you can switch to the Benadryl capsule. I never had any issues with it.
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my mom is on 3 different supplements and icing during infusion. She just had #7 and no neuropathy yet
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RD #10 Taxol on Monday.
Icing - I have been icing my fingers and toes the entire time. My nails are good on both. My feet are fine...no tingling at all so far. I have one finger that tingles. There are tons of new trials and study's on cryptotherapy...the icing of hands & feet during chemo. It is the same concept as the Cool Cap. I can't imagine nurses in oncology not recommending that.
PAXMAN - I have been using the Paxman cool cap since I started in April. I've only started shedding after #9 taxol. So far I don't have any bald spots...hair is thinner, but you can't tell. My eyebrows aren't growing, but are still here. My cool cap sits low on my forehead so I'm wondering if my eyebrows will keep. Eyelashes are thin, but I still have them as well.
DogMomRunner - I had terrible twitching as well and did some research on the Benadryl. If you take it orally rather than through the IV it doesn't cause the twitching as much. My OC switched that up and I've been fine ever since. I will say that I was miserable when my legs were twitching during chemo. Looks like the rest of the crew recommended that as well.
Question: How long after taxol chemo do you get your energy back? I've got two small kids and wanted to plan a late summer vacation. I ring the bell on 7.8.
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Thanks DogMomRunner! I have been eyeing the finish line.
#9 has me feeling the fatigue a lot more than I have been experiencing. I feel like I could sleep all day, but I'm going to make myself active.
Paris67-I'm not there yet, but I have asked too. It sounds like it takes at least a month to get back to somewhat normal levels, but several people were able to work through it all.
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Struck today by the highs and lows. Felt good yesterday and did too much. Hit the wall. Cut up a huge bowl of fruit which I proceeded to drop all over the floor and then had a complete breakdown ...over fruit. Sometimes 4 more weeks feels like 40. Today I started to see the peach fuzz on my head. Hope everyone has a good weekend.
Lauren
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re the icing - I used packs like this. We found a bunch of them very inexpensive in a local grocery store. I can't remember how many we got but we got enough to swap them out for fresh ones every 30-40 min, and we started about 10-15 min before the treatment. So take your infusion time, figure out how many times you will need to swap out, multiply by 4. Get a cooler that's big enough for all of them plus some rigid icepacks to go in there to keep everything super cold.
For hands, we would wrap around fingers and then we used dollar stove fabric oven mits to go over it. They didn't really fit fully but close enough.
For feet, my husband's very old stretchy hiking socks. I found the icepacks painful to do straight on the skin so I wore very thin cotton socks & very thin cotton gloves as a first layer.
This did all mean that I needed a helper. Dh was in charge of getting my feet and hands all encased in ice packs, watching the clock and deciding when to swap them out. He also had to operate my ipad so I could watch netflix, get me drinks etc because I couldn't do anything due to my big mitten hands.
But it was well worth it! iirc I started getting neuropathy before the half way mark of Taxol and started icing then. Neuropathy never progressed and by a couple months after, all the last traces of it were gone.
(I had a couple studies which showed that it helped with peripheral neuropathy during chemo so there is research on this).0 -
I have been managinf side effects of Taxol quite well. However now I am admitted with a left.leg DVT and bilateral massive pulmonary embolism with strain to my right heart. I guess it is a good thing I attempted going to work on Wednesday because my outcome could have been very different. So it is one thing to be diagnosed witb Stage 3 Breast cancer however dealing with the complications associated with the disease. I am scheduled for thrombolysis to my pulmonary arteries on Monday and hopefully my heart function will recover.
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I asked my Oncologist about icing and she said it's nonsense and cold makes neuropathy worse. I felt like she was sneering at me.....wish I could get an open and forward thinking Onc but it's impossible.....
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steph so sorry to hear!! How scary for you. Prayers for full recovery!! Please keep us posted.
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Steph - I hope everything goes ok. This disease seems to almost take the entire body down.
Lily - I am the only one icing at my place. If it might help, I'm going to try it
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fwiw, I didn't ask my MO about it. I just brought my stuff, printed out copies of these 2 articles which I was going to present if anyone in the chemo room balked (& nobody did because it turns out if you just walk around confidently enough people don't challenge much) and my dh and I just did it all on our own. I really didn't care what the nurses or doctors thought. This was an intervention that was simple and might help so I just went ahead. We did make sure to not interfere with their pacing or slow down the chemo process etc. The only weird part was trying to ice one hand while they heated up the other hand for the iv insertion (I didn't have a port and my chemo center wraps your entire lower arm in very hot damp towels to get the veins nice and raised). As soon as they got the iv in, I shoved that hand back in the icepack mitt.
here are the articles:The impact of cold therapy on the incidence and severity of paclitaxel induced peripheral neuropathy: A pilot study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6007752/pdf/djx178.pdf
Effects of Cryotherapy on Objective and Subjective Symptoms of Paclitaxel-Induced Neuropathy: Prospective Self-Controlled Trial
http://www.sciedu.ca/journal/index.php/jst/article/viewFile/9340/5863
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& ps @DogMomRunner - I like your Nathaniel quote. I Need Never Get Old is one of my fave songs atm; it always makes me happy (& the video cracks me up so much)
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Steph512, I'm so sorry. I hope all goes well Monday.
🤗
Cancer sucks
Dawn
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Thanks Moth. It was my running mantra when I was training earlier this year. I love that video too. I really like his music
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hello ladies, I'm sorry you all are still having to deal with chemo. Im just about 8 weeks pfc and feeling pretty good for the most part. I think my energy came back pretty close to normal about 2 weeks ago. I still have on and off neuropathy tingling to my feet but it comes and hows for short periods of time.
I hope everyone keeps kicking cancer's ass and has a good week!!
~Katie💗
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Good luck tomorrow Steph.....
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The center gave me 2 hospital buckets and two large bags (the cancer meds come in) to put my feet in. I bring a pair of socks for the icing. I use the blue gloves they use for my hands. Then they feel the buckets with ice. It will last the whole time. So far it has been working pretty good. I ice 10 minutes in and then 10 minutes out. They told me to start 10 minutes before they start the chemo.
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I don't understand why you wouldn't try something that might help.
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while on Taxol, any body went to restaurant? I avoid all public places because while on Ac I end up in emergency twice with fever whiteout even going anywhere. My husband was desapointrd and even mad at my paranoia because I have been told I can go restaurent but being sure if the food is well kept and well cooked. How I can know that? And also a lot if people come restaurant and I cannot guarantee they have no virus. Just I want to know if you go restaurants and if you take any precautions.
My boss also invited our team to a restaurant and that also that triggered my question. Thank
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