Weekly Taxol group
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Hi all. Starting weekly Taxol with Herceptin tomorrow. Do any of you wear contact lenses? I've read that eye irritation can be a side effect and I've read that some used Similisan and some used something else but haven't read about the contact lenses anywhere. Any advice is appreciated. Thanks much.
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NattyB - I wear contacts and didn't have any issues during taxol/herceptin.
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Thank you so much for the reply PatinMN - hoping to hear that since I don't especially love my glasses:)
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I'm afraid the solution is going to be prednisone. I have 5 more taxol treatments to go.
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NattyB: I don't have contacts, but I do have some eye dryness. Call your eye dr. and tell them you are having chemo and ask for recommendation for eye dryness. Then use it regularly. I had lasik in 2000 after not being able to wear contacts due to allergic reaction in my conjuctiva. Had really bad asigmatism, so thankful for lasik!. one of the side effects of lasik is dry eyes, so I use drops often anyway. It seems to come and go but I just use the drops often, in fact I used some tonight after my 4th dose. Hopefully it won't be an issue, or at least a controllable one.
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I went for my first dose of Taxol Monday and i asked my MO when I saw her before infusion for my RX for anti-nausea, etc.. to take home with me. Even the nurse in the infusion unit asked me if I had my RX to take home. MO and her nurse told me that I would not need anything (basically they keep stating that Taxol has NO side effects). I asked them while in infusion unit for an RX at least for an anti-emetic, and again MO's nurse said it would not be needed. Go to my little support group the next day and sure enough the women there on the same regimen said she always took anti-nausea drugs.
Confused - Why would an MO and her nurse refuse to give me this kind of drug? It is not like it is morphine?
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Eleanora: go to the Chemocare website, and print up the writeup about Taxol and take it your your uninformed, i would rather say stupid, but its unprofessional, MO. I can NOT believe what they said to you!!! You should be getting Zofran anti emetic with infusion. My MO says no one should be nauseous on chemo, becasue they have amazing new drugs like zofran that work on your brain and not your gut. Maybe consider going to another place with better care if that's an option for you! Bad enough we have to take poison to fight this monster and make sure it doesn't come back, but to not be cared for properly is criminal!!
blessings to you, fight on dear sister. A
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- Labscientistmom- thanks for very informative article about steroid. I always think it's bad for my liver. I had the Decadron with AC but my OC initially said no Neulasta and no steroid. During last visit she mentioned the steroid with Benadryl. Why would I need steroid if the nausea is very low? I agree with lovemyvizla that I will let them know I refuse steroid. I'm getting Taxol on Thursday, hope it turns out OK.
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For taxol, the steroid and benedryl is to prevent immediate allergic reactions like anaphylactic shock or hives etc. I think you can ask to just get it with your infusion and not the day before. Also i think the decadron is a steroid. You can ask them to check your liver function tests when they do your prechemo blood work. That would monitor if your liver is ok with it. You can look on chemocare website and put in "taxol" for very informative info on all the lovely wonders of taxol.
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Eleanora- During my followup visit with OC last Monday she said same thing, I won't need anti,-nausea meds at home for my weekly Taxol coming up tomorrow. I didn't care for the meds although I still have the same quantity from my AC which I haven't taken any. But if you feel you need it then it's your right to have something to relieve your symptoms. Good luck to you.
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lovemyvizla- When u said the doctor dropped the steroid during the second infusion, did they drop the Benadryl as well. How did you do without both meds for 12 weeks? I hope I do the same.
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Hello all,
I got my benedryl reduced after first Taxol infusion because it knocked me out entirely, but they insist I need some for preventing allergic reactions, as labscientistmom said above.
I've had no nausea on Taxol, my MO said I wouldn't need anything for nausea and she's been right with me. I have lots of leftovers from AC too! But I can't see any reason not to have meds available in case. Eleanora23, I cannot believe your nurses and MO said Taxol had no SEs. That's ridiculous.
I have developed neuropathy (tingling & numbness, no pain) in my fingers and toes, and other odd areas also, like the top of my thighs. I am very concerned about this, as I've read it can be permanent and get worse. I called the MO and left a message. I'll find out on what the plan is tomorrow, when I go in for #5. She may reduce the dose. Has anyone else had this problem? What did your MO do? I am so worried--I need my fingers and toes to work!
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Reflect,
I finished Taxol last year. Are you icing? I was part of a study that used neoprene mittens and booties to reduce the risk of neuropathy. I did get neuropathy but only tingling and numbness, no pain, it started in my toes then my fingers. While annoying, the neuropathy never interfered with my activity level. They will ask you questions before every infusion to determine your level of neuropathy. I completed all 12 Taxol infusions. A year later, I still have some neuropathy but it is getting better and can improve up to 2 years after. After my infusions ended, the neuropathy got worse which it shouldn't. The MO did tests and found out I was borderline deficient in B 12 which can lead to neuropathy. Once, I started taking B-12 supplements, there was an immediate improvement. Most of the other participants in the icing study had no neuropathy so maybe the low B 12 contributed to my getting it. I also had a Thyroid issue which could have contributed. They might give you a week off at some point if the neuropathy worsens to give it a chance to improve. Also, if it gets bad they can switch to Taxotere, although beware Taxotere has resulted in permanent hair loss in some women. Good Luck, MJS
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Houston, and others...I had decadron, benedryl and zofran for my first taxol infusion. The nurse hung around in the room for the first 5-10 minutes. For #2, they dropped the decadron and benedryl and just gave me zofran. The nurse hung out again for about 5 minutes. Every treatment since, I've only had the zofran and taxol. I have done absolutely fine as far as nausea. I get a bleh feeling that comes and goes after infusion, but nothing even close to nausea. It is gone by the next day.
I was told that any reaction to the taxol would be an infusion reaction. Meaning shortness of breath, tightness in the chest, etc, and only during infusion.
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Reflect: get some ice packs and ice your feet and hands while the taxol is running. It helps a lot. I didn't get the fancy mits, although I am considering it for my feet, or cobble together some bubble wrap like shoes our of those ice sheets that look like bubble wrap, cause bottom of feet is more awkward and seem to heat up the ice faster than my hands. I have been just doing ice cubes in a double ziplock bags, which seems to last for about 1/2 the infusion. I need to bring more ice to change it out, but its working and much better than the first week when I totally forgot. the infusion nurses where I am are willing to give me the chemical ice bags, but they are more awkward and I actually had one break this time. Hope that helps. Also the Avoplex oil by OPI helps to put on your fingernails every day. It helps the aching.
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Houston and others - I had my first infusion today and my pre meds were all oral - 50mg Benadryl, 12mg Decadron, Pepcid (or Prilosec_ and Tylenol. I was told I could decrease the Benadryl and Decadron after I've "proven myself" - no allergic reaction. She said there would always be some Decadron but the Benadryl could move to taking a Claritin at home the morning of infusion.
My take home nausea meds are Zofran and Phenergan and both are as needed but I was told to take the Zofran every 8 hours the first 3 days this time and then next round just as needed. I can not imagine why your provider is against them - Phenergan is cheap and Zofran isn't that expensive either, makes no sense to me.
I iced my hands and feet the feet werent too bad - I basically used elastic to make sure the bubble type sheets were in contact with my soles and then placed another sheet across the toes and just laid it there, worked pretty well. The hands were rough - but I had ziploc bags of that pellet type ice - aka rabbit turd ice. I put gloves on and just dove them in there - it was not the most pleasant thing but my nurse said there was a pianist that came and she uses a bowl and just keeps her hands submerged.
Funny thing - had a crazy morning, my mom was supposed to go with me and she came down with pink eye so I went alone. I got pulled over for speeding and the policeman asked why - he saw my port all covered with emla and a bottle cap and waaaay too much saran wrap and I said almost in a boohoo I'm about to be late for my chemo appointment and I was totally speeding and you can give me a ticket but please do that as fast as you can. He smiled and said, please be careful - a wreck would make things a lot worse and I would hate that for you, just slow down and get some rest. I will find that man and bring him cookies. What a blessing - and thinking that I needed to hurry was a crock - they were running 2 hours nehind at the MO which put infusion even later. Didn't get to ice my mouth and I have some tingling on my tongue - the Biotene kind of stung. Going to try the other concoction.
sorry this was long - I'm making a t-shirt that says "I'm sorry for what I did on steroids" lol
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Thanks MJS1266 and labscientistmom
I will try ice baggies tomorrow. I will also ask about B12. My nurses never heard of icing for Taxol (!) at my tiny local hospital, but the MO said it was fine with her, as she'd never seen mets to fingers and toes. I don't think I'll get any help from the nurses though. They seem very busy. So maybe I'll bring a cooler with a big bag of ice extra bags of ice. Should I experiment and only do one hand and one foot? (kidding, but I'd love to know)
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Reflect,
I would just go for it. Do the best you can. Start 15 minutes before the taxol which is probably at the start of Benadryl. Leave on 15 minutes after, so 1.5 hours total. I'm pretty surprised nurses in a chemo center in Mass. haven't heard of icing during Taxol. It may soon become a part of the protocol based on this study. According to the research nurses, the study so far is pretty conclusive that icing helps reduce or prevent neuropathy during Taxol. I'm one of the very few that had any symptoms at all. I can only imagine how bad it might have been if I hadn't iced. I'm so glad I didn't have to stop Taxol as I did neoadjuvant chemo and the Taxol got rid of the cancer completely. Good Luck, MJS
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Reflect, you should ice both feet and both hands. You don't need a fancy setup. My MO and NP recommended it and I'm very grateful because at 5 weeks PFC I have no neuropathy and no nail loss despite going through both weekly and dose-dense Taxol and having LOTS of side effects. They have to have ice somewhere in your chemo suite I would think since they use it for other purposes. My set up was small ice cubes in sealed plastic bag, in bucket. One bag under the feet and one on top. Similar bag in basin for hands. One day when their ice dispenser broke down the nurse went to get me some in the billing department!
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Reflect you are so welcome! Hope it helps you and I think it should. the first week I forgot and the night of infusion day my middle and end joint of all my fingers hurt like I slammed them in a door. Now after icing the 2 -4 weeks, I just get some intermittant aching and numbness and sometimes sore fingernails. My feet hurt a lot the 2nd week, cause i didn't start icing them til week 3 cause I had a lot of pain on bottoms and numbness in my toes. now not much pain, still some numbness in toes, and one big toenail starting to turn black yesterday. It's worth the trouble for the minimization of symptoms and I agree it may become protacol for the success of the studies going on now. blessings, we can do this! A
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Hi,
I'm just recovering from the steroids from my 4th Taxol on Tuesday. My MO finally agreed to reduce the decadron and Bendaryl, but he refuses to drop them. Instead, he's prescribed sleeping pills and melatonin. Would prefer less medication, so I used melatonin last night.
I had some nail darkening from AC, but since I switched to black polish, it hasn't spread.
For 2 of the treatments, I iced my hands and feet. It's low tech. For my feet I put a ziplock bag of ice in a neoprene lunch bag and stick my feet under the ice bag inside the lunch bag. For my fingers, I have a sleeve from a cold pack that I fill with bags of ice. The ice needs to be replaced once. I start during premeds and stop after the saline rinse after Taxol. Hope I'm doing this right. No pain or neuropathy so far. I do have a vitamin B complex pill, but I don't take it consistently.
I'm more excited about my hair coming in. Some dark hairs, but lots of little white hairs. Do the white hairs fall out or will they have color as they grow
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I had my 8th Taxol treatment yesterday, and I now have 3 left (woohoo!!). I am still getting decadron, pepcid and benadryl before my infusion, but I will be speaking to my doctor about reducing my decadron since it makes it hard for me to sleep. I don't take any anti-nausea meds at home since I haven't needed them, but I do take a daily zofran for acid reflux. I do think that if you have nausea, and I had horrible nausea with AC, you should insist on anti-nausea meds. They should at least give you Emend with your infusion.
Have any of you noticed any voice changes? My voice changes when I am tired-it becomes hoarser. I am not sure if it is because of fatigue or the acid reflux. Do any of you have this?
I am sending positive thoughts to all of you, and I hope you have a wonderful and pain free day.
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Hi ladies,I don't know what happened but i somehow was kicked up of this group notification and missed at least few weeks of conversations.
I am done with 7 taxols.5 more to go....
I see there still discussion of icing . I do ice hands and feet and there should be somewhere a picture of me icing. That is how they do in Sloan in NY. They actually offered it to me before i read anything about it on forums. If you search for pictures i posted in this group before you will see it. Nurse brings ice and places the way it is on the picture.
Now question about hair..for those ladies who are only on TAXOL no AC before, when do you ladies start to loose hair and if any eyebrows? I was told by my MO that i will keep my eyebrows but i see they not the same anymore, they are much thinner ... As for hair i am doing cold caps and for now i still have hair but i shed a bit not so much .... I just worry if caps are working.0 -
Citrineff: HUZZAH, only 3 more to go!!! Whoot, whoot! Yes my voice gets hoarse, I think it has to do with mouth dryness. Have you tried the dry mouth lozenges with xylitol or the original Ricola? they both help me, and I havn't had any mouth sores yet. I like your icing ideas for the feet, gonna try it, that's the harder part for me. The reflux causes hoarse ness too. Have you tried aloe vera juice? it helps the reflux. Some of it is nasty tasting, but all you need is a couple swallows and it really helps.
blessings, A
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Viktoryak : I finished 4th taxol this Tues, losing lots of pubic hair, my head hair is hanging in there, but its texture is changing, and noticing more strands coming out as I comb it. I think only a matter of time now. Hoping it just does it so I don't have to anticipate it any more, but grateful for every new day with hair!
Hooray and Huzzah for you finishing 7 rounds! whoot, whoot
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labscientistmom, thank you for the great suggestions!
As for our hair, I lost my hair with AC, although I was never completely bald. A few scraggly patches stayed on my head, but I lost my hair everywhere else. I lost most of my eyelashes on my left eye, but kept some on my right-so weird. I also lost most of my eyebrows, but the hair on my upper lip continued to grow--how lovely (sarcasm)- and I actually got new hair under my lip-WTF!!
The hair on my head actually started growing back about 2 weeks ago, so about half-way through the Taxol. I have read that this could happen, but that I may lose it all again at the end of my treatment (so in about 3 weeks), or it could not. Obviously, I am hoping it does not fall off again!
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Hi ladies, just went in for my first Taxol this morning. It went overall well, I asked lots of questions to the nurse and pharmacist about the drugs. I found out they give me Decadron, zofrsn, benadryl, and pepcid before Taxol, and said I don't need to take any from home. Half way through the Benadryl I was knocked out fell asleep. I'm still having lingering effects when I got home. So far I don't have any nausea so I planned to ask my OC to stop the Decadron, and pepcid, what does zofran do, IDK the nurse kept saying I still need the pre-meds in later round cause I may get reactions later. My impression is my OC or health provider just want more drugs and drugs to feed on the pharmaceutical. What are your thoughts on this. I still don't like to put more drugs when I don't need them.
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Houston, I am given a Clarityne rather than Benadryl before Taxol, and they give me a steroid as well, but I can't remember which one. It might be prednisone.
When I was AC, I had to take dexmethasone (decadron) for the next two days to counteract side effects. I don't need to now, but my doctor has said I can take them again to get me through my worst days on Taxol. I'm having a rough time on day four and five with appetite and energy.
Zofran is an anti-nausea med. I don't have Zofran, but have metaclopramide, and was told just take it if I need it.0 -
Houston - I get decadron, pepcid, and benadryl during Taxol. My MO agreed to reduce the decadron and benadryl, but he won't drop them. He said everyone is allergic to the solvent in Taxol. I've just added melatonin to help me sleep. My sleep isbetter this week (#4) than in earlier weeks.
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serenity, are you sure you can take melatonin? I read online that it shouldn't be taken for people with cancer. You should ask your MO if it is ok. Also I asked my MO to reduce steroids he said No. As for helping to sleep 2 days after treatment I take Xanax.
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