Weekly Taxol group
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mjs1266, thank you. My MO said unless for special circumstances, will need to do blood test the day prior. And my insurance doesn't cover neulasta, just the other one neupen sp? The one that needs to take 7 shots!? And gotta take it within 48 hrs after each AC infusion....first shot will be taken at the clinic, then I am on my own onwards? Anybody Give themself these shots? I will probably pass out! And with that PICC line need home nursing to change dressing weekly...sig
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Ladies,
I had my third Taxol + Herceptin today. I am icing my hands and feet during Taxol. I haven't lost any hair yet. Anyone on the (T+H) regimen ahead of me? I have experieced stomach cramps, dry skin, eyes, and nose (bloody noses), fatigue, a little diarrhea, insomnia, minor muscle and bone aches and pains. I get out and exercise 3-4 times a week and am trying to get accupuncture weekly. Saturday, I hope to hike 5 miles for a local cancer house fundraiser to a hidden peak. At the top, there will be food, a band, and the youngest girl with breast cancer is speaking. She was 8 years old when she was diagnosed. I plan to be inspired!
My side effects are manageable, so I hope for those on the same chemo I am, my experience gives you hope. I am afraid of how I will feel about losing my hair, but taking it one day at a time.
Be good to your selves! Hugs
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KatjaDVM: How are your feet? I was concerned because you mentioned blisters on them. Do the soles hurt anywhere? Feel like bone bruises in the heel or ball of foot perhaps? Are they red? If so, you may want to read my posts and look at the photos I posted earlier regarding hand/foot syndrome.
I didn't recognize the earliest symptoms I had, and had I done so, my MO could have reduced the dose earlier (which we later did) and probably avoided my having to have been completely bedridden for 7 weeks. It's very rare with Taxol or Taxotore, but I had it...and it can get worse; the only solution to keep things as they are is to reduce the dose. If you have questions, you can always PM me too, or I'm happy to answer here if it applies.
The good news is I am now 2 weeks PFC and the feet are gradually getting better as the chemo leaves my system. Not back to hiking or even neighborhood walks yet, but able to drive (!) and actually did a small grocery shop yesterday--very exciting! Good luck!0 -
RUBYSLIPS - Taxol 8 today, White cell count was 4.5 (4.3 last week) Neutrophils 3.2 (2.8 last week), so was pleased with that. Didn't do anything different this week but drank more water towards the end of the week whereas last week was hardly drinking any.
Zoziana - great to hear you are doing well.
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I am 10 days PFC. Still have so much swelling in the legs.Especially in the evening, hard to walk:(
I wonder if acupuncture can help? Any other recommendations?
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Jemever I just had Taxol #10 last Tuesday. Last week the soles of my feet started getting itchy before turning into painful tingling. I tried B12 and L-glutamine, but what helped quickly was Reactine (Cetirizine). I'll take B12 and Reactine daily for the rest of treatment. Since the pain was not constant, my Taxol dosage was not reduced/delayed. Putting my feet up also helps.
Scarysadday - I had to give myself Neupogen shots after AC to bring up my neutrophils. If I can do it, anyone can. The nurse will show you how. I needed to put lotion on my belly because the alcohol wipes started drying out my skin.
viktoryak - Have you tried lying on your back with your legs up against the wall?
I have 2 more Taxols left. My MO dropped the weekly blood draws, so my treatment days will be much shorter. Rads will be next following a much needed break. I won't see my MO for 3 months. Looking forward to some real hair growth instead of my current peach fuzz with scattered real strands. Will need to buzz soon to avoid the Charlie Brown look!
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Zoziana: The redness and pain left after 24 hours and now I am just getting tingling. added B6 R lipoid acid, capsacian cream and some massage. They think it is neuropathy and not the more severe reaction that you had. I am glad that you are on the other side of chemo and improving. take care, kelly
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Hello to all on this board and I hope you are doing well. Is there any side effect from the weekly Taxol that you found in particular to be cumulative over time - e.g. fatigue, neuropathy, etc. I had my first round last Wednesday and found the side effects of the Benadryl and the decadron to be worse than the chemo itself. Fortunately they seemed to wear off completely by Saturday morning. My infusion nurse did say that they will cut the Benadryl dose this time. After it really kicked in last Wednesday, I felt like I was drunk and needed a chair to be wheeled to the bathroom. Felt like I was going to pass out while sitting in the infusion chair also. My heart was pounding for 2 days - most likely from the steroids? Having never had Benadryl or steroids before, am hoping I will become more tolerant to SE as treatments progress.
The worst from the Taxol seemed to be dehydration (drank lots of water) and some tingling in my feet. Is there anyone receiving paclitaxel (vs. taxotere) who DIDN'T lose their hair completely - just curious. I did get a wig in case I don't like the bald look. I will be most interested to see what effects it had on my cell counts (WBC, RBC, platelets) this Wednesday. I know each person's response to treatment is highly individual but it's nice to be able to compare notes. Thanks so much to all of you for your posts - it has been so helpful to read of others' experiences. I wish all of you the best on each of your journeys in fighting this disease that is so sadly prevalent these days.
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Hello All,
I've just had my 13 treatment of Taxol. I get a weekly infusion which isn't bad. I've been fortunate that my side effects have been minimal. No neuropathy in hands. I have a wee bit of numbness in the last 3 toes on my right foot but I've this since Nov 2015 so I am not equating it with neuropathy. When I move my feet, the numbness is gone. Yes. lost all my hair between the 3rd and 4th week. Best to get your wigs before hand. I'm not vain about anything except for the hair thing. The pre-meds weren't bad except for the Benadryl. After it's given, I get sleepy. I put on my head phones and listen to music. I take a nap while the Taxol is going through my veins. Then it's time to leave. For a chemo treatment, it wasn't a bad as I expected.
I'm stage iv and I do have a question for you. I asked what will be the maintenance protocol when I get a clean bill. TM in the normal range and clean scans. My onc said that I will be on Taxol indefinitely until it either stops working or I get toxicity from the Taxol. Has anyone been told this?
Best of luck to all,
Hope5
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For those that have posted recently about the Benadryl, I have a solution. It is called Chlorpheniramine. It is a pill (4 MG). After my first infusion with Benadryl I told the nurse the Benadryl was the worst part of the treatment. She said, oh, we'll just switch to this other one that doesn't make you tired and doesn't go straight to your head because it's in pill form. She said she just had to put "not tolerated" under Benadryl. I asked why, if the pill was so much better, they didn't just give that instead and she said it's because Benadryl is cheaper so they just have to give a reason to use the other, such as "not tolerated". She said it really isn't even that expensive, but because it is at all more expensive, they have to give a reason. The pill is awesome. Really no drowsiness to speak of no other SE's. You just have to get it 30 minutes before the Taxol. I took a pic.
Hope this can help some of you too!
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Thank you RubySlips for this info on an alternative to Benadryl!
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Hey Roofcat59, I had AC first, so lost ⅔ of my hair then. I could wear a scarf and look just like I had short hair under it.
The rest of my hair fell out about 3 week into Taxol, and I was left with about 5% of my hair. I've shaved it now, but I can tell that it hasn't fallen out. If I hadn't had he AC first I wouldn't have lost all my hair on Taxol either, I don't think.0 -
it is weird but I lost all my hair with AC but kept my eyebrows and lashes. When I have the taxol I see strands of hair grows out on my scalp, but eyebrows and eyelashes falling out. I do self breast exam after shower everyday. I can't tell but does anyone experience puffiness under the arm while on Taxol?
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high hopes: My husbands cousin is a stage 4, second occurrence and they have her on taxol weekly for 6 months. Glad you are not having any issues. Glutamine powder, vitamin B6 and Lipoic acid are all supplements that help if you develop any signs of neuropathy. You should also look at turkey tail mushroom for immune support. Nutrition facts.org has info on it and broccoli sprouts and breast cancer. Kelly
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highhopes - I take sublingual vitamin B12 for neuropathy. There's a thread for Weekly Taxol for Stage IV that would be more helpful. Here's the link below. Hope you get great results.
https://community.breastcancer.org/forum/8/topics/790290?page=55
I just had Taxol #11. Neuropathy in the soles of my feet is intermittent. The nail darkening from AC #3 has not spread and has almost faded. I can see it at certain angles. I had switched to an opaque polish, consistently iced hands and feet, and rubbed vitamin E oil around nails.
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I just had 6 of 12 infusions. Overall doing really well on it. light numbness on my fingertips but very manageable. My huge side effect is my breathing. By day five I start with a cough. By day seven i sound like I have a bad case of bronchitis. They increased my steroid significantly and it helps but holy steroid hell. So now, in addition to the steroid during the infusion, I take 12 mg the day before, 12 mg 6 hours before -- a huge bag during infusion. That holds me over for three days and then they have me taking 4 mg on day five, six and seven. needless to say, I am gaining weight and can't sleep. (hence the post at 4:45 in the morning)
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I hear ya njnancy. Although my treatment was cancelled today due to low neutrophil count, I had already taken my steroids. Here I lay at 2:44 am. That's really interesting about your cough. I've been getting one around day 5 too with a scratchy voice. Hmmm
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njnancy - Wow! That's a lot of steroids. Are you still coughing? Make sure to drink lots of liquids. Can't hurt.
I'm ultra sensitive to the benadryl (12.5 mg) and decadron (8 mg). The benadryl dosage still knocks me out during treatment and on the way home, so I then can't sleep much overnight after the first day. Melatonin, recommended by my MO, helps. He gave me a script for sleeping pills, but I haven't filled it.
I just learned that steroids and antacids deplete magnesium levels. Magnesium helps us sleep. Since your steroid dosage is so high, I would ask for a magnesium infusion on your chemo day and maybe a couple of days later. It takes a longer time to bring up magnesium levels through food and supplements. I would still do it anyway. Below is copied from one of my other posts:
The best way to supplement magnesium is through your skin. Magnesium doesn't do so well through your digestive tract. Too much will trigger diarrhea. Last thing we need.
I try to get magnesium through a mix of food, oral supplements, and transdermal supplements.
1) walnuts, prunes, dark chocolate, unsulphured blackstrap molasses - these are multi-tasking foods, best one is molasses, but not the tastiest
2) magnesium calm powder (magnesium citrate) - inexpensive, just a little to flavor water sometimes
3) epsom salt (magnesium sulfate) - cheap, in weekly bath
4) Ancient Minerals bath flakes (magnesium chloride) - expensive, easiest to absorb, in bath with epsom salt
5) Ancient Minerals in aloe gel - on scalp, face, blood draw wounds, a few times a week
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Highhopes I am stage 4 and have been on weekly taxol for nearly 3 years now. I have found it pretty easy to tolerate. I think your body just gets used to it. I have spent the last 6 months on a trial for the oral version of taxol called Oraxol. It's even easier to tolerate as there are no premeds needed. I'm actually on a much higher dose than I was on the IV. I will stay on taxol till it stops working. I had widespread Mets and taxol delt to most of them. I know most people on this thread hate it but it's kept me alive so I'm more than a bit in love with it.
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Hi ladies,..I am staring aug 8 AC+weekly T with the AC round first....did u ladies do any icing on fingers and toes and suck on ice during your AC infusion? Clinic said they will not provide anything during the AC part (as its not required, but they will provide all the ice pecks and stuff for the taxol portion..any feedback would be appreciated.
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Shazzakelly- if you don't mind I'm asking did you have lumpectomy or mastectomy? Thanks and so glad Taxol works out for you. I'm receiving the weekly dose and it'd pretty normal though.
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Houston the first time I had a lumpectomy then I had a recurrence about 7 years later and had a mastectomy. I then got a new cancer in the good breast and had a mastectomy unfortunately scans just after my surgery showed I was already stage 4.
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Just had Taxol #2 yesterday. Seems to be way better than AC. No nausea, more energy. I ate ice during the AC infusion. I never got any mouth sores. And I have been icing hands and feet for Taxol. So far no side effects there.
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I finished taxol on 7/14. I have developed stiff muscles, mostly legs, but somewhat in my arms too. I notice it when I get up from sitting, or after I've gone for a mile or two walk. I kept up with walking throughout chemo. Anyone else have this? How long did it take to go away?
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I have to say, I am getting pretty damn sick of this whole process. I have been a trooper up until last week. I started getting tingling in my feet and hands. I do a lot of surgery, so really shaken up by the thought of losing that aspect of my career. I have dry eye, which has impacted my vision and basically, my attitude sucks. If one more person gives me the sad face, like I am doomed, I may just bitch slap them. And people need to stop telling me fucking stories about women they know who have died of cancer. that is not helpful! I am not their counselor! Bugger off!!!!!! Sorry for the rant. I am just getting sick of chemo. I am losing my muscle tone and my sense of humor.
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Oh Katjadvm,
I get that. I worried a lot about neuropathy and pushed back when it started. (I make etchings with small hand tools and small details and also sew--problems with fingers not OK) My MO agreed to reduce dose 80% and the neuropathy decreased but hasn't gone away completely. My stats are similar to yours (ER+ and HER -) except one of my tumors is grade 2, not 3. I do have 2 + nodes. My neuropathy now comes and goes (which is good) and only tingles and feels numb, no burning or pain. (also good, unless the nurses are blowing smoke) I just had my final (#12) today and glad to be done. I will let you know how it goes in coming weeks. But you should have a serious talk with MO or even 2nd opinion. My Dana Farber 2nd opinion MO said she would have gone with hormone therapy (no chemo) but it was late in the game then.
It's crap, that's for sure. I've told people up front that I do not want to hear stories about people with bc who died, and I don't want to hear about crazy alternatives either. Most people have respected that. I have a private list of "slappable offenses" that I tick off in my mind. People say stupid things.
We get it. Hang in.
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Katjadvm - You have every right to rant. I've had only 2 rounds of weekly Taxol + herceptin and am already thinking wow, this is my life for the next 10 weeks and then herceptin every 3 weeks for a total of a year. I admire that you have been such a trooper up til now. I am so fortunate in so many ways but still am overwhelmed at how much this is all like a roller coaster ride with the added loveliness of the ups and downs provided by weekly steroids. I know what you mean about the sad face. It's as if when you tell people that you have cancer that you've suddenly announced your own death sentence. Some people avoid talking about it all together while others want to tell you all the horror stories they know, which, I agree is totally not helpful. Some people I've talked to over the phone get this certain grave quality (no pun intended?) to their voice like they have to talk to me in hushed tones as if they are already at my funeral. It is certainly jolting to have to look mortality square in the face much earlier than you ever anticipated.
This is day 3 of my treatment cycle - my true "crash" day so far. Just remembered that I better get some more calories in before I fall off my chair. I hope your neuropathy improves and that you regain your sense of humor. How many more weeks of Taxol do you have? I see that you've come a long way since March; we're all pulling for you.
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Katjadvm - Restasis worked for me for the dry eyes. I still use it. At first, I used eye drops and dry eye ointments, but they just didn't work well enough. My eyes were so dry that they popped open when I was asleep. It was awful. I also had the tingling in my hands and feet. It gradually went away after I finished Taxol (dose dense). I hope you have the same experience. Try to take it day by day and hang in there!
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Serenty, thanks for the info. I am definitly going to talk to the doc about it on Monday. other then the breathing issue (minor issue, lol) taxol has been very manageable. After I wrote my post on Tuesday I woke up Wedensday really struggling. Back to the pulmonologist, who I am now on a first name bases and we text and he added ANOTHER type of steroid twice a day. ugh. i am sooo puffy but can breath a lot better. Right now focusing on the next two weeks (taxol 7 and 8) I can do this and then we will figure out what to do for the remaining four.
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Vent away Katjadvm! I am just beginning this process and am ready to spit at the next person who tells me "it's a journey" in that patronizing voice I've heard far to many times so far.
I just got my port placed today and feel like I've been hit in the neck with a baseball bat.
Chemo starts in a week. Feeling anxious about the potential SE. Trying to breathe deep and take it a day at a time. Agree, Roofcat59, that this is a roller coaster ride. I'd better yank down the safety harness because I've only just begun.
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