Weekly Taxol group
Comments
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Sgc,
My heart rate is high and I am 9 months PFC . It is finally lowering itself from like 112 to upper 80's. Mine went up during my first AC treatment. That treatment landed me in the hospital for a few days. Congratulations on your halfway mark. I started Taxol on October 10th last year. It was the day following my 51st birthday. Well it seems I will make it to 52 on Wednesday.
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Best of luck to you. Oh I had the lip numbing during my first AC, but not during Taxol. That got my feet and hands. Still are messed up.
Rose0 -
Mareluna- thanks for responding. Happy Birthday on Wednesday ! Thought I'd send my wishes today while I still remember, darn chemo brain! I've always had low blood pressure and heart rate so when it was 123 I was really shocked! I was pretty annoyed with my DH so I blew it off, but now I wonder if the taxol or Herceptin is causing something to go amiss. Sorry you are still dealing with SE's. I have had neuropathy with my hands, feet, and parts of my face, but I'm starting to wonder if it is also effecting my ears. This stuff is nuts, but I will do whatever it takes!0 -
I was told by a cardiologist that when you begin getting increase HR or sob (short of breath) they can help offset the cardiac effects with meds. Just thought I'd throw that out there.0
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Just started my weekly taxol. I have had two infusions with moderate to severe reactions after. My white counts plummeted and I had to skip two infusions and get nupogen. Plus, I got a severe case of mucositis, grade 3-4 according to my doctor. Now she is reducing my dose of taxol by 20%. I am worried that this will effect my overall outcome. Anyone else going through this?0 -
I am on AC regimen and had an issue with one foot. Severe pain started in my arch, moved to my heal then to the right side of my foot. Ice packs helped a lot. I also where ice packs on my feet during treatment. I also bought Bag Balm lotion, which I heavily lather on my feet every night then put on a light pair of cotton socks. I have cotton gloves in the event I get issues with my fingertips, I'll lather the hands and wear the gloves to bed. Thursday will be my last AC treatment, then I start Taxol. four treatments over 8 weeks. I'm glad to hear that most are handling the Taxol better than the AC cocktail. If there are any SE's that I should be aware of, please post.
thanks.0 -
I'm starting Taxol in 2 weeks Mo informed me in will need to take 10 pills of decade on 12 hrs prior 5 at 9:30 pm then the other 5 at 3am...I'm very nervous about taking this many steroids. Was anyone else on this regimen?0 -
I was given steroids and IV Benadryl at my first 2 Taxol infusions. Since there was no reaction, I took NO pre-meds for the next 10 infusions. I didn't take anything at home. I had no reaction at all.
Studies have been done, so they know if you don't react to the first two treatments, you won't react at all, even without pre-meds. Some MOs just aren't keeping up on studies.
Blessings
Paula0 -
candi, how strong is each pill? I got IV steroids on the day of infusion - started out with 50 milligrams and the doc agreed to reduce it to 25 after my first 3 infusions but he wouldn't eliminate it altogether. I had no problems with it, other than weight gain and trouble sleeping the night of the infusion. The sleeping was much better on the 25 mg dose.0 -
Candi - I take 8 mg (total of 2 pills) of Dexamethasone (steroid) and 150 mg (1 pill) of Ranitidine (Zantac) the night before and morning of the chemo. About 30 minutes prior to chemo I take 50 mg of Benadryl then in the premeds in the IV I get Benadryl and Zofran and more steroid. I had a reaction during the first infusion - chest tightness, flushing, weird feeling in stomach - and they stopped the infusion, pumped me with Benadryl and then continued on. Since then I've been fine but still taking the premeds.I do get an increase of night sweats when I take the steriod but two days later I'm fine. The night of chemo I'll take Benadryl which does help sleep a bit.
Debbie - my main side effects have been the night sweats/flushing and neuropathy. I've been getting adjusted by my chiropractor two days following each treatment and have been walking a lot which seems to help ward off the worst of it. I've also had a bit of neck pain and body pain similar to what I'd get after the nuelasta shot during EC but nowhere near as bad. That is about 2 days after chemo and goes away the next day. Fatigue has kicked in 3-4 days post chemo each week but exercising really helps.0 -
I'm so glad I learned about the steriods ahead of time, 12 hr and 6 hr through this site! Someone recommended it due to hand/foot syndrome that's not suppose to be a side effect of weekly taxol, but I continued it as I had it real bad with Xeloda! For some reason my tx center was unfamilar with this protocol. Not sure why. Would think it would be well known. May I ask those of you who are getting presteroids (taken 12 hr and 6 hr ahead at home) are you getting your treatment from a major cancer center? The pharmacist agreed to allow me 4mg beforehand. I figure this is better than nothing, but I'm trying to find out where this protocol might be written so I can pass it along and educate them further. If I need more, I need to have something to back me up. Also, have any of your onc's expressed any concerns/warnings about the use of the additional steriods? If it keeps my feet calmed down,I'll be happy!0
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For my first Taxol only, I had to take prednisone at home... 12 pills the night before, 6 pills the morning of -- then whatever they did in the pre-meds. Since I had no infusion reaction, I didn't take any oral meds before any of the other taxol infusions.
Hands and feet... I had hand and foot pain during Taxol... also swelling around the nails like I had ingrown nails. After that I had major peeling like when you have a blister. When I had really sore feet, I thought initially it was something to do with a change in shoes... then all my callus' came off! Interesting way to get smooth feet. I also had severe dryness and peeling of skin around all my fingernails... dunked my fingers in Aquafor!
I'm now on Herceptin only... nails are growing good, but I just lost one toenail... who knows what will happen next!0 -
SyrMom - My chemo is at my doctor's office (there are several doctors that work there) and they have three treatment rooms for chemo. My MO is the one who prescribed the steroid for the night before/morning of and in the premed IV. I haven't had hand/foot pain like you, just some neuropathy in my fingertips and toes.0 -
Had my second taxol yesterday and I noticed at lunch today things started tasting wierd. Its OK though because I am really working on losing weight (at most 2 pounds a week MO said) so that I wont be overweight by the time is over and so that I can get my tummy tuck with my recontruction.0 -
Taxol #2 was on Monday. Noticed late yesterday and again today increased pain in lower back and hips, aching, bone pain. Believe I've read others have aching a few days after infusion. Also, some intermittent nausea and stomach pain - mild.0
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Taxol #7 is history! Still had pins and needles internally- either I am very weird or no one else talks about this. Very odd feeling! Tastebuds have been worse - I can't believe I can't eat chocolate; possibly a blessing in disguise! My tongue even feels different like it is rough. Neuropathy in hands and feet about the same. Nails are a mess, but I am sure my being hard on them doesn't help. All in all it's not so bad, in fact very livable. Hope you all have a great weekend with minimal or no SE's! Susan0 -
Anyone have any smoothie receipes they would like to share? Mine either come out tastless or too watery
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Hi, I am new to the group. Taxol number 4 is on Thursday. Pain is increasing especially under my arm and neuropathies. Trying ot hang tough ... exhausted. Ideas for terrible mouth taste and exhaustion? I/ finish the week before xmas. can't finish quick enough. Anone having surgery after taxol? What are you doign to get in shape? V0 -
HVV- I got 4 more taxols to go then surgery scheduled for dec 5th. Cant wait for Thanksgiving and Christmas, have so much to be thankful for and moving on to a new year Im an exercise freak but Im taking it easy. I walk, stretch and take care of house, yard and horses. I eat very healthy and really try hard to rest when my body tells me to. Don't push it to much our bodies are under a lot of stress and resting us healing 0 -
Taxol #3 yesterday and still feeling good. The worst part so far is I am so sleepy after the benadryl that I just go home and go to bed. On the upside I get a really good nights sleep.
syrmom - I do greek yogurt, bananas, strawberries and chia seeds and a little nonfat milk. Sometimes I add kale but it doesn't blend completely so gives it a wierd texture.
HVV - My surgery will be after my taxol and the 4 rounds of FEC. I am walking 60 minutes a day and running 3 times a week. I am going to start strength training (bowflex) twice a week in two weeks since that will be 4 weeks from my port placement. I am doing the couch to 5K to build up slowly because I hadn't been too faithfull with my workouts since May. I want to be in the best shape I can by the time I get to surgery.0 -
So today is 5 weeks pfc! Question for you ladies... my peripheral neuropathy is getting worse -- anyone else have that happen?
Also, I finally got cleared from my doc on taking supplements. Does anyone have experience in starting B6 and glutamine after they have completed chemo? We are pretty strapped financially and I don't want to be purchasing supplements that do no good.
Thanks!!0 -
6cats~~I have continued vitamin B6 since finishing chemo in May. Neuropathy is completely gone from my left foot now, and only remains slightly in the toes of my right foot. I stooped taking L-Glutamine about 2 weeks into Taxol. I'm sorry I did. I think if I had continued, I would have skipped this altogether.
L-glutomine ....30 grams per day. Two heaping tsps make 10 grams. Mix it in your favorite juice. I used cranberry/grape. It's not gritty. I only tasted the juice. Do it 2 or 3 times daily. Just make sure to get the 30 grams. Take 100 mgs of B6 twice daily.
Blessings
Paula0 -
I don't usually post but instead read all the great comments. However I thought I would chime in about the l-glutamine. I bought it before I started taxol and started with 20g per day even though they said 30. I just couldn't stand 3 drinks per day. The 20 did just fine. After treatment 4 we went on vacation and I decided not to take the l-glutamine and did just fine without it so started to only take it when the tingling would come on. If I got tingling I would drink a 10 g shake and it would go away.
Well now I am 9 days out since my 12th and final taxol. I completely stopped drinking shakes after the last treatment but today I started getting an awful burning/tingling pain in my lower leg just above my ankle. It has gone on all day now so I am drinking an ice cream shake with10 g now to see if the pain goes. Don't know how many people get neuropathy after taxol but I certainly didn't have anything this bad during chemo.0 -
JM~~From what I've heard many people get neuropathy when they quit as soon as chemo is finished. Those toxins stay in our bodies for months. That's why it takes so long to feel normal again.
I mixed my L-glut in a shot glass so I didn't have to drink so much, and I did 15 grams so I could just do it twice daily. I'm sorry I stopped it so soon.
Paula0 -
Paula,
Thanks for the idea about taking the l-glut in a shot glass! Although the ice cream shakes are yummy, I am not sure my waistline has fared too well with this method:) I'll try it this way later....just hoping it isn't too gritty. I think you said you drink it with juice. Thought I was getting away without this terrible SE and was in the clear but guess not. It's just kind of weird that the burning and tingling is not in my hands or feet but in my back leg. It feels like what I can imagine shingles feels like so I keep looking at my leg being paranoid that I m about to break out in a rash. I can't afford to get sick right now...as you can see from my tag line I have surgery in a couple of weeks.0 -
So it sounds like even though I'm 5 weeks pfTaxol... it might benefit me to start B6 and glutamine? Can I get what I need at Walmart? Or will I need to go to the health food store?
And is the glutamine only sold in powder form or can I get my 30gram/day in pill form?
Thanks for your help!0 -
6cats,
LGlutamine you can get at GNC in chewable form berry flavor! They are awesome and taste great. .I used them all through AC and never got a mouth sore! I took 1-2 a day 1 day prior and up to 3 days after treatments. They are about $12 a pouch and they last for about a 1-2 months. They do have powder form but who wants to have to mix it all the time. Just throw in handbag and you are all set!0 -
38tooyoung~~How many grams are in the tablets? My onc told me I'd have to take 14 pills to get what I get in the powder. It isn't difficult to mix. I used a shot glass and mixed the 2 tsps into cranberry/grape juice. It wasn't gritty. It mixes well, and has no taste other than the juice.
I get the B6 at Walmart for about $3.
Paula0 -
6cats, the pills I found are only 500 mg each, so you'd have to take 60 of them per day to equal 30 grams. I am actually taking the pills right now (just 4 a day) to help deal with a neuropathy flare-up 8 months PFC. I don't know if such a low dose is actually helping or not - it's been 2 months since my big toe got numb again, and it's just now getting better. I was so tired of drinking down the powder that I just couldn't bring myself to do it again. (I tried various things as a mixer, and ended up with Crystal Lite iced tea with lemon, about 8 ounces per 15 gram glutamine dose. The stuff I had didn't mix well - it was more like a suspension, and I usually had to stir it again after drinking half of the glass. And now I can't stand Crystal Lite iced tea with lemon!) I got my glutamine powder at GNC; found the pills (capsules, actually) at a local grocery chain.0 -
6cats,
I got my l-glutamine fom GNC also but did not see any berry chews. I bought pills at first but had to return them when I realized they were only 1 g each. I would have had to take 30 a day! Just check to make sure whatever you buy as a high dosage.0 -
#3 weekly taxol completed on Wed., now the shedding has begun.
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