Any OK experiences with taxol?

gayj · July 2001

After 2 difficult experiences with A/C (my white blood count went very low and I developed an infection) my doctor is switching me to taxol which she says isn't quite as hard on the blood count. But after reading all the messages here about the side effects of taxol, I'm now dreading this treatment coming up this Fri. Has anyone had an easy experience with this drug? Or has anyone found ways to make it easier on you? What it sounds like I can expect is more sever and more frequent hot flashes (which I'm already having from going off HRT) and severe bone and/or joint pain. Tips, advice or encouragement would be welcome! - Gay

jeancmici · July 2001

Hi Gay,

I will be having taxol - my fourth and last this Friday also. Will think of you and wish you well.

I did not have many hot flashes going off HRT nor while on AC ( I am older than you tho' and that may be why - 63 - almost 64!
But after the ladies here mentioned hot flashed with taxol, maybe I too have that. whenever I exert myself with washing the floor, a lot of vacuuming etc. I get very warm. It passes quickly because I stop what I'm doing for awhile. They do not feel like the hot flashes I experienced with regular menopause. I did not start HRT until I was past the hot flashes.

Everybody will tell you pain goes with taxol for up to 5 days starting about the third day after - some have fewer days. I did not have good strong medicine with the first one, but survived with a few sleepless nights and then slept a lot to catch up - I was so tired.

I have Lortabs now and they are some help, but I delay taking one until the pain returns.

I'll admit I am not looking forward to the last one but am not as apprehensive as with my first - but I think you'll do fine.

It does seem to be easier on the WBC tho' my red cells were borderline low(er) each time.
I have not taken anything yet for that.

Also everyone has some residual tingling or semi-numbness in one or both hands ( the fingertips) and feet (toes). My left fingers are noticeable to me and my left foot sometimes feels not quite right, but it is minor.

About ten days after your treatment let us know how you are doing. In the meantime, good luck and prayers from Jean

gayj · July 2001

jeancmici said:
Hi Gay,

I will be having taxol - my fourth and last this Friday also. Will think of you and wish you well.

I did not have many hot flashes going off HRT nor while on AC ( I am older than you tho' and that may be why - 63 - almost 64!
But after the ladies here mentioned hot flashed with taxol, maybe I too have that. whenever I exert myself with washing the floor, a lot of vacuuming etc. I get very warm. It passes quickly because I stop what I'm doing for awhile. They do not feel like the hot flashes I experienced with regular menopause. I did not start HRT until I was past the hot flashes.

Everybody will tell you pain goes with taxol for up to 5 days starting about the third day after - some have fewer days. I did not have good strong medicine with the first one, but survived with a few sleepless nights and then slept a lot to catch up - I was so tired.

I have Lortabs now and they are some help, but I delay taking one until the pain returns.

I'll admit I am not looking forward to the last one but am not as apprehensive as with my first - but I think you'll do fine.

It does seem to be easier on the WBC tho' my red cells were borderline low(er) each time.
I have not taken anything yet for that.

Also everyone has some residual tingling or semi-numbness in one or both hands ( the fingertips) and feet (toes). My left fingers are noticeable to me and my left foot sometimes feels not quite right, but it is minor.

About ten days after your treatment let us know how you are doing. In the meantime, good luck and prayers from Jean

Dear Jean et al - Thank you for your quick response and encouragement. I will get back and let you know how it went. Good luck on your last treatment; you must be very glad you're approaching the end!
I too will admit that chemo has been probably the worst physical trial I've been through in life, worse even than surgery (perhaps at 60 I've been blessed!); consequently I have much awe and admiration for all of you (us) who have been through this ordeal and kept some sense of humor and positive feelings through it. I'm surviving this by enjoying and taking advantage of the good days, curling up with a good book, movie or the telephone (talking to friends) on bad days and always keeping my sites on the end to this. With appreciation to all - Gay

24242 · July 2001

Hi Gay
I think the doctors sugar coat most things because if you knew the real truth none of us would probably be doing it. Imagine some doctors don't like this site because it brings unnecessary anguish and more tests than they think necessary. Imagine doctors now saying don't self examine because they are having to do too many biopsies that turn out to be benign. I'm the one who found my lump and now one imagined it could be cancer. I am the one who hit every side affect imaginable and I made it through.
They are trashing our bodies and I am beginning to think those who don't have any lingering affects are the ones who are very fortunate. My doctor said by the 5 chemo I wouldn't want to come in but I was willing and able and one step in front of the other. Bye the end I couldn't believe I had made it because the odds were stacked against me.
With each day comes renued hope,
Tara 24242

nancys · July 2001

Hello Gay, Jean explained the Taxol very well. I have had the same experience as Jean with mild hot flashes. I had none while going through the change of life, but now I do experience them when I do any strenuous activity. I get up in the night to go to the bathroom and when I return to bed I must throw the covers back for about 10 minutes and then I am cold again. I am through treatment. Had 4 cycles A/C and 4 cycles Taxol. 33 treatments radiation. I started Tamoxifen with my first chemo treatment because of the trial I am involved with. The A/C was miserable for me. I felt sick the whole time, but for me the Taxol was easier. I had achy pain in arms and torso, starting on the 3/4 day and that lasted about 4 days, with each day improving. Never took any pain meds but Tylenol. When the aches were bad, I soaked in a hot tub and that helped a little. Sometimes I soaked several times a day and evening. After effects..some numbness in my toes on one foot and a little numbness in the tips of my fingers on one hand. The hand is getting better all the time, Can't see much improvement with my toes yet. My taste buds were really changed and I craved salty food and spicy food. Nothing else tasted good. Chocolate is still "out of my life". It leaves a very distasteful aftertaste to me. I just discovered this week that a vanilla shake tastes good now. I lost weight while on the Chemo and now my body is trying to gain it back, so I must be careful with my diet. I really like the "thinner me". Go into your treatment calm and relaxed and knowing that you will sail through these treatments quickly. Best of luck, Nancy

lindysu · July 2001

hi gay....I had a fairly easy time with taxol, if you click on my name I've described my taxol experience at my web site...I only had pain for 1-2 days. my blood count was always great and I did not have any numbness or tingling in my hands or feet. I did have hot flashes the first 36 hrs after a treatment. my feet did tend to swell towards the end if I was on them too much..my last taxol was june 3rd and my feet still feel a little tender and calves a little sore..but getting better with each day..........keep a positive attitude.......lindy

gayleyr · July 2001

Gay - I'm surprised your doctor is not completing the A/C therapy - I too had low white counts and infections - by taking blood counts weekly instead of at each schedule treatment - the dr. was able to monitor my blood counts better - give me Nupagen or Procrit as needed and fluids if I became dehydrated so each treatment was on time.

On the taxol issue - since I had had such a difficult time with the A/C treatments - he suggested that I have smaller doses weekoy instead of 4 treatments 3 weeks apart - this helped immensely and literature shows the effect is equivalent - maybe that would help. I had little if any effects from the Taxol - my hair even started to grow back mid way through the treatments. Good luck.

Gayle

gayj · July 2001

gayleyr said:
Gay - I'm surprised your doctor is not completing the A/C therapy - I too had low white counts and infections - by taking blood counts weekly instead of at each schedule treatment - the dr. was able to monitor my blood counts better - give me Nupagen or Procrit as needed and fluids if I became dehydrated so each treatment was on time.

On the taxol issue - since I had had such a difficult time with the A/C treatments - he suggested that I have smaller doses weekoy instead of 4 treatments 3 weeks apart - this helped immensely and literature shows the effect is equivalent - maybe that would help. I had little if any effects from the Taxol - my hair even started to grow back mid way through the treatments. Good luck.

Gayle

Dear Gayle - I think my doctor changed me to Taxol not only because of the difficulty I was having with low blood counts on A/C but because of how it was tearing up my GI tract and generally making me feel bad all the time. I'll still be getting on both Leukine and Procrit to bring up my counts, but she thought it would be OK to finish out the chemo with 2 rounds of Taxol which she thinks is as effective as the A/C regimen. I must say after two days of being on the Taxol I feel much better than I did on A/C at this point. I've had no nausea; I'm taking nothing now except Atavan for possible nausea. My GI tract isn't burning up; no diahhrea. I don't have the sort of dead, poisoned feeling I had on A/C. Evidently I'm one that can tolerate it (5% are allergic to it). In case I get bone pain later (usually after day #3, I'm doubling up on glucosamine/chondroitin complex and have a prescription of Celebrex, an anti-inflammatory used for arthritis. Anyway I'm hopeful again that I'm going to get through the rest of my chemo with no major problems and with more comfort. Thanks for yours and everyone elses support. Warmly - Gay

mellie · July 2001

I had 12 weekly treatments of Taxol, finishing up in February. I thought the Taxol was much easier than A/C. First of all, the nurses gave me Benadryl via IV, which put me to sleep. That was a great relaxation time! I didn't experience any real problems until about the 9th treatment. Then my fingers and toes went numb, and my legs ached. The onc. prescribed Vioxx, which helped for a time. But on a couple of occasions, I took Percocet for the pain. In retrospect, it doesn't seem that bad. Oh, one more thing your doc probably won't tell you -- your nails will start looking really awful and may come off. Not to worry -- mine didn't hurt; they just looked nasty. You can handle it, though!! Good luck!

bkallway · July 2001

I have had three Taxol treatments. The only problems I have had have been joint pain (especially in my legs) and a tingling sensation in my toes. Actually, it has been considerably easier than the A/C treatments. I am not nearly as tired. I guess I can safely say that I feel normal most of the time.

dangelo · July 2001

Gay, I just had #8 taxol treatment with 4 to go. I have been on weekly instead of every 3 weeks, which I think made it a lot easier for me. But I do have blurry vision and sore/numb big toes and tingling in fingers and toes when I am up too long. I haven't had a lot of trouble with bone/joint pain but do get the "midnight hot flashes".
All in all this has been a breeze compared to the Adriamycin and Cytoxin that I had first. It was awful and I was wiped out all the time. My hair has even started to grow back. Just be sure to drink lots of fluids and get plenty of rest and you will make it through it before you know it.
Always remember, THIS TOO SHALL PASS.
Debbie

Any OK experiences with taxol?

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