Weekly Taxol group
Comments
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Just had my first half of Taxol #2 on Wed.....the neuropathy in my pinkie and ring finger on my left hand is so bad they're pretty much useless but the rest are ok. So far 3 toenails have come off but fingernails are holding on. I take 1000mcg vitamin B12 and was switched from Effexor to Cymbalta which is known to have some benefit regenerating the nerves.......so far nothing. The fatigue days 12-16 was so bad i could hardly move and felt like I was stoned.
This week when I went for my infusion the pain in my arm when they tried to start my iv was so bad I almost passed out - is this part of the neuropathy too?? Anyone else had this experience......new one for me.
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To all just starting or already suffering from neuropathy, what was recommended to me was Vitamin B6 - 100 mg per day; and glutamine powder - 30grams per day divided up into 2 or 3 portions. I used the GNC glutamine powder, and 15 grams is a heaping tablespoon. Stir it into whatever you like and drink it down. (It's kind of gritty because it doesn't really dissolve). I took the B6 everyday, and used the glutamine on the day of treatment and 3 following days. It seemed to work for me. I'm sure if the neuropathy continues you can use glutamine every day. Continue for a few weeks after you finish treatment - I didn't and got a numb toe about 2 - 3 weeks PFC. If you google something like "glutamine for neuropathy from taxol" you'll find study results indicating good results.
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Patin is the glutamine powder very expensive? I'd be willing to try just about anything that might fix this. Will it make a huge difference do you think that I'm already in to my treatments and have the neuropathy or might it still help?
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Thanks Georgetta. That is a bummer
Well, like you said, we'll just have to wait and see. Rats!
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Rider girl, I bought a tub at GNC for about $75 or $80 which lasted me the entire time. I think it's worth a try for you - you could buy a smaller size and try it for a few weeks to see if it helps.
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I'm having my last Taxol next Thurs, I was assuming that I would have another CT scan but my Dr states he doesn't do that but I can request it, so I am but I'm wondering if I'm just being silly and is anyone else having scans after finishing chemo?
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Hi everyone I haven't been on in awhile... I have to join in to give my tesxtimonial on the neuropathy. I am having my 5th taxol tomorrow - neuropathy set in after tx 1 - in my face and hands. I was already on 100 B6/day. I got specific info here on how much glutamine (quite possibly from you PatinMN). What a worthwhile investment. It has worked for me. My onc also told me to take Magnesium supplement which I did at the same time I started the glutamine. I got a slow release version - sloMg at Walgreens. Anyway - numbness in my face is gone - just a slight bit in my fingers. So - this combo - B6, glutamine (30 g/day in 2 doses), and sloMg is really helping me. Everyone is different - so maybe it doesn't help everyone. I will check back in and let you know how it goes after a few more tx. I think the neuropathy in my face was on the severe side... around my mouth. When I washed my face I felt like I was washing someone elses - it was really strange sensation! I was always worried I was drooling or drooping - but my husband says I wasn't I was only really paranoid because the sensations around my face and chin were so strange.
This weekly taxol is feeling really long... but still much kinder to my body than the AC. I think tomorrow I get to try lower steroids (down to 4 mg) - so I have my fingers crossed I don't have a reaction. I see some people have them for the first time even this far in?!
OK - I hope everyone is having OKish days. Big congrats to those who finish up this week - you are all troopers and great inspiration to people like me.
Take care all-
Mia
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Paula -- Yea on the fuzz and good luck tomorrow. I've said a prayer that things go well for you. Expect it to take a while tomorrow since they will do things slowly so they can watch for any reactions. AC was terrible for me, but Taxol has been much easier, even with the SE's. I hope that you find it the same.
Taxol # 6 today -- halfway there. I've had hair growing since last week, but still losing eyelashes and eybrows. My MO told me also that hair might come and go during Taxol. I'm still having tastebud issues, too. I've gained weight though. It seems like things don't taste good, so I'm not satisfied when I eat so I just keep trying to find something that does taste good. My worst days have typically been Saturday and Sunday, but this past week, I felt ok on Saturday and Sunday, but not as good on Monday- Wednesday. So even among the same person, it looks like there might not be a set pattern.
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In addition to the L-glutamine and B6, I also ice my hands and feet during my taxol infusion. It is a bit of a hassle, but for me it is worth it to try and avoid the neuropathy. I do have occasional tingling in the feet and hands, but nothing severe.
I go for my final taxol tomorrow and as usual I am dreading it. I have never felt the same about taxol after the scary allergic reaction I had during treatment #2. I get a lot of aches and pains for about 5-6 days after the taxol.
Wishing all you ladies minimal side effects. We are all on a similar journey.
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Soteria205 - Paula, good luck today, I'll be thinking of you. Remember - only 12!
I went and bought the glutamine for the neuropathy yesterday. The info I go from the Dr was that it can treat a number of the side effects from Taxol including muscle and joint pain as well as diarrhea (which has never been an issue for me) and any mouth pain or sores.
As someone else said the glutamine is gritty but I added it to a scoop of protein powder and 5 oz of water in a blender. Not too terrible and I got some protein in me too. Bonus since that's such an issue with many of us.
Hugs to you,
Georgetta
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Georgetta~Thank you so much for thinking of me today. I must admit, I'm a bit nervous. I'm sure it's just the unknown. Everyone including my oncology nurse/practioner has told me, I will tolerate this better than AC, and I believe them. I think it's the first 2 treatments with all the extra drugs that scare me. But, I'm tough, and I will get through it.
My DH is taking me today for the first time. He took me to all my post surgery appointments, but then he was working, so my sister or son have always taken me to chemo. We are both readers, so he will have his book, I'll have mine, and we'll fight over who's turn it is to use the iPad. Good naturedly, of course.
Blessings
Paula0 -
good luck today Paula/Soteria. it should be fine!
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Patin~Thank you. I'm in the waiting room of the Stephanie Spielman Breast Center waiting for labs and to see the onc now.
I'll check in later to let you know how I do.
Blessings
Paula0 -
Paula, good luck today! I was worried yesterday that I was still going to be there when you came in
Relax and enjoy the Benadryl! Let us know how it goes. I have a cold, runny nose and cough. Ended up with an ekg and a chest x ray, all normal. Got a bag of fluids and a z pack. They finally let me have chemo at 2 yesterday afternoon. I got there at 9!
5 more taxols to go!
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Politico~I'm already high on Benadryl. Taxol hasn't started yet.
I'll check in later. DH is whining for the iPad.
Blessings
Paula0 -
Soteria205 ~ I think I'm just a little bit ahead of you in starting Taxol, but I want you to know that I feel MUCH better! My office is on the 5th floor and before starting chemo I started taking the stairs to try to build up some strength since I knew the chemo journey would be hard. I was able to do the stairs after AC #1 but never again after that. This week I did the stairs twice. It's harder than it was (for sure) but it is doable in a way that felt impossible for AC #2 - 4. Have hope! You may have a return of something resembling "normal" energy ~ at least in little bursts!
Be well.
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Nicole~That's great news! I've been home for about an hour. We stopped by Walmart to pick up a few things, and went to GNC to get the L-Glutamine. I mixed it in a tiny juice glass with cranberry/grape juice and drank it straight down. Not bad.
I had no reaction from taxol, just got loopy from the Benadryl. For about 15 minutes I couldn't make a complete sentence, but after that I was just very relaxed.
Going to go have an afternoon nap with DH. Then making Sloppy Joe from scratch.
Blessings
Paula0 -
Paula, way to go!
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Waiting,
I told her how fatigued I was two weeks before the last. The skin over my knuckles and rt hand got very red, itchy, dry, peeling a little painful. I thought Taxol. She didn't seem to know.
She gave me DEXAMETHASONE, a steriod, which I could take every day. I hate to take anything not absolutely necessary. I looked it up. Anti inflamatory but reduces immunity. I have been very worried about getting sick. Constantly wash or hand sanitizer. Away from crowds. Golden Corral gives me one of those gloves so I don't touch all the spoons everyone touches. No raw foods. So far not a cold, but I know after each Taxol I am a little or a lot low in wbc. If very low they would say to take Nepogen, but after the last--no blood test of course, so I took the first one today 10 days after the 12th.
Started to feel better yesterday. Walked once around a Walgreens. Still have tingling and tighting around neck and shoulders and hips, pressure and tingling on chest. Occasional bone pain on one leg. Bad taste in mouth and little appetite. That makes it sound bad, but I am feeling better. The plan is to try to go to a big box store and walk around increasing rounds by one a day. Am in TN for brief visit. Leave Sunny warm Florida with georgous yard to come here and now, cold, miserable weather with snoe. But lunch with 7 highschool friends today, and supper with cousin and friends tonight. I'm warm inside. We are going to feel better. They liked my wig, and we all looked great for 75-76.
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WaitingI wrote a long message for the second time tonight and was correcting spelling hen for the second time tonight the message disappeared. Will type message on e-mail from now on and cut and paste.Anyway, two weeks before my 12th Taxol I told the oncologist how fatigued I had been. No more steroid high the day and a half after. I also had a brilliant red inflammation over both knuckles and right hand, itchy, peeling, dry, a little painful. She didn't seem to connect it with the Taxol, but I never had it before and hadn't changed any soap or anything.She gave me a prescription for DEXAMETHASONE, a steroid I could take every day.I looked it up, anti inflammatory, but reduces immunity.A week after every Taxol when they would do the blood work before the next, my wbc would be below normal. About four times, low enough for a Nepogen the next day.I have been very fearful about getting sick. Constantly wash hands, use sanitizer, no crowds, no touching, nothing raw. Golden Corral gives me a glove when going down the food lines so I don't have to touch spoons every tine touches. So far, so good, but I'm taking no chances. Took first pill today, 9 days after 12 Taxol.I still have tingling and tightening in shoulders, around neck, on chess with pressure in hips. Bad taste in mouth. No appetite. I walked around a Walgreens once yesterday, and have a plan for the next 10 days to walk around a big box store, increasing a round a day. We will see.We left sunny, beautiful, warm Florida to come to hometown in Tennessee where it snowed today, cold, gray, miserable. BUT, had lunch with 7 high school friends and am having supper with cousin and friends. Think good looking 75-76 year olds having a lot of fun. May be cold outside, but I have a warm heart inside.Am getting good vibes for starting rads March 20.Am certain we will feel better as each day goers by. Keep us posted. Hugs0
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Soteria - glad your taxol went well. I had my final taxol and chemo today and it went well - took them almost 7 hours to get it in because of previous reaction - but all was good and I am finished chemo - I just can't believe it. I have taken the L-gluatamine all throughout taxol and I am convinced it has made a difference - I plan on keeping it up for about 6 weeks, since my MO told me that sometimes the neuropathy peaks 4 weeks post chemo!! Now I have only my neulasta shot to take tomorrow - are you taking neulast or neupogen?
cindy74 - how many weeks are you having "off" in between your chemo and radiation. My MO says it is usually 4 weeks, but I go for my CT imaging on March 5th and am just wondering how long it will be after that before I start the actual radiation. How was the CT scan for you? I have heard that it can be a bit uncomfortable because of the positioning. I also note that it is your left breast - did they teach you anything about the deep breathing to shift the heart out of the way? I would be concerned about taking the dexamethasone every day for a long period of time just because it does compromise our immune system and we cancer patients need all the help we can get in boosting our immune system. That is something that I want to focus on now that chemo is out of the way!
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My last chemo today and I am surprized that I still have my eyelashes and eyebrows - but have heard that they can fall out even after chemo. My hair is slowly reappearing as very short spikes but nothing I would call "hair" I think it will be a very long time with hats and wigs - at least a year I think.
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Adagio - congratulations on finishing chemo!
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I will take very few of the steroid for reason you said. I think the drs are pill happy.
Nothing about deep breathing and heart. Will ask Dr.
4 weeks between Taxol and rads. I went early for ct and positioning because I was leaving town for 4 weeks the day after last chemo. I have pet scan the day after first radiation and I;m a little nervous that they may find something. Never was before and cancer diagnosis came as a shock. Didn't think I had any risk factors. Three breast fed babies before 30. Good health habbits.
Turns out early birth control pills high in estrogen.
Doctor urged me to take hormones at menopause
"Great for the heart." "Good hearts run in the family. Several ancestors lived until 90."
"Stops hot flashes" "But that's the only time I feel warm."
"Helps prevent osteoporosis." There he had me. Mother had very bad. Several broken bones, Crippled.
Dr. said, "My mother is on them. My wife is on them. Women will be taking them the rest of their lives."
No, now there is research showing they cause my kind of cancer--estrogen receptive. So much for pills.
Wow, great to finish chemo.
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Soteria205 - Paula, I'm glad you're feeling well. If you're like many of us, you may be a little more fatigued for a couple of days. But it sure is alot easier than the AC.
Adagio - Congratulations. That's got to be a great feeling.
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Adagio: Congrats! Awesome!
I bounce between Jan. and Feb. boards but peek here because I will be starting Taxol (dose dense x4, every other week) in April. I have two more dreaded AC treatments. Ugh! It is nice to hear from so many of you that Taxol is easier! I will be doing B6 or 12 or both and L-glutamine powder. I already take it in a pill form and have been for over a year because I do alot of intense workouts so I'm hoping I have a head start!
Best to all and thanks for sharing!
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Hi Cindy--Looks like we are on the same timetable, beginning rads on 3/18. Some same SE's too. Still achy, but I notice it comes and goes. I'm sure hoping it is getting less and less as days go by. I am going out daily, stores, socializing, movies. I push myself even if I don't feel like going. My husband loves going out, now that I'm not laid up like during A/C treatments I want to go too. Doing some treadmill, but not every day. If we go into NYC, it's a big day with lots of walking, public trans, that covers my exercise. I agree, doctor's were prescribing hormone therapy for hot flashes pretty routinely. Glad to be done with chemo too!
adagio-I went for my CT scan last week. I was apprehensive about the whole thing, but it wasn't bad at all. It went much faster than I thought it would. Just hold yourself still on the table, it is not as bad as you think. Good luck with it!
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Adagio, congrats on finishing chemo!
Cindy.... I am only 33 so no hormone replacement for me, but both my mom (early menopause) and mil (she was on hrt for way too many years, like 10+) had breast cancer as well. My mom passed, but her dr. feel that her onset of bc was directly related, and my mil, well she is kooky, but her was slow growing. I guess the good news is that she has had NED for two years now.
I still have my cough, but I am feeling better finally.
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Cindy - what is a pet scan? And why do they do it? Did you find the imaging difficult with having the arms overhead? Do ask about the breathing technique - we have to protect our hearts. I am going on March 5th for the imaging, but I would like a 4 week break between chemo and rads - I wasn't quite sure if they would expect me to start rads pretty soon after the imaging.
I didn't take hrt precisely for the cancer reason and lo and behold I got cancer - go figure!
Georgetta - finishing chemo is a wonderful feeling indeed.
ywheels - I highly recommend the Bvitamins and L-glutamine - worked great for me. Do you take Nuelasta in between chemos? Taxol comes with its own side effects - very different from AC - most women find it easier.
Thanks for sharing - we are all in this journey together.
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Adagio, I'm a "leftie" too. They did my CT scans two ways - holding my breath and without holding my breath. They decided my heart was not in the way, so I didn't have to hold my breath during treatments. I met with the dosimetrist (who does the planning based on the scans and the RO's desired dosage) early on in my treatments, because I was concerned about radiation to the heart. It was fascinating - if you can, I would highly recommend that you meet with the dosimetrist. It reassured me that the radiation was missing the heart, except for a tiny bit. She showed me the scans overlaid with the radiation beams so I could see exactly where the radiation was going.
At another time during my weekly visit with the RO she pulled up my CT scan to check something, and told me that quite often the radiologist who looks at the CT scans finds "something" that doesn't look right or needs investigation, but there was nothing out of the ordinary in my scans. Since the scan covered me from neck to hips, I was very glad to have that information - I've had no other scans during this whole process except for a boob MRI, and I do worry about sneaky mets even though it's unlikely (I hope!).
I starts rads 4 weeks after the end of chemo, and the doc said that's pretty normal.
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