Weekly Taxol group
Comments
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Peggy - I am getting my first dose dense taxol this Friday - I am quite scared about the bone and joint pain and the neuropathy - but I gather that not everyone gets these side effects - so let's hope for the best. I am also triple negative so that is why they hit it with all they can. I have heard that there are more side effects from the weekly dose than every two weeks - but have also read the opposite.
When do you get your first taxol?
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adagio
I am on the weekly taxol right now. Yesterday was my 7th one, 5 more to go. I did not experience any severe SE's from taxol. A few times I had achy legs, a few headaches. Nothing compared to the A/C protocol. I had very bad SE's from that one. Will you be going weekly or bi-weekly? Good look, hope you are well, no SE's.
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Adagio,
I'm really lookong forward to hearing how your first taxol on Friday. I start mine on Monday January 28.
Yes, every 2weeks dose dense is the standard protocol for triple negatives. I too have heard conflicting experiences about every week vs every 2 weeks. I'll be so relieved in any case if I'm not so nauseous for 8 days with each dose dense of the AC.
Monday when I had my last AC I had anticipatory nausea when we parked at the infusion center. I'm extremely nauseous right now but the Zofran hasn't had time to get thru my system to take the edgej off. Sunday night I had a real emotional meltdown. Much calmer now.
Good luck on Friday. I'll be looking for your posts.
Peggy0 -
Could you veterans of taxol tell me whether your MO prescribed anything for the muscle and bone pain that sometimes accompanies taxol. If so, what did they prescribe?
Thanks, Peggy0 -
My bone pain is controlled only by Tylenol. I am not allowed to take ibuprofen. It has done the job, but if the pain were more severe, I am sure that they can prescribe something. I think the weekly taxol is SOOOOOOO much easier than AC. No nausea whatsoever. Only mild joint pain, sore fingers, bad taste and fatigue for me. Having my 10th dose tomorrow. But still cannot wait to get done! Good luck to those starting. It seems like a long road(and it is) but you CAN do it! One week at a time!
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Happy to hear about everyone's positive experiences! I start tomorrow, 1 of 12. I was supposed to start last Thursday but I had the stomach flu. Praying these next twelve weeks go fast!
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Just had my second taxol on Monday. Fatigue, Bone pain and neuropathy are still around and my mouth sores are starting up again, but I agree with most people that it is way better then AC.
Clariten and diflucan are getting me through.
Blessings to all!0 -
just tylenol or sometimes I'll take one ibuprofin gel cap for the aches, both work pretty good.
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Hi,
I hope that all is going well. I am 3 weeks out now from the end of chemo. Saw my onc yesterday. She said there is no reason not to believe I am NED. She said I should be feeling better in the next 2 months. I am just aching all over, neuropathy, still daling with the nasty flavors. I am very slow moving still.
surgery is 3 weeks away...
have a good one.
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Did taxol #5 out of 12, today... even tho the Se's are "better"... i find this whole treatment is catching up on me...
Tired... achy... headaches... sore mouths... hungry/no appetite.....nausea...
I spend 95% of my time resting... bed or sofa..
i try to do some cooking to feel, productive...
but im so exhausted...
this is a tough road we are all on...
no "breaks" for the weary...
I have hide high WBC for 6 years now... average is 17..
for the first time they dropped to 10... even tho its still normal.. kinda worries me
my "soldiers" are getting tired.
My patience is wearing thin..fed up of being sick.. fed up of being tired ...fed up of being fed up...
i;m counting the days...im watching the calendar..
I know theres a light at the end of this tunnel....
im right in the middle of the tunnel and its dark... and creppy..and dammit im scared.
but, it is so...empowering, to know, im not alone in here...
sorry if my mood is melancholy ..maybe i need chocolte.. or sex..or both...
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Celine,
Yes I got exhausted about half way through the 12. It is cummilative. I counted down too.My last one was Dec.26th. I no longer have the mouth sores or nose bleeds, or sore throat. Ask for Miracle Mouth wash like they use in rad. it really helped mouth sores to swish and swallow. Not too bad tasting. Oh the steroids made me eat. I gained weight. Food tasted crappy but I still ate. Good luck to you.
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Mfml- I did 4 AC and 12 taxol. I am now 26/28 radiation treatments. I did my chemo treatments on Wednesdays--I am a school teacher and went on long term disability, so the day didn't matter for work purposes. Taxol was sooooo much better than AC. Actually the further away from AC I got, the better I felt. Because of the decadron (steroid) I literally could not sleep on Wednesdays. You could give me all the Ativan in the world, and I would still be up. Wednesday and Thursday were "wired" days for me. I didn't have any SEs. I found Taxol to be very easy. I did gain an extra 6 pounds during the last 3 taxols. Taxol completely took my eyebrows and eyelashes and they started returning on Taxol #7. I thought losing eyebrows and eyelashes were almost as bad as losing my hair. My face was so bloated...I would pass a mirror and think "who is that person?" Happy to say I got my eyebrows threaded(I didn't want to wax) yesterday, they grew back very quickly. My last chemo was Nov. 20th. The trick to Taxol is keeping yourself warm. No extreme cold/hot for feet or hands. I have slippers outside bathroom so my feet don't hit the cold floor in the middle of the night. I used Sally Hansen "Hard As Nails " and my nails did great. Radiation is fine. I used Aquaphor/Miaderm and pure Aloe gel in the refrigerator. All the technicians say my skin looks great. It's a crazy road but we will all make it...Hugs to all
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Madelyn.
Where are you getting radiation? Have you started tamoxifen? Do you feel more or less tired now on rads? I have three taxol left. Can't wait for the break in February. Hope my energy comes back!! Tired if bring tired!!0 -
Timbek,
I live in Loudoun County, Virginia. I go to INOVA Loudoun Hospital for my Radiation. All of my doctors have been there (except reconstructive plastic surgeon). Due to my mom's complications with blood clots, my MO suggested lupron shots and then Femara. I am 44 and perimenupausal. I was tired the first two weeks of rads. I had no skin problems. Today is my 27th treatment. Tomorrow is my last one and my first day back at work. I used Miaderm/Aquaphor/Aloe gel. I thought the last three taxols were weird--meaning I seemed to get really puffy and I gained 5 out of nowhere. All in all I gained 15 on chemo. I started at 135, now I'm closing in on 150. Before I started Rad my MO said," I'll see you in two weeks after you complete rads and you will be happy I gave you those two weeks." I guess that was her way of telling me I will be tired. I have read that most people feel tired two weeks after starting and two after ending rads. Right now I feel good....
FATIGUE and BEING TIRED are strange things. You need to learn the difference- if you can. Fatigue is the biggest SE of radiation. It doesn't matter how much you rest you get--if you are fatigued, you feel beat. You just have to let your body heal and stay off your feet, until more energy comes back. It is kind of like jet-lag. Now being TIRED can be from not enough rest or maybe TOO MUCH. Some days I just didn't want to get out of bed. Other days I had to get kids ready for school, etc. The days I made myself get up I eventually felt better. My advice is to rest and don't overdo, HOWEVER, if you could just get up and get those legs moving you will feel better. I noticed my legs hurt more after being in bed a lot. I have only felt fatigued the first week of rads.
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Madelyn~Thanks so much for sharing. I get #3 AC tomorrow. My last one is Feb. 8. Then on to 12 weekly taxol, followed by rads. Not sure how many.
I have Aquaphor and had been wondering about aloe gel. I used to always keep it in the fridge for cooking burns and such. Did you use it immediately after treatments? Did you use it along with he Aquaphor? I want details I guess.
Blessings
Paula0 -
Adagio, I get my first taxol on January 28. So so sick from this last AC.
Looking forward to hearing about your taxol tomorrow and any aftermath. Hope no SEs. Many don't seem to have them so maybe we'll land in that lucky boat.
Peggy0 -
Peggy - I will let you know how it goes - I am anxious switching drugs and discovering different side effects. I worry about the allergic reaction although my oncologist said it is quite rare. I am starting on an 80% dose because my body is so very sensitive to the chemo. The onc said she will reduce it accordingly depending on my side effects.
We are all in this boat together and somehow we will get through it, but it is a slow, tedious journey and there is no break from it.
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I had my first Taxol today. One down eleven to go. Benadryi, Steroids. and Pepcid as premeds. Nothing at home. Benadryl made me feel weird, fuzzy, and I eventually dosed for bit. Steroids by IV caused burning down below.... what and odd sensation. Nurse told me it was possible, and backed off when I told her it was happening. Was a little nasueos on the way home, but I think it was do to hunger. Took a two hour nap when we go home. Feeling a little groggy this evening, but not bad!
Also me with the Plastic Surgeon, gave me the news I knew he would, still not what I wanted to hear. Lots of decisions to make about reconstruction.
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I remember my first Taxol! I remember the nurses lining up medications just in case I had a reaction. Thank God I didn't -most don't. Taxol was worlds better than AC. For some reason I thought AC #3 was the worst. Maybe because #4 is the last and you're so happy to get it over with. Taxol is funny. As soon as the benedryl hits you get very sleepy...as the steroids go in, my leg would get very restless. Sometimes I would doze off sometimes I would stay awake. I always wondered how people could possibly drive themselves home after taxol...I hope no one has to! I had treatments on Wednesdays and I would be up ALL night. I would finally get sleep Thursday night. There is no "Down" day like there is with AC. Some people get mouth sores...I didn't but I hear biotene is a great rinse to use a couple times a day. Your taste will still be off but nothing like the "I'm ready to gag on my salivia" feeling you get with AC. You will be able to enjoy food, but some things will taste slightly off.
I thought Taxol 1-6 were good but I did lose my eyelashes and eyebrows around Taxol #4. Around Taxol #7 my hair started coming back. However I thought the last 3 were hard because of bloating. My hands felt puffy but no pain. My last Taxol was Nov 20th. I had my port removed Nov 21st. I started rads on Dec 11th. I use Miaderm after my treatment and use Aquaphor before bed with a big t-shirt. Now that I'm a little red I use the aloe gel which does a great job. My last rad treatment is tomorrow-it all went by so quickly!
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Politico,
I hope you have a good night. During my taxols the benedryl would make my lower back and legs get restless. I'd be moving them all over. I would be dopey cuz I'd take ativan pre chemo because acessing the port was stressing. So I'd eventually grin and nap. I'd get home and use the nausea suppository and go to bed for a sound 3 hour nap. Get up and eat a light dinner. Something like Jello an a bowl of soup. When I went to bed I would wake up choking I guess reflux. But it would happen one time each chemo.
My chemos were on wed. Thursday I felt good. But I'd not sleep well i'd get 4 hours sleep. Friday was crash day and another 4 hour sleep night. Sweet dreams tonight.
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Madelyn~I so appreciate all your input. Did you have any problem with your nails? Did you ice them? I have a friend who got Carboplatin, taxetere, and Herceptin. Her onc told her to use Tea Tree Oil on her nails. I'd like to try that, but I'll see what my onc says first.
Blessings
Paula0 -
I had no problems with my nails...except for a tiny black spot on a toenail. I used Sally Hansen Hard as Nails and used it every couple of days. I was very pleased not to have any issues. The tiny spot is growing out and all is good. I've heard of the icing--I chose not to do it. I was happy with my outcome. I'm sure Tea Tree oil would be good, just ask first. Taxol is so DRYING...everywhere...please-- don't get me started!!!
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Madelyn
I am on a similar regimen to you. I did 4 A/C treatments, biweekly. SE's horrific. I am now on my 7 of 12 taxols. No major SE's from the taxol. Likewise the decadron keeps me awake on chemo day, and I feel the effects days later. How is your hair growth progressing? My hair is starting to come in a little. I wish I had more of an idea how long it will take to grow back. While I see some hair coming in, my head still looks bald. I want to know when the volume returns. I know I'm obsessed, but I can't help it. If I can't go here with it, where can I go? Any input appreciated.
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Madelyn-
I meant to ask where on your body are you getting rads? I'm sure I will have under the arm but do they radiate your breast and clavicle area also? I've already got my implants in and worry about that side tightening up from the rads. Have you had issues with range of motion at all while on rads? Thanks for all your help!
Becki
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Timbek- I received radiation on lower clavicle, right breast, under arm and below breast near drain site. I have had no issues with range of motion. I had 10 lymph nodes removed, I never did any Physical therapy, I have had no problem with Lymphodema. I've been very lucky. Your hand might tingle a little bit holding it over your head while you lie on the table for 15 minutes...it goes away when you get up. My plastic surgeon filled up my radiation breast with an extra 70cc before I started. I hope to have my Tissue Expanders out in 3 months. The radiation was very easy, the hardest part was driving there everyday! Today was my last day wooo-hoo!
Let me know if you have any more questions!
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Dear Waiting...
First of all, my profile may say Leesburg, VA but I am originally from Jericho, Long Island. So do you want to talk about hair or what!!! I understand completely about your concern. My hair is a huge issue for me, but I am happy with the progress! I went home for Christmas and I had to pencil in my eyebrows...less than a month later, I have eyebrows. I had them threaded 3 days ago. My eyelashes are coming back too. I finished my Taxol on November 20th. I am 8 weeks PFC. I have about an inch all over my head. It is getting thicker as it grows. I remember watching videos on Youtube on how women documented their hair growth after chemo. It really helps watching these trust me! I went to my hair salon and there is a girl who specializes in Great Length Hair extensions....she said I needed four inches for it to look right. So I have a big Italian wedding in NYC on May 18th at Gotham Hall and I hope to be back to my old self or pretty damn near close...extensions and all.
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Madelyn~You Go Girl! Rock that wedding!!!
I'm so grateful for all the info and advice you share with us newbies or as in my case Soon to Be's. I had AC #3 of 4 today. I asked about what they would have me do for my nails once I start taxol. They said, whatever makes me feel better about it. They don't promote icing them. But, they're ok with it if that's what you want. NO THANKS!
Paula0 -
Thanks Madelyn! I love the idea of extensions! That is great info to know! I am depressed to think of sporting a boy cut. Just can't do it. Actually going to get a new longer wig tomorrow. I'm just not into NO hair for sure and SHORT. UGH. I may be 40 but I'm not an old lady yet. If my hair comes in all granny curly like a fro I will have it straightened for sure! OK, enough of my hair venting for now. Thanks again for the tips!
Becki
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You guys are a great bunch ...real fighters I can tell ...some of you aren't on Taxol yet but are asking about radiation. I love your spirit! Like I said, I believe AC #3 is the hardest. I had treatments on Wednesdays, so rest of Wednesday was fine-- Thurs was fine and then Fri was the down day. At first I would be okay by Saturday afternoon and then by #3 it would take longer to recover. I remember the taste in my mouth. Having to chew gum because my own saliva tasted bad. Water tasted like crap. I would make my own drink to stay hydrated....it was 1/2 water, 1/4 cranberry juice and 1/4 gatorade. This was the only way I could get fluids in. I remember craving bagels. I love coffee and all of a sudden I couldn't stand the smell or taste. AC gave me that moving in half speed feeling. I would rinse with Biotene when I thought about it...but I never had mouth sores. I would take a senekot tablet before treatment because everything from Ativan to Zofran constipated me.
Taxol was a welcome surprise...even though they say it is easier -you are still nervous, you don't know if you are going to be one of the few that has a reaction. If you do have a reaction they counteract it immediately. I remember the glamorous port. I would put the cream on 2 hours before and Never had a problem. By the time the benedryll bag was empty I was slurring my words and when I tried to close my eyes, my left leg would twitch. Taxol took my eyebrows and eyelashes which was a second blow to the system I didn't think that I would feel so down about that. You hear that there is a 50-50 chance you will not loose them and you hope for the best but by Taxol 5 they are almost gone except for a couple of stragglers. Taxol 1-6 were great, actually the further away from AC I got the better I felt. Taxol 7 hair comes back. Taxol 8-12 feel bloated and tired. I truly believe Sally Hansen hard as nails helped save my nails!
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Two days post weekly Taxol and still feeling good. Not sure if it is because I had the extra week to recover from the fourth AC or just how it is going to be. One more next week with all the pre meds and if no reaction no more pre meds. Did anyone else have the stinging down there from the iv steroids? She warned me, but it was still a little shock.
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