Weekly Taxol group
Comments
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PinkyWI - congratulations on finishing your taxol! And best of luck to you - I hope you feel better and better every day.
Thank you for all the info.. guess its time to start thinking about the taxol now. I am encouraged that most of you found it the slightest bit more tolerable than AC. I think I will switch to Thursday or Friday - that way hopefully only miss one day of work a week...
I'll read back through all the older posts on this thread here to get a better understanding of this neuropothy and how to handle it. Did your doctors tell you about the l-glutamine and B vitamins or was that something you find out about on this board?
I will be so glad to see the back of this AC... it is a tough one for sure. It's inspiring to hear your stories of how you moved past the AC and on to the next phase.
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Hi ladies
I do not post very often, but I am in week seven of twelve taxol treatments. I had A/C, 6 rounds but that was 12 years ago.
The taxol is not shrinking the lump in my armpit, but it is not getting bigger either! :-) so that is good. Only five more to go. Not a walk in the park but Taxol is MUCH easier than A/C.
My taxol side effects are getting easier as the weeks go by. I was pretty sick at first and the doc gave me neupogen for low whites. I inject myself on the third day after chemo, usually the day after the injection I feel awful but otherwise I am like the other ladies. Chemo thursday fine friday neupogen Sat yuck on Sunday then better until Thursday again. I have the bloody nose thing, go back and forth from constipation and diaherra, and the icky taste in my mouth. I have been drinking seltzer water or club soda and I love it. Anything to sweet is gross!
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Cindy
Last week I ended up having to wait over 3 1/2 hrs. to begin my weekly taxol infusion. Many of the patients were becoming irate due to the delays and long waits to even get started. Someone call the patient advocate. He went aroung to everyone and me. I gave my statement and told him this was about the 3rd or 4th time this happened. Now I have to go back tomorrow and every week. I am so afraid they will try to treat me badly, or cold shoulder, whispering etc. Were there any repercussions from you filing your complaint?
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OK I have a question to the ladies who have done the Taxol.
I had a hard time due to low whites the first couple of treatments. Then I seemed to get to a good place for several weeks, including over the holidays. My seventh treatment last week has been difficult due to fatigue and bone pain. I have not been very productive, I have done a bit of laundry and I have been making meals for myself, but otherwise I am too tired to do anything. I am kinda disappointed. I thought I might breeze thru. So the question is..... Is Taxol like A/C in the sense that the side effects are accumulative, meaning the fatigue will get worse as treatments go on? I have treatment again tomorrow. Thanks Karen
Waitingforthenextstep: Do not let anyone make you feel bad! You are under enough stress. This is the time to take care of you! (and u have not done anything wrong) :-)
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karenmarie1
Hey thanks, when I went to chemo yesterday everything was alright. I know I did nothing wrong, and I just dont want to be told I cant keep my scheduled appts. Now I know how to avoid it. As for the taxol, I personally did much worse on the A/C regimen. Nausea was allday and days after. The taxol I get weird tastes, achy legs, no nausea but I have emend now. Nothing as bad as the A/C though. hope it helps.
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That's a record for me. Longest wait time 1 and a half hours. This morning it was 30 minutes, but nurse Ratchet was trying to be friendly and helpful although I asked nicely for a pillow cover which never came. I also dont remember her ever taking my blood pressure. For the first time I drove there and home by myself because hubby had a conflicting appointment. I take an anxiety pill before going and I think they give me something for anxiety there. Onlyhave about 6 miles to drive on highway and street, so I made it home. Poor beautiful girl sitting next to me with her best friend was sooooo young. Also she has a young baby. She's in the Nov chem group. Don't know what the oncologist did with the letter or even if she read it. 4 men and one woman in practice. Waiting room crowded and full. I'm convinced the practice manager plans it that way. Friend told me she never had to wait more than 15 minutes at mAnderson. However, I don't think she likes the oncologist. and the previous one was from hell. 30 minutes is tolerable. more than an hour, uhhhhhnooop
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Karen, it's hard to get much done. Pay bills, out for lunch, minimal shopping. 10 minutes on the stationary bike once or twice a week and I'm ready to drop. Run up and down stairs three times, and I'm back to bed having trouble getting my breathe. I think it's cumulative. but six down.
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waiting times...is a four letter word in canada hospitals...
yes its "free" ... but heres one of the "SE " of free medical...
blood appt 8:15: am.. i go at 7am when they open.. i am usualy 1st to pass..
my blood tests take about an hour , which is incredibly fast here... regular blood tests take a week or more to get results usualy...
onc appt at 9:45... usualy dont see him till about 10: 30 which isnt bad really..
but.. once i see the doc... i can wait up to 3 hours to get called into treatment..
i usualy leave by 3pm....
an 8 hour day
As i type it out i realise its really not that long... when u consider average emergency waiting in this city is about 12 to 18 hours.
I am very blessed that all of this is "free" ... and the wait times... well.. i do have to learn patience lol
Just finished round 4 of taxol... and i find the symptoms are culmative... more tired then the last.. more nausea each time... pain, aches... and headaches omg drives me crazy betweeb day 5 and 7...
for me SE's arent better... just different
AC made me feel like a cement block was on top of me..
Taxol make me feel like im living in flu hell (tho nausea is less its still there just different)
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Yes I found the Taxol cummilative. I started them October 10th. By Thanksgiving I was tired. My last one was Dec.26th. I am two weeks out now. The nose bleeds stopped, and no sore throat. I still am tired, still have neuropathy,and nasty mouth.
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good to hear about the nose issue clearing up..
damned annoying... even the neti pot doesnt clear it up... tho it relives it for a time
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I go for my taxol tx ervery thursday. Thursday - i can't sleep Friday - energetic,
Sat - muscle pain symptoms appear Sun - full symptoms appear (muscle ache, bone pains, sleepy, the numbness of fingers + burning eyelids appeared from 9-12 cycle, 11 cycle - skin around thumb and 2nd fingers are scaling.), Monday - symptoms lingering, Tuesday - symptoms will subside, Wed - body is ok but felt weak and cycle goes on again.
By the way, its my last Taxol chemo today
)))) I am jumping for joy!@!!!!!!.
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yay pixie!! planning anything special?
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Sushi dinner lol after clearance from doctor
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oh yes!! me too...
my sis and i have this great all u can eat place... hehe
we stuffed ourselves the night before i started chemo and promised to come back
let me know how long you have to wait...
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i miss sashimi/sushi buffet. I never dig into it ever since from surgery. I do fear the infection that might be imparted from raw food.
but once my immunity has built up. I will dig into them like nobody's business.
Once I meet my doctor next week, i will message you her comments.
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ha! i like that!
fight like a girl!
thx
im so wired today... will get alot done before i crash tomorow...
hope everyone has a good day and if you cant . well... try flying away on a purple bubble... works for me
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My last taxol is today as well! Wahoo!!!!! Radiation in two weeks and herceptin continues every three weeks until July .... But no more chemo!!!!!!'
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Pixienel,
Horay! I know you are happy to ring that bell. If they do that where you go. It will be nice not to do chemo. I know because I do not miss it. Although I miss that deep sleep I'd get from the benedryl and ativan. My sleep scedule is still all messed up.
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Hi, I've been lurking here because I'm due to start biweekly taxol in less than 3 weeks and wanted to know what to expect.
I have had such lengthy SE from the AC, the worst of which is nausea that doesn't respond to any of the IV anti-nausea meds or the prescriptions after. In a 14 day cycle I have 4 days without nausea.
I met with the NP yesterday and she said nausea is less likely on taxol but I get bone and muscle achiness for some days after infusion.
Has anyone here had nausea with the taxol?
i have bone and muscle achiness a week after my Neulasta shot. Is the achiness I've read about here like that?
How bad is the fatigue?
I'm praying for a better experience than with the biweekly AC.
Because I'm triple negative I have no choice but be on the dose dense biweekly schedule of taxol but I hope I can be a part of your group.
Thanks, Peggy0 -
Peggy - I never had any nausea whatsoever from Taxol, but I had the weekly dose. I don't recall reading about anyone getting nausea from the bi-weekly dose either. So hopefully that will be one SE you will get rid of! I had very few problems with weekly taxol, but I did not have AC first. I have arthritic knees and hands, and I continued to take my tylenol and glucosamine/chondroitin throughout taxol - maybe that contributed to my lack of bone and muscle aches. Watch out for peripheral neuropathy, which I think is more likely with bi-weekly than weekly Taxol. Good luck, and I really think it will be much better than your AC has been!
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Thanks mareluna and congratulations Katherine24. Hi five, we are on the same track for the Taxol tx.
You are correct on the sleeping pattern, mareluna. Its very erratic making us tired. They say exercise can help.
After getting clearance from doctor, I can do leisure cycling again and enrol in a gym to perk up the muscles. I can't wait!
@PeggySull, i had my worst nausea in A/C 4th cycle. they have to inject metyl, oral Emend to stop my vomitting but it never worked. Landed me in the hospital due to dehydration. i remember whenever i stepped inside National Cancer Centre. The smell of the medicines made me puke. I really dread the feeling. I almost gave up at this point but the doctor is very stern. She said, " No! You have to continue. I'll just give you one week break. before your Taxol. I promised you the symptoms are much much to a lesser degree."
Indeed, Taxol is far better.
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Hi All,
It's great to hear that so many of you have found the taxol so easy. I am still looking for anyone who had problems with high blood pressure during weekly taxol infusion. It didn't happen until my seventh infusion, but now they want to put me on antihypertensives which scare me as I have always had severe reactions to bp drugs, so serious that I often ended up in the ER. I'm wondering if I have any other options at this point. I want to finish my taxol course, but the bp problems have me really freaked out. Any thoughts much appreciated.
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Kimber, is your BP high only while actually getting taxol? Are you checking it on the off days? How high is it? If it's consistently high maybe you need to try medication - but maybe see a cardiologist about it and make sure the doc knows about your adverse reactions. (I've been on BP meds for several years, and BP stayed normal through chemo.)
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Kimberly, I don't know if you have tried clonidine, a drug to lower bp. I do not have high bp with or without the chemo, but I was previously diagnosed with PTSD and it was prescribed for nightmares and works. It also helps with sleep in general.
Hope this helps.
Thanks Pixie and Patin for the reassurances about the taxol. I have my last dose of AC Monday and now am looking for a better nausea experience with the taxol.
Peggy0 -
I just finished my 9th taxol. I do not experience nausea at all with it. So different from ac. I love not having to take meds this round. I only take b6 for neuropathy. So far sensitive fingers but nothing major. They reduced my Benadryl to 25g and I'm doing fine with that. Not as dizzy and drowsy. Main symptoms are fatigue and yukky taste in mouth which comes n goes. The good thing about going weekly is it flies by. You do feel like you live there but before you know it you are halfway done!! Best wishes to all starting. You got this!!!! Low se's to all! Becki
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PeggySull-- my AC SE's sound just like yours. Guess its little late but I take Zertec twice a day for 5 days starting morning of my shot and have had no SE's from shot.
I too am TN but I am getting weekly Taxol. My oncologist says it is just as effective with less SE's. There are others in the TN forum getting weekly. I think it is a doctor's preference.
Finished my last AC yesterday -- thank goodness. I start Taxol in two weeks.0 -
Finished 6th taxol last Tuesday, 6 more to go. Woke up early(5am), couldn't get back to sleep and when I got up my legs are achy. Took some ibuprofin, up till now not too many SE's from the taxol. I guess the fatigue is less than the A/C, but it's still there. It sucks, you can be feeling fairly ok and then a bad day just pops up out of nowhere. sigh......
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Missed my first taxol yesterday due to the stomach bug. Starting next week.
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My bp was well controlled with diet and lifestyle for the past year. Even during treatment all was normal until this last (7th) taxol infusion when it just went crazy, low then high and has been high ever since. They do want me to take a bp drug, but I've had really bad side-effects from bp drugs in the past ending up in the ER many times from severe SE. This is why I'm reluctant to take any bp drug. But so far no one has given me any other options.
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Politico sorry you got the bug. Looks like a little break for you.
Kimber my BP ran low on taxol. My BP is always on the low side though. My chemo nurse would do additional BP checks on those chemo days I was running low BP.
Hoping things go well for you both.
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