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Please, List Your Side Effects - Taxol

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

I would so very much appreciate it that those of you who did Taxol as a solo drug to list your side effects.

Abraxane is out (for now).   I did call the oncologist office and the nurse return my phone call with the message about insurance.  

Every time I think about my decision, I think it might be easier to slide out, then I right myself up again and wonder when I've become a whimp.  

Doris

 

 

 

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

I'll bet you are not a wimp!  But we all get tired - that's for sure!

I am on Taxol alone with the exception of round 1 when I also had Zometa.  After round one, on day 2 I was miserable with flu like symptoms.  That whole week was rough but it was the only one like that.  I get another Zometa with my Taxol this Friday and I'm kinda wondering if it will be like week one.

I have had 6 weekly infusions of Taxol (Paclitaxel actually) at this point.

Hair loss of course

Neuropathy in the ball of my left foot and fingertips  (metaNX helped push that back)

by week 6, my knee felts a little fuzzy

Tired

Crampy feelings in my left calf, pelvis (not too bad at all but worth mentioning)

Irratablility (for some reason I am sicker than usual of people asking me how I'm doing)

That's about it.  I have had a couple mild bouts of nausea, a couple of headaches.

 I'm thinking I'll feel better when this is over and maybe it will buy me another pretty good year or two.  Maybe I'll get to see my oldest graduate if I don't kill him first :)  JK - he's a great kid when he's sleeping!

Personally, I'd like for you to stick around!  I enjoy reading your posts and have benefitted greatly from your wisdom and advice :)

Marty

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Hi Marty,

I hope you hang around more than a few years and are there for your oldest son's graduation.   

Your post is very helpful, I know I could go in archives on the various boards I read but I wanted just enough information from real people but not overwhelming.  I thought this way would be easier.

You have had a time of it yourself.  Probably it was the zometa that gave you the flu like symptoms.  

How long will you be on it?  I figured for me until it fails.  

Hair loss, all at once or gradually.  I thought she told me gradually.  Can't believe that I vain about the hair business.  I do have my old wig from '94 which I never wore as I didn't loose my hair.

Thank you again.

Best,

Doris

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

I am supposed to be on it until it fails too.  My hair just started letting go and instead of following myself around with a vacuum, I just had it shaved off.  Maybe this time you won't loose your hair just like last time!  That would be great!  Still scarves are MUCH more comfortable than those itchy wigs, especially in the summer!

I think it is better to get info from people who are currently doing what you are thinking of because things change so fast! 

I'm glad I could help a little!  You do so much for us!

Marty

desertgirl947's picture
desertgirl947
Posts: 419
Joined: Oct 2012

After four infusions of adriamycin and cytoxan, I had four of taxol.  The day I started taxol, the nurse told me that I could have a reaction to it and that if I did, I was to ring my bell.  Usually the reaction happens within the first 10 minutes.  She had a kit there in my small room for in case I had a problem.  She kept a good eye on me the first time.  I did not have a reaction until the last two times.  Because of the discussion we had had, I knew that was happening, as when it happens, the nurse comes in and shuts the infusion off immmediately.  My symptoms:  aching in my lower back, my face felt hot, my sister-in-law who was with me both times said that my face was quickly turning red.  She went right out to get a nurse's attention and tell her what was going on.  I was given a bag of benadryl.  The infusion was resumed.  Since I had no further reaction, I was able to complete #3.  For #4, the nurses had thought that if they were pro-active with the benadryl, I should get through #4 without a problem.  Wrong.  Because I had already had an extra dose of benadryl, they used demerol (or some other relaxant).  Then when they resumed the taxol, they started it out at a slower drip rate to see how that went.  Then after about 15 minutes, they increased it a little more.  The goal was for me to finish, as this was my final chemo infusion, if all went well.

I had not lost my eyebrows or lashes -- or nose hairs -- until I was on the taxol.

My neuropathy has been minimal, in that I just had (still do) some numbness in my two little toes on one foot.  That's better than a lot have.

I had peely skin on my feet, generally around the edges of the heels, the sides opposite the arches, and around my toes.  I kept those lubed with lotion, as I did not want to develop cracks.

My skin got a bit rough and dark on the side of one foot up to the ankle bone.  That cleared up when I finished taxol.

I developed a pesky cough that last until about three weeks after I finished chemo.  It was difficult for me to take deep breaths, which was manageable if I did not do anything that would get me winded.  My lungs were clear, as they were checked every time I had chemo.

I had two times when the pesky cough became more gut-wretching, which was a problem because I could not take deep breaths.  It was somewhat debilitating.  My oncologist had me take an allergy pill (i.e. Clariton) as well as musinex.  I had relief within 24 hours.

Some will say that their bones and joints are affected; but I am not sure if it was the taxol or my Neulasta shot.  I did not have to take the shot after my last infusion, and that weekend, I did not have the achiness in my legs and joints that I had had.

I think that about covers it all, as far as side effects I had.

Hope this helps.  I also hope others respond, as effects can vary.

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Thank you Desertgirl for the information.  They did tell me about watching for a reaction but not a word that it could happen later.

To know that this is possibilities is great information.  I will be going to my much smaller center after next week.  Glad that your sister-in-law was with you and perhaps I will stay in the larger infusion room instead of asking for one of those little rooms.  I thought it might be nice to sit quietly and read without distraction.  I will really think about the larger area instead.

Hope you are finish with all your treatments and getting back to a new normal as they say.

Thank you again for sharing,

Doris

PS:  I love your avatar

desertgirl947's picture
desertgirl947
Posts: 419
Joined: Oct 2012

I finished chemo July 16, 2012.  I finished rads September 26, 2012.  I am generally back to a normal life.

For some reason, I tended to not always be the "norm."  To have a reaction later on apparently is not common, but it can happen.  It caught me by surprise, but I knew that was what was happening both times.

I liked being in the smaller rooms, as I had a small tv I could watch (HGTV, of course) plus it worked out well for me and whoever was with me to be able to just chat away the time. I can see your wanting to be where they can come to your rescue quickly, if you have a reaction.

I think I forgot to mention that the nasty cough ended when chemo ended.  I was pro-active after that final chemo with the allergy medicine and musinex, going by the pattern of the two times before.  I had no problems at all.  So, that problem was gone before the pesky cough was.  I am not quite sure when it was that I was no longer bothered by taking deep breaths.

A year ago today I had my surgery.  For the present time, I am winning in the battle.

e

CypressCynthia's picture
CypressCynthia
Posts: 3954
Joined: Oct 2009

No way that you are a wimp!  You are one of the strongest women I know and an inspiration to us all!  I am so sorry that you are facing this and I am sending you huge (((cyberhugs))) and praying for you.

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Here I am ( actually will be 18 1/2 years on March 16th) and suddenly, I feel like the journey is starting all over.  I am learning to not ever say,  "I'll never do something" because it always comes back and bites you.  All this time, I said, when the day comes and they suggest "chemo", I'll go home and hang up my hat".  Of course, I don't even own a hat.  That should have been my first clue.  It's not time for me to hang it up, I have to buy a hat first.  

My old wig is brown with hints of auburn.  I never used it.  I haven't had that color hair in years and if I suddenly wear it people might wonder.   I like those hats people wear and might buy one instead of a wig.  

I met my favorite surgeon's partner today.  My favorite is on a Medical Mission.  He mentioned something about I might need a power port so they could inject the contrast dye into it.  That will be one of the perks.  It's like deja vu, or maybe Groundhog Day.  Didn't get it right the first time, so I have to repeat it.  

I'll take the hugs and prayers, I do need them this time around.  Thank you,

Doris

PS:  They gave me Advair and a inhaler but the wheezing goes on as does the dry cough and sob.  

CypressCynthia's picture
CypressCynthia
Posts: 3954
Joined: Oct 2009

Oh Doris, I am so very sorry.  I wish I could jump through cyberspace and give you a big hug!  Hang in there and kick cancer's butt!

New Flower
Posts: 3989
Joined: Aug 2009

Hi Doris,

I am sorry that you are going to undergo Chemo second time around. Everyone who has ever had to do it understand your feelings: horror, sadness, and shock. It is very hard accepting this reality and we all know it. I still remember when my oncologisttold me in June that she considered Chemo is the best choice for me. I was speachless,  everything was spining around me. What  could I do?  Anyway, since you have not had taxane therapy  Taxol should work for you.

I have had Taxotere, which is another taxane drug, no advice from me except Please reach out for help around the house, for driving you to and from Chemo infusions and on Friday for your port surgery. You can do it, We will help.

Hats, please PM your address I will send you Donna's hats

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Thank you I have sent you a PM with my address.

Doris

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Your right CC, I will be thinking mean thoughts and sending silent messages to the drug to wipe out those renegade cells and all their palls,  They are receiving their eviction notice.

I am feeling better, getting use to the idea that it is what it is and I will do what I need to do as Claudia has said.

 

Doris

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

Doris:

First let me say that I am confident you can do this.  It's normal to question whether or not you want to but you've been fighting this battle for so long that I know you aren't the kind of person to not at least try.

Now, about the hat or wig..........I have two wigs and definitely prefer hats.  I only cover my head when I go shopping or out to eat (or when I'm cold).  If you are out in public and you suddenly get one of those "personal heat waves", it draws less attention if you suddenly pull a hat off your head than if you suddenly pull your hair off. 

I'm wishing you the best and sending you lots of hugs!!!

Jamie

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Thank you my friend, I did laugh about it being better to pull your hat off your head than your hair.  I can imagine that being really funny at my job.

Hoping your doing ok, I know it been a long haul for you.

My port-a-cath is in.   I'll never have to search for a good RN or tech to search again for one of my elusive veins.

There is always a silver lining in a dark cloud. Smile

Best to you as always,

Doris

Heretoserve's picture
Heretoserve
Posts: 1
Joined: Feb 2013

Hello I had taxol for the whole 12 wks.

 

This was back in late 2010.

Everyones side effects are different.

With me, I had really bad acid reflux, I had to take Prilosec everyday until my treatment ended.

I had nose bleed when I blew my nose, this ended shortly after treatment ended.

I had joints that ached. This took 8 months after treatment to go away.

I had a little tingling in my feet, but this subsided after treatment ended.

I had bad leg/foot cramps a good 8-9 months after treatment.  Getting the toxins out of my body took longer than I expected. I was an active 44 year female, so I thought I could just get back into running, it was a lesson I had to learn about patience.Cool  I feel great now....

 

Good luck hope this helps.

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Thank you for your response.  I am keeping the side effects on a list so I know when it something that is on it and don't need to fret.

I am getting use to the idea of it all.  Think I've spent half my day on here.  Nervous, not even sure why, having the port put in.  Here was something else I once promise myself, no more OR's Ever and here I am almost 4 1/2 years after the VATS biopsy going back again.  I'm late in the day and that tell me how important I am.  If it's really serious, the OR schedules you first and then it goes down to 2 PM in the afternoon.  Routine.

By Wednesday I will be fine with it all.  It just so hard to accept when I did say "never" and then said, ok, when?  

I do hope you are back running and cycling and back to the "new normal".  I remember starting to walk after it was all over and my port was out.  Having the port out was a piece of cake as that afternoon, I began my walks again.  At one time I did 3-4 miles a day.  If the weather was bad, it was 2-3 miles.  I sure do miss those days.  People in the post office would always say "hi" to me as if they knew me.  It took me years to figure out, to them, I was the lady on the road that was always walking.  They would wave and even though I didn't know them, I always wave back.

Wishing you the best,

Doris

 

mom62
Posts: 600
Joined: Mar 2004

Hi Doris,

I am sorry to hear that you need to have chemo.  It is a womans right to change her mind, trust me you are not a wimp.  I just wanted to tell you I see more life and humor in your posts than I ever have the whole time you have been on here.  I think changing your mind has had a positive effect on you as you realize the strength that you have.  Back in 1993, I did four A/C and 4 Taxol.  I have rhumatoid arthritis.  The Taxol created extreme musle and joint pain for me.  I think having the rhmatoid arthritis was why mine was extreme.  I did get the numb toes and fingers but it went away a month or two after chemo.  I lost my hair but shaved it when it started falling out during my A/C.  In the two times I have done chemo I lost my hair both times right after the second infusion (had 8 rounds of Taxotere in 2009).  I hope your port goes in well and the chemotherapy too.  We are all here to support you!

 

Terry

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Thank you Terry.  I forgot that a woman always reserves the right to change her mind.  I am getting use to the idea as the days go by.  It is what it is.  I am sorry for your rheumatoid arthritis, autoimmune disease are almost as bad as stage IV cancer.  They are a real nuisance as I have 2 of them (uveitis and inverse psoriasis).  I believe they are both under control but when I say that, "whoop, one starts up again" just to annoy me.  

The internet this time around will be such a blessing.  The first time, I just didn't know what was normal, what was a side effect.  One morning, I went to work and my eyes kept running.  Turned out to be a side effect but I thought I was coming down with a cold.  I worried as I was told to stay away from sick people.  Here I was, working among them.   You were there in those days without all the information  available today too.  

I have a lot of osteoarthritis along with bone & joint pain from the years on hormonal drugs.  I decided you can't worry about what might and might not happen until it does.  It is just nice to know and if I have something, I can check my list I am compiling and just say, "well, it's a side effect, deal with it".  

Thank you for the support, I really do appreciate it.

Best to you,

Doris

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