Got a Little Cocky!!

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Fri, January 18, 2008

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Taxol, Tamaxofin, Paclitaxel, OOPS!...or…

Hi Everybody,

Sitting in infusion for my 5th round of Taxol (all ready had the 4 rounds AC). Got just a little cocky and paid the price. The Taxol just seemed so much easier to bear than the Adriamycin and Cytoxin that "Dr. Koponen" decided to stop taking the nausea medicine (don't like taking meds if I don't need to). Well, Friday night wasn't fun...the nausea wasn't as bad as it could get with the AC but still. Totally self inflicted!!! So - just a heads up - if it ain't broke - don't fix it...maybe one reason you're feeling better is the meds are working!?!? Duh!

I also understand what you all meant about the numbness and tingling in your feet...woke up Monday morning and felt like I had two wooden blocks at the end of my ankles....how incredibly uncomfortable! It got better as the week went on but I'm definitely keeping my eyes on that side effect - YUCK! I really felt like I was walking like a duck for a couple of days....not that I'm the picture of grace under normal circumstances but come on!

I'm a redhead today....brunette yesterday....still haven't found a blonde wig that looks good...my favorite is still the pink...wore it to infusion last week at the request of the nurses!

I've got to go through and read all the shareposts now to catch up with you all!

Take care!

Love,

Koponen

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Maria Gifford

1/20/08 11:19pm

Hi Koponen,

Did some self-doctoring, did you? Well, lessons learned -- sometimes the hard way -- but kudos to you for feeling brave enough to "go it" without the nausea medication, and for keeping such a positive attitude during "recovery!"

Keep writing...love hearing from you, especially about your pink wig (WAY better than any blonde, by the way!)

Best,

Maria

PJ Hamel

1/21/08 10:20pm

I guess next time you'll just take your medicine, young lady!I'm glad you're on the taxol, though - so much closer to being through.then you have the fun of watching your hair come back - a different color? Curly? Who knows. It's like your hair is saying, "Ah, a chance for a new life! What should I come back as...?" I knew one dark-haird woman whose hair came back BRIGHT blonde, and I mean bright. Maybe yours will come back pink, hmmm? Keep smiling, koponen... XXS PJH

Andrea

1/23/08 7:55pm

I have my first Taxol treatment next week. Thanks for the warning!

koponen

1/23/08 8:17pm

Hi Andrea,

Just wanted to give you another heads up...at my first treatment of Taxol and Herceptin they gave me a big IV shot of Benedryl in case of allergic reaction....it was like being drunk! I started slurring when I talked and basically passed out....hilarious...I had to have my husband come pick me up cause I couldn't drive. I've heard that that happens to some...one friend called it "DWI" - "drooling while infusing"...so, be prepared! Good luck and is it "congratulations"? on the Taxol?? That meant halfway through to me and was a very good thing!

Take Care,

Koponen

Andrea

1/23/08 8:26pm

Hi Koponen - thanks for another useful heads up. I live some distance away from the hospital so I usually plan to get a taxi. But I guess I should warn my friend who usually comes along for support! And yes, it is the halfway mark. Another good reminder, because the side effects of my first regimen (FEC) increased cumulatively as time went on and I've been feeling a bit sorry for myself.

By the way, you're lucky to have a choice of wigs you look good in - I discovered, alas, that I'm not one of those people who can wear lots of differerent colors and styles! And that I'm too conventional (or maybe just too old) to flaunt my bald head outside my own home.

All the best.

koponen

1/24/08 11:26am

Hi Andrea,

Hopefully you will find, as I have, that the Taxol is a little easier...yes, there are still side effects to deal with. But we're on the count down now!!

As far as wigs go...in all truth, I found it rather devastating to loose my hair. It is totally self protection for me to find humor in situations that are difficult. It helps me to handle things to confront them "head on" (forgive the pun!). It is 15 below outside right now where I live. Going around bald is not really an option for me. So I wear hats or wigs most of the time. I have made a joke out of the wigs, again, for me, humor works. I have my redhead-Tina Turner cut, my short brunette-Rod Stewart look, my long brunette-Connie Chung...my pink wig is just that - in your face - I am Woman I am Strong. As far as "looking good"? To be honest, I'm closer to 50 than 40...not sure anybody really looks good in a pink wig...but I usually get a positive response from people when I wear it and they ask me about it!

I'm not recommending that everyone go out and buy a pink wig...but I do recommend finding something that helps make you comfortable...go to a wig place and try some on...most places are very respectful of the situation and can give you privacy...or better yet...have them close early at the end of the day and bring friends and family in for a wig trying on party...that would be hilarious! Also, I went to wigs.com for great deals...otherwise I could never have afforded this! You might find something that works for you.

One pink wig -$35...the emotional return I get from it-priceless!

You take care and again...congratulations on being HALF WAY THROUGH!

Koponen

Andrea

1/24/08 6:54pm

Hi Koponen,

I have the opposite problem, weatherwise. I'm at the bottom of the world, in New Zealand, and we're in high summer. Air-conditioning in private homes isn't usual here because the heat isn't extreme, but it's still muggy and humid at night. So although I always assumed that I would keep my head covered at all times, sleeping in even one of my lightweight caps is out of the question, and I've had to get used to looking at my bald self. I don't go out bald though (much as I'd enjoy the shock value), as I'm also closer to 50 - in fact I'm on the other side of it.

I didn't find it as devastating as I expected to lose my hair. Partly, I think, because I don't have the greatest hair to begin with - in fact my wig is an improvement! Also, I know it will grow back. (Unlike my breast, alas.)

Thanks again for your good wishes.

Cressida

3/ 3/08 11:56am

Hi Kaponen,

Lucky you!You must've finished with your chemos by now,but I have to tell you that I love your sense of humour & that pink wig.

I've been through four rounds of AC,two of Taxol and two more to go.I definitely find the side effects of Taxol easier to tolerate,although the joint pain and tingling is a bit uncomfortable.What I can't stand is the stuff they give one to prevent a reaction.You're right about the 'drooly' part and the slurred speech.On my second infusion of Taxol I was amazed to find I needed to be taken down in a wheelchair. So I'm also half-way through? Will I ever be glad to see the last of the chemo bay on April 3,when I receive my fourth and last infusion of Taxol.All in all,God has been kind.All you ladies out there,keep smiling.It'll soon be over.

koponen

3/ 3/08 2:37pm

Hi Cressida,

Congratulations on being halfway through!!!! Excellent! I have one left and I cannot wait!!!

I am so ready to be done....it is kind of funny....it is probably a good thing I have to go in every three weeks for awhile yet with the Herceptin...I think I would miss everyone down in infusion too much!!

Hope things continue to go well with you!

Good Luck and take care,

Koponen (Sandy)

Cressida

3/ 4/08 2:00pm

Hi Sandy,

Thanks for the encouragement.I'll have to go through six weeks of radiotherapy after I'm done with the chemos.Here's hoping you get through the rest of your treatment smoothly.I bet you will because your attitude is so positive.It's wonderful to share our feelings with others.Makes us realize we aren't alone.All the best.

Cressida

koponen

3/ 5/08 11:21am

Hi Cressida,

Sharing our feelings does make a difference. I will absolutely state that there is no way I could have gotten through this so well without the support of the women on this website...

We are here for each other!!

Just take it one step at a time...

Take care!

Sandy (Koponen)

Cressida

3/ 8/08 3:10pm

Hi Sandy,

You are 100 % correct.This website has been a great support.It makes things so much easier when you know there are so many brave women facing the same fears,hope and excitement at eventually nearing the end of the journey...and looking forward to being totally free of chemos and radiotherapy.Most important,believing we'll get well and be able to join the band of numerous survivors for whom life will hold that much more meaning for having been given a chance to experience some more of it.I'll keep you all posted about myself and shall keep visiting your shareposts to learn of your progress. Big Smile

Cressida

skysblueandblack

7/28/11 8:18am

Hi All my nameis Karen and i live in Bucks County Pennsylvania - got stage 11B breast cancer - had 3 AC and cytoxan treatments one more to go then (4) taxols - I just started getting curious about the new drug Taxol and had to read up on it - I heard its "easier" than AC and hoped it was - and it sounds to be - AMEN - i HAVE BEEN SO SHELTERED since getting this cancer I wonder if i can resurface back into the world mentally as its taken a toll on me- anyone else feel this way?

PJ Hamel

7/28/11 9:38am

Hi Karen - Trust me, we ALL felt/feel that way during active treatment. It takes a toll on you - mentally, and physically, and emotionally. You experience hard times, but you also get to "feel the love" from your medical team, friends, and family. It is a kind of shelter, indeed.

Please check out our survivorship page; it has tons of links to great articles that'll help you figure out "the new normal," post-cancer. Healing takes time, and you can't rush it; but eventually, time DOES heal. You'll get there, you really will. And you'll realize that cancer has taught you a lot about life, including how to decide what's really important, how to let go of control, how to say thank you and ask for help - and just how very strong you are. Best of luck to you as you wind down with treatment and start heading towards good health! PJH

Phyllis Johnson

7/28/11 1:18pm

I found Taxol easier than AC, but, of course, everyone is different. I even worked during Taxol. Even though you are probably feeling exhausted and fragile, try to reach out to some of your friends and relatives to do some of the things you used to do, in small doses for right now. If you like your job and have the kind of employment that allows for part-time work, you might even look into going back to work. You will never be the same person you used to be, and for most of us that has its good aspects. I'm more empathetic with people who are in crisis than I used to be, and have a greater appreciation for life. I'm not suggesting that cancer is a good thing. I wish I hadn't had it, but I learned to deal with the hand life dealt me. You will learn to do the same as you begin to get your physical strength back after treatment. Hang in there!

Got a Little Cocky!!

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