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Posted 1/26/2007 10:41 AM (GMT 0)
Hello- I have just started taxotere - yesterday.  My tumor was 9.5 x 7 X 9cm - extremely large.  I had 4 rounds of chemo [red devil] which shrunk my tumor to 1.5cm that was successfully removed along with 16 lymph nodes on December 28, 2007.  I had no trouble with the first round of chemo - only the neulasta shots caused me some pain in my pelvic bones which was alleviated by a tylenol.

I am interested in hearing from everyone with a positive experience using taxotere.  My only child is getting married next month and moving away so i am trying very hard to keep my attitude positive [no hair, no eyelashes, weight gain, etc.] to get through this successfully.

I look forward to hearing from you!

OKblessed

Posted 1/26/2007 4:52 PM (GMT 0)
Good Morning OK! I am glad that you found us. Sounds like the chemo worked very well for you. I had the same chemo and, to this day, I still can't stand to see anything that color red. Makes me sick to my stomach.

I had taxol after my chemo was finished. I don't know if that is the same drug, different name, or not. The only problem that I encountered from the Taxol was muscle and joint aches. Hot baths and meds helped.

My youngest dd graduated from college 2 days after I had my mast and was married 4 weeks later. I understand how you are feeling right now. I had expressed my feeling to my dd and she told me that she didn't care if I was bald or wearing a wig...eyelashes or not...she was just glad that I was alive and able to be there. You might ask your onco if you could skip a treatment before the wedding. I doubt that it would hurt anything and it might make you feel better not only physically but mentally. Go to your beautician and have her get your wig and makeup done for the wedding. (and the rehearsal dinner, etc) Pamper yourself. Most important, enjoy the festivities.

Gentle hugs....Deb

Posted 1/27/2007 11:41 AM (GMT 0)

Hello OKblessed.   You're a bit ahead of me.  I have just started on FEC and my oncologist is probably going to change it to taxotere halfway through i.e. I shall be having 3 x FEC and 3 x taxotere. 

I'm also trying to keep thinking positive and to keep myself looking as nice as possible.  I haven't lost any hair yet - apparently it happens about 3 weeks after the first session of FEC - but I have bought a really lovely wig and some nice hats in readiness.   I have also just ordered some false eyelashes - not at all sure that I shall be able to use them successfully but at least they will give me and my friends a good laugh.  tongue    Would false lashes also be an option for you OKblessed ?

Here in the  UK some people have had semi permanent eyebrow tattoos done.   Are those available in the USA? 

I wish you lots of luck with the wedding OKblessed.  I'm sure your family will be very proud of  you.  Take care

Anthi

Posted 1/27/2007 12:08 PM (GMT 0)
Hi - one suggestion - if you have thick hair - don't shave it like i did.  I cut mine short 3-4 inches at first and it does shed but had I not had it shaved I think I would still have tons of hair.

Yes, I think I am going to try some false eyelashes - only difference is there is nothing for them to 'rest' on like when you put them over your normal lashes.  When I am wearing good eye makeup people don't seem to notice the lack of lashes as much.  My biggest issue is the steroids and how round I look - especially my face.

We can all get through this!  At home I wear scarves and only wear my wig to work and 'out' - no matter how loosely woven mine is hot.  I bought a Toni Brattin wig and it is the best of the 7-8 that I have because it is so soft. My head is very sore - from the chemo I think.  Also your cuticles and skin become extremely dry.  I soak my feet in epsom salts water with some baby oil all most everynight and exfoliate.  I put baby oil in a pump spray bottle and soak myself down after the shower.  I also have a hot parafin wax bath that I use on my hands and feet.  I was using Bare Minerals but had to stop because my face is sooooo dry despite masks and moisturizers.

Last night I went shopping at the Asian grocery store for healthy veggies to make soup - the most important thing you can do is try and flush the toxins [chemo drugs] from your body.

Please keep in touch and share ideas!

OKblessed

Posted 1/27/2007 7:10 PM (GMT 0)

Hello again and thanks for the tip.  No I certainly shall not be shaving my head - I shall wait and see what happens.  In fact I eventually decided to use the 'cold cap' scalp cooling system during my chemo - most people here seem to try that nowadays.  The nurses tell me that it works differently for everyone and that some people still lose all their hair,  but they say that because my hair is quite thick and strong I may end up with just rather thin hair rather than losing it all. 

I've also started getting very dry skin and have started putting oil in my bath at night - thanks for the other ideas too.

What I forgot to say when I posted earlier is that although I have no experience yet of the side effects of taxotere, I have read some extremely positive things about its results.  Studies have shown it to be very effective so despite any bad side effects it's a good drug for us to have.

Yes - we can all get through this.

Take care and good luck.

Anthi

Posted 1/27/2007 7:38 PM (GMT 0)
Hi  I had taxotere in 2001, I remember it not being as bad as the A/C and FEC;with only some joint achiness (used Advil) and the beds of my nails and toenails hurt, but nothing ever fell out.  The steroid that they gave me beforehand (decadron I think) made me want to eat and made me very jittery for a day or so.

As for the hair thing, I shaved mine off when it started to fall out, and someone had suggested using duct tape (yes duct tape) laid very lightly on your head to take out the remaining hairs (it did not hurt at all).  To me this was better than finding little hairs all over my pillow! ;-)   I used some cute cotton hats (this was in May-August) and some scarfs, but found wigs to be too hot and itchy.  It really seems like forever when you are going thru it but when that first little peachfuzz hair starts to grow it seems to come back rather quickly!

Good luck, and big hugs,  Stefanie (also large tumor, 4.5 cm Stage IIB 5 of 49 lymph nodes positive)

Posted 1/27/2007 9:28 PM (GMT 0)
I also had FEC followed by Taxotere.  I found Taxotere to be very tolerable.  After my first session, I really had no side effects.  The 2nd-4th I did have nausea.  I didn't experience any aches, so I feel very lucky.  I had 4 rounds of each.  This was between Nov 2004 & May 2005. 

 

I went with the shave-the-head camp.  I couldn't stand watching my hair fall out, neither could DH.  My scalp did hurt, too.  Wore a wig for about 5 months.  The hair grew while still on chemo, but very slowly.  It didn't start growing at a normal rate until 6-8 months after chemo ended. 

 

I hope you find Taxotere as easy to take as I did.  Good luck!

Posted 1/27/2007 10:15 PM (GMT 0)

Thank you for your responses. Did anyone have trouble with their nails?  That is the most frightening thing to me. My doctor said my nails could turn dark and what I read on the internet said they could fall off!!!!

Please let me know if there are any tips to avoid that or even if it happened to you.  I believe I am scheduled for 4 [every two weeks] rounds of taxotere.

I really do appreciate your sharing - makes me feel not so alone in this.

Pam

OK Blessed

Posted 1/27/2007 10:20 PM (GMT 0)

Anthi - I would love to hear more about the 'cold cap' method - must be very much like the ice in the mouth during the red devil push.  I think if I could have done something like that to my head I would also have thin hair but not a total loss since my hair is extremely thick.  We must be a little bit behind here in the US! especially Oklahoma!

Pam

Posted 1/27/2007 10:40 PM (GMT 0)
Pam...no experience with taxotere, they didn't use that stuff back when I was diagnosed. But I do have experience with kids moving away from home! Sounds like you have a very full plate right now! Just make sure you don't "overdo" and get yourself worn down. Recognize your limits, and don't be afraid to say you need to rest.

Good luck, sweetie. Hope the taxotere goes smoothly for you.

BEV
Posted 1/27/2007 10:52 PM (GMT 0)
Thanks Bev - I have raised my son by myself since he was 3 months old - this will be the first time we have been more that 30 miles apart. He has grown into a great young man and he is marrying a wonderful young lady but I am going to miss him terribly. I appreciate your empathy.
I shopped for an outfit to wear to the wedding today - drove around for an hour at the mall for a parking place and then Dillard's had nothing [i am round from the 5 months of steroids] finally found something at Avenue - now I am exhausted. Still have to find another outfit for the family dinner - that will have to wait a few days:>
I am also thankful to hear from you - that you are still here after being diagnosed 'a long time ago'. I am continually amazed at how strong women we are and that we prove those doctors wrong!
Blessings.
Pam
Posted 1/27/2007 11:11 PM (GMT 0)
Dear Pam...12 years and going strong, I'm very happy to say. My girls were in jr. high when I was diagnosed, and I remember sitting in one daughter's 8th grade graduation ceremony, wearing that wig and sweating from the hot flashes, and wondering if I would live to see the next one graduate. Well, here I am, a grandma now...and loving every minute of it!

I didn't know a soul who had breast cancer at the time, and the internet wasn't so common then, but I really wish I had had a place like this to come to back then. There's just nothing like having someone who has "been there, done that" to share your questions and concerns with.

Good luck with the shopping! Truly, I doubt if your son cares what you wear, as long as you are there.

BEV
Posted 1/27/2007 11:34 PM (GMT 0)
You are making me smile - yes even at work I have a little fan going all the time because my head gets so hot under that wig and I 'glisten' all the time!
Yes, you are absolutely correct - my son only cares that I am here and getting well. He and Katie [fiance soon to be wife] have already invited me to move to Seattle so I can be near them. Makes me feel better even if I never do move - at least I am invited. Now maybe when they do make me a 'grandma' I will move:> Their plan is 5 years!
I appreciate the internet so much - for years I have used it for research - especially in graduate school - now it has become a blessing that I am not walking through this alone.
Thanks to each and every one of you for responding and being so kind. I hope that I am able to help others also.
Pam
Posted 1/28/2007 12:53 PM (GMT 0)

Hello again Pam.  You ask about the cold cap.  I think most of the UK hospitals use them these days.   The one I had looked rather like a motor cycle helmet and is attached to a sort of cooling unit which chugs away like a little freezer all day.  They spray your hair with water and conditioner before they put it on as that makes it work better.  You have it on for half an hour before the first chemo drugs go in and then for an hour after the last ones. It didn't really feel  very cold but when they took it off  before I went home there were quite big lumps of ice in my  hair.  The nurses had warned me that some patients cannot tolerate the cold cap and I have to say it wasn't nice as it fits very tightly and is secured with a tight strap under the chin and at first it gave me a very bad headache but that went away after the first 5 minutes.   The theory is that by constricting the blood vessels in the scalp less of the drug can get there and so there is less hair loss.  I shall start to find out if it's worked for me in about another week now.  I'll let you know.

A question for you.  What exactly is red devil and what is the 'ice in the mouth' ?

I agree about this message board.  I have had and am still having loads of help and moral support from the wonderful women here and loads of very good practical advice too.

Best wishes everyone and take care

Anthi

Posted 1/28/2007 2:45 PM (GMT 0)

red devil = doxorubicin

it is a drug that they actually sit and push through your IV/port.  we jokingly refer to it as 'red devil drain cleaner' --- and I am not sure that it is not made by the same company devil that makes the drain cleaner - only difference is that as one of the other posts mentions - it is bright red!

The first time they gave it to me the nurse was inexperienced and let it 'drip' in - set me on fire.  You keep ice in your mouth using the same principle for constricting the blood vessels.

I am feeling better this morning but 'itched' all night. Took a quick shower and rubbed Aveeno lotion all over - soaked by feet in baby oil, epson salts, and warm water but the rest of me especially my arms continued to itch.  Not sure if it is the taxotere - will call the doctor on Monday.  My tongue is also very sensitive so much be allergic to something!

It is a beautiful sunshiny day here in Oklahoma - I live in a loft with walls of windows and so any going to try and enjoy the day and get a bit of housework done and watch some old movies.  I have friends who are coming this evening to help me clean and carry out trash - I plan to cook a simple dinner to share and watch a movie with them.

Trying to be as normal as possible!

Please keep in touch - I appreciate being able to talk with all of you as we walk down this path together.

Love and blessings,

Pam

Posted 1/29/2007 5:35 PM (GMT 0)

Hello again.  The red devil sounds ghastly.  I think it may be similar to epirubicin which is one of the drugs in FEC which I am having.   Epirubicin is also bright red and I could feel it stinging my veins as it went in.  But they flush it through with saline immediately afterwards.  It also turns one's urine  bright red for several hours - rather alarming but the nurses had warned me to expect that !

Sorry to hear about the itching Pam.  Hope it is getting better now and I hope you had a good day yesterday with your friends.

I'm also trying to be as normal as possible and this week I've got a French conversation lesson planned for tomorrow morning and am going  back to my Salsa class on Thursday.  It will be the first time I've been able to do both of those things since the middle of December when I got my diagnosis followed very quickly by surgery.

Best wishes everyone and take care

Anthi

Posted 1/30/2007 12:58 AM (GMT 0)
Red devil is the nick name for what we know as Adriamycin (The "A" in AC combo). Yes, it is frightening to watch. It looks like red fruit drink, and the nurse is gowned, gloved and goggled, just to push it into the iv going into your veins. The first time I saw it, I was surprised at their precautions for the caustic nature of the thing that was supposed to CURE us!

I was lucky with my wig, it was winter time, so I did not have the summer sweating thing, although I did wear it to work through June. For the last month or so, I would shed the wig and wear a cap out in public, wish I shed the wig a bit sooner than I did though.

Great that you gals found each other..I had chemo buddies online too, including our Becky who just celebrated a birthday. It was February 8 (or 7th?) of 2000 that we started chemo the same week, and having a buddy to cheer you on and comiserate with and celebrate with was priceless.

L&H,
Lori
Posted 2/5/2007 5:46 PM (GMT 0)

Hello Pam.  How are you?  Has the itching stopped yet ?  I hope so.

Well the cold cap didn't work !  My hair started to fall out -  slowly at first and then incredibly fast.    I've probably lost about 75% of it now and it's still shedding fast.  But I've got my wig all ready so shall be wearing that when my students arrive in a couple of hours.

I understand also what you mean about a sore head. It is quite painful isn't it?

Best wishes everyone and take care.

Anthi

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