Taxotere is a nightmare

Linda - It's ironic, because my onc decided on Taxotere because the risk of neuropathy was less that for Taxol... guess 'less risk' is all relative. But I appreciate the information, because the more I know to look for, the more I can bring to her attention.

We had a day last week with colder temps and since then the neuropathy problem with my left hand has gotten a lot worse.  It is reccuring neuropathy from the taxotere.  I am 5 1/2 months PFC and thought it was getting better.  The cooler temps really aggrevated it.  Sigh!

LOL, Windlass, I couldn't agree more. Like others I was told that this would be SO much easier than the FEC I had in the first round. Thing is, I didn't have any particular trouble with the FEC. WIth the Taxotere I am getting all kinds of unpleasant things happening, including bone pain, sore throat, messed up stomach, inability to eat for a week, messed up nails ... GRRRRRR!

I am thankful that the last one is tomorrow. 

Bdavis and cdairth, I told the MO about the teeth issue - the best I could describe it with the first cycle was "my face felt like it was falling out", involved teeth vibrating or tingling, worse with eating anything crunchy (basically worse with chewing period), and face was so tired I could hardly move the muscles, painful to show much expression or smile.  This finally resolved about 6 months PFC, but I also started Effexor about the same time.  I lost a lot of weight, but am slowly gaining it back as the appetite has improved and I can enjoy my food again.

I am really tired of taking the Effexor and using a topical cream, but overall I am much more functional than I was 3 months ago, and my PCP said to be a little patient (not my finest virtue) and we could try to go off the meds after 6-9 months to see if the neuropathy has improved by then.  The Effexor just causes so much vasospasm in my fingers that they are ALWAYS cold, but the topical cream helps them not to be painful.

I am actually thinking of writing something up about the teeth thing as an unusual presentation of early neuropathy.  Bdavis and cdairth and anyone else who had problems with teeth, would you mind if I PM you and talk about some of the details? 

Tracie, I am going boob shopping tomorrow.  I did not do reconstruction - have had way too many surgeries in my lifetime and just don't want to do anymore - but have the problem in too many choices just like the ladies who have reconstruction.  Size, shape, silicon or not, nipples or not, etc, etc, etc.  I am excited for you to get your figure back!  Is this the final implants?  Good luck!!!

Lago, I am so sorry to hear you are still dealing with the nail issues.  I was not a nail polisher before chemo either, and did try it to see if my nails would look better, but I could not tolerate the feel of the polish.  It just felt thick, and this is probably more emotional than real, but it seemed like my fingers were suffocating with that stuff on.  It lasted 2 hours, then I took it off and continued to keep nails clipped short and trying to limit trauma to them.  They are finally doing better, the neuropathy is responding to treatment, so I am a much happier camper than I have been on that issue.

FLwarrior, I can't remember if you are taking anything for the neuropathy.  I went through about a gazillion meds before we finally found one that I could tolerate and that worked.

Momine, good luck tomorrow.  So glad this is your last one! Remember that this is cumulative, and you may be more tired after this one than for any of them.  This is a little hard for others to understand - you have finished chemo, so they all expect you to perk up and get back to normal, but as you can see from some of us, it takes a LONG time to recover fully (my MO said it would take "a while" but she didn't say that meant 6-12 months!!!!).

There I go again, writing a book.... sorry.... Have a good night all!

Hey Linda, Good to hear you are getting better.  I did not have any issue with my teeth, but sure do have the "glove/sock" neuropathy.  I thought it was getting better, until it got cold.  It dawned on me tonight that it was about the same time it got cold that I ran out of the B-complex and acetyl L-carnitine supplements.  I will be going tomorrow to get some more of each and start taking them again. Sure hope it helps!  Linda what kind of topical cream are you using?  On bad days I used to use my EMLA (port numbing cream) on the soles of my feet.  It helped.  Hadn't thought about using it on my left hand that is bothering me now...hmmmmm...just may try it.

Good luck on your boob shopping tomorrow.  I didn't reconstruct either.  I just wear the foob when I go out.  At home I go flat.

Linda, PM me anytime. Happy to discuss teeth or anything else. Cath

Linda, thanks for the good thoughts and the warning. My mother went through it almost 5 years ago (ovarian cancer, and no we do not have BRCA) and I remember that it took her a lot longer than she or anyone else expected to return to some kind of normal.

rachel - youonly need to ice during the Taxotere portion of your tx.  Start about 10-15 minutes before (my Tax was the first med so I started icing during pre-meds) and ice all the way through until you are about 10-15 minutes past the end of Taxotere.  I also tried to hold ice chips in my mouth during the Taxotere infusion.  Because you have concerns about neuropathy I would also take B-6, L-Glutamine and Acetyl L-Carnitine during the entire time you are on chemo.  Check with your MO first though.

Hi lago,

I'm 20 months from my Taxotere chemo - finally  my nails are totally nice, as new and stronger as before!

Best wishes !

Omaz,

Good link. Wish I knew about the icing before I started TCH. I'm almost 7mo PFC and my finger nails are back to somewhat normal. Big toes, not so much.

Windlass,

Did you fast for most of your Txs? 

I fasted for a Herceptin only treatment and had all kinds of problems.  My Cardiologist said fasting throws off the way proteins are synthesized in the body and brain (because there isn't any in the stomach or intestines your body starts to break down muscle tissue to help keep your brain firing like it should).  He said our body can't break it down fast enough so we will often lose mental acuity, have feelings of impending doom, and of course heart damage.  (Edited to add:  He doesn't think the one time fasting caused the damage, but he believes it def. gave me the palps, and fever).

I told him when I researched the whole fasting thing for chemo I didn't find any studies that said that or I wouldn't have done it.  He said there are no studies on it because it is "common sense."

Well that made me feel intelligent! heh  It may be common sense to a doctor, but shesh! 

The good news is...once a healthy diet is re-established and the body begins to heal, those things should improve, although it is a lengthy process.  He's telling me 12 months is a reasonable amount of time to start to see some improvement with my heart.....

Here's hoping you bounce back faster than I do!

slousha Thanks for letting me know. I really hate having to polish my nails but I'm still looking for a full-time gig. My nails look bad enough that someone would wonder what my issues are. Granted this is minor compared to those with the chemobrain and heart issues.

Windlass that sucks about the mental confusion. I hope you get out of your funk soon. November is not that long ago. Give a few more months. I Bet you'll be as good as new.

TonLee good news regarding the heart. 

Tracie - I just reread your original post - yes - my nailbeds were so sore. Many of my nails turned black and peeled off AFTER I stopped Taxol. I cut my nails down to nothing and the terrible pain stopped. My ears also ached so badly - I had to go to the ER one night to get lidocaine drops to stop the earpain. I went through tons of it. I will be joining a research project next month in which I will be taking oral chemo - One of the drugs will be Cytoxan - I told them I would try the oral Cytoxan, but would never take any form of Taxol! 

Tonlee: No, I did not have it in me to fast during the Taxotere, probably because of the pre-infusion steroids making me too stressed and impulsive to tolerate the difficulties of fasting. My medical team initially thought it might be the steroids themselves that were making me insane, but we eliminated them entirely for my last infusion, and I still had the same problems.

I did fast for several of my A/C treatments, and it was a beautiful thing compared to when I didn't. I'm not sure I'm on board with your doctor's assessment of "common sense" without data or research to back him up, given that there *is* research that supports fasting, at least with Adriamycin. (That's the whole Thomas Kuhn Scientific Revolution argument right there.

Tracie: I'd love to hear more of what happened to you on Tax. I have been all over the net and not found much about this aspect of the drug messing with people's heads (and their emotions and their marriages!!), but anecdotally, a fair number of us are experiencing it. It's just not getting reported in the literature.

Maybe we need to be more vocal and get the word out, so at least other women don't feel so alone. I want women who experience the mental side effects of Tax to stop getting told "You're the only person I've ever heard of this happening to." It's disgraceful that I've heard some variant of that message from nearly all of my health care providers. In essence, that's equivalent to saying, "Hey, lady, it's not the Taxotere making you crazy..." The implications there are obvious -- and ugly (and extra hard to deal with when you're flipping out already!) 

Anandagram: Days 4-7 post chemo were always the peak days of Taxotere SEs for me. I was up and about, and feeling fine on days one through three, then... BLAMMO. A/C was different, though -- I spent the entire first day in bed sick with the covers over my head and things gradually improved from there. Maybe that's what your onc nurse was thinking of?

Lago and TonLee: You've been out there in front blazing a trail for us. Thanks for the encouragement!

Windlass,

I hope your recovery is quick and full.

Much love to you.