Taxotere is a nightmare

rachelvk

Just checking in. I had my 2nd tx on Thursday, and so far so good. I iced my hands and toes, and it looks like I'll make it through the next two weekend performances of Pirates of Penzance without losing my violin playing. I've avoided most of the SEs so far and I'm counting my blessings. Of course I'm heading into the wbc nadir probably over the next few days, so we will see...

Linda-n3

I am celebrating the fact that I now open plastic containers without fearing lifting of my nails!!!  And I can scrub my hands clean and use a little soft brush to keep under the nails clean!  Feels SOOOO much better! and it was a gradual improvement over the past 3-4 months, I just realized they are feeling pretty near normal! 

Rachelvk, glad to hear you are able to play.  I am hoping to get back to piano very soon - I ran a few scales last weekend and didn't have too much discomfort until the next day and found the muscles in my hands and fingers were sore.  Geez, I didn't realize how total deconditioning can affect EVERY muscle and joint in the body! So I will be building back up slowly, but am a bit more optimistic now than I was 6 months ago.

rachelvk

Linda - I am so glad to hear you're starting to come back a little. I've hardly played since the summer - when my surgery wound up at the end of October, I jumped in at the last minute to play our first concert of the season, but with little practice, and I've just practiced (lightly) a few times since the beginning of December, plus about 7 rehearsals for this show. And it's been tough because even in these past six months, my muscle memory has declined. Tonight at least the fingers seemed to find their way. Wishing you a continued recovery and many great musical moments.

rachelvk

Cr@p - pins and needles in my left palm this evening. It went away after about 5 minutes, but I've never had something like that happen before. Onc is getting a call tomorrow.... insurance will cover acupuncture if it's for diagnosed chronic pain. Hopefully neuropathy falls into that somehow.

tracie23

rachelvk, The pins and needle feeling is normal.... I had it every time and some times it would last a few days go away and show back up .....My feet always felt like they were asleep...

lago

rachelvk I had the pins & needles in my palm after tx2 as well as numbness in my heel that did resolve after most of the treatments. After tx2 I started to take Acetyl-L-Carnitine. I never got that tingling in my palm again. My heel kept getting numb. Actually right now with the cold and snowy weather it's a bit numb right now (my new weather barometer). It is better that it was though. I'm 5 days from being 1 year PFC.

Check with your onc if it's OK to take Acetyl-LCarnitine.  You might  want to print this out:  (last paragraph) "Clinical Research Ahead". It's also a memory booster so I'm actually still taking it. I don't do the mega-dose  just 500mg a day.

rachelvk

Thanks. I usually take a B-complex and after my first tx started taking B-6. I'm just so tired of all the pills I'm taking. My onc wasn't familiar with Acetyl-L-Carnitine when I asked, but maybe I'll just ask if there are any reasons not to take it and add it to the list. Can't hurt. I'm already a scatterbrain sometimes, so memory help is good.

lago

print out that information from the link above when you go. The National Cancer Institute is well respected. So many here prefer to go to an NCI center for treatment… that's how respected.

SpecialK

rachel - are you taking L-Glutamine?  I took the Acetyl L-Carnitine, B-6 and 30g of L-Glutamine (it is an amino acid) specifically to stave off neuropathy.  I had intermitent finger tingling between tx but it would always resolve by the next tx.  I also ended up with bottoms of my feet somewhat numb, but not until after tx#5.  That completely went away after 6 months PFC, and was never more than a nuisance.  My MO cleared me to take all three things.

kaywestrap

I am on FEC-T and had some side effects on the FEC drugs.  Now I am on Taxotere and the first cycle was a complete nightmare.  I sailed through the first few days when I was on steroids and then crashed and burned.  I hurt in places I didn't know even existed!  I had sore fingers - with shooting pains.  Sore mouth.  Lost all sense of taste.  Thrush - wanted to scratch myself raw, and did!  The cycle was terrible, so much worse than the FEC.  I was absolutley dreading the second cycle and this time was more mentally and physically prepared.  I am on a lot of pain killers as I developer shingles between my breast op and my hysterectomy a week later.  So I reduced down my tramadol and put up with the arm pain so that I could have tramadol as a relief from the pain in this cycle.  It worked!  I didn't go through the excruciating pain but still have other side effects.  Thrush top and bottom which is soooo itchy and sore in my mouth.  Exhaustion, sore nails and acid reflux so far.  I am on day 7 so a few more days till the weekend and then I am hoping I will pick up a bit.  Only 1 more treatment to go and then the radiotherapy.  Then back to work - albeit part time and hopefully some normality again!

cdairth

Hang in there kaywestrap, I found that I didn't feel good until at least 10 days after chemo infusion with taxotere. For me FEC was easier as well. On the positive side, you'll be finished soon and as time passes you will forget all this crap and move over to the Hair, Hair, Hair thread where we all eagerly await the return of our hair!

shelley2011

kaywestrap, hang in there.  I also had the thrush mouth issues, and it sucks but mine typically cleared within no more than 10-12 days after tx.  Magic mouthwash didn't help and was slimy.  Nothing made it go away faster, but I did make sure to eat a yogurt a day to try to restore the healthy bacteria.

rachelvk

My onc asked me to hold off on L-Glutamine and the acetyl-L-carnitine for now (I did bring the article with me, but I am taking B-6. Nothing yet after tx #3, but we'll see. Last time it really came and went quickly so I'm hoping for the best.

This tx hit me harder in terms of nausea (fortunately I kept throwing the anti-nausea meds at it and never actually threw up) and fatigue. I rebounded, but was exhausted again today. Halfway there.... halfway there.... halfway there....

SpecialK

rachel - half way is awesome!

Hang in there everybody!

Anonymous

Rachel: That's weird. My Dana Farber oncologist TOLD me to take those supplements! I'm so glad I did, too. No neuropathy, very little pain. All of my side effects were emotional and mental.

TonLee

Windlass,

Hey!  Good to see you.  How are you feeling??

Anonymous

Hey there, TonLee! I love your new avatar photo!

I'm doing MUCH MUCH better. I finally finished rads, kicked a nasty, accidental Ativan addiction, and I am getting my emotional health back. (Taxotere nearly killed me, and I don't mean that lightly.)

I have had energy for the first time in months. Yay!

Linda-n3

Rachel, I took the B6, it was OKd by the onc, but I ended up taking too much and my B6 level was in the toxic range.  The neurologist checked that along with B12 (too low can cause neuropathy) and other stuff.  B6 toxicity can cause neuropathy, so be careful with your dosing! I tried the L-glutamine based on some basic science research, but I still got neuropathy.  Didn't know about the L-carnitine or would have tried that as well.  The thing is, the oncs just don't really know why some people get the neuropathy and others don't, but there is a study from Indiana University that indicates that people with a certain genotype may be more susceptible, but that testing is not available except in research setting and it is not proven, but I think there is something more than just L-carnitine, L-glutamine, and B6 that can be done to protect nerves - maybe first finding who might get it and avoid this drug - use a different drug or combination.

Rachel, thinking of you and hoping your palm issues resolve ASAP.  How many more rounds do you have?  Just make sure you keep your MO informed - I think I tried to be "the good patient" and not complain too much, and my MO really did not have any idea that I was having so much pain and difficulty because I just didn't tell her and so she gave me the next rounds and didn't reduce the dose without knowing just how devastated my life would be without the use of my fingers.

On the positive note, I have successfully discontinued the systemic meds, including Effexor, for the neuropathy, still use the topical one for my hands.  I am mostly just dealing with tingling with tapping on keyboard (computer or piano), but am not in so much pain from it.  Teeth have started feeling a bit funny, but I am still enjoying the crunch things that give me protein, like nuts.

Special prayers for all you on taxotere.  There IS life after taxotere, and it may take a while for some of our bodies to recover, but things DO improve (and I admit that I didn't believe this for a very long time!).

TonLee

Windlass,

I am so glad to read you're doing well!  I was really worried about you sister.  Now that your on the mend...back to taking over the world?

Much love,

Tonya

rachelvk

Linda - Thanks. There seem to be so many opinions out there among docs. I just checked, and saw that the B-6 is 5000% the daily value; plus I take a regular B-complex. Maybe I'll alternate the B-12. In all fairness, I still think that I've been getting off 'easy' so far, but this tx has been the most difficult. No tingling as of yet this round - last time I got tingling two evenings and one morning about a week after my infusion, which would mean today. But I do notice callous-like feelings on a few fingers, so that could be another form. And my taste buds tend to abandon me and then come back after a few days.

Linda-n3

Rachel, that could be a little too much B6 - be careful with it - I am not sure if I helped or maybe even hurt myself with taking too much.  The thing is that all the stuff they are doing to prevent the neuropathy is based on studies in other animals - no controlled clinical trials with any of these things - so the things that we have each done (L-glutamine, B vitamins, icing fingers during treatmet, etc etc etc) are based on "testimonials" which just don't have any real merit.  Very frustrating as we try to do the best we can to protect ourselves, not know if things would be even worse if we didn't do some of them.

Also, please pay attention to that "callus" feeling - CIPN can cause numbnes or tingling or pain - or any variation on that.

I found that I completely lost my sense of taste for salt, and once my taste for foods came back, it seems I don't really want much salt on it.  But my desire for sweet foods has increased tremendously, not sure if that is because I could always taste sweet more than other tastes, or because I have gotten into bad dietary habits of trying to get enough calories in to keep my weight up and now I am at a good weight but still want the cakes, pies, cookies, candy..... LOL

TonLee, hoping you are doing better. I don't remember if it was on this thread or another that I read about your issues with herceptin SEs.  Best wishes to all the rest of you ladies on taxotere.  Hang in there - 24 hour rule as needed!

TonLee

Thanks Linda....I have another MUGA next month...an Ooph on Friday! 

I was hoping to be free and clear of all this cancer stuff by now....a girl needs her illusions!

Linda-n3

TonLee, it's those illusions that keep us going!!!! Will be thinking of you this week. As my younger sister (a nurse) says: "They're only parts, and parts will turn on you!" - so a couple more parts going that won't be causing you problems in the future! Best wishes for an uneventful surgery!

rachelvk

Linda - I did some reading on B-6 and looked at the dosage - doesn't look like I'll be taking it again. Maybe once a week.... but the 100 mg pill is the 'upper tolerable dose' for the average male, and I'm a 4'7 woman.

So far I haven't had any more tingling this round, but I will watch that callous feeling. It is frustrating with so much being experimental - I'm really glad I have all of you here to hear about options, and others' experiences. I hope you've been able to get back to the piano. 

Kelloggs

Tonlee - good luck Friday with your ooph,  Get rid of that estrogen-maker!

VeronicaX

Hi ladies, I would like to give some hope to those starting Taxotere. Both I and my neibour are on Taxotere. I had one round and my neighbour had two rounds so far and we oth feel very well except or a coupleof days of pain but we belive that is from Neulasta. I a

So have a young kid and i work full time from home. My energy is very good so far and I execrcise half an hour on the elipical every day.

rachelvk

Veronica - Good luck with your tx's. I've had three TAC so far, and am learning to live with the SEs as they come. Exhaustion was surprising this time. Are you taking Claritin to combat the Neulasta pain? Seems to work very well. There's a February chemo group if you haven't found it yet.

TheLadyGrey

Help.



My eyes are tearing to where it looks like I'm crying all the time. I don't even bother to wipe the tears off my face. The skin around my eyes is chapped and cracking. Sometimes it gets so bad I can't function properly.



Is there anything to be done? How long does this last? I finished 4/4 TCH three weeks ago.



In the last 48 hours I have gotten sore all over - like I lifted weights for the first time in a couple of months and my hands hurt and I am weak as a kitten and have sores on my feet that sting and won't get better.



It has been three weeks - does taxotere build to a crescendo? Is this normal?



To top it all off, I feel terribly guilty about not being one of those women who sails through chemo - like having all these side effects is a moral failing.



Sigh. When does the part of treatment that doesn't suck start?

Kelloggs

LadyGrey - I am going into #4 of 6 TCH tomorrow and I am having trouble with tearing of the eyes too.  I hope it doesn't stick around after I'm done.  Try posting on the Taxotere, Carboplatin and Herceptin thread....there are alot of ladies you are far out from treatment and are a wealth of information on this cocktail.  Good luck!

cdairth

Ladies, so sorry you are having trouble with Taxotere, and I hate to say it, but for me, these problems lasted quite a long time. The tearing didn't clear up until 7 weeks PFC. I had horrible muscle pain that peaked 5 weeks after treatment. Okay, the good news: it is"normal" and for most it clears up completely and is forgotten a about. It doesn't seem like it now, bit it will pass.