Taxotere is a nightmare

lago

Acetyl-L-Carnitine. I take only 500mg a day. I still have numbness in my left heel.

tracie23

does your heel feel like it is asleep?

lago

Yes sort of. Some where between just about to start coming out of being asleep but before the pins & needles start.

Kindergarten

Hi, Tracie, I could not find Lago's post either, but I had 4 treatments of taxotere 6 years ago. Good news, my hair came back beautifully, curly at first and now it is quite thick for an old lady my age, Ha!, ha!!. Unfortunatley, everyone I knew who had taxotere had the numbness in their feet and hands. I don't remember if I took anything for it, but I had my DH massage my feet and hands, when we were watching television. The massages helped tremendously, especially right around the third or fourth day after infusion.  I also had a couple of gift certificates to get massages and I requested feet and hands.I soaked my feet in warm water, too. I wish I could have found Lago's post for you, but I am sure she will respond soon.  Hope you find relief soon. God bless you, Kathy

Trisha-Anne

Hello all

Hope you are all doing well?

Quick question - I painted my nails black after my first Taxotere and topped that with nail hardener.  I didn't use cold packs and two weeks out my nails aren't sore.  I took the black nail polish off today, to give my nails a rest for a couple of days.  There are bands going across them that are lighter than the normal colour.

Is this the banding or ridges that you girls have been talking about?

I'm hoping to escape the scary nails thing, and am hoping that this isn't the first sign.

Trish

sunflowerE152

My onc suggested I take a B complex vitamin

lago

Trisha I never got the bands. It does sound like what the other gals got.

I did take pictures of my nails of my left hand and right toe yesterday before I put the black polish on. There is still one coat of clear though. Not the best pictures because it's hard to keep my hand steady while pushing the camera button since my finger is sore. My right big toe is pretty lifted… picture doesn't do it justice. I can't fit it into almost all of my shoes and boots.

Be warned these are pretty gross so don't look if you don't want to be grossed out.

fingers photo (left hand only)
Toe photo (right toe only) 

Now if this doesn't scare people into icing their hands and toes I don't know what will.

tracie23

TrishaMy nails are lumpy and have terrible ridges 3 of them are dark but not black and my thumb is peeling from the middle it looks like I am trying to dig a hole in the middle of my finger ??? My one toe is getting very thick but the color is ok... I hope you don't lose your nails I feel for lago  

Lago I am so sorry you have to go through this.... YIKES.... I hope you start feeling better.

Adey

Crikey Lago!  You always put up the prettiest pictures.  (c:  May that terrible T leave your system and your poor nails heal quickly.  Ice ladies!  If you can't find or afford the mits and booties zip lock bags of crushed ice work too.  That's what I used and no issues (touch wood) with my nails.  Here's wishing little or no SEs to all.  I'm a month out from my last TAC and still no hair... fingers crossed.

lago

Adey have you really looked for the hair? I put on my glasses the other day and the bright light in the bathroom. Wow, I had turned into an albino Chia Pet and didn't know it. There were these little white hairs all over my head… as well as the sides of my face and some on my forehead. I'm assuming this is an indication that my real hair will follow. I believe this hair does eventually fall off. Hope so or I will become an albino werewolf.

I am retaining fluid something aweful. I just put in another 4lbs in a day. My ankles were so swollen I had trouble zipping up my booties… and with my fingers that's no fun.

Damn I'm almost 3 weeks out. Shouldn't things at least stop getting worse by now?  

shadow2356

Wow! Reading this whole thread really opened my eyes. I had taxotere, carboplatin and herceptin x 6 then herceptin for a year. I was so sick with the taxotere I felt like I was hit by a bus and then dragged for a few miles. I think my dr downplayed a lot of it. I am validated by reading all your experiences.

On a positive note, it goes faster than you think, especially when you are looking back. I still have slight numbness in my finger tips and feet. I wish I had iced them.

Good luck to everyone. I wish you strength in your fight!

tracie23

lago: did the swelling happen on your last tax?

lago

It happened at every TX but now it's even worse.

tracie23

I have not had the swelling but the feeling like my feet are asleep has just started. I have one more tax to go... I hope I don't swell

kal_1865

I'm on A/C with Taxotere, just finished 5 of 6 infusions.  I started with the swelling at #4.  I also suffer from varicose veins and unfortunately have had several operations for poor circulation in my legs.  MO prescribed 20 mg of lasix and it seems to be helping.  The swelling in the legs was very scary and I felt I was in jeopardy at the last visit.

Adey

Yes. Damn it! They should be getting better by now.  And they will friend.  I had my last fill Friday and the boobs are bursting.  (c:  My next appointment with the PS is May 1.  May 5, 2010 is when I was diagnosed, my 48th bday.  Time flies...

Charley

Lago - I would call your onc and see what they recommend or if its cause for concern. I never had much fluid retention with my treatments but 4 weeks out would be concerning to me too. Symptoms can linger for a long time.  I lost all my eyebrows and eyelashes about 4 weeks out! Aches and pains lingered for me about 4-5 weeks too.  Then you start feeling better slowly ... just a little better every day. Sometimes you feel like its never going to happen.  But it will.

Hang in there.

Charley

lago

Charley I did send an email from both my accounts on Friday to my onc and NP but for some reason they don't seem to be getting my emails anymore. I have had this happen the last 2 times before and they don't seem to be fixing it. Will be calling Tomorrow. I will be getting my herceptin infusion on Tuesday so I can also talk with the onc nurse if all else fails.

Never quite understood how you see the onc after each chemo but not after the last one when the SE are the worst. I don't have another visit scheduled (and it's with the NP) for another 3 months (April 12th).

208sandy

lago:

Instead of your onc might I suggest your PCP - that's who took care of me weeks after last Taxotere - she checked my ankles for swelling and made some suggestions - she also sent me for an echocardiagram just to be on the safe side (it turned out just fine and I was relieved) she also adjusted my medications for high blood pressure (which you probably don't have) but the underlying thing is if you are gaining weight rapidly from fluid retention you should see your doctor (any doctor) ASAP it was on the sheets from my cancer clinic.

As for the facial hair well I just shaved it with one of those personal tiny electric shavers - the hair did not grow back - eyelashes and eyebrows are just now (after two years) starting to be noticeable and of course if you've been on this thread you will know that my hair is still very sparse but I am forever hopeful - the se's do fade but I will have neuropathy in my feet and my fingers for the rest of my life and I was never told about this until after my taxotere was finished. My fingernails will never be the same but they are just fine when polished even with a light shade - my toenails recovered but the one on my right foot is still working its way out I keep it trimmed and I do soak my feet a couple of times a week with epsom salts and that seems to help - you get huge points from me for being so upbeat while you go through all this - it'll soon be over and you'll be going gangbusters but for right now try to rest as much as you can and do things that make you happy.

Hugs, Sandy

Linda-n3

I also took T/C x 4 and have had a miserable time with fingers sore, nails lifting, peripheral neuropathy.  It has affected my mouth (tongue tingles and teeth "tingle") when I talk or eat, fingers tingle/painful with typing, and I make a living writing and giving lectures.  I am now learning to use a program called "Dragonspeak" which is a voice recognition program that allows me to dictate e-mail and other documents without typing.  I am on gabapentin, which may be giving me some relief but also causes some difficulty with slow thinking and finding the right words at times.  Has anyone had experience with the peripheral neuropathy and can anyone give me any encouragement as to how long this might take to resolve?  This is been the most difficult part of my treatment and the one that causes me the most anxiety.

The great news is that my tests have all come back showing no active cancer!

One thing that I did not know was just how long it would take for the fingernails to no longer be loose.  It has been 11 weeks since my last T/C treatment and eight weeks since a single A/C treatment (discontinued Taxotere because of severe neuropathy with cycle three) and I lifted the tips of three of my nails off of the nail bed when I pried the lid off of the plastic container.  I don't know if this is permanent damage to the nail bed or if my nails will grow back out completely, but just wanted everyone to know they should be careful even after finishing treatment because the nails are still slightly loose.

Best wishes to all of you who are just starting, in the middle of, or just finishing Taxotere.  I agree with Tracy that this is a miserable drug, but it also is an effective anticancer drug.

Diane1960

Lago- I'm so sorry that you're experiencing problems with your nails.  It looks horribly painful.

How soon after starting your treatment did the problem with your nails start?  My mom just had her 5th round of TCH last week and so far no nail issues.  I'm hoping she's in the clear.

Linda-n3

Your comments about the doctors downplaying some of the side effects is right on target!  When they say you may have some fatigue.  It can turn out to be of such severity you that you cannot move a muscle to even get out of bed to the bathroom for several days.  This is not helpful in planning for some caretaker help in the 3 to 7 days following chemo.

It is very important to let your doc know about even the most minimal of side effects, because some of these side effects can be minimized with reduced doses of the drugs or delay of the drugs only if they are recognized early.  My doc kept asking about whether I was having "trouble doing buttons" which I interpreted as whether I was fumbling with them or not.  However, I was actually having pain in tingling in my fingers when I did my buttons, but did not think this was what she meant and so I ended up having full dose of Taxotere, even after the neuropathy started and feel like it might have been minimized if I had been more forceful in speaking up about my concerns and experiences early on.

Linda-n3

This is in response to lago from yesterday.  I too have noticed new hair and have a very fuzzy head and as mentioned in another post, I am 11 weeks out from last T/C and eight weeks out from single A/C treatment.  Very exciting!  I expect to "bloom out with the spring."  I even have some evidence that my eyebrows are returning (sort of a 5 o'clock shadow there!)  What I am concerned about is that I am so far out but my fatigue level is still significant with lots of weakness and muscle aches.  I cannot seem to put in a full day at work, just a few hours and I'm completely worn out.  Does anyone else have any suggestions or recommendations?  My PCP says this is normal and it will take six months to a year to feel better.  I realize I am impatient, but somehow this just does not seem to be right and I should be feeling better by now.

Sorry about all the postings today but I just found this site a few days ago.  Sure wish I had found it months ago!

Trisha-Anne

lago - your pictures are scary! :-) I'm so sorry you have to go through this - your nails look so painful.  My nails are going quite well, I've taken the black nail polish off for a couple of days to give my nails a rest.  It turns out that the banding is in response to the shock my body has received after chemo.  It's quite normal and isn't painful.  I almost feel a bit guilty as you girls have so much trouble with your nails.  I'm going to keep using the black nail polish and hardener and hope that I continue without having that particular se.

I went to a yoga class last night - my first ever, and although I was tired, it wasn't very far away, so I decided to give it a try.  Wow!  When I got home I felt really, really good.  My husband said I had colour back in my face and I feel so relaxed and better.  I'm hoping to keep going right through treatment, and maybe it'll make a difference.

Hugs to you all

Trish

tracie23

n3ypb: my fatigue is so bad , I am still having treatments but I know what you are saying.... today I woke up did laundry cleaned felt great by 11:00 I could barely get up off the chair... by 6:00 in the evening I am ready for bed. My onc told me Taxotere would be a piece of cake compared to AC he was wrong I would do AC over and over. Some people exercise I can't seem to get there yet. Before this I worked out all the time, now I do what I can and that is all the pressure I put on my self. I am at the point in this chemotherapy regimen I can't stand myself , I am so tired of the sores in my mouth , the aches and pains in my body, my fuzzy head of GRAY hair, I look like a little old man not a 40yr old woman... I am so broke I am so stressed out about bills and being able to afford to have chemo and take the Neulasta shot etc... I hate everything about this.

Trisha-Anne

Oh Tracie - you poor thing - sending you lots of gentle cyber hugs xoxoxo

This journey really is a crappy one isn't it.  It's awful to be stressed over money as well.  My onc told me that the only se's I'd have from Taxotere would be lethargy.  Yeah - right!!  I'd rather have FEC instead of this too - it was so much easier. 

Hang in there girl - you may not look so hot on the outside at the moment, but inside you are still a beautiful woman with so much courage.  I know you don't feel that courageous right now - but it's there, just hiding a bit :-)  And the outside of you will get better and better as time goes on.  I know at times I feel like a little old man too, and it's awful.  Nothing's going to make you feel any better right now, so rant all you want here - we know exactly how you feel.

Trish

xoxo

lago

Diane1960 my fingernails nails started to hurt after tx3. Toenails maybe tx2 but they started to turn black after tx3. Toes weren't as bad as fingers because I don't use my toes as much as fingers. Using them (trauma) actually makes it worse.

I dont' seem to be suffering from the fatigue. Guess that's why I got all these other lovely SE. It just wouldn't be fair if I didn't suffer too.

tracie23

lago your to funny... you got the bad nails , I got the bad fatigue,  I think I will take the fatigue your nails look like they hurt so bad.  

bdavis

I am headed to tx #2 tomorrow so maybe not enough time has passed.. I did use nail hardener and iced my nails (with bags of peas) plus cut them short and have had no problems at all.. no ridges or pain... I did not paint my nails as I read somewhere that nail polish remover can damage the nails, so only sally hansen hardener.

No real fatigue issues either, except for the day after neulasta and the next couple of days... we'll see how this week goes... Ironically, my boss, who has been great, just offered me a better job today... I said I am for sure interested, but clearly my health comes first and need to take time as needed... he said "not a problem"... so yeah for me!!! I will take the little pleasures as they come.

tracie23

bdavis, Congratulations on the new job !!!! and I am so happy you are not experiencing the SE's that is great to hear !!!