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problems with loss of toenails

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MomMom44 View Drop Down
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    Posted: Apr 29 2014 at 3:12pm
Hello,  This is my first time posting.  I was diagnosed with Stage 1, TNBC in early January, no LN involvement.  I had a lumpectomy, and I've completed 4 rounds of A/C and will soon start weekly Taxol for 3 months, to be followed by 6 1/2 wks of radiation.  I thought I had sailed through A/C without any serious issues, but developed compromised skin and mouth issues, plus have lost one big toenail and am about to lose another - which was quite a surprise.  Knew loss of nails and neuropathy could be issues with Taxol but not A/C.  Been without a toenail for 3 weeks and it's still quite sensitive and requires daily care, sore when sleeping, can only wear tennis shoes with toes cut out.  Upon advice of oncologist office have ElastoGel booties and gloves to wear during Taxol to "freeze" them and hopefully prevent further toenail loss and lessen neuropathy.  Has anyone out there been through 12 weekly rounds of Taxol without toenail loss (spoke to someone who lost 4 toenails 2 months after completing Taxol).  Any tips would be greatly appreciated.  Thank you!
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lilyrose Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2014 at 7:03pm
MomMom, I am definitely going to ask about possible toe and/or fingernail loss again. I think I will also talk to the Onc nurses in the infusion room. They seem to aware of any and all side effects. I hope those booties help!
Wishing you well. Hugs, lilyrose
DX 2/14, age 60, IDC TNBC BRCA- Stage 1,Grade 3, lumpectomy 3/14, 2cm, 0/4 nodes, clear margins


4/14, A/C DD 4rounds
6/14 Taxol weekly x 12
9/25 Rads 26 + 8 boosts
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2014 at 9:33pm
my nails started getting funky during a/c too, and i had some neuropathy pains too, which surprised my onco a bit.     i lost 8 1/2 toenails all told, and couldn't wear the boots because the nails were so painful.   i hope they work for you!   i did finish losing a couple after chemo ended, and i had one that just couldn't decide what to do with itself, and kept lifting and settling, lifting and settling, for months.  but in the end that was the only full nail that held on.  

most of my toenails have been fine for a while and i'm guessing/hoping that by july - two years after my last chemo - that the very last one (a big toe) will have a complete nail that is fully attached.   i can see the last beau's line that's just behind the last of the detached part move up as the nail grows.  forget watching paint dry, my new saying for any such comparison is "watching toenails grow"!   and i don't think i helped my timeline either - stubbing my toes a few times and possibly getting back into rigorous exercise classes before the nails were ready for all that bumping.   i don't think it's possible to be overly careful about not stubbing our toes on anything, even just little bumps. 

but this too is passing, and i think of it as a visible yardstick as to just how far i have come!   :)
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2014 at 10:31am
It was quite the shock whcn I started losing my toe nails. My cancer center did not think the freezing thing worked and were not a fan of it. Basically I went to a podiatrist who felt that the loss of the nails was due to fungus and cut back my nails as needed and gave me an anti-fungus cream. It is a long process......nails are very slow growing! Good luck!!
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2014 at 2:49pm
Thank you for your responses.  I start the weekly Taxol tomorrow and am planning on wrapping the big toe without the toenail in gauze to protect it from the frozen booties.  I also have disposable paper liners for both the booties and the gloves.  My oncologist reports that the ElastoGel products are helpful, but I'm amazed at the number of women who loose toenails both during and months after the chemo.  My podiatrist is champing at the bit (not kidding:-) to remove the other big toenail - it will be checked again next week - but I'm holding onto it unless it gets infected.  I've heard of other cases where the nail actually lifts up and then somehow manages to hang on.  My derm gave me an anti fungal cream which she admits doesn't work very often, but it does sometimes reverse the process.  The problem is that because the skin on my toes is so sensitive, just wrapping the big toes affects the bottom of the toes where the bandage adhesive is located, or the adjacent toes (I use moleskin to protect them).  Protecting my toes has become my mission and part time job:-). 
 
If anyone else has tips to offer, I'm listening.  Thank you all so much!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SueCape Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2014 at 9:25pm
My last chemo of T/C was Sept 19, 2013 and I just lost a big toe nail. Funny that that was the toe that I had immediately experienced numbness with hours after the first chemo. The podiatrist said that it is not unusual to lose toenails up to a year after chemo has ended. The gift that keeps on giving. Be well and know that all of you are in my prayers.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2014 at 6:41am
Wow - didn't know you could lose them up to a year...just when you think you've missed out on a bad side effect.  I wonder if there is anything to be done after chemo ends to prevent it.  My onc says to use tea tree oil on nails while undergoing chemo - maybe after too?  Did you use any kind of cyro or cold therapy while getting the chemo?
 
Thanks so much.
 
 
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SueCape Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2014 at 6:35pm
No I didn't use any of the cold therapies...was not aware of them at the time. Just remind myself that the chemo worked if I lost my hair and nails. I was diagnosed 1year ago today. Feeling well and so grateful and blessed. Life is good. My prayers and best wishes to all!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2014 at 9:43am
Congratulations on your one year anniversary!!!
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Jun 26 2014 at 8:28pm
the tea tree oil would prevent fungus and bacteria from forming underneath the lifting nail.  i don't know if it would prevent the actual lifting and detaching though.  interesting if true.
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 26 2014 at 11:01pm
Nancy,  you are correct about the tea tree oil.  My big toe nail lifted off the nail bed.  The tea tree oil helped with the fungus, but the nail never went back down.  I used it after treatment so maybe it helps more if used during treatment?  
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Jun 27 2014 at 7:07pm
fungus are soooo hard to get rid of i would have to recommend starting early to prevent issues, yes.  wish i had!
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackiel Quote  Post ReplyReply Direct Link To This Post Posted: Jun 27 2014 at 11:18pm

Hi Girls,

I saw my onc yesterday, and asked her about the toenail thing.  She said there really isn't much you can do.  The booties really don't work and the oils are more about making the toe comfortable, if there is fungus underneath the toe then there are meds for that.  She told me to get a canvas tennis shoe for work ( soft fabric) and keep the nails cut short.  I really like here, I love her honesty.  She said Jackie, chemo isn't comfortable and there are side affects, for you this is one.  I will try to make you as comfortable as I can but they probably will fall off, and we will handle that as we can.  So wasn't the best of news, but honest.  I have to admit I've done pretty well on the A/C, done with that btw, so I really can't complain too much!
DX 2/14 age 52,TNBC,Stge 3a ,IDC rb,3/14 bilateral mast,3 of 17 nodes pos w/ invasive vascular. Recon,left exp. infected taken out margins cleared on right. K67 30%. 5/14 a/c with taxil to follow.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denisea Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2014 at 3:23pm
Hi Ladies,
 
Just a heads up on the loss and "flipping" of nails.  It can happen even a couple of months AFTER you finish chemo.  I finished chemo at the beginning of January and my nails didn't start "flipping" until the end of February.  Silly me--I though I'd escaped that particular side effect, but I didn't.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2014 at 3:34pm

Jackie, Actually my MO has had good experiences with her patients using the frozen gel booties and gloves icing during Taxol infusions and has a clinical trial using them. My Taxol started earlier, but so far I've had 9 treatments and no evidence of neuropathy thus far. No further loss of nails other than the big toe nails which were affected during the previous AC.
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jackiel Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2014 at 4:36pm

I need to be a bit more fair to my onc.  She is more than willing to help anyway she can and to help me ease complications from the chemo. I did get some tea oil and I have started using it so I hope that I can keep my toenails but it doesn't look good.  I start my Taxol on Monday.  I think I am going to use the ice treatment.  Thank you all for the advice and help.  It means a lot to know that you are all out there.  My last A/C treatment was a little hard on me and it helped me to know that many of you finished yours and I could do it too!  The chemo nurses tell me I will feel as if I were on vacation with the Taxol, not so sure about that but bless them cause they are in the what I call the trenches with us!

 

DX 2/14 age 52,TNBC,Stge 3a ,IDC rb,3/14 bilateral mast,3 of 17 nodes pos w/ invasive vascular. Recon,left exp. infected taken out margins cleared on right. K67 30%. 5/14 a/c with taxil to follow.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patzi Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2014 at 3:35pm
I just passed my 1 year anniversary since dx. My last Taxol treatment was on Halloween 2014. My fingernails turned quite dark, but did not fall off and are now fully recovered. I lost both big toenails sometime in November. One is almost back to normal, but the uncovered area is still extremely sensitive. Unfortunately, the new growth on the other toe appears to be coming off again.

This, plus my lingering neuropathy make is difficult to wear any sort of shoes, even 9 month out. I stick mostly to flipflops. In the winter, I found Blundstone boots to be the only thing I could wear. They have a large toe box that didn't touch my foot at all, but even these i had to take off after a few hours.

I made a small domed, cage-like device from an old plastic laundry basket to keep the covers from touching my feet at night. Worked quite well!

Best of luck with the rest of your treatment! 
DX 5/7/13, stage I invasive, 13 mm, no nodes,
4 A/C & 4 Taxol completed 31/10/13, 16 rads completed 24/2/14
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CrunchyGirl Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2014 at 1:19am
So I've been off chemo for 2 months. Just removed my nail polish and the tips are all white and my 2 on tight hand it's like halfway down. It looks like pics of fungus. But is it? What did u find that cured?
3cm in left 31yrs 4 Red devil, 12 taxol, neg nodes, surgery July 2014. Tumors shrunk by 1cm all negative. Now cancer Free!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nancykind Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2014 at 8:45am
the white parts are probably just where they are not attached underneath, you can likely see this if you pull the skin back a bit at the tip of your finger, and look under the nail.  it's kind of.... hollow looking.     it takes time but you will grow new, good nails.  one of my toenails kept detaching as it grew back in and it's only this third one it grew that finally seems to be a keeper. 

the nails will turn funky colors from the chemo but fungusy nails have more of a yellow or quite orange tint in my experience and there was a definite stinging sensation that alerted me to it originally.  the fungus itself is white, sort of flaky or chalky, is under the nails, and can be easily scraped (gently of course!) with a nail tool.  tea tree oil applied twice a day will cure fungus but it takes weeks and one has to be very diligent.  

Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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