New to breast cancer

Patteee

I am from the colon cancer board as that is where my own focus and health have been for almost 3 years. It is my older sister who has breast cancer. She was dx'd in Aug, went through 2 out of 4 rounds of chemo, had a double mastectomy in Dec and is now half way through radiation treatment.


It is the reaction she had to the chemo that both of us have questions on. The following is from her describing what is going on...

"When I saw the oncoligist today, and she looked at my fingers (that have lost eight nails, the other two will go soon...same with my toes), she said "You had the most sever reaction to Paxil I have ever seen." I was suppose to do four rounds of this chemo, after two it was obvious that I couldn't take anymore. I never thought how it would be to have hands that don't work...I can't hold a scrubby in order to wash dishes, I can't remove old pictures from sleeves in albums (trying to make Adam his own album of pictures from when he was a baby...), I can't pick the pieces of a jig-saw puzzle off of the table, and when I lose the last two little nails, I won't be able to pick my nose or scratch an itch. And now I am just complaining...SORRY! The oncologist says she has never seen anyone whos nails don't grow back...I am trying to be hopeful...but it has been two months since the first one fell off and it has not grown a milimeter...I am still bitchings! SORRY!!"

Has anyone had this kind of issue with their nails or neuropathy so bad in fingers? If so, any suggestions or help would be great!

thanks

PrettyBald49

I did not lose my nails just
I did not lose my nails just the black discoloration on my nailbed. I was told by my oncologist that I could lose my nails. Now the neuropathy keeps me up at night. It is in my feet and hands. It has become more difficult since I finished chemo treatment. I am told it gets better. That's what I am looking for too,better.

jessiesmom1

Loss of fingernails and toenails
Hi Patteee,

I had 4 rounds of A/C and 12 rounds of Taxotere. Before that I had a rt. mastectomy. No radiation. No hormones as I am triple negative. I lost 8 out of 10 fingernails and 2 of 10 toenails. Like your sister, lack of fingernails made it difficult to pick up a coin or credit card off a counter,scratch off a lottery ticket, open a Diet Coke can or scratch my nose. You don't realize the kind of things you use your nails for until you don't have any. It seemed to take forever for them to grow back but they did! It has been 6 months since my last chemo and all but 2 of my fingernails look normal. I would say they were closing in on normal after I had been finished with chemo for about 4 months. I really don't believe that anything but time will make the nails grow. I did clip them regularly so less of the discolored or ridged parts were visible. As to neuropathy, I have been pretty lucky. It seems to have only affected 3 fingers on my left hand.

I think you are a great sister to have come to this board for advice for your sister. Wish my sister would have thought of it.

Patteee

jessiesmom1 said:

Loss of fingernails and toenails
Hi Patteee,

I had 4 rounds of A/C and 12 rounds of Taxotere. Before that I had a rt. mastectomy. No radiation. No hormones as I am triple negative. I lost 8 out of 10 fingernails and 2 of 10 toenails. Like your sister, lack of fingernails made it difficult to pick up a coin or credit card off a counter,scratch off a lottery ticket, open a Diet Coke can or scratch my nose. You don't realize the kind of things you use your nails for until you don't have any. It seemed to take forever for them to grow back but they did! It has been 6 months since my last chemo and all but 2 of my fingernails look normal. I would say they were closing in on normal after I had been finished with chemo for about 4 months. I really don't believe that anything but time will make the nails grow. I did clip them regularly so less of the discolored or ridged parts were visible. As to neuropathy, I have been pretty lucky. It seems to have only affected 3 fingers on my left hand.

I think you are a great sister to have come to this board for advice for your sister. Wish my sister would have thought of it.

see, I also have neuropathy
see, I also have neuropathy in 2 fingers in my left hand- all the way into the palm. And I am 2 years post chemo and it hasn't gotten any better. They initially thought it was an entrapped nerve at the elbow, but all tests indicate it is not. The neurologist I see told me last week it was considered permanent damage, that it now would not get any better. FRUSTRATING- I had more chemo than she did, so I would expect more lasting side effects. This fingernail thing really got me- I mean her fingers are naked, totally.

Marsha Mulvey

PrettyBald49 said:

I did not lose my nails just
I did not lose my nails just the black discoloration on my nailbed. I was told by my oncologist that I could lose my nails. Now the neuropathy keeps me up at night. It is in my feet and hands. It has become more difficult since I finished chemo treatment. I am told it gets better. That's what I am looking for too,better.

not unusual
It's not unusual for the fingers and toes to be affected by neuropathy and for the nail beds to die off. What is unusual is the SEVERITY of the problems. It seems as though they started very quickly too. I was fortunate enough that I didn't lose any finger nails, though they did turn a variety of colors. Eventually I did lose both big toenails. The neuropathy certainly DOES affect your ability to do things with your hands, especially small, tedious things. The good news is that MOST people return to normal after the chemo stops. Perhaps her onc could also switch to a different chemo drug, one that your sister could better tolerate. Congratulations to you for beating back your cancer. Did you do chemo and if so, what was it and did you have many side effects?

Best wishes to both you and your sister.
Marsha

dyaneb123

Patteee said:

see, I also have neuropathy
see, I also have neuropathy in 2 fingers in my left hand- all the way into the palm. And I am 2 years post chemo and it hasn't gotten any better. They initially thought it was an entrapped nerve at the elbow, but all tests indicate it is not. The neurologist I see told me last week it was considered permanent damage, that it now would not get any better. FRUSTRATING- I had more chemo than she did, so I would expect more lasting side effects. This fingernail thing really got me- I mean her fingers are naked, totally.

I never lost any nails but
I never lost any nails but the two big toe nails were loose..and very sensitive...the nueropathy was so bad I couldn't stand a sheet touching my toes in bed...But I'm a year out of chemo now and my nails are back to normal and the nueropathy is pretty much gone...
So it should get better eventually
Dee

Patteee

Marsha Mulvey said:

not unusual
It's not unusual for the fingers and toes to be affected by neuropathy and for the nail beds to die off. What is unusual is the SEVERITY of the problems. It seems as though they started very quickly too. I was fortunate enough that I didn't lose any finger nails, though they did turn a variety of colors. Eventually I did lose both big toenails. The neuropathy certainly DOES affect your ability to do things with your hands, especially small, tedious things. The good news is that MOST people return to normal after the chemo stops. Perhaps her onc could also switch to a different chemo drug, one that your sister could better tolerate. Congratulations to you for beating back your cancer. Did you do chemo and if so, what was it and did you have many side effects?

Best wishes to both you and your sister.
Marsha

Yes, I did chemo from July
Yes, I did chemo from July 08 to Jan 09. I was on FOLFOX – oxaliplatin is the icky chemo drug in FOLFOX. I too had horrid side effects- was hospitalized 3 times for a week each time due to severe reaction to oxaliplatin. My nails turned black (and are not like they used to be) but I never lost them! I also have permanent neuropathy issues in feet and hands, but not like my sisters. Once I started having problems they backed off on the oxaliplatin and then omitted it after my last hospitalization. You are right, my sisters got bad very quickly and still hasn't let up. She does say that radiation is a picnic in the park in comparison, so that part is good!

VickiSam

dyaneb123 said:

I never lost any nails but
I never lost any nails but the two big toe nails were loose..and very sensitive...the nueropathy was so bad I couldn't stand a sheet touching my toes in bed...But I'm a year out of chemo now and my nails are back to normal and the nueropathy is pretty much gone...
So it should get better eventually
Dee

I lost 3 toe nails .. with taxol and taxotere
My nails (1 year .. later) still have white milky discoloration .. My Oncologist was surprise when I went for my first wellness examine and review yesterday. In fact, he had his PA, snap a photo. He had never seen this before -- 1 year later, and my dense chemo is still fighting to get out of my system. I had blood blister's on the bottom of my feet for a little over a year. It took about 8 months for all toe nails to regrow back.

Good luck to your sister. Strength and Courage as well.

Vicki Sam

linpsu

toenails
I had 4 A/C and 4 Taxol, dose-dense. I am 7 months out of chemo. I still have neuropathy pretty badly in my feet. I did lose all 10 toenails; all but the 2 big ones have completely grown back. I did have neuropathy in my hands for a while, but that went away. My fingernails still look gross, but I never lost any of those. Good luck, Linda

carkris

linpsu said:

toenails
I had 4 A/C and 4 Taxol, dose-dense. I am 7 months out of chemo. I still have neuropathy pretty badly in my feet. I did lose all 10 toenails; all but the 2 big ones have completely grown back. I did have neuropathy in my hands for a while, but that went away. My fingernails still look gross, but I never lost any of those. Good luck, Linda

vitamin B6 is good for
vitamin B6 is good for neuropathy, and I tried neurontin which did not agree with me and am going on lyrica soon to see if it will help witht he foot pain. Certain antidepressants like cymbalta can help too. (I cant take that either) I have also heard elavil can help too. and glutamine. I needed PT to compensate for the weakness and lack of balance. I wear wide box shoes too.

webbwife50

lost nail
I lost nails on Taxol and suffer/ed neuropathy in my hands that was quite painfull. It has been about 14 months since my last chemo round, and while my hand are still weak compared to what they were before, I have found the working on small motor skills, like working with coins, (I recently started working in our small town market) is really helping. I think "time" and a positive attitude can do wonders!! God bless you and your sis! Welcome to our board. Love Alison

aysemari

Hello Pattee
I am so sorry that you AND your sister have to go through cancer. How
very nice of you to look out for her.

I lost toe nails during my chemo. It's been 9 months since I am done with
my heavy duty chemo and just a couple weeks since my last Herceptin
and I still am missing my big toe nails. They grew in about hallf way. So
tell your sister it takes time but most likely they will grow back in. I feel
for her, I can hide my feet in shoe, since my nail turned black, it does
not look very sexy, but she can 't hid her hands.

Your sister should come here to vent and get some support, she would
be welcome with open arms.

Hugs,
Ayse

Clementine_P

aysemari said:

Hello Pattee
I am so sorry that you AND your sister have to go through cancer. How
very nice of you to look out for her.

I lost toe nails during my chemo. It's been 9 months since I am done with
my heavy duty chemo and just a couple weeks since my last Herceptin
and I still am missing my big toe nails. They grew in about hallf way. So
tell your sister it takes time but most likely they will grow back in. I feel
for her, I can hide my feet in shoe, since my nail turned black, it does
not look very sexy, but she can 't hid her hands.

Your sister should come here to vent and get some support, she would
be welcome with open arms.

Hugs,
Ayse

Big toes
I did 4 rounds of AC and 2 of Taxol and one of Taxotere - I ended up losing my two big toenails and my fingernails were really bumpy and sensitive. I got neuropathy in my hands, feet, face, neck, and chest. I am now 5 months out and the neuropathy has subsided almost completely and all my nails are back except for the big toenails, but they are growing in and are about halfway there. I suggest taking biotin as it is a help to get your hair and nails growing healthily again. At least it helped me - always good to check with your oncologist before taking anything new.

So sorry you and your sister are dealing with all of this. Great that you are there for her, though.

Clementine

Kat11

Clementine_P said:

Big toes
I did 4 rounds of AC and 2 of Taxol and one of Taxotere - I ended up losing my two big toenails and my fingernails were really bumpy and sensitive. I got neuropathy in my hands, feet, face, neck, and chest. I am now 5 months out and the neuropathy has subsided almost completely and all my nails are back except for the big toenails, but they are growing in and are about halfway there. I suggest taking biotin as it is a help to get your hair and nails growing healthily again. At least it helped me - always good to check with your oncologist before taking anything new.

So sorry you and your sister are dealing with all of this. Great that you are there for her, though.

Clementine

I did 4 round od AC and 16
I did 4 round od AC and 16 rounds of Taxol. I lost toe nails and my finger nails all broke turned black then white with lines running through. I still can't grow nails that are strong. The toe nail has not grown back right. I finished all this last winter. I did use some tea tree oil on fingers helped some. Good luck
Kathy

DianeBC

dyaneb123 said:

I never lost any nails but
I never lost any nails but the two big toe nails were loose..and very sensitive...the nueropathy was so bad I couldn't stand a sheet touching my toes in bed...But I'm a year out of chemo now and my nails are back to normal and the nueropathy is pretty much gone...
So it should get better eventually
Dee

No chemo, so, I didn't have
No chemo, so, I didn't have this, but, it looks like many have had similar problems. Praying it will get better.