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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Loss of fingernails or toenails during treatment?

by Terri Michigan on Tue Sep 23, 2014 2:45 am

Did anyone lose fingernails or toenails during their treatment for multiple myeloma?

I have a friend on aggressive breast cancer treatments, and she said she lost several fingernails and toenails.

I haven't heard anything like that resulting from our stem cell transplants (SCTs) or the other treatments we get.

Terri Michigan
Name: Terri Michigan
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2009
Age at diagnosis: 45

Re: Loss of fingernails or toenails during treatment?

by Nancy Shamanna on Tue Sep 23, 2014 8:20 am

Hi Terri,

I didn't lose any fingernails or toenails, but my fingernails became dry and brittle during treatments. My toenails, which were already damaged from doing long distance running, became very thick and impossible to trim. The large toenails became bruised, painful and now there actually appears to be no nail bed underneath them.

I now need to get pedicures to deal with the toenails, and that has really helped. So I think those problems were a combination of prior damage and then strong chemotherapy. I don't know if this is the 'norm' though.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Loss of fingernails or toenails during treatment?

by janner on Tue Sep 23, 2014 4:33 pm

Hi Terri,

I did lose my finger­nails and toenails over a period of time, after my first autologous trans­plant. It was like my existing nails slowly died, then the new ones grew slowly, pushing the old ones along until they got to the point where I was able to cut them off, and let the new ones grow all the way.

The whole process took several weeks. It was at the beginning of cold weather, so putting on gloves was difficult because, as I slid my hand in, the old nails that were still attached got bent back and that hurt. (Same thing with socks on my toenails) I figured it was like losing my hair, only the nails didn't just fall right off like the hair did.

No one had mentioned to me that my nails would be affected, so maybe it only happens to a very few people.

I think it may have been the CVAD chemo I had, plus the melphalan and total body radiation, or the combination of those that caused the nails to regenerate. I did not have the CVAD or radiation for my second transplant, and my nails were fine that time.

Best of luck in your myeloma journey :)

Moderator's Note:

CVAD =
cyclophosphamide (Cytoxan) + vincristine + doxorubicin (Adriamycin) + dexamethasone.

janner
Who do you know with myeloma?: myself
When were you/they diagnosed?: 2000
Age at diagnosis: 47

Re: Loss of fingernails or toenails during treatment?

by mimorgan on Tue Sep 23, 2014 5:17 pm

Hi there. I have had 2 stem cell transplants and I have lost my big toe nails on both feet. They have grown back, but I have a permanent split in one nail and the other keeps growing back (slowly), then dying back and growing again.

I've been going to the same pedicurist since before my diagnosis, so she works with whatever stage the nails are in and does a great job keeping them as healthy as possible. I recommend sticking with the same person if possible, as they learn the idiosyncracies of your disease.

Just another thing a multiple myeloma patient learns to live with. I do a salon pedi and make an enjoyable experience out of it (lemonade from lemons).

Best of luck to you!

Mike

mimorgan

Re: Loss of fingernails or toenails during treatment?

by meeshymeesh on Tue Sep 23, 2014 6:55 pm

I had a tandem SCT in December 2011 / March 2012 and my big toes nails were affected. Just like others mentioned, it was like the current nail died and the new nail started growing under­neath. My big toe nails also split down the middle. My toe and fingernail were very dry and brittle and still are to this day.

Beside the melphalan, I also had induction therapy of Revlimid, dex, thalidomide, Cytoxan, and VDT-PACE, so it's very hard to pinpoint which drug caused the damage. Also, I was never advised that this would happen, but was told to expect anything, just as long as I reported it to my specialist.

meeshymeesh
Name: Michelle
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2009
Age at diagnosis: 40

Re: Loss of fingernails or toenails during treatment?

by SusanMary on Wed Sep 24, 2014 1:09 am

Hi Terri

Yes, I lost my fingernails after high dose chemo followed by 2 autologous stem cell transplants in 1996. It felt like the final insult! First my hair, then my eyebrows and eyelashes, finally my fingernails. The old nails became detached at the cuticle and the new nails started growing, pushing the old nails along with them, which meant they caught on everything.

I am fighting my fourth relapse at present (since February 2013) and have had various therapies over the years which has not resulted in a repeat performance with the fingernails, thank goodness. But my nails are very dry and brittle a lot of the time. At present they are in quite good condition, but the skin on my hands and around the nails is extremely dry. The only thing that helps with this dryness is to rub Sorbolene into my hands several times a day. I have tried expensive hand creams and they just don't make an impression!

SusanMary
Name: Susan Brown
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb 1996
Age at diagnosis: 47

Re: Loss of fingernails or toenails during treatment?

by NStewart on Wed Sep 24, 2014 2:10 pm

I also lost the nails on my big toes following ASCT. But, the fungus that I had had prior to transplant resolved with the high dose chemo and I haven't developed it again under the nails of my big toes. My fingernails split easily so I keep them extremely short and use a nail polish with polyester fibers in it to try to keep them from splitting.

Be careful with pedicures. Take your own instruments because you know how clean they are. Many people develop infections in their feet following pedicures from instruments that haven't been sanitized and from the basins that haven't been cleaned thoroughly.

Nancy in Phila

NStewart
Name: Nancy Stewart
Who do you know with myeloma?: self
When were you/they diagnosed?: 3/08
Age at diagnosis: 60

Re: Loss of fingernails or toenails during treatment?

by Nancy Shamanna on Wed Sep 24, 2014 3:17 pm

Good point, Nancy, about the cleanliness of salons. I would only go to a salon for a pedicure where the instruments were autoclaved and it is obvious that everything is cleaned very thoroughly after each client!

Recently I started to worry about the use of UV lamps (UV is a carcinogen), and found that I could ask to have them turned off when my feet and hands were being dried. So I am fairly confident that I will not pick up infections at my local salon! Of course, I think I could go to a podiatrist also for help with my toenails.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Loss of fingernails or toenails during treatment?

by Terri Michigan on Mon Sep 05, 2016 9:57 am

Thanks everyone! I did not end up losing any of my nails during my transplant :) I only lost the hair on my head, but it's down to my shoulders now and I am very happy about that. I am also still in remission so I am very happy and hope I continue to stay in remission For Ever. A girl can dream, can't she? ;)

Just wanted to add I have been on no maintenance drugs since my stem cell transplant. I do get Zometa once a month, which I will do for 2 years, then once every 3 months.

Anyway, just thought I would post this good news. Recently my big toenails on both feet have started separating from my toes, so I was googling it and found this old thread I started. From what I have read, it is probably a toenail fungus. Oh, that's nice. Grrr. Oh well, better than cancer, that's for sure.

So hopefully all of you are hanging in there with your treatments and that many of you are in remission!

Hugs to all of you on your journey.
Terri

Terri Michigan
Name: Terri Michigan
Who do you know with myeloma?: Self
When were you/they diagnosed?: 2009
Age at diagnosis: 45

Re: Loss of fingernails or toenails during treatment?

by GaryH on Mon Sep 05, 2016 12:18 pm

When i had my stem cell transplant, 17 years ago, the last day of my hospital stay I had a shower and I believe that is where i got my toenail fungus. I can't think of anywhere else. At the time, I was susceptible to infections. Anyway, this has stayed with me all of these years, and just 2 weeks ago I lost my big toenail. The other one isn't looking all that healthy either, and I may lose it in the near future also. Although it's not too pleasant to look at, it isn't too bad, as in it doesn't hurt. I just write it off as another side effect to add to the growing list!

GaryH
Name: GaryH
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Nov./97
Age at diagnosis: 44

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