Severe and rather sudden hair loss

[Soccermom]

Hello friends,
Sorry I haven't been around much.Went back to work 6 weeks ago, then my best and only friend here in Jackson,MS was diagnosed with mets to lung and pelvis after 10 years NED. I am heartsick..
I also went out on medical again for more revisions to hips where my skin had fused to bones. SO I am home now for a few weeks and have time and the heart again, to chat.

I have a BIG problem ,while not life threatening, I find extremely depressing.

My Hair is falling out like crazy. This began 8 weeks after my Stage 1 DIEP surgery at the end of August, slowed a bit from Feb-April, and since surgery last Thursday is going crazy again. I have the same black streaks on my tongue that I did then ,too. (Am on Clindamycin post surgery)

I finally let is grow longer this past year and now its so thin I *think* I may have to cut it off again. Losing my hair (thick and waist length) was in some respects harder for me than my breasts.

What kind of Dr do I see? Can I use Rogaine or Nioxin? I hope I dont sound too vain, but i work in retail and thinning hair, unlike my former breastless state, is something you cant really hide..( I HATE wigs, went bald or wore scarves during chemo). I just dont get this and everything I am reading says it may not be reversible as the follicles can be dying!

I take Centrum Silver, Mega B complex ,extra C normally but havent been able to since I have had reflux since surgery...sigh

HELP, please! Brenda, you there???

Marcia

[SoCalGal]

Hi Marcia-
I am obsessed with my hair. It was shedding handfuls while I was on carbo-gem which didn't work except to make my hair look like crap and actually make some bald spots in the back (not hot). Thankfully it is coming back - but at first it was not the normal SOFT curly texture so I had to cut it short. Then it was 100 lengths and weird so I had to keep it short. It is growing but not fast enough for me and I obsess daily in what product/s to use to make it look edgy and not just like an old-lady haircut. I think it's bad enough to have an incurable disease. I do not want to look ugly as well.

That said-I know that sudden hormone changes can cause hair thinning. As can aging. As can stress. A friend just told me that sodium laurel sulfate permanently damages hair follicles and accounts for premature hair loss in woman as well as men. I did not google this info.

Most shampoo products at whole foods are sulfate free. I could open my own beauty supply house with the amount of product that I own but don't really use.

I wish I had more to add on a remedy. xoxo Flori

[Joanne S]

Hi Marcia,

I know how difficult it must be for you. My heart goes out to you hearing of your friends recurrence after 10 years---such a let down. You know that medical advancements have been made in cancer medicine and I pray she will have good care and a positive response.

Also, I know how you feel when you say your hair is thin and falling out. Marcia, can you tell if it is falling out from the root or breaking? I'm pretty sure Biotin is a supplement that you can take for your hair, but we all know none of that stuff gives instant results and we have to be patient.

I would recommend seeing a dermatologist. I imagine you've also discussed this with your oncologist; if not, make sure you do. It may be a result of chemo, hormones, some of your other medications, and/or a combination of things. You have been through alot and stress and anxiety can have a major effect on your hair. If you are experiencing anxiety or depression, you may want to consider something seeking assistance or medication--which might help with your hair loss.

Since my hair started growing back 13 months ago, I have had scalp problems---called folliculitis. I have a few areas that had pimples like bumps and those have severely thinned. Do you have any pimples or bumps are your scalp?

I wish I had better advice for you. Just like finding a derminatologist, I would see more than one doctor about your hair loss.

I guess I didn't realize the DIEP procedure consisted of one than one surgery. DIEP was my first choice, but since there weren't any doctors in Michigan performing this procedure, I went for reconstruction with tissue expanders. I have had lots of problems in the past 13 months with them, including capsular contracture. I had a capsulectomy in the last week of November and had gel implants put in. They were great at first. However, after several weeks, the radiated side started giving me problems again---moving, tightening, hardening...so I am now in the process of deciding if I should get one implant out, get both out, Tram Flap, Latisimus Muscle Flap, or DIEP. When you have a chance, I hope you could fill me in on your DIEP experience.

My best to you with your surgery and finding a resolution for your hair.
Hugs & Prayers for you and your friend,
Joanne

[karen z]

Hi. In addition to discussing with your oncologist (and having him/her approve any treatment) I would discuss with a dermatologist that specializes in thinning hair/hair loss (such dermatologists are out there and can be incredibly helpful) and would also discuss with a good internist (who is aware of all that is going on with you).

[Soccermom]

Thanks guys...I was thinking an endocrinologist maybe?? Joanne it is falling out at the root, not breaking. Flori, I bought that Organix shampoo (Green Tea) thinking it might be gentle, I;ll have to check the ingredients. Karen, I have my 6 mo check up on the 12th May (with my Onc) and I wouldnt start anything chemical without her approval,point well taken.
I also had forgotten to mention my husband has a significant squamous cell lesion on his forehead and needs MOHS sugery to get rid of it..
Have I mentioned how MUCH I HATE CANCER!!!!!!!!!

Thank for all of your advise...and Yes, I am on Cymbalta/Ativan/Trazadone (better living through chemistry!)

PS FLORI, I highly doubt that you could look ugly...BUT, I do know exactly what you mean! Gentle hugs!
Marcia

[Sherryg683]

I had that problem last summer. I had a bald spot on the top of my head bigger than a half dollar and it was bald. I don't even remember it falling out, just looked one day and it was there. I also hate wigs, they itch too much. I went to the dermatologist and he said it was alopecia areata (spot baldness basically). Can be stress, pulling of hair, hormonal or an over active immune system atacking the hair folilcles. He gave me quite a few steroid shots in the area and it started growing back. It took a few months but it's all fine now. Although, I've now noticed some thinning in the front hairline. Go see a dermatologist and ask for steroid injections, it can't hurt. I know how frustrating this is, you get your hair back and then it falls out in spots. I am so sorry for your friend, cancer sucks. I recently met a lovely young woman in chemo who was NED for 8 years and hers had come back in her liver. She said it was probably due to stress because her husband shot himself dead a few months after she was diagnosed and left her to raise 2 young children by herself. I felt so sorry for her. ..sherryg683

[harrie]

Marcia, wish I could help. I only experienced hair loss from the chemo. Nothing from my DIEP surgeries.
I do use Nioxin and I think that is helping my hair follicles.

How did your surgery go for the revision of the hip area?

Sending good thoughts you way. You deserve a break....
Maryanne

[Sheila]

Marcia
Hair can also fall out pretty dramatically after surgery, due to the anesthetic...could this be the problem? As far as the tongue, that is most likely a side effect of the antibiotics you are one...many do that. I know how sensitive the hair issues can be...mine is much the consistency of bird feathers as it returns, not the straight dark long hair I once had....I always think it must get better as it can't get worse than this! I would check with an endocrinologist, make sure they know about the anesthetic.

[Soccermom]

Hi There, Sherrie Harrie and Sheila..
Harrie, I dont think the DIEP is responsible ..it may have been the Deprovan (altho my PS assurred me that he had never heard that).. maybe the ovary removal last year?...the Arimidex...the antibiotic...the pain patch or the antidepressant I use??? I have been eating pretty well,(considering my husband says he cant cook and my DD is only 15) I always keep hummus and fruits and veggies to snack on, Vegetable soup.
I am going to schedule an appointment before I am totally bald!
Sherrie, the lady that you mentioned, what a sad,sad story. My friend was stage 1,micromets to 1 node,(ER/PR+) Her2 was UNKNOWN did FEC and 5 year Tamox...mets to hip when biopsied came back same except also Her2 -. She had no symptoms..her tumor marker said it all,came in at 303. Our Onc was floored. She has always had an exceptionally supportive husband and family. Go figure..

Thanks all, Marcia

[StephN]

Dear "mom" -
About the shedding hair. With all the stress you are under, that could be a major part of the cause.
After my Dad passed away last November, my hair started falling out in handfulls! I took a baggie of it to my GP and he knew what I meant! That had come from just ONE washing that I recouped from the tub and my brush.

I went with the intention of getting Rogain for women, but my doc said to be patient that he thought the extreme stress of the previous 8 - 10 months was responsible. He said that the hair loss can come after shock, which my Dad's death was even after all he had been through.

I only perm my hair - no color. I had not had a perm in 3 months and waited another 3. Have used Nioxin products for 8 years and got some of the follicle booster. My doctor was right. I started on a low dose of Celexa to help my mood and he said this could also help the hair situation. Now my hair is thickening again. I got a cut and perm and feel back to normal.

Flax oil is also supposed to be helpful for hair health and I have taken that right along for years now. Hope your problem will be as easy to solve as mine was!

[Sherryg683]

My dermatologist told me to get the Rogaine for men, not women. She said the difference is that it's stronger and will work better. On the box it says "not for women". I have been using it for a month now, too early to show a real difference. This is for the thinning in the front, it's not major hair loss yet, just thinning. Sherryg683

[Soccermom]

Thanks again Ladies!
STRESS, who me???? LOL. I really dont consider myslef to be any more stressed out than I have always been or more so than anyone else I know (ca. or not). Sheesh, so basically I can either dump my pain in the *SS husband or go Bald...Hmmm, let me think about that one...LOLOLOL

In all seriousness ...I thnak you for your ideas and suggestions!
marcia

[harrie]

Marcia, is that a fairly common occurrance to have your skin fused to your bone requiring a stage 3 surgery?
Hope your recovery is quick.
Take care.
Aloha,
Maryanne
ps...I never did get my nipple tatoo yet. Did you? When I get that it will be complete. I don't know if I told you, but I did get small silicone implants put in during stage 2. With that I got up to a size B.

[Soccermom]

Hi Maryanne!
Lets see if I can explain the hip thing...I elected to have the "stacked DIEP", a procedure the NOLA Docs pioneered. Because I was having bilateral (from scratch, had delayed recon) I just didnt happen to have enough tummy or butt fat to get the volume and or projection that I wanted. This procedure actually allows them to take the fat from what I can the "love handle" area (they call it lumbar something or other) and from the lower abdomen. I like be a pioneer...and said "go for it"...maybe it will help someone else down the line. Well when I healed the skin tightened up right over my hip bone to the point that there was nothing padding it. It looks PERFECT now! Absolutely perfect! I also got a small implant which has gotten me to what I looked like before BC (a small D). I have my nips, not the tatooing (which I am contemplating skipping) so it sounds like we are about at the same place. I cnat believe I even did this...I was so adamant about NOT reconstructing initially. I am so happy with it.
But nice boobs and NO hair...argh!
BTW, I know of another lady in Hawaii who is BRCA+...


Hugs,Marcia

[StephN]

Try to DE-stress any way you can. Let something go.

My Mom had the MOH's surgery for a squamus cell growth on her arm and on her shoulder. They got clean margin. It went well and she has been fine for the past 4 years.

Hang in there, baby!

[dlaxague]

Hi Marcia,

I was just googling hair loss/weight loss for a friend who lost 40 lbs and enough hair that she's now wearing a wig, on a diet regime that included pills of unknown content (MD supervised). And then I read your post. Weird timing. Anyway, we were suspicious of the pills but it looks like hair loss (and also poor hair quality) can be a temporary side effect of the weight loss itself, or rather of the lack of nutrition that causes it. So clearly nutrition plays a factor.

It might be worth trying some simple nutritional additions - more protein if you can work it in, and perhaps a children's vitamin that you could chew would be easier on your reflux?

I don't think hair concerns are trivial or vain. I bet most of us remember the hair issues as one of the hard parts of cancer treatment.

Love,
Debbie Laxague