Hair Loss

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February 3, 2013 at 9:26 am  #1253353    

Sherry

If you look at my picture, you can see that I had a lot of hair. When I had my brain surgery in July, the entire back of my head was shaved. It was followed by cyberknife treatments and then I started Tarceva. Now I have almost NO hair. The only hair I have is the new hairs that have grown in. Is the hair loss more likely from the cyberknife or the Tarceva? Thanks!


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

February 3, 2013 at 10:19 am  #1253357    
catdander forum moderator
catdander forum moderator

With my husband he lost most of his hair with chemo then started tarceva. On tarceva for 10 months it grew very little and very curly. It has since grown at it’s normal rate and texture but still has about 2 inches of “tarceva curls” at the ends. It seemed tarceva didn’t cause hair lose but other things like slow growth, wild hairs, and curls.
Here are a couple of forum post on the subject of cyberknife and tarceva and hair loss.

http://cancergrace.org/forums/index.php?topic=8806.0

http://cancergrace.org/forums/index.php?topic=4604.0

This is what a treatment facility says in their FAQ,

“Will my hair fall out or burn my skin after CyberKnife treatment?
The radiation being delivered by the CyberKnife is so focused on a specific target that it is highly unlikely that hair loss or skin burn will occur. Typically, the radiation dose administered is not sufficient to cause permanent damage to the
skin or hair follicles. In the event that an intracranial lesion being treated is close to the scalp a patch of hair may be effected. The hair will grow back. Patients receive instruction before and after treatment and have an opportunity to dialogue with members of the medical team so that they are aware of possible events specific to their case.” http://www.morsecyberknife.com/FAQ-Cyberknife.htm#15

February 3, 2013 at 11:51 am  #1253360    

certain spring

Hmm, I know this is at odds with what Janine quoted, but I’d be inclined to blame it on the radiation. Sherry you have all my sympathy as it is horrible having no hair – I absolutely hated it – but it started growing back within three months of the radiation. In between I got a wig and got a haircut (makes the wig look more natural). Hang on in there. Make your friends go shopping with you. Get a Cossack hat (see Keira Knightley in Anna Karenina, Julie Christie in Dr Zhivago).
I agree about Tarceva making your hair go crazy – uncontrollable and bushy.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 3, 2013 at 12:45 pm  #1253365    
catdander forum moderator
catdander forum moderator

After looking around online it appears cyberknife isn’t as bad as wbr with an almost certainty of losing your hair. It’s more like possible patchy spots of baldness. Then on top of that tarceva does wacky things to hair. D lost most of his hair with etoposide then started tarceva and didn’t really start growing much hair until after stopping tarceva. So while he didn’t continue to lose hair on tarceva he didn’t grow much either. But the curls he did grow are adorable.

I think being at odds just proves that with so much going on it’s hard to tease apart and pinpoint the culprit.

February 3, 2013 at 5:06 pm  #1253374    
Dr West
Dr West

Losing hair from cyberknife would be very uncommon. Losing hair from whole brain radiation or prophylactic brain radiation is expected, and losing much hair from Tarceva (erlotinib) is unusual but certainly happens from time to time — more commonly than major hair loss from cyberknife, which really would be hard to envision.

-Dr. West

February 4, 2013 at 12:50 am  #1253384    

certain spring

Then I’m wrong. But my Cossack hat advice still holds good!
Could it be stress-related? You have been through so much – with the brain surgery, and then the loss of your father.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 4, 2013 at 6:50 am  #1253385    

Sherry

Thank you all for your answers and thank you Janine for the links. Shortly after I had the cybeknife, I had several completely bald patches. For quite some time that’s all I had, then I started noticing my hair thinning. It was gradual at first, then started coming out in clumps. However, before that started, the hair that had been shaved and the bald patches started to grow in. So the entire back of my head is about 1.5″ long and curly. Where I used to have bangs is hair about 1/2″ long that sticks straight up, and on the sides, it is very short and black! The hair in the back is light brown. lol Fortunately I have no actual bald spots but I do look rather silly. I remind myself of one of those Halloween witch hats that have a few strands of yarn hair on the sides.

I did get a wig a few months back, and it’s ok to wear. I guess I’m just more curious to know if I will ever have hair again. I didn’t think Tarceva caused hair loss to this desgree. Although, the thought of it being stress related could be right on the mark.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

February 4, 2013 at 9:11 am  #1253389    

aunttootsie001

It wasn’t fun when I lost my hair but I acquired a love for Hats! My Favorit was a Fadora. It was Winter when I lost the majority of my hair, actually when I knew it was going to fall out I went to my Stylist to have it cut to 1/4 in. But I still was seeing it fall out right in front of my eyes. Like leaves from a tree. So I had my husband shave it all off. In the cold weather I would wear a wide headband under a Fadora! Was kind of cute! I maybe 67 in age but I am very Young at heart so a bandana was not my cup of tea. I became obsessed with Hats. I must have almost two dozen. I still wear them. Walmarts has some cute Fadoras and very inexpensive. Have fun with them I do! I even got so used to the Short hair I now have trouble letting it grow. I get it colored tomorrow and I think I’m going real short again. I had a lot of curl at first and I really miss the curl! Lorrie.

February 4, 2013 at 11:10 am  #1253394    

Sherry

Lorrie I love the look of women with cute hats, etc., but that look does not work for me. I always thought that hats made my face look more like the size of a basketball. I am planning to go get the last few long strands cut off and get a super-short cut. I had the flu for 2 full weeks and haven’t been able to get out to get it done.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

February 4, 2013 at 11:55 am  #1253395    
catdander forum moderator
catdander forum moderator

I think you’ll love a new trimmed look. My husband never lost all his hair and I loved his super short thin look, I styled his hair for a couple of months. It’s grown back now and he just looks like a hippie with tarceva curls on the ends.

February 4, 2013 at 10:28 pm  #1253438    

laya d.

Hi Sherry. . .

My Mom also had some hair loss while on Tarceva. . .but, she had A LOT of hair loss each time she went under general anesthesia (for about 2-4 weeks). I don’t know what the correlation is (of if there even is one – – maybe it was just coincidental)…but her hair used to come out in clumps every time she went under…

Just a thought. . .

Laya


1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.

February 6, 2013 at 11:54 am  #1253485    

aunttootsie001

Sherry you may feel if fervent now! I was never a Hat person either! But rather than go around bare headed or with a bandana I tried the Fadora! They are fun! At any rate whatever makes you feel comfortable is what counts!

February 6, 2013 at 2:46 pm  #1253491    

gn21

I went on tarceva in August 2009 as part of a clinical trial and lost all my hair in the October. Drs were surprised but not astounded. Hair has come and gone since then, mostly gone, so I am now over 3 years without a full head of hair. It’s starting to grow again now as I am off tarceva and tarceva type drugs, and one day I may have to shave my legs again. I didn’t like the idea of a wig so wore caps most of the time, but sometimes I dared to bare. I was never too sure whose sensitivities I was protecting.

Am on carbo/alimta at the moment. Have done two cycles, and noticed stray hairs on my pillow slip this morning!

Oh, and hair that has grown back is softer, darker and curlier that before.

Gail

February 6, 2013 at 7:04 pm  #1253498    

ssflxl

I am on Tarceva 50mg daily and notice lack of hair growth on my legs and underarm so I hardly have to shave. the little hair I have in these areas are thin/wimpy. I don’t notice a lot of hair loss, but just lack of healthy growth of hair – I think that’s partly due to my scalp rash – can’t have much hair growth since my scalp is frequently red/inflammed!! Another thing I found is that my hair is now very, very dry, just like my skin. I used to have very healthy, soft, full hair. Now, my hair is frizzy – feels like the bristles of the broom!!! It feels prickly when I run my hand through my hair. I have just discovered an oil – camilla oil, that moisturizes my hair very well. Believe me, I have used different types of hair conditioner, and even conditiioner that you leave on after shampoo. None of them moisturize as well as this oil. Where I have hair growth on my scalp – it’s more like peach fuzz.

ssflxl


Non smoker Asian F, St 4 NSCLC – 11/2010, 6 cm LUL mass, met to paraspinal muscle, +EGFR at Exon 21 L858R. Tarceva in 11/2010, rad to lung mass and met. 5/2012 – PET showed inc SUV in primary cancer, new 1.6 cm lesion in left thoracic inlet causing Horner’s syndrome. Cyberknife to lesion – 5/2012. Restarted Tarceva 75mg/day -5/12, reduced to 50mg. 8/12 – PET- thoracic inlet lesion gone. 11/12 PET – inc SUV in primary tumor, ant mammary node, some SUV uptake in a fibrotic area in apex. Biopsy of this showed fibrosis and scant atypical cell. Cyberknife to mammary node, continue Tarceva. PET-10/13 – incr SUV to 14 in left primary tumor and new 1cm nodule in LUL, no new symptom. 12/13 – biopsy of LUL- same Exon 21, L858R – ?no T790M. on Tarceva 75/50. 1/14 PET – not much change. 2/14 – arm pain, cough, sob. CT – inc tumor to 5.5×5.9 with LUL collapse. 2/14 – Carbo/Pem x6. 4/14 PET – dec SUV but new bony lesions. PET in 6/14 – stable. start Pem every 3 wks in 7/14, Pamidronate every 6 wk.

February 7, 2013 at 8:18 am  #1253510    

Sherry

Thank you all so much for taking the time to answer me. Where my hair was shaved for my surgery is growing in nicely, but I still have so many thin spots. I’m not bald, but it is a shock to see hardly any hair every time I look in the mirror. I had my daughter cut off the “witch hat” hair . It’s so short. When I was about 6 my mom was a major Twiggy fan so she had my hair cut super short. I cried for days. Well, now I have Twiggy hair again. ;)


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

February 8, 2013 at 1:11 am  #1253568    

certain spring

Interesting comment from Gail: “I was never too sure whose sensitivities I was protecting.”
I lost all my hair after whole brain radiation. The really bad moment – among a lot of bad moments – came when a small child in the changing rooms at the swimming pool said “Mummy, is that a man?” After that I was very reluctant to go out without a wig or (when it got to winter) a Cossack hat, to which I am still devoted.
I think it stirs up a lot of fears: loss of identity, loss of femininity, the sense of being labelled as a cancer patient – you name it. My husband was very good about it, and that helped.
Sherry, I thought this might be useful, as it covers some other possible reasons for your hair loss:

http://www.bbc.co.uk/health/physical_health/conditions/hair_loss_women.shtml

I think stress – and hormonal changes – can play a big role.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

February 9, 2013 at 1:30 am  #1253616    

gn21

My ‘out of the mouths of children’ story was a young boy, with long hair, in the supermarket. He looked at me then said to his mum ‘see, she’s allowed to have short hair. Why cant I?’

Gail

March 31, 2017 at 3:51 pm  #1290490    

celineg

So I have a question about wigs (because it is becoming more obvious that I need one).

I am very concerned with the wig being too “wiggy”. The very unnatural look.

From what I have read, there seems to be a lot of things to consider beyond just getting a “good wig”. It is very hard for me to tell what is actually worth the money.

Does price usually mean quality, or are there other things to consider?I know there are certain ways the wigs can be made, like from human hair or synthetic, but I also see there are other things.

I was trying to figure out what this was:http://www.godivassecretwigs.com/monofilament-wigs/

And if it was different from the lace thing that I see all over the place. It is just hard to understand what a sales term is, and what the product is actually doing.

I like the idea of a transparent scalp, but is there a different name for this product that is cheaper?

April 2, 2017 at 9:23 am  #1290498    
JimC Forum Moderator
JimC Forum Moderator

Hi celineg,

There are many other monofilament wigs, including some that can be obtained through the American Cancer Society. You can call your local ACS office to see if they have any donated wigs at no cost (our local office had quite a few; they are new wigs purchased and donated to the ACS), or they have a catalog page from which they can be ordered: http://www.tlcdirect.org/womens-wigs-and-wig-collections From what I saw, the monofilament wigs were in the Raquel Welch collection.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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