30 replies to this topic

[Frogiegirl]

My doctors pharmacist never got back to me today.and I would really like to start adding saw palmetto to my normal regimen.have you heard anything bad about it? bottom line. ...I wants meee hair back; )

[Trey]

You can take it.  But unless your hair loss is related to excess testosterone I doubt it will help.  Passage of time will bring your hair back as your body finds a way to adjust. 

[Billie Murawski]

Froggie, 2000iu of B12 really helps me especially if I eat properly or maybe it's a combination of both I just got my hair cut yesterday and my beautician was really impressed with how much thicker it was. Before cml I had thick hair.  Billie

[Frogiegirl]

I had very thick long hair before cml......my boss said "at least you have a pretty face".....so nice of him:(sarcasm) I'll try it. ...I'll try just about anything......

[Dona_B]

Froggie Girl,

Saw palmetto is on the National CML Society's potential interactions list.  Occasionally I will drink green tea which is also on their interaction list and it aggrevates my back but still I do because it has to be better than soft drinks for caffiene. LOL.

 

"There are additional herbal products that interact with TKIs, however the exact interaction has yet to be fully determined. It is suggested that you refrain from the use of the following herbs due to the potential to cause adverse reactions:

Dong quai
Garlic
Genistein
Gingko
Gingko biloba
Ginseng
Ginseng, Siberian
Glucosamine chondroitin
Green Tea
Saw palmetto
Teas (dandelion, pepperment, chamomile) " from National CML Society"

 

http://www.nationalc...od-interactions

 

If you do try the saw palmetto and it doesn't seem to bother, let me know. My hair is getting fine, fly away, and brittle. I'd have it all cut off but the idea of spending money on regular hair cuts is more than the german side of me can justify.

[Trey]

Personally, I do not think that list is accurate unless a person ingests them by the pound.  And the case against things like green tea is a stretch of logic.

[rcase13]

You have to wonder how they got on the list in the first place.

[snowboots]

Don't know about the saw palmetto but like you I am willing to try anything at this point. My onc insists that my hair loss is NOT from the Gleevec, but I know he is wrong. Had my thyroid tested to prove it wasn't that. Then went to a dermatologist who says it definitely IS from the Gleevec combined with stress. Gosh, does my onc really know anything about CML???  Anyway, the derm gave me an anti-fungal shampoo that she says will help stimulate the hair follicles. Also gave me a B12 shot to give it a jump start. Also taking 5000mcg of Biotin daily which I understand is a form of B vitamin. My nails look great now but I don't know if any of it is helping my hair. I'll keep you posted. Still no hair on my arms, but I think my eyebrows are coming back a little. I have been trying to keep as much of my hair as possible, but my ears are starting to stick out through my hair and I am starting to look like one of those Mexican hairless chihuahuas with a little tuft of hair on top, so I see a very short cut and a hat in the near future. 

[Frogiegirl]

Snowboots you crack me up! What is the name of the shampoo? Ketoconazole? I was Givin the same thing from my derm. I KNOW my hair loss is from the tki....I hate that it's in question.....I try to look at the bright side as much as possible or I'll drive myself crazy! I don't have much more to lose:(

[snowboots]

The name of the shampoo is Ciclopirox 1%. You lather up and leave it on for 3 minutes. Hair is still coming out by handfuls in the shower. Flipping through channels last night I came across QVC selling a laser comb. Anybody ever try that? I think just stressing out over losing my hair is probably making it worse.

[dede5]

When I first started taking the TKI, I didn't lose all of my hair, but started to get the Ben Franklin look. I personally think that was worse. Good news is, 4.5 years later, it's pretty much all come back. 

 

That being said, I would avoid all the gimmicks out there that promote external hair growth remedies. Can't speak for the internal ones because I don't know how far science has progressed with those.

[Trey]

Prescription shampoos such as Ketoconazole and Ciclopirox are not intended to stop hair loss.  In fact they can have the opposite effect in some people.  These two shampoos are for scalp fungal infections and seborrheic dermatitis.  I'm not saying to avoid them, just pointing out the intended usage.  The shampoos are also intended for infrequent usage (about twice a week and only for a couple months).

 

Overall it should be remembered that this is not permanent hair loss but a faster turnover in hair.  The net effect may be thinner hair, especially for those with longer hair, due to the faster replacement cycle.  But as mentioned above time sorts out this issue for most.

[Gail's]

Snow boots, I'm also surprised at the gaps in understanding my onc has of the quality of life issues the disease &/or drugs have on us. I understand they have information overload but wish a little more humility came to the forefront when asked about symptoms we experience. It really hasn't taken much research at all for us to learn that some symptoms we have are from the drug/disease. I only wish my onc would at least say "let me check on it" rather than taking such a firm stance that these are all not an effect of the meds.

[JBow82]

I feel like I've done it all, from topical shampoos/sprays like Nioxin to herbal supplements. Right now I'm taking vitamin B complex and biotin. I don't think it's making a difference but only time will tell. Has anyone tried prenatal pills? Also, a nice hair cut always boosts my confidence... but I really miss my messy pony tails

[Frogiegirl]

Snowboots I bought a theradome head light helmet.......ummmmmm cost me 1k.ummmm it felt like it dried my scalp and made it itch worse. ...uhhhgggg. thanks for the info on the shampoos trey. I'm going to rethink using it:)

[Billie Murawski]

I stopped washing my hair everyday,Now I do it every other day.

[jmoorhou]

I've always had thick hair, and it still is thick, but getting a little thinner..same amount of hair but thinner.  Have you tried having your thyroid checked.  I use tea tree shampoo you can get it at Ulta, or a generic at your local beauty store.

[Billie Murawski]

Hey Mt. Tee, You know what they say (God only made a few perfect heads,the rest he put hair on).  Billie

[AllTheseYears]

Yes, at last, validation!  I totally agree that TKIs (at least mine) wreak havoc on your hair!  Mine is like a weird Brillo pad....what's left anyway.   My regimen of Biotin helps and I might add more B12.  I wear hats often (even designing and making my own), and have found that coloring my hair to a darker shade created the illusion of thicker hair.  I had controlled thyroid disease long before my CML diagnosis.  My hair issues began noticably

 

Snow boots, I'm also surprised at the gaps in understanding my onc has of the quality of life issues the disease &/or drugs have on us. I understand they have information overload but wish a little more humility came to the forefront when asked about symptoms we experience. It really hasn't taken much research at all for us to learn that some symptoms we have are from the drug/disease. I only wish my onc would at least say "let me check on it" rather than taking such a firm stance that these are all not an effect of the meds.

 

 after diagnosis and Gleevec. 

 

As for the oncologist who made the flat denial...didn't you lose a little respect for him/her?  There's a lot of facts a doctor can't read in a book.  Hey, dude, why don't you just LISTEN?

[sunshineC]

I had the same results with my hair, and my first onc.  I finally had to cut my long hair last fall.  It seemed as soon as I did, it stopped coming out.  It remained that way for months, and now has started coming out again as bad as the beginning.  I don't think I did anything different for those months when it stopped/started.  I have no idea; just know it sux!!