23 replies to this topic

[clancydog]

i know i asked about this awhile ago ..but i'm trying to rule everything out so i can figure out what is going on.

i started sprycel in july and i had immediate hair shedding ,it is now january and it has not stopped..

has anyone else experienced this??

i just want to figure out if it is for sure the sprycel and then figure out what my options are.

thanks so much for any info you may have..

best,

ingrid

[jrsboo]

I will try again, now hours later, computer would NOT let me answer you.

I have been losing hair like crazy on Sprycel.  You can see through my bangs to my scalp.  I am filling a hairbrush a day plus another couple of handfuls in the shower.  Luckily I started with very thick long hair, but it is very distressing. 

I have been on Sprycel for 3.5 months, never on Gleevec or Tasigna.

I also have lots of skin issues, mostly what my Onc calls "angry hair follicles", so I am assuming that that is why all my hair is leaping off my head. 

I am also losing a lot of body hair, very little left on my legs and arms.  And what is left is very thin, fine and blond (I have very dark hair). 

So, I am saving on razors..............tee hee.

Caroline

[starlago]

.I began Sprycel last February (first line of defense) and my hair began thinning soon after.  Sometime in late summer/fall, I noticed new growth, albeit white, but through the miracle of modern science, I remain a blonde.  Give yourself some time; others on this board have had the same problem and most (many) have seen the hair loss reverse itself.

[Trey]

Clancydog,

Maybe "clancydog" and shedding are related somehow?

Anyway, here is a previous discussion about TKIs and hair loss:

http://community.lls...age/76872#76872

[clancydog]

haha..funny trey !!

thanks for all of your input ..it feels so vain considering what some people go through but it's very difficult i think for most of us..i'm a 40 year old female actress so losing my hair is a huge drag ..

i was on gleevec for three years and reached PCRU but eventually decided to change because of side affects..a rash that wouldn't go away,fatigue and funny enough ,hair loss. i went off all drugs for 2 months and then started sprycel ..my hair started falling out almost immediately and way worse than before.

i'm just trying to rule out everything else that could cause hair loss..i guess it must be the sprycel ??

my doc says i can try tasigna but sprycel has been good for me (other than the hair loss) and if i know it's going to stop eventually i could handle it.

so hopefully it will stop soon..i'll let you all know .

and thanks sooooooo much for your support.

best,

ingrid

[eeyoresusieq]

I was diagnosed in 2008 and my hair started thinning and breaking off and is brittle and dry.  I am on Sprycel now and it seems to be getting better.  I never use a brush - I used a large toothed comb and I also use Palmer's Olive Oil formula Replenishing shampoo and Replenishing conditioner - my hair feels so soft and silky when I use this.  You can buy it at Walmart - a beautician told me he recommends it for his patients that have cancer.  Hope this helps.  

[clancydog]

hey caroline..

sorry to hear you are going throught this as well.

how long did your hair start falling out after being on sprycel ??mine seemed immediate.

hopefully it will stop for both of us.

i started out with fine hair so i don't have alot to begin with !

take care..

ingrid

[Marnie]

I just started Sprycel (after 20 months on Gleevec).  I've not noticed any hair issues, although I've only been taking Sprycel for less than a week, and only at half dose.  Yesterday was my first full dose.  I'll let you know if I notice anything.  I'd sure hate to see you switch off of Sprycel, since it seems to be working well for you, if Sprycel is not the cause of the hair loss.  On the other hand, side effects seem to affect everyone very differently.  Seems like there was a discussion earlier about stress playing a big role in hair loss.

Good luck,

Marnie

[jrsboo]

Dear Ingrid,

It started almost immediately for me too.  I am stupidly sensitive to drugs, and everything affects me funny.  I get all the weird side effects that the don't even put in the big letters, only the smallest letters on the insert with the drug.

I haven't found anything that helps, other than to just try and blow dry my bangs in a certain direction so you can't see through to my scalp.  I am also having lots of other skin issues.

Sigh.  It is very hard to keep one's spirits up with this disease, isn't it?  It seems to keep hitting me at the strangest times.  And I have to just wait for the panic or sadness to pass, then do something that I enjoy.

On the other hand, Sprycel is working very very well!  I started out in Sept. with a FISH of 5% and last week it was down to .05%.  I think that that is really really good results, and I don't have plans to switch medications any time soon. 

My next BMB is in 2.5 months, and we will see what that says.  But I also just graduated from every 2 weeks at Seattle Cancer Care to every 4 weeks!  Woo Hoo!  Less time with the vampires in the lab!!!

Caroline

[clancydog]

hi caroline..

well i am so glad you are responding so well to sprycel.

and it seems that side affects do settle so i really hope they settle for you. they just seemed to get worse for me on gleevec but sprycel seems to be different in that way.

yes..all of this adds an extra challenge to ones life..but i guess we could be so much worse off. i usually try not to think about it too much . i take my meds ,treat myself very well and keep moving on . the stubborn part of me is trying not to let this disease slow me down ..there is so much i want to do in this lifetime !

i hope you don't get too discouraged with the hair and skin issues..i'm sure it will get better for us.

and if i discover anything i'll let you know.

best,

ingrid

[clancydog]

thanks marnie..

i know, i really don't want to switch drugs since my response on sprycel is good.

i guess the hair loss could be stress..but it got bad as soon as i started sprycel . we adopted a baby last year, which has been the most wonderful thing but there has been alot of changes in our life.

i hope sprycel goes well for you..it's definately nice not to be as puffy and tired as i was while on gleevec.

take care,

ingrid

[jrsboo]

Dear Ingrid,

Thank you for the kind thoughts.  I think that I will eventually be better about all of this.  The side effects are dying down, and now I am working on the best time to take the pill.  It seems if I take it at night, I am up all night with feet that are burning hot.  So my Onc said to take it in the morning..........and it makes me sleepy all day long.

Sigh.  How can that be?  Is there something about Spyrcel that is just contrary?  It looks deep into my soul and figures out what will piss me off the most?  Oh well.  I am bigger than a tiny little pill, and I will win!

Congratulations on the adoption!  I do a lot of adoption work in my law practice, and is the happiest thing to do!  It is the only time you show up in court and the judge is truly happy to see you!   I try to set all my adoptions in front of my favorite judge, she does such an amazing ceremony, really putting it all in perspective about what it means to be a family.  How the big issue is the choice to have a family, not how it comes about.  And that the children are so lucky to be chosen by parents who have so much love to give.

Many happy and wonderful years raising your bundle of joy.

Caroline

[clancydog]

caroline..

how long have you been on sprycel ??

[jrsboo]

Since late September.  I was diagnosed and put on Sprycel right away, before it was approved for first line defense, but my insurance covered it anyway.  Onc thinks they knew it was about to be approved.

Caroline

[clancydog]

sprycel for me was quite brutal at first so hopefully it will get better..my fatigue is way better then when i was on gleevec .

you are dealing with alot right now..a new diagnosis and a drug you are getting used to..just keep the faith that you are going to be ok and be gentle on yourself.

thanks so much for the well wishes about our daughter..if it wasn't for CML we probably would never have adopted so i am actually thankful for the disease as she is the biggest ,sweetest gift ever.

this life is weird but often beautiful .

take care..

ingrid

[jrsboo]

Thank YOU for the kind thoughts, and sharing your story too.  It is so helpful to hear other's experiences, it does make me feel less alone. 

Caroline

[clancydog]

also..do you take sprycel with food??

it really helped to reduce my side effects,

[acb]

Ingrid,

I didn't read all the responses, so please forgive me if I am repeating. I was diagnosed in July 2010 and started on Sprycel at that time (even though it wasn't FDA approved yet). I had serious thinning and hair loss up until a few weeks ago. It has pretty much stopped falling out and I can see some new growth as well (mostly grey unfortunately!). I went months without getting it cut or colored/highlighted because I was afraid of what it might do. After I got it cut and colored with a very gentle semi-permanent color and highlights, I started using a more expensive salon-recommended shampoo. After all of that is when it stopped falling out. Not sure if it stopped because of any of those things or just because.

Hope your hair does like mine soon. I didn't realize how much internal stress it was causing me until it was resolved. I don't dread taking a shower and washing my hair anymore!

Aprill

[jwbwater]

Let me start off by saying I have not experienced this side effect so I cannot offer any experimental evidence on the subject, but I've been on a cancer reading binge since my last BMB.  I'm currently reading "Natural Strategies for Cancer Patients" by Russell Blaylock and I just hit a section talking about hairloss.  Keep in mind that this advice is intended for patients undergoing conventional (aka brutal) chemotherapy, but maybe it would help for TKI induced hair loss also.  So here's his advice:

- Avoid harsh shampoos especially those containing sodium lauryl sulfate.

- Dry your hair naturally or with a hair dryer set on low heat.

- Wash your hair every other day rather than daily.

- Take 3 mg of biotin twice a day throughout your treatment and for two weeks afterward.  Then cut back to 3 mg once a day.

- Take a multivitamin-and-mineral capsule every day.

- Take 400 IU of vitamin E succinate three times a day.

- Take 500 mg of quercetin three times a day with meals.

- Take 500 mg of hesperidin three times a day with meals.

- Take 500 mg of curcumin three times a day.  Dissolve the contents of one capsule in one teaspoon of extra virgin olive oil.

- Take 100 mg of decaffeinated green tea extract with each meal.

Obviously this is a bit on the complicated side, but you can't fault him for not being specific enough! 

I can't comment about the biotin, vitamin E succinate, or hesperidin, but I'm taking quercetin, curcumin, and green tea exctract with Tasigna and haven't noticed any negative effects.  But then so far I haven't responded especially well to TKI therapy either!

I hope someone finds this useful

[jrsboo]

Dear Jim,

There is a link somewhere to the Canadian CML Society that talks about food interactions and which foods to avoid while taking the TKI's.  And Green Tea is one of them.  If I remember correctly, there is something about anti-oxidants that is not so good for us.  I don't think we need to avoid them, but I think we were not to go bonkers and ingest a great deal more than a normal diet would have.  But I cannot remember where I picked that up from. 

Trey?

Caroline