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#1 MsLaLa

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Posted 16 December 2015 - 09:03 PM

It's been awhile since I've logged in. So I've been doing well on Sprycel. I did have some Pleural effusion but thankfully it cleared on its own now I've noticed alot of my hair shedding. Quite depressing being a woman. Does anyone else experience this. Does the shedding usually slow down?
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#2 scuba

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Posted 16 December 2015 - 09:54 PM

It's been awhile since I've logged in. So I've been doing well on Sprycel. I did have some Pleural effusion but thankfully it cleared on its own now I've noticed alot of my hair shedding. Quite depressing being a woman. Does anyone else experience this. Does the shedding usually slow down?

 

Have your Thyroid checked:

 

http://www.ncbi.nlm....pubmed/20929406

 

Second generation TKI's are known to affect thyroid function. Your oncologist should be testing your TSH, T3 and T4 levels. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 mlk210

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Posted 16 December 2015 - 10:37 PM

I had a lot of hair fall out early on. It was everywhere. On me, my couch, the lint compartment in the laundry. My kids would think it was fun to pick it off me. I also had some thyroid issues as well though. The hair loss was never noticeable and slowed down around 6 months.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#4 MsLaLa

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Posted 17 December 2015 - 07:49 AM

I have underactive thyroid so it gets check often. I praying this hair loss slows down. I've been on Sprycel about 2 1/2 months and this is just starting.I notice it mostly combing or brushing my hair.
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#5 scuba

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Posted 17 December 2015 - 09:14 AM

I have underactive thyroid so it gets check often. I praying this hair loss slows down. I've been on Sprycel about 2 1/2 months and this is just starting.I notice it mostly combing or brushing my hair.

 

Has your thyroid been checked in the last 2.5 months? If not - chances are the Sprycel is making your underactive thyroid worse. 

 

My wife has gorgeous very thick hair. A few years ago, her beautiful hair started to fall out and thin. As it turns out, her thyroid was slowing down (normal aging supposedly) and becoming 'hypothyroid'. She was prescribed appropriate hormone replacement and her hair came back better than ever. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 Harper3994

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Posted 17 December 2015 - 01:34 PM

I am on Tasigna since July. Used to have very thick coarse hair. Now it is thin and very fine. Also have lost most of my eyebrows. I really hate the side effects of this med.

#7 rcase13

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Posted 17 December 2015 - 01:38 PM

Yes but on the plus side we use less shampoo! :)

Sorry it's the only positive I could come up with. Trying to be positive!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#8 scuba

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Posted 17 December 2015 - 02:04 PM

Yes but on the plus side we use less shampoo! :)

Sorry it's the only positive I could come up with. Trying to be positive!

 

... and drying time is faster!


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#9 rcase13

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Posted 17 December 2015 - 06:30 PM

Yes, my wife who has a ton of hair and takes forever to dry loves to point the hairdryer at me for a second and say done!!!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#10 DebDoodah22

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Posted 22 December 2015 - 06:18 AM

My hair which was fine to begin with has thinned substantially....lots down the shower...but I have been on Sprycel for 25 months. It seems to have stabilized as far as shedding goes but it also does not seem to be growing back. I keep having thyroid checked but so far it's normal. And the other issue has been skin changes...hair needs washing more frequently and that's not helping....so far, nothing product-wise makes much improvement. I am kinda resigned to it, but if you discover anything that helps...please post here.

#11 Harper3994

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Posted 22 December 2015 - 08:26 AM

I was told to take Biotin and I also take a B-Complex vitamin everyday. Worth trying.

#12 KerriD

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Posted 22 December 2015 - 12:37 PM

Shortly after diagnosis and starting Tasigna , my hair got thin.  I had long hair at the time and it just looked  stringy, my eyebrows were nearly gone and the hair on my arms and legs and other places were gone.  The good news is after time, most of it is back to how it was pre-CML.



#13 Frogiegirl

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Posted 22 December 2015 - 05:34 PM

KerriD can I ask how long before it returned to normal...im over two years in and its still shedding :(  also take biotin for almost the whole time.


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#14 Busa

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Posted 22 December 2015 - 07:23 PM

I still have the same amount of hair, the only problem is it has fallen off of my head, landed on my back and taken root.  I've got an ingrown mustache, and well let's just say the hair growing out of my ears needs to be braided. 

 

So all in all, I'm happy!!

 

I'm such a babe magnet :)



#15 Billie Murawski

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Posted 23 December 2015 - 03:12 AM

Ever since I got my iron built up and I take vit B-12 1000 mg I can't believe how much my hair has thickened. I swear by it!



#16 tiredblood

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Posted 24 December 2015 - 06:32 PM

I tried biotin for a while. It didn't help my hair, but my fingernails were hard as rocks.




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