Sooo I'm considering a hair transplant. I have no idea if this would just be a waste of money because it's the tki causing the thinning. I did however have my thyroid checked and all came back great. My bf said he would be my doner if they allowed that....that way they are not taking from Peter to give to Paul if that makes sense?
Trey can I take saw palmetto for my hair loss?
Started by
Frogiegirl
, Jul 21 2015 06:14 PM
30 replies to this topic
#21
Frogiegirl
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Posted 19 August 2015 - 08:31 PM
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.
#22
Billie Murawski
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Posted 19 August 2015 - 08:53 PM
Frogie, Try to be patient it will grow back. If your friends family has a history of male pattern baldness I would consider another donor.
Baby your hair use wide tooth combs don't shampoo everyday and don't brush it a lot. I hated having to get my hair cut short but I'm glad I did I can now wear it longer and I believe that the b12 has really helped me, plus my anemia is now under control. I didn't think there was such a thing as hair transplants. Don't lose it yet or you'll end up sounding like me!!! Decorate baseball caps they are pretty cute and good for bad hair days for everyone. Lots of sequins 
Billie
#23
Billie Murawski
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Posted 19 August 2015 - 08:57 PM
Sunshine, Have you had your iron checked, it's not normally done with our standard bloodwork for cml I guess it's called a ferritin test.
Good Luck Billie
#24
Trey
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Posted 19 August 2015 - 08:57 PM
Bad idea. You are not losing hair follicles. The hair just falls out and then grows back in the same place, but is shorter as a result. Implants are used to replace dead follicles. Implants would likely fall out, too.
#25
Frogiegirl
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Posted 19 August 2015 - 11:05 PM
http://neograftutahhairmd.net/ trey its pretty amazing what they can do. The video at the bottom explains the process. It's done by a machine.... https://youtu.be/ntQQihdBnX4
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.
#26
gerry
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Posted 20 August 2015 - 02:05 AM
The hair is still there hiding under the surface - mine came back once I once I stopped the TKI.
#27
Buzzm1
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Posted 20 August 2015 - 02:11 AM
The hair is still there hiding under the surface - mine came back once I once I stopped the TKI.
I'll be looking forward to it. Always had great hair ... until the TKI ...
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#28
Frogiegirl
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Posted 20 August 2015 - 11:10 AM
Gerry forgive me for asking. ...but how long have you been off the tki? (Chemo fog) plus I'ma member of C.R.S (can't remember shizzzzz)
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.
#29
Anti-Matters
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Posted 20 August 2015 - 11:19 AM
My hair is thinner, but it was headed that way when all this started. What's odd is it seems wavier lately.
#30
Frogiegirl
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Posted 20 August 2015 - 11:20 AM
Mine is also waivier and brillo like......
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.
#31
gerry
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Posted 20 August 2015 - 05:53 PM
Gerry forgive me for asking. ...but how long have you been off the tki? (Chemo fog) plus I'ma member of C.R.S (can't remember shizzzzz)
I've been off 21 months now, took about a year for it to return to normal. The TKI seemed to slow down the regrowth of my hair.
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