Was on tasigna for 3 years 4 days, and my thick long hair has gradually gotten thinner. Stopped tki 4 Days ago, hair is falling out at a much more rapid rate. Tired of seeing long stands literally come out by the"bulb".....wondering if shaving it (beenie season is upon us;) and seeing if it grows in differently without tki? Or boy short? Input? Also does sprycel have this hair thinning affect? Little sad today not going to lie:(
hair issue getting worse after 3 years on tasigna? ??
Started by
Frogiegirl
, Nov 12 2016 03:26 PM
16 replies to this topic
#1
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 12 November 2016 - 03:26 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.
#2
gerry
-
- Members
-
- 1,035 posts
Advanced Member
Posted 12 November 2016 - 04:33 PM
Your hair growth will return to normal now you are off your TKI. The tkis slow down the regrowth rate. Gleevec wasn't as bad for this as the Tasigna, but I didn't have to do my legs as often. :-)
#3
tiredblood
-
- Members
-
- 474 posts
Advanced Member
Posted 12 November 2016 - 07:55 PM
I'm at the three year mark too and mine is starting to come out again, even at 150mg twice daily. It did improve greatly the three months I was off of it-- started feeling like real hair again and it thickened up. Every time I get a haircut, the length in the back never seems to get any longer and the top grows, although very thin on top. Honestly, I miss my hair.
#4
steelpony5555
-
- Members
-
- 40 posts
Advanced Member
Posted 12 November 2016 - 10:35 PM
Mine is starting to come back even on full dose of Tasigna. Hair on my legs totally gone and hair on my head started thinning and pony tail got shorter. No loss of beard hair or on my arms....but past week or two I have noticed hair on my legs coming back....but then my side effects come in waves.....
#5
jmoorhou
-
- Members
-
- 314 posts
Advanced Member
- LocationOutside of San Francisco
Posted 13 November 2016 - 01:53 PM
Have you had your thyroid checked?
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#6
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 13 November 2016 - 06:36 PM
Yep I've had my thyroid checked. ....it's been a little while though. I wonder how quickly that can change?
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.
#7
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 13 November 2016 - 08:16 PM
my thick long hair has gradually gotten thinner......wondering if shaving it (beenie season is upon us;) and seeing if it grows in differently without tki? Or boy short? Input?
Just let it work out on its own. No need for any additional drastic changes.
#8
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 13 November 2016 - 08:39 PM
Sir Trey you are definitely my voice of reason. I came so close to taking the kitchen scissors to it. .... I knew I would regret it, but I was extremely upset! I'll wait it out a bit more see if anything changes:(
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.
#9
Buzzm1
-
- Members
-
- 972 posts
Advanced Member
- LocationSilicon Valley
Posted 13 November 2016 - 09:03 PM
I consider my hair situation the "new normal." If it improves, great, otherwise I'll just have to live with it.
The first thing I complained to my new onc about, over six years ago, was that my hair was falling out. She looked me in the eye and asked, "can you live with it?"
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
#10
tazdad08
-
- Members
-
- 141 posts
Advanced Member
- LocationTennessee
Posted 14 November 2016 - 09:04 AM
I agree so much with Trey. Dont traumatize yoursefl anymore than you have to. Especially with so mant changes in the future!!! :-)
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
#11
jmoorhou
-
- Members
-
- 314 posts
Advanced Member
- LocationOutside of San Francisco
Posted 14 November 2016 - 02:31 PM
I know this is a big deal to change TKI's but have you thought about Gleevec, is hasn't affected my hair at all. I put up with the GI issues which come and go.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#12
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 14 November 2016 - 04:54 PM
Jmoorhou I've thought about that when and if I go back on a tki.....it's all a guessing game? ??
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.
#13
jmoorhou
-
- Members
-
- 314 posts
Advanced Member
- LocationOutside of San Francisco
Posted 15 November 2016 - 02:33 PM
I take D Mannose every day for what I think was a chronic UTI caused by Gleevec, now I don't have to take it everyday. If I take Gleevec a little over an hour after dinner, there are very little GI issues, and no PE yet which scares me about the other TKIs.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#14
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 05 December 2016 - 02:53 PM
Thought this was intresting. First pic is hair loss at 2 days before going off tki. Also a 5 day break in between before washing. Second pic is from today....8 Days since washing last and 27 days off tki. Also just received bcr-abl and got my first pcru off tki. Fingers crossed Y'all!Fyi sorry if hair balls gross anyone out, I've heard worse on here with the sharting and ground beef enemas......
PhotoGrid_1480967176158.png 1.31MB
6 downloads
PhotoGrid_1480967176158.png 1.31MB
6 downloads
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.
#15
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 05 December 2016 - 03:53 PM
Frogiegirl - You crack me up. I clicked on the hairballs and got them before me full-size and seriously analyzed them, thinking what they could tell me and how I might comment for you. Then I started laughing. We are all truly desperate nutters, aren't we? I totally get your freakout regarding the hair and I am a vote for it all being the fault of CML and TKI's. Why not? But it made me remember a chilly day at the playground about a zillion years ago. I was pushing the first one in a swing, so he had to have been under 4. I noticed my head was cold. I had never worn a hat or a scarf for the cold since I was forced to as a kid. But now, I distinctly remember putting my hand up to my head and thinking, geez, where's all my hair gone?!? So, I was 30 years old when it began to change. I still had decades of gorgeous hair left (not bragging, just the facts), but still, Time had tapped on the window. I investigated the thyroid angle, since I had had to have mine out, but no dice, that wasn't it. So, yours could just be "old age" - LOL. But let's be cheerful and believe that now you're off the stuff, the hair is going to come bashing on back. Congrats on the PCRU btw.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#16
gerry
-
- Members
-
- 1,035 posts
Advanced Member
Posted 05 December 2016 - 05:16 PM
Try to forget about the hair, some of it is still in hiding. :-)
Congratulations on the negative, now we are just waiting for a good news positive.
Congratulations on the negative, now we are just waiting for a good news positive.
#17
Buzzm1
-
- Members
-
- 972 posts
Advanced Member
- LocationSilicon Valley
Posted 05 December 2016 - 05:44 PM
just received bcr-abl and got my first pcru off tki.
Congratulations Frogiegirl ... hopefully just the first of many more to come ...
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
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
