Is it permanent does anyone know?
Hair loss with Sprycel and Tasigna
Started by
jmoorhou
, Mar 05 2016 11:28 PM
12 replies to this topic
#1
jmoorhou
-
- Members
-
- 314 posts
Advanced Member
- LocationOutside of San Francisco
Posted 05 March 2016 - 11:28 PM
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
#2
pammartin
-
- Members
-
- 631 posts
Advanced Member
- LocationPennsylvania
Posted 06 March 2016 - 08:23 AM
I lost quite a bit of hair on Sprycel. More on the left side than the right. I finally put 3\4 in. guard on clippers and cut it all off. It took a few months but it did grow back in. If I remember correctly from Trey's posts, the hair falls out but does not destroy the hair follicle, just stunts it for a time and then regrows.
#3
Harper3994
-
- Members
-
- 56 posts
Advanced Member
- LocationTrinity, Florida
Posted 06 March 2016 - 11:25 AM
I too lost some hair on Tasigna..also my eyebrows. My hair has come back but baby fine! Used to be very thick and course. Eyebrows came back much thicker! Very strange.
#4
Dootch
-
- Members
-
- 5 posts
New Member
Posted 09 March 2016 - 12:58 PM
I've been on 800mg Nilotinib (Tasigna) for 3 years. Hair on legs was 75% lost and comes back a bit in patches.....sometimes, then falls off again. Looks a bit funny, but I think my wife is jealous how smooth they feel sometimes. Hair on head remained but changed to a lighter/courser texture permanently.
#5
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 09 March 2016 - 04:35 PM
My hair loss has (so far) been permanent on Sprycel. I didn't lose it dramatically, like in the hairbrush or shower, just slowly it got thin, thinner, then a real coverup problem on my head. I can't get a decent hairstyle going - things keep not performing - each time I think I've got an adaptation that works, it goes flat and limp there. I've been using my Joan Rivers coverup head powder first on my wide part and then more, and now I have to do the whole front. Bangs (fringe to the Brits, I think) are tiny wisps. As for eyelashes and eyebrows, same thing - I almost don't have anything for the mascara to be applied to, and I'm pretty much drawing in half of my eyebrows. So, I think in my case, it's just that the follicles must be letting go and they're not regenerating any hair. I don't see any new hair ever.
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.
#6
Trey
-
- PS Beta Group
-
- 1,705 posts
Advanced Member
- LocationSan Antonio, Texas
Posted 10 March 2016 - 09:41 AM
It reverses if the drug is no longer taken, so it is not "permanent" in that sense. For some it may be "perpetual" while the drug is being taken.
#7
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 10 March 2016 - 12:30 PM
Right, Trey, perpetual is a much better word. Yet another reason I want off this stuff!
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.
#8
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 11 March 2016 - 02:24 PM
I struggle with this side affect everyday. my oncologist(one of them) laughs when I bring it up and says its just from stress, not the TKI. I tend to disagree. I feel like this CML is taking so much away from me in terms of who I am. having to deal with thinning hair at such a young age is so sad. heres to hoping when and if I go off my TKI in JUNE/July for pregnancy my hair begins to make its way back, but then if my numbers rise its back on the TKI right after delivery. kind of a cruel 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.
#9
scuba
-
- Members
-
- 1,044 posts
Advanced Member
- LocationHouston, Texas
Posted 11 March 2016 - 02:38 PM
I struggle with this side affect everyday. my oncologist(one of them) laughs when I bring it up and says its just from stress, not the TKI. I tend to disagree. I feel like this CML is taking so much away from me in terms of who I am. having to deal with thinning hair at such a young age is so sad. heres to hoping when and if I go off my TKI in JUNE/July for pregnancy my hair begins to make its way back, but then if my numbers rise its back on the TKI right after delivery. kind of a cruel game......
Thinning hair could also be thyroid. And TKI's affect the thyroid gland:
http://www.ncbi.nlm....pubmed/23398161
This can lead to hypothyroidism (underactive thyroid). M.D. Anderson now checks thryoid function at every PCR test. You should have a thyroid panel done just to rule out thyroid issues. A panel includes free T4 free T3 and TSH (TSH is a pituitary hormone that tells the thyroid to put out more or less T4 & T3 hormones).
Many of us (CML'ers) who complain of fatigue, weight gain, and other feeling well issues are more likely than not suffering from thyroid problems brought on by age and/or TKI's.
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"
#10
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 11 March 2016 - 02:50 PM
I see my oncologist at the end of march, I will bring this up to him. I thought I had my thyroid checked not to long ago and all was normal.....supposedly. I cant keep up with all the appointments and side affects, I may have to start journaling to keep up. I already have a binder with all test results but im a scatter brain as we get closer to the final tests before going off TKi for a chance at pregnancy. I test next week and then one more after that in 3 months....uhhhggggg the pressure. sorry just venting a little....
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.
#11
Buzzm1
-
- Members
-
- 972 posts
Advanced Member
- LocationSilicon Valley
Posted 11 March 2016 - 03:17 PM
Frogiegirl, come June you will have been PCRU for a year, so if you don't lose PCRU during your pregnancy, there isn't any reason for you to go back on a TKI. We'll be pulling for you.
PS: 80% of those who relapse after cessation, do so within the first three months
..... >95% of those who relapse after cessation, do so within the first six months
Be optimistic ...
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
#12
Frogiegirl
-
- Members
-
- 259 posts
Advanced Member
Posted 11 March 2016 - 04:03 PM
Buzz I'm definitely trying to stay positive. But the thought of going on interferon half way through my pregnancy scares me a bit. At that point it's no longer just about me is about getting that baby here healthy;) thanks so much for the support!
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
kavis
-
- Members
-
- 22 posts
Member
Posted 23 March 2016 - 10:44 AM
I'm 14 months into Tasigna, have also noticed some serious hair shedding. The odd part is it is not male pattern baldness (which I was experiencing well before CML), but the back and sides at the hairline. Getting extremely thin, to the point where it looks like I have little 'holes' in the hairline across my back and behind my ears! So strange.
Will it grow back? Am I going to have little patchy holes in my hair to go along with my new patchy pale skin?
These drugs are miracles, but man the side effects are a fun ride too.
Male, Dx Jan '15 in Chronic Phase at age 35
Tasigna 600mg
PCR highlights:
1/10/15 - 74.8%
April '15 - 1.7%
Oct '15 - 0.48%
Mar '16 - 0.24%
Apr '16 - 0.08%
July '16 - 0.09%
Oct '16 - 0.06%
Jan '17 - 0.0684%
April '17 - 0.08233%
July '17 - 0.034407%
Oct '17 - 0.043
Jan '18 - 0.028
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
