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#1 snowboots

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Posted 08 June 2015 - 08:55 AM

On Gleevec 400 for 3 months this week. I started noticing extra hair falling out when I brushed my shoulder length hair. But last night after my shower/hair washing I big handful came out with combing. I have read that other people on Gleevec said there is no hair loss, so I am freaking out a bit. Anyone else have this happen and is it permanent or does it grow back? Should I be thinking about shaving my head? I have always had a great thick head of hair and have kept my CML quiet. Very few people know I am dealing with it. If I lose my hair, the world will know and I'm not sure I can deal with the questions and the looks. I know it sounds superficial and I am grateful to be living in a time when these drugs are available, I am just trying to work my way through it.

Also another question - what are these "eye bleeds" others are talking about?



#2 SUE

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Posted 08 June 2015 - 09:01 AM

Hi Snowboots,

 

I was on Gleevec for 6 months after my diagnosis in May, 2013.  After about 3 months, I had terrible side effects--big light red blotches all over, hair falling out.  I lost a great deal of hair, especially on top of my head.  After a 6 week "break" from Gleevec, I switched to Sprycel 50.  I have had some side effects but no long-lasting rash or hair loss.

 

Apparently hair loss on Gleevec is not a common side effect, but it absolutely does occur.

 

Sue


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#3 snowboots

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Posted 08 June 2015 - 11:39 AM

Did your hair grow back after you switched to the Sprycel?



#4 acl

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Posted 08 June 2015 - 01:42 PM

On Gleevec 400 for 3 months this week. I started noticing extra hair falling out when I brushed my shoulder length hair. But last night after my shower/hair washing I big handful came out with combing. I have read that other people on Gleevec said there is no hair loss, so I am freaking out a bit. Anyone else have this happen and is it permanent or does it grow back? Should I be thinking about shaving my head? I have always had a great thick head of hair and have kept my CML quiet. Very few people know I am dealing with it. If I lose my hair, the world will know and I'm not sure I can deal with the questions and the looks. I know it sounds superficial and I am grateful to be living in a time when these drugs are available, I am just trying to work my way through it.

Also another question - what are these "eye bleeds" others are talking about?

Snowboots, I take 300 mg. Gleevec daily, and since March 2014, I started noticing extra hair falling out when I washed and brushed my hair, I have long hair. I have lost at least 1/3 of my hair. I believe it is a Gleevec side effect. I only wash my hair once or twice a week.

acg


Diagnosed March 2014

Imatinib 400 mg. Summer 2014, Imatinib 300 mg.

 

% BCR-ABL

IS-NCN

 

06/01/16     0.18%

24/02/16     0.11%

23/03/16     0.13%

12/05/16     0.07%

13/07/16     0.17%

12/09/16     0.12%

21/19/16     0.15%

23/11/16     0.09%

20/12/16     0.11%

19/01/17     0.07%

21/02/17     0.07%

20/03/17     0.06%

20/04/17     0.06%

20/05/17     0.07%

20/06/17     0.06%

23/08/17     0.08%

22/12/17     0.04%

 

 

 

 


#5 Frogiegirl

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Posted 08 June 2015 - 03:35 PM

I have hair loss on tasigna as well. .....it has seemed to slow down now only after 18 months. ..I'm assuming because there's not much more hair left to lose:( I chopped off 28"......I Def miss my hair.this is especially hard being female. ....uuhhgggh

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.


#6 Buzzm1

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Posted 08 June 2015 - 04:03 PM

Snowboots, I take 300 mg. Gleevec daily, and since March 2014, I started noticing extra hair falling out when I washed and brushed my hair, I have long hair. I have lost at least 1/3 of my hair. I believe it is a Gleevec side effect. I only wash my hair once or twice a week.

acg

Ditto, I've been taking Gleevec for over 5 years and lowered my dosage to 300mg six months ago.  Thankful that I had a really thick head of hair to begin with, and am surprised that I have any left with the amount that has fallen out, by the handfuls, over those 5 years.  I can't imagine ever having my hair cut short again.

 

Buzz


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#7 Antilogical

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Posted 08 June 2015 - 04:40 PM

I've been taking Gleevec for almost 3-1/2 years.  Initially, my hair thinned a bit, but I attributed it mostly to stress.  It was a temporary condition.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#8 snowboots

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Posted 08 June 2015 - 05:44 PM

Thanks girls, for sharing your input, although not very promising. Today just read the thread "6 years - some questions". Info in there about Gleevec causing some hypothyroidism. I have heard that thyroid problems can cause hair loss. I plan to ask my doc about this next week and get it checked out. So far, the Gleevec is working and I feel great otherwise so I would hate to try a different med at this point.



#9 chrissy778

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Posted 08 June 2015 - 05:51 PM

Mine did the same thing, nothing drastic but in the shower I would have a lot in my hand after shampooing. It lasted like 6 months maybe and then just stopped. Nothing extreme......:)


Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of


#10 gerry

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Posted 08 June 2015 - 07:59 PM

I found hair regrowth slowed down, which might also make any hair loss more noticable to you. On the plus side I didn't need to shave my legs as often. :)

 

Eye bleeds is a break in a small blood vessel in the sclera, the white of the eye. This releases a tiny amount (less than a drop) of blood which is trapped underneath the conjunctiva, much like the blood in a bruise is trapped in the skin. It is called a subconjunctival hemorrhage since it occurs beneath the conjunctiva, the transparent membrane covering the sclera. It is not dangerous and leaves no residual change in vision. There is no discharge from the eye. Can be caused by the low level of platlets from TKI.

I only had it happen to me once, but others have had it happen more often.



#11 SUE

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Posted 08 June 2015 - 10:22 PM

Did your hair grow back after you switched to the Sprycel?

 

Yes, it did grow back.  It became much frizzier than it was before, but it also seemed thicker than previously.


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#12 TeddyB

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Posted 09 June 2015 - 12:44 PM

My hair thinned a lot during start of therapy, my barber noticed it, and also hair on my arms and eyebrows thinned a lot.

400mg gleevec.

Everything grew back after some time though.



#13 Melanie

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Posted 09 June 2015 - 12:55 PM

I think all the TKIs can have the loss of hair side effect. I experienced it while on Tasigna and now on Bosulif. It seems to calm down within a year or so. Not sure if I'll ever have thick hair again but it is starting to grow back and not fall out by the handfuls. I believe the degree of loss is due to a combination of things...The TKI, overall health, age, and stress. As your body learns to deal with all these issues, it eventually balances itself.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#14 CML2012

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Posted 09 June 2015 - 04:03 PM

I had shoulder length thick hair, but lost a lot on gleevec. I cut my hair short with cute layers and it helped. I am now in sprycel and have my shoulder length thick hair back.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#15 mikefromillinois

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Posted 09 June 2015 - 05:04 PM

Me:

 

Before Sprycel - hairy (think gorilla or Wookie)

 

After Sprycel - my nickname is mannequin legs



#16 Trey

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Posted 09 June 2015 - 07:37 PM

TKIs have the biggest impact on fast growing cells.  That is what cancer is -- fast and uncontrolled growth.  Blood cells are fast growers.  Other fast growing cells include hair and skin.  It is not that the TKI drugs harm the hair and skin, it is just that they can alter their growth patterns.  This is caused by inhibiting kinases (the "K" in TKI) which we would prefer to leave alone, including c-Kit and PDGFR.  It is the inhibition of these two kinases which alter skin and hair follicle growth.  Often the body adapts over time and lessens the impact.  If the drug is stopped, the effects are reversed. 

 

This is why I am hopeful about the new drug ABL001, which could eliminate many of these side effects:

http://community.lls...ts/#entry172992



#17 snowboots

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Posted 23 June 2015 - 04:45 PM

Just curious if any of you gals who suffered hair loss ever tried a Biotin supplement? I have had

several people who went through chemo treatments tell me they used it to help regrow their hair. It doesn't grow hair per se, but helps make your hair follicles healthier and better able to support new growth. Going to ask my onc about it tomorrow.



#18 Frogiegirl

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Posted 23 June 2015 - 05:26 PM

I take biotin daily and use 5% rogaine. It can take up to a year to see results. Dang I miss my hair. My youngest son says it's ok mommy your still pretty as a princess lol. ....I love him!

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.


#19 Darlene_Jack

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Posted 23 June 2015 - 06:31 PM

I just started Gleevec 2 weeks ago and yes there is hair loss, especially in the shower.  Hopefully it slows down n grows back for all of us :)


One breath at a time

Darlene jack...




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