Jump to content


Photo

Thyroid and TKI's


  • Please log in to reply
9 replies to this topic

#1 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 12 November 2015 - 10:40 AM

And now for something different:

 

http://www.hindawi.c...ri/2013/725410/

 

I have been off Sprycel for nine months testing whether I can stay off Sprycel and maintain remission. I was mostly successful, but did notice a slow rise from PCRU into MMR. I was still safe to stay off Sprycel (20mg), but decided last month to test if resuming Sprycel would drop me back down into PCRU. Although I didn't have to - I was curious - so I restarted.

 

Within days, my thyroid became incredibly painful and my temperature elevated. Heart beat went up to the mid-80's resting. And my TSH plummeted. Strange, my thyroid hormone level remained normal, but apparently did not need any stimulating hormone to keep it there. I do expect that my hyperthyroid will shift into a hypothyroid down the road. I'll just have to monitor. 

 

It seems that TKI's (second generation in particular) can cause thyroid dysfunction. After being off Sprycel for so long with apparent immune system success attacking CML - an auto-immune response was set up against my thyroid. This is conjecture on my part. I do suspect I am having an auto-immune attack on my thyroid (thyroiditis). I have an appointment with an endocrinologist to confirm. The inflammation is not constant - comes and goes, but has been every day since re-starting Sprycel. Taking an ibuprofen (first time in years) alleviates the discomfort.

 

Reading up on this (see link above) - it does seem that there is a correlation between thyroid dysfunction and TKI's.

 

My recommendation to patients is to have their Thyroid function tested as part of their PCR testing schedule.

 

p.s. if my PCR drops back one log (essentially to PCRU) - I'm resuming my cessation. Thyroid and TKI's don't go well together.


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"


#2 tazdad08

tazdad08

    Advanced Member

  • Members
  • PipPipPip
  • 141 posts
  • LocationTennessee

Posted 12 November 2015 - 02:28 PM

I have also fallen victim to thyroid issues while on a tki. Hopefully you can remain off all tki's or at a very low level. I pray every night for my fellow cmlers


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!


#3 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 12 November 2015 - 02:53 PM

Yep me as well. Been riding the Thyroid roller coaster for a year now. I've been hypo, hyper and now I am off all thyroid drugs. All my thyroid numbers are normal. But my ONC and I both know that won't stay that way for long. I get thyroid numbers tested every month.

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!


#4 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 12 November 2015 - 03:04 PM

Don't know yet what's up with my thyroid - whether autoimmune (TKI induced), infection (TKI induced) or something else (tki induced). I Right now my thyroid is hyper and I suspect it will soon go hypo. TSH is very low right now. I'll know more next week. The good news is it is treatable and I can get this stabilized. It would be interesting if the fatigue I have felt over time has been a thyroid issue all along.

 

Thyroid testing will now be added to the PCR testing schedule. I am surprised it wasn't a routine test before.


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"


#5 rcase13

rcase13

    Advanced Member

  • Members
  • PipPipPip
  • 523 posts
  • LocationCharlotte, NC

Posted 12 November 2015 - 04:52 PM

Yeah I am surprised that thyroid and cholestoral wasn't added from the beginning. I understand the TKI messes with both. Next time I see the ONC I will add cholestoral and triglyceride.

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!


#6 dede5

dede5

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts

Posted 12 November 2015 - 10:13 PM

I found this interesting because my onc decided on a whim to add a thyroid test this visit. I had mentioned more fatigue than usual for past couple of months, but didn't know thyroid could be affected. I wasn't told this at that visit either, had to learn it here. So thankful for the information I get here. Haven't heard the results yet, so maybe no news is good news. I hope so...


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#7 Taylor

Taylor

    Member

  • Members
  • PipPip
  • 17 posts

Posted 12 November 2015 - 10:21 PM

Scuba, I think Sprycel messes with my thyroid too. The first time I took it (after switching from Tasigna and being off that for two days to let my system clean out), I woke up in the middle of the night with chills, a racing heart, and finally some dry heaving before my chills suddenly vanished. Heart rate reminded high the next day but I think part of that was adrenaline and effects of poor sleep. Either Marnie or Pat warned me about that occurring and it happened almost to a T!

 

Fast forward a couple of years. I maintained PCRU with Sprycel, and by this time it had been almost four years total PCRU. For some reason I decided to take a week-long break (this was back in August). After I started again, I woke up with chills...a racing heart...and then the dry-heaves again. It was a complete repeat. I think it set off my thyroid again.

 

For what it's worth, for me it seems to be a temporary hit to the thyroid. I monitor how I'm feeling frequently and have not noticed any other bodily functions that appear out of whack and associated with thyroid issues. 

 

Caffeine effects me differently than it used to (makes me more prone to anxiety and also a major energy crash a couple hours after consuming-- near fainting -- unless I eat something, even if I've had a large meal with the drink originally. I'm trying half-doses of Sprycel this week, to determine if it's how my liver processes the caffeine, and am going to have a nice cup of coffee tomorrow to see how I do. But while I think that's liver, maybe it could also be thyroid related.



#8 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 13 November 2015 - 10:51 AM

Taylor - do you know your thyroid test levels? Specifically TSH and T3/T4 hormone 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"


#9 Cool Hand Leuk

Cool Hand Leuk

    Member

  • Members
  • PipPip
  • 24 posts

Posted 14 November 2015 - 04:15 PM

Hi, I have been on sprycel for the last year and a half and am experiencing intermittent restriction in my esophagus. I had my thyroid tested a year ago and it was fine then, but recently the occurrence has become much more frequent. Anyone else experiencing this sort of symptom?

Thanks

#10 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 14 November 2015 - 07:15 PM

Hi Scuba,

Sorry to hear you are having thyroid issue now. How low is your TSH? Do you know your T3 and T4 level? It is important to check your thyroid antibodies as well.

I have been wondering about your PCR result and your scheduled bone marrow.

Hope you will get better soon!

 

I am scheduled to meet with an endocrinologist on Monday. My T3/4 levels are normal, but my TSH is non-existent (i.e. very low). Just a few months ago, TSH was normal too. The doctor I am seeing is a specialist in Thyroid (mostly for women - who knew?). My own guess is that I have thyroiditis - with a mild bacterial infection. My Neutrophils are elevated (which has never happened before) and this "infection" correlates with a dental visit (routine cleaning). But I am just guessing. Once he draws blood (ultrasound already done) and we get the results we'll know more and I'll report back here. 


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"





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users