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Thyroid issues on Tasigna


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#1 rcase13

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Posted 05 February 2015 - 10:45 AM

I am 4 months in using Tasigna and reached MMR at the three month mark. I am very happy about that. I had my regular blood test yesterday and my T4 has been trending up and now is well into the danger zone. I have a lot of the symptoms of hyperthyroidism. I have rapid heart beat elevate blood pressure and very jittery like I had too much caffeine but I gave up caffeine a long time ago. I found an article about this and it looks pretty positive that Tasigna can cause these issues with the Thyroid. In the article it says that no one in the study had to stop taking Tasigna. It just says they had therapy.

 

http://www.ncbi.nlm....pubmed/20929406

 

Has any one else experienced this? What therapy can be done? I would hate to stop taking Tasigna because it is working well for me and other than the thyroid issue everything else is fine. My liver,pancreas etc are all doing well.


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!


#2 Lucas

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Posted 05 February 2015 - 11:01 AM

Me. I'd started a post about it some days ago. I have high t4 and very low tsh

#3 Trey

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Posted 05 February 2015 - 11:41 AM

I have seen a number of folks mention this over the years.  Tasigna seems to be the leading TKI causing thyroid issues. 

 

Do you have trouble swallowing pills?  Throat feel tight?



#4 rcase13

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Posted 05 February 2015 - 12:48 PM

Same here Lucas High T4 low TSH. Very weird.

 

Yea I do have some trouble swallowing pills and does seem a little tight below the Adams apple. I know that is were the thyroid sits.

 

Honestly I don't know if I am imagining things due to anxiety or not. I can say for sure my heart rate and blood pressure are elevated and feeling like I had too much caffeine. But all these are symptoms of a panic/anxiety attack as well...  :unsure:

 

I just want to add that CANCER SUCKS!


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!


#5 Lucas

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Posted 05 February 2015 - 01:55 PM

i don't have this issue. no symptoms, just the crazy hormones.



#6 mlk210

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Posted 05 February 2015 - 02:46 PM

I had my thyroid out 2 months after starting Sprycel. My tsh was normal range at time of surgery, but my endocrinologist has had a hard time getting my tsh, t4 and t3 stable. I don't know the treatment for hyperthyroidism, but when I did a lot of research for my thyroid case, there were a lot of people who  had hyperthyroidism that went through a thyroidectomy for it (I'm sure extreme cases and after all other efforts failed). I think there are medicines you can go on as well. Some had the radioactive iodine treatment. 

 

Rcase and Lucas, are either of you seeing an endocrinologist? They might be able to  help you in treating the hyper so you can stay on Tasigna. Thyroid issues can hurt your quality of life, so I hope you both feel better soon!


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#7 rcase13

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Posted 05 February 2015 - 02:49 PM

I am in contact with my OnC and he is going to refer me if needed. I just wondered what others have done that had similar issues. Little worried and wondering what my options are.


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!


#8 Lucas

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Posted 05 February 2015 - 07:55 PM

i'm going to see an endocrinologist. i read somewhere that this problem could be temporary in 70% of the cases and that it's more common on sprycell. i know that the treatment is by pills and, as last resort, surgery. good luck, rcase.



#9 rcase13

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Posted 06 February 2015 - 11:31 AM

Well I woke up to 120 resting heartbeat and high systolic blood pressure. Called the doctor and he is switching we off Tasigna for Gleevic. Hopefully Gleevic doesn't cause the same issues with the thyroid.

I was doing so well on Tasigna. I think I could have gotten PCRU on it. I hope Gleevic can do the same.

I guess I will be a member of the shart club...

Stupid Cancer

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!


#10 Lucas

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Posted 06 February 2015 - 01:50 PM

oh, man. i'm sorry you have passed throught this. i read an article where 29% of people on tki have signs of hyperthyroidism but none had to resume therapy. come back to gleevec is not an option for me (i failed gleevec). i'll have an appointment with an endocrinologist next friday. if i'll have to remove my thyroid, i'll do it. tasigna is working for me and i read that sprycel causes more thyroid problems. don't you think you can treat that problem? i think you are  giving up to early. the funny thing is that i had thyroid tests because they were thinking i had HIPO, not hyper, thyroid issues (losing hair, gaining weight, getting fatigue). good luck anyway



#11 rcase13

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Posted 06 February 2015 - 03:17 PM

I am on a beta blocker to get me through the weekend. It is working it got my pulse and systolic under control into almost normal numbers. Our long term plan was to switch me to Gleevic due to issues I have with my stomach and GERD. Gleevic is more GERD friendly than Tasigna. Monday or there about I go and see an Endo. I will talk to them and see if there is any way to continue with Tasigna. It is too early to switch to Gleevic. I was really hoping to make it to undetectable before switching to Gleevic.

Good luck with your visit hopefully we can get through this.

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!


#12 Lucas

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Posted 06 February 2015 - 03:51 PM

i've just read an article about thyroid issues with tki. they said most of people did not need treatment for that and that's transitory. there are some medications for hyperthyroidism maybe you should give a chance to them and have another test in a month, but it's up to you. you had a great result with tasigna and will do well long term. thanks for the support. hope i can maintain my thyroid and solve this issue :)

 

"Discussion

Thyroid dysfunction is a well-known adverse effect of first-generation TKI therapy (1-3). Athyroid patients with CML (31,32) or metastatic medullary thyroid carcinoma (33)
simultaneously being treated with thyroid hormones and imatinib seem to need a significant increase of the levothyroxine replacement dose. Increased nondeiodination clearance through enzyme induction has been proposed as a potential mechanism (32). However, there was no thyroid dysfunction in patients with the thyroid in situ (34). Here, we analyzed thyroid function through serial monitoring of TFTs in patients being treated with imatinib, nilotinib, and dasatinib. To avoid the potential influence of comorbidities as well as the influence of CML cells and intensive treatment regimens on thyroid function, only patients with CML in chronic or early accelerated phase and one patient with hypereosinophilic syndrome were included in the present study Thyroid abnormalities were very common with only about a third of the population being strictly euthyroid during follow-up. Both hypothyroidism and hyperthyroidism were each found in about a quarter of patients. However, these changes were mostly subclinical and transient and, according to the American Thyroid Association guidelines (30), rarely needed any treatment. Due to the transient nature of druginduced hypo-orhyperthyroidism, aswellasthemildclinical course with lack of symptoms in all but two patients, no specific treatment was initiated. The therapeutic relevance of early diagnosis of hypothyroidism or hyperthyroidism is therefore unclear. Due to the retrospective nature of this study, more detailed analyses of mechanisms were not possible. However, 4 of 18 patients (22%) with hypothyroidism and 4 of 55 patients (7%) being treated with nilotinib had evidence for an autoimmune thyroiditis, which, however, did not lead to persistent hypothyroidism. Only one of these four patients, who did not have autoantibodies, had previously been treated with interferon arguing against cytokine-induced generation of autoantibodies as a major factor. In conclusion, we found thyroid dysfunction to be common in patients with Ph-positive CML under treatment with imatinib and the second-generation TKIs, nilotinib and dasatinib. However, these abnormalities rarely implied a change in clinical management or required treatment, and never led to discontinuation of the TKI. Due to the inherent limitations of a retrospective, uncontrolled study and the sample size of our cohort no direct comparisons between different drug therapies is possible. Nevertheless, the frequency of thyroid abnormalities and occurrence of cases with evidence for thyroiditis indicates that these patients should be monitored regularly. Despite their reported kinase specificity, TKIs share still elusive off-target effects that frequently result in abnormal TFTs, including autoimmune thyroiditis. We therefore suggest careful monitoring of TFTs in second-generation TKI-treated patients".


#13 Billie Murawski

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Posted 06 February 2015 - 11:39 PM

I have seen a number of folks mention this over the years.  Tasigna seems to be the leading TKI causing thyroid issues. 

 

Do you have trouble swallowing pills?  Throat feel tight?

Yeah! For the past year I have been having some trouble swallowing I never associated it with Sprycel. Once in a while my onc orders my thyroid checked I never paid attention or asked him why, but I never heard back from him so I figured it must be okay. I try to schedule my appts. with Rons, so I've been focusing more on his symptoms than my own for the last 2 years, I knew there was a lot more wrong with him than depression and polycythemia so when he collapsed dec 1 all I hear is whoops. For 2 years I really didn't pay any attention to issues I had. I guess I better do better? I should have learned my lesson from that pe 2 years ago. It's really hard when there are 2 sick people in the house and we're alone and I have to be the strong one. Sorry I didn't mean to go on and on just venting!   Billie



#14 Lucas

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Posted 13 March 2015 - 01:11 PM

Hey, rcase, i came back to my endocrinologist today with my ultrasound and other tests results. he told me that my case is a sub-clinical hyperthyroid and that we have to do a follow up to see if in some point i'll develop symptons. 'till now, everything is ok because me heartbeat is fine (52 per minute - i always had a low heartbeat), no shaking, i'm not losing weight, etc. it seems like there's some sort of inflamation in my thyroid because it's shown hetoregeneous images. good luck! hope your liver and pancreas is alright too!!



#15 rcase13

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Posted 13 March 2015 - 02:17 PM

Hey Lucas that is good to hear. I finally had my appointment. Thyroid is certainly messed up! It got scary there for a little bit. I had the rapid 110 bpm pulse with jittery-ness. I have been managing symptoms with Metoprolol (beta blocker) it keeps my pulse and systolic BP in check. Recent blood test showed the TT3 and and FT4 are back in normal range. My TSH is still really low but rising. They think I may swing in to hypothyroid. But so far it is manageable and we are just monitoring it for now and controlling it with the Metoprolol. Oddly enough the liver numbers stopped climbing and went back to my normal. Very odd. The liver numbers when down about the time my TT3 and FT4 went back to normal. All my numbers for now are normal except for TSH. I will be curious what next months blood test says. That will be my 6 month. I am hoping for another log drop to .006!! That is probably asking too much but crossing fingers anyway! My normal pulse rate is usually in the low 70s. On the Metoprolol it is closer to 55. If my numbers stay the way they are now the Endo will probably take me off it.

 

It is a fun ride isn't it? I am ready to get off this roller-coaster of emotions. But I know I am on it for life.

 

Thanks for checking in. Odd that we spill all our medical crap on the internet but I don't say a word to friends and work colleagues.


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!


#16 Gail's

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Posted 13 March 2015 - 08:08 PM

Billie, just wanted to say I'm sorry you have so much to deal with. It's easy to put our needs on the back burner when caring for someone else. Take good care of yourself so you're able to keep on helping him.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#17 Billie Murawski

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Posted 13 March 2015 - 10:40 PM

Thanks Gail,

  The more I hear about thyroid problems from people on this board and what I've learned from reading about it I'm becoming more and more convinced that Rons thyroid might be a big issue as to what has happened to him these last couple years. I think his doctor missed it or didn't do the right tests or something he sees his pcp on Monday and his onc on the 25th hopefully I'll start getting some answers. If it is his thyroid shouldn't he be on some kind of medicine instead of just getting bw every month. Or could his numbers jump around? I have a sick feeling that all this time May-2012 till Dec-2014 it was thyroid that led up to his severe heart and lung  and elevated liver enzymes, bloodclots, his mental state symptoms it just all makes sense now. If it was his thyroid left untreated it could have led up to all those things couldn't it? These last few years it has been so bizarre, last week for a couple days he wasn't feeling good but now he's back to his old self. I don't think I could go through all that again. I kept telling the doctors over and over that they were missing something.



#18 Lucas

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Posted 16 March 2015 - 02:18 PM

Billie, hope thinks get better and better. Rcase, my tsh is 0.012 (a good number for a pcr, isn't it? :D ) it was lower than a month ago. my t4 is in the normal range now and i had some anti-bodies test and i was positive for one of them (TRAB), so it seems my body is attacking my thyroid. i did not have this result on my appointment and i'll send the result to my doctor tomorrow. I'm lucky because i don't have symptoms and i hope it gets better within some months - i'm going to my sixth month on tasigna in april). It's a bumpy road, but i think i'm doing good. we always will find something to worry and we really need to relax and focus on other things. my liver and pancreas numbers were up last time and i'll have some tests within 20 days, so i hope it's normal now. good luck!



#19 Billie Murawski

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Posted 17 March 2015 - 12:02 AM

Thanks Lucas,

 I didn't feel good this morning so Ron went to the doctors by himself, naturally he didn't ask any questions, but at least he brought some bw results home now I just have to figure out what they mean. He's gained 15 pounds so that's great.



#20 rcase13

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Posted 13 April 2015 - 09:19 AM

I thought I would update this thread. I had my 6 month appointment since diagnosis. All my CBC blood numbers were great. My PCR dropped from 0.06 to 0.01. I was hoping for  a larger drop. Is it normal for the PCR drop to slow down? I dropped over 3 logs in the first three months and then the next three months I only dropped half a log. Also correct me if I am wrong but isn't a PCR of 0.01 the same as MR4.0?

 

My thyroid issues have swung from hyperthyroid to hypothyroid. They stopped the Metoprolol and put me on Synthroid. Apparently this is normal to swing from hyper to hypothyroid. I feel great but they still want me on the Synthroid. Does anyone else take the Synthroid? Is it ok to take it at the same time as the Tasigna? My Endo wasn't familiar with Tasigna so she could not say. I left a message with my OnC. Hopefully I can take it at the same time. Finding times to take all my pills is a little overwhelming.


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!





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