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Hives with Gleevec (bump)


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#21 simone4

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Posted 13 September 2015 - 10:43 AM

Well, I have Hashimoto's Disease.  I knew from the antibodies that it was positive,

but endocrinologist has not offered any treatment.  Maybe because my TSH is

normal.  Too much levoxyl  for a normal level could give me rapid heart beat, etc.

My ultrasound was fine, no nodules that would indicate thryoid cancer.

Still itching some nights even with hydroxyzine 3x daily. It still breaks through

even though I am on only 200mg. of Gleevec.  urticaria is a parallel disease

along with hasimoto, so I'm at a loss. Oncologist wants me to switch to

Sprycel since I am allergic to Gleevec now, but I do not want to deal with

another problem. I have heart problems and don't need Sprycel to mess

with my heart.

 

Thanks for listening. Any advice is welcome.

Simone



#22 Trey

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Posted 13 September 2015 - 07:33 PM

I realize doctors like to put a name to things, and patients want to have a name on things, too.  But I think calling TKI induced hypothryroidism "Hashimotos" is incorrect.  True Hashimotos is an autoimmune disease.  TKI induced hypothyroidism is not autoimmune. 

 

This article mentions Gleevec in this sense:

http://www.nytimes.c...es.html?print=1

 

Hard as it is to change drugs at this point, I would do it.  The Gleevec is obviously interfering with your thyroid function.  Sprycel is not hard on the heart as such.  If you get cardio-pulmonary edema (not highly likley) that puts pressure on the heart, that can be dealt with.  I would not want to see you continue to suffer needlessly.  I think it is time to give up on Gleevec.



#23 gerry

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Posted 13 September 2015 - 07:45 PM

Hi Simone,

If you switch to Sprycel, maybe start out at a lower dosage than 100, with doc's approval. Others who are on Sprycel could talk about starting dosage.



#24 simone4

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Posted 14 September 2015 - 11:09 AM

I realize doctors like to put a name to things, and patients want to have a name on things, too.  But I think calling TKI induced hypothryroidism "Hashimotos" is incorrect.  True Hashimotos is an autoimmune disease.  TKI induced hypothyroidism is not autoimmune. 

 

This article mentions Gleevec in this sense:

http://www.nytimes.c...es.html?print=1

 

Hard as it is to change drugs at this point, I would do it.  The Gleevec is obviously interfering with your thyroid function.  Sprycel is not hard on the heart as such.  If you get cardio-pulmonary edema (not highly likley) that puts pressure on the heart, that can be dealt with.  I would not want to see you continue to suffer needlessly.  I think it is time to give up on Gleevec.

Thanks Trey for responding and the Times article.  How I missed this in all my research for the last few weeks...oh well.

No one, including Onc who saw TgAB and TPO as elevated, nor the Endocrinologist he sent me to has

mention TKI induced hypo.  Could G.messing with my thyroid cause antibodies?  My TSH is normal, which

is suspect.  I

Since Urticaria and thyroid "problems" are usually parallel, that would account for elevated IgE levels

and my allergic reaction to G.

Yes, I will exchange one devil for another but I am so tired from the "white coats" and their

tests and lack of research.

Could you please respond to this post.  I don't know if you were aware of all info.I have rambled

on about.

Thanks again.

Simone



#25 Trey

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Posted 14 September 2015 - 04:03 PM

There is no question TKI drugs can upset the balance in the endocrine system.  The pituitary, thyroid, and hypothalamus do a delicate dance sending out signals which impact each other.  Who knows which of the three the TKI drugs affect most.  So maybe it is the thyroid directly, or maybe indirectly through the other two glands. 

 

Signs of this imbalance can include body temperature issues (feeling cold or hot), dizziness, memory issues, skin issues, fatigue, etc:

http://www.mayoclini...ms/con-20021179

 

There is not a lot of information available.  Here is one article which helps a little:

http://www.eje-onlin.../160/3/331.full



#26 simone4

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Posted 14 September 2015 - 04:37 PM

There is no question TKI drugs can upset the balance in the endocrine system.  The pituitary, thyroid, and hypothalamus do a delicate dance sending out signals which impact each other.  Who knows which of the three the TKI drugs affect most.  So maybe it is the thyroid directly, or maybe indirectly through the other two glands. 

 

Signs of this imbalance can include body temperature issues (feeling cold or hot), dizziness, memory issues, skin issues, fatigue, etc:

http://www.mayoclini...ms/con-20021179

 

There is not a lot of information available.  Here is one article which helps a little:

http://www.eje-onlin.../160/3/331.full

Trey, thanks.  I read both of these articles last week.  I do have all the symptoms with exception of fatigue

which is much better with lowering of dosage.  Urticaria, dry and itchy scalp, etc. remain.

I understand that taking G. out of the equation would help thyroid function (TSH going back to normal)

but my TSH is normal. And would Sprycel not do the same?

Anyway, Sprycel would relieve the allergic reaction to Gleevec and the itching (no longer hives) would

vanish.



#27 hannibellemo

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Posted 15 September 2015 - 09:44 AM

Hi, Simone,

 

I'm glad you have some idea of what was causing your hives. The decision to switch to another drug is scary, especially after so many years. It underscores the fact that we are all guinea pigs on this bus!

 

I'm sure you will let us know what you and your onc decide to do and I just want you to know I'm thinking of you!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#28 simone4

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Posted 15 September 2015 - 10:02 AM

Hi, Simone,

 

I'm glad you have some idea of what was causing your hives. The decision to switch to another drug is scary, especially after so many years. It underscores the fact that we are all guinea pigs on this bus!

 

I'm sure you will let us know what you and your onc decide to do and I just want you to know I'm thinking of you!

Thanks Pat,

I see my oncologist is 2 weeks and I will present my findings (LOL) and see what he does. 

I wish I could start on 20mg. Sprycel, but he will not do that, I'm sure.

 

My hives are better, just rashes now like the ones I've always had with G.

Hope all is well with you.

Simone






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