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Headache

Hi all,
It's being a bit of time since I post last time. Certainly, I don't know what to do except to post in the forum, just to see if some of you have experienced the same effects, David (my husband) is having.

It's almost two months since he started with the chest pain. Apparantly the ECG was normal, and his doctor did not give him too much attention. This week a part from his normal (lately) chest pain including arms and hands, he is just hearing some noise on the left ear, he complains two days ago from a left headache (cluster headache localized on the left side), and dizziness. I'm really worried, and his doc doesn't seems to be worried as me.
Have any of you experienced something similar?

Hi Carmen

First is David worried as well? He will know how bad the pain is and if it feels serious enough to ask for more tests. Where is David treated? And is it the hospital Doctors you spoke to or your family doctor? Is David on Gleevec, as chest pain can be a side effect that needs investigating. When we are worried about a side effect/symptom it does no harm to push the doctors for a reason, and extra investigations.

For me I had chest pains and hands tingling, arms hurting as side effects on Gleevec. They were like a kind of cramp. I am now on Nilotinib.

Hope David gets this explored further
ATB
pennie

Dear Carmen,

I am sorry to hear that David still has the chest pain. Have you thought of seeking a second medical opinion?

Anjana
wife of Roy
d/x Jan 2002
400mg Gleevec
PCR 3.9log

Hi Anjana,

Yes he is still with the chest pain. He visit another doctor, for a second opinion,his Electrocardiogram was clean as so the blood test (he is in 5,000 WBC, and 14 of Hb, no anaemia, no troponin I or any other heart marker, etc) he didn't know what to say either.
Looks like it could be a pericarditis, which would explain the dizziness... but in fact there is no sign about it. doctors Still believe, it is better not to perform an X-ray, as they can't hear any rumour in the chest. the worst part is that now he started with the cluster headache in the left side of the head, including earing problems and eye problems (always in the left side). I'm worried about cerebral edemas or something similar.
As doctor can't explain anything... I'm always believing it should be a gleevec side-effect, which worries me a lot.
The other thing they told us, it's just nervous or anxiety, but there is no reason for that. Now we are getting nervous, because doctors are not able to find exactly the reason.
I don't want him to change gleevec, and I think there must be major reasons for his doctor to change the medication, but at the same time i'm not only worried but also dissapointed.
he can't work or perform just regular things, like run for instance. I don't know what to do, honestly!

Dear Carmen,

All the patients I know who had fluid in the lung had breathing difficulties. And this is rare with Gleevec as is cerebral edema but of course it can happen in rare cases. There is another test some doctors do from the blood for heart problems, it is the BNP test. And also an echocardiogram helps as well.

What I can only suggest is for you to discuss with your doctor David being off Gleevec to see if it is indeed a Gleevec side-effect. Some patients have done this on medical advice when the doctors were not sure if it was a Gleevec side-effect. I think David is in CCR so this may be an option to see if it is a Gleevec side-effect or not. We sometimes think everything is due to Gleevec but there can be other problems. A Gleevec break should always be taken on medical advice of your doctor. Some patients have taken these breaks to see if Gleevec is the culprit for the medical problems.

Anjana
wife of Roy
d/x Jan 2002
400mg Gleevec
PCR 3.9log

i think that this might be a good way to really prove if David is suffering from side effects of Glivec or if there is some other problem.
the cluster headache you describe could be migraine which can also have hearing and eye symptoms. becoming anxious will make most symptoms worse, especially headaches.
but as Anjana has suggested, you should talk to David's doctor who may well consider a short break from Glivec.
Sandy ;o)