You are here

side effects

Hi dear all

I was diagnosed in 2000 and happenly are nr 215 on Zavies list.
I am a lurker, read almost every message, but due to the language and stabil situation I do not write so often, but now I have a question. Does anyone has problems with muscles or nerves, called polyneupathie, by using Glivec by so many years?

Good to hear from you.

There have been a few posts about neuropathy as a side effect of Glivec/imatinib. You can find them by using the search box... just type in neuropathy.

It may be that your plasma levels of imatinib are too high and this may have had an effect over time. But again you should discuss this possibility with your doctor.
Recently there has been a lot of discussion about getting plasma trough imatinib levels tested to see if levels are low or overly high.
To be clinically effective the drug should be at a trough level (lowest level in any 24 hour period) of 1000 ng per ml.
If your trough level is a lot higher than this then it may be the reason that a particular side effect is hard to tolerate.

I hope this is of some help to you. I am sure that it is no joke to suffer from neuropathic pain.

It may be that you now need to think about taking an alternative therapy and should discuss this option with your doctor as you might want to consider a change to either dasatinib/Sprycel or nilotinib/Tasigna. But getting your imatinib trough level tested might be a good first step to understanding what is causing this problem.

For more detail on how to do this click on EUTOS-the European Treatment Outcome Study- which you will find under the newswire section on the right side of this page.

Good luck and best wishes,

Sandy

-------------------------------------

From Wikipedia, the free encyclopedia:

Polyneuropathy is a neurological disorder that occurs when many peripheral nerves throughout the body malfunction simultaneously. It may be acute and appear without warning, or chronic and develop gradually over a longer period of time. Many polyneuropathies have both motor and sensory involvement and some have autonomic dysfunction. These disorders are often symmetric and frequently involve distal extremities. There is a very large differential for polyneuropathy.

Evaluation:
Evaluation and classification of polyneuropathies begins with a history and physical exam in order to document what the pattern of the disease process is (arms, legs, distal, proximal, symmetric), when they started, how long they've lasted, if they fluctuate, and what deficits and pain are involved. If pain is a factor, and it often is, determining where and how long the pain has been present is important. The patient must be interviewed, and physical testing is often necessary to further delineate and document the pain.

One also needs to know what disorders are already present within the family and what diseases the patient may currently have. This is vital in forming a differential diagnosis.

Diagnosis/testing:
Although often diseases are suggested by the physical exam and history alone, testing is still a large part of the diagnosis. Tests which may be employed include: electrodiagnostic testing using electromyography, muscle biopsy, serum creatine kinase (CK), antibody testing.

Hi Sandy

Thanks for the quickest respons ever.
Om August 18 I will see my docter in Amsterdam and discuss the possibilities for measuring plasma levels.

It might be worthwhile doing a little research on this amino acid and its possible use in peripheral neuropathy

...Acetyl-L-carnitine has been evaluated in a pilot study by Maestri and colleagues[43]; the agent improved peripheral neuropathy severity by at least 1 World Health Organization grade in 73% of 27 patients with paclitaxel- and/or cisplatin-induced neuropathy. Similar findings were reported by Bianchi and colleagues,[44] who evaluated acetyl-L-carnitine among 25 patients with grade 3 neuropathy while receiving paclitaxel or cisplatin therapy. Sensory neuropathy grade improvement was noted in 60% of patients, motor neuropathy improvement in 79% of patients, and the total neuropathy score improvement (including neurophysiologic measures) in 92% of patients......

Sandy

Hi all
Not posted for quite some time but need some advice just come back from seeing doc and it seems I have fluid round my heart at the moment he's not sure if it is glivec related and is going to contact Jane Apperly to ask what next has any one else experienced this and if so what was the treatment.
Thanks
Yvonne