Submitted by tony morgan on Fri, 11/01/2013 - 21:57.
Hi sandy reading the forum tonight reminded me of Glasgow ,was very nice to meet you and your partner,tried to fine your e mail address ', just to say remember my balance was not right,still the same. Went to my usual three month appointment , asked consultant about changing TK to help with fatigue and breathlessness, he said no problem , but thinking of taking you off medication all together, he was running 1 hour behind , only give me two months supply instead of usual three, and did not explain how I would be monitored,"apprehensive".
Had my results back on CT scan all ok, doing more tests to find out what's causing balance problem ,appointment next week on balance.
what do you think about stopping medication altogether?
all the best tony.
Hi Tony,
thanks for letting me know how you got on with the problems concerning 'balance': i.e you have been suffering with a 'lack of balance' and/or 'light-headedness'.
I think it was you wife who asked the clinicians at the Glasgow Seminar if they were familiar with this as a side effect. Although the answer was no, I was struck by the number of patients that were sitting around me who actually said that they too had similar experiences of this kind of effects- so maybe it was not as rare as the clinicians thought?
It would be really interesting to know if other members of this forum have experienced light headedness/dizziness/imbalance since starting therapy with imatinib-= i.e might this be another unreported side effect?
I am glad that your CT scan did not show up anything more serious that might be the cause of your imbalance and I hope that the further tests you mention are negative.
If I remember correctly, you said your PCR was very low? Please can you remind me how low it is as this might explain why your doctor is suggesting that you might try to stop therapy all together?
Or maybe he thinks that by stopping therapy for a month or so might get to the cause of the imbalance problem- i.e if imatinib is the cause of your side effects, then they will disappear quite quickly after you stop the therapy.
Given your PCR is very low, there will be very little risk of your bcr/abl levels rising significantly whilst you try stopping.
I am sure your doctor would not suggest that you stop therapy all together unless you were being monitored very closely- such as within a clinical trial.
You need to clarify with him exactly why he wants you to stopand what he is suggesting you do:
One of the following:
1. You stop imatinib to see if you can maintain your low molecular level over the long term
i.e. 0.01% = MR 4
0.0032% = MR 4.5
Note: This should be either within a clinical study or at least under extremely close supervision with frequent PCR testing (pref. with support from a specialist CML centre such as Birmingham or Hammersmith)
(Data from the STIM study have shown that approximately 60% of patients enrolled saw a recurrence in their bcr/abl % within 3-9 months of stopping- on resumption of therapy all regained their previous molecular responses. 40% did not need to resume therapy.)
OR
2. Stop imatinib for a short period to see if your side effects are resolved. If the side effects are less or disappear, then imatinib would be the culprit and I assume you would be put on a different TKI.
I hope the above is helpful. Please keep us updated.
Best wishes,
Sandy
