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My husband was diagnosed in 2011 with CML, started on gliveec , 400 mg. later increased to 600 mg.

After 3 years, they said he had developed a resistance to the drug and should switch to Tasignia or Sprycel. Took us over a year to have access to Tasignia, all the while, he remained on gliveec, though it wasn't doing much.

he s been on Nilotinib for close to 8 weeks now and it's been terrible....headaches, cough, spleen enlargement ( that has reduced), weight loss, appetite loss, extreme fatigue, back pain, waist pain.... So much so he stopped 4 days ago and says he wants to return to gliveec, it had fewer side effects .

i want to know if anyone has gone back to gliveec from  Nilotinib?

can Tylenol forte be taken for the headaches?

 Can he take feroglobin capsules for the fatigue?

what about  Cellgivity capsules?

sorry about the long post, I just need him to get his strength back.

thanks for anticipated help.

Hi, I am sorry to hear of your husbands problems getting access to nilotinib (Tasigna). I assume you are treated in the US as you use the brand name Tylenol for paracetamol/pain killer. 

To answer the easiest question first:

it is OK to use paracetamol/Tylenol for pain but be cautious about using it over the long term on a daily basis. This is because it puts a lot of stress on the liver and as TKIs are also metabolised through the liver it is best to use such pain killers only short term and when needed. 

I am not aware of a reason why he should not use imatinib again because of side effects or nilotinib - but- given that he has shown resistance to that particular TKI I do not see this as a wise choice. Can he get access to the following TKIs?

a. dasatinib/Sprycel

b. bosutinib

c. ponatinib

All of the above have a different side effect profile - one from the other. It may be that he is intolerant to nilotinib and so one of the above may suit him better from the point of their side effect profiles.

Having said that- it is important to find out the reason for his resistance to imatinib.... does he have an imatinib resistant mutation? If so his clinician needs to identify which of the other TKIs would be best to deal with the particular imatinib resistant mutation he has.

He really needs to talk urgently with his clinician about his side effects. It may be that they will reduce over the following few weeks as he gets used to the drug. It may also be that these effects are because nilotinib is working at killing his PH+ cells... you do not say what his blood counts are/were or whether he had and then lost a cytogenetic response over the months that he was waiting to access nilotinib. If his spleen enlarged during this time I assume his disease was uncontrolled (by imatinib). 

His clinician should be able to advise you and your husband .... but please try to convince him to continue with this therapy until he can at least talk to his clinician about the level of side effects he is suffering. If he has stopped therapy he is risking the disease progressing to a more difficult to treat phase.

Sandy

Thank you Sandy. His last wbc was 102,000. He had the enlarged spleen on Imatinib but it even worsened in the first weeks of taking Nilotinib. The side pains stopped on its own but the headaches, extreme fatigue, loss of appetite and weight loss came up instead. He s been off Nilotinib for just 5 days and he is stronger than he was last week.

we are not in the US, we are in the Arab peninsula, it's harder to get good medical options.......

pill ask about the other TKIs but not SPRYCEL, I think it's just going to be like Nilotinib.