Hi Janita,
Not taking your meds for one single day won’t cause any issues - but if missed more than one time a month (perhaps less) then it can cause problems. But if you are having side effects that are so bad to make you want to do that, there’s probably something else that could be done.
What medication are you taking? When were you diagnosed, and where?
David.
Hi
mom in Tasmania Australia I am taking Nilotinib twice a day only been on them for 3 weeks and my levels have dropped dramatically already (yayyy) my dr says I have to give my body time to adjust and symptoms should settle in a month or so it’s just I’m getting married TODAY!!!!!
i can see already this forum will help me greatly and I’m so thankful for your time xx
Hi Janita
Congrats to you both. A day let alone week prob will make little difference as my doc says. But wouldn’t take the risk regularly even once a month.
I am too on Nilotinib and have been so for 20 months. Side effects are negligible for me. Early days are sore scalp, rash, fatigue, some major joint bone pain for about 6 months. I still get some symptoms but nothing I can’t cope with. Bloods perfect from the day I started my last PCR at 18 months 0.118% very very near MMR. Hang in their I am sure things will improve. Main thing is you are responding!
I understand the early days you’ll have lots of questions and emotions. I know you won’t believe it yet but you are going to join the 95% who are doing fine. Seems impossible I know but it’s true.
All the best
Alex
Janita, allow me to re-ask part of David's question: What dosage of Nilotinib are you on?
You may be able to reduce your dosage to help reduce the side-effects you are experiencing. The standard starting dose is 600mg, (2 X 300). A few reduce to 300mg early in treatment due to side-effects.
Age seems to play a part in the CML scenario; younger person's bodies seem to be more tolerant of the TKIs; the average age at diagnosis is 64; younger CML patients seem to have a more difficult time maintaining TFR although there isn't much in the way of compiled data. Seems they forgot to add that to the stats during the trials; there's only one trial that included that statistic:
The ISAV (for Imatinib Suspension And Validation) study http://bit.ly/1UWAZ78
was conducted in five countries (including Canada) and used a new digital PCR test which is reportedly 100-fold more sensitive than conventional PCR testing (Mori and colleagues. ASH 2014; abstract 813).
The 112 people enrolled in the study were required to be in CMR for at least 18 months. The median time on imatinib (Gleevec) was 8-9 years, and the median duration of CMR was 26 months. In the first 16 months off treatment, 43.5% of people relapsed, typically within the first nine months.
All of those who relapsed were able to regain MMR or CMR with two months of re-starting treatment.
In this study, the amount of time on Gleevec didn't have an impact on the risk of relapse.
However, a person's age was inversely related to the risk of relapse. Relapses occurred in 90% of people aged 45 years or younger, compared to 37.5% in those aged 45-64, and 27.5% in those aged 65 years or older.
I'm liking the odds.
