25 replies to this topic

[soundoff]

http://www.cancernet...cml-medications

Patient Beliefs Tied to Suboptimal Adherence to CML Medications

News | June 15, 2015 | Chronic Myeloid Leukemia, ASCO 2015, ASCO 2015 Hematology, Hematologic Malignancies, Leukemia & Lymphoma

By Cancer Network Staff

Beliefs regarding medication for chronic myeloid leukemia (CML) are strongly correlated with adherence to those medications, according to a study (abstract 9558) presented at the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting held May 29 to June 2 in Chicago.

Tyrosine kinase inhibitors (TKIs) have dramatically changed outcomes with CML, but their use is generally considered lifelong. "Suboptimal adherence is common and adversely affects clinical outcomes and healthcare costs," wrote study authors led by Joanne S. Buzaglo, PhD, of Cancer Support Community in Philadelphia, on their poster. "Patients with suboptimal adherence might under-recognize missed dose impact on response."

The new study used data from the Cancer Experience Registry, a database of over 7,600 cancer survivors; it included nine disease-specific surveys, including one for CML. In this analysis, 393 CML patients who enrolled in the registry from October 2013 to July 2014 and answered a survey (81% response rate) were included. The median age of the participants was 59 years, most were female (68%) and white (90%).

The participants were asked to agree or disagree with two statements: "It is okay to miss a dose of my CML medicine every now and then," and "I need to take every dose of CML medicine or it might not work." They also reported missed TKI dose frequency.

Nineteen percent of the cohort reported missing a dose of oral CML medication at least once per month; 14% said they postponed filling prescriptions, and 10% said they skipped dosages of prescribed CML medication.

With regard to the first statement, 74% strongly agreed that it is okay to miss a dose every now and then; 34% agreed, 15% disagreed, and 6% strongly disagreed. Compared with the participants who either disagreed or strongly disagreed with the statement, those who agreed or strongly agreed were more likely to have reported missing doses monthly, with an odds ratio (OR) of 7.04 (95% confidence interval [CI], 3.65-13.57).

A similar result was seen with regard to the second statement. Thirty-two percent of participants strongly disagreed that they need to take every dose or it might not work, while 45% disagreed; 22% agreed with the statement, and 5% strongly agreed. Those who disagreed/strongly disagreed were significantly more likely to have reported missing doses at least once monthly than those who agreed/strongly agreed (OR = 5.36; 95% CI, 2.81-10.2).

The authors concluded that these patients' beliefs regarding medication are strongly associated with suboptimal adherence. "The results suggest the need for multifaceted patient education that could have a positive impact on adherence and survival," they wrote.

- See more at: http://www.cancernet...h.dWmNywRt.dpuf

[chrissy778]

I have been taking Gleevec since Aug 2013. Since then I have missed two pills, once I had a high fever and the Dr advised me not to take it that night and another time I could not remember if I already took my pill. So then I still don't know if I truly missed it. I now write the dates on each individual pill on the packet like someone on here suggested.  Who would think it was ok to not take the medicine that is saving their life and risk resistance, not this girl

[Terran]

Heck I worry about not taking my doses exactly 12 hours apart

[rcase13]

LOL yeah no worries here I'm not stupid. 12 hours apart to the minute and never miss a dose. No food 2 hours before and no food 1 hour after. Pain in the a$$ but don't care... Living life

[JPD]

Ive missed a few times, but my Onc says being in compliance with adherence doesnt mean NEVER missing a dose.  It was more like 5 times per month or something*.

 

As to the 12 hours apart - thats more to keep excess OUT of your system (for the whole sudden death thing ).  I take mine 10-12 hours apart and my Onc seems fine with that, too.  As to the mealtime stuff, I am pretty religous about that.

 

 

 

 

 

 

 

*not sure its that many, but I know its more than zero.  When I told him I missed two doses in 3 months, he said thats "fine".

[Antilogical]

I missed 1 dose in 3.5 years, the day of my knee replacement.  I still feel guilty about that.

[TeddyB]

I missed 1 dose in 3.5 years, the day of my knee replacement.  I still feel guilty about that.

 

A bit over 3 years since dx, took 300mg one day, and 200mg one day, so ive missed 300mg in over 3 years. I also feel guilty, and have some thoughts on sneeking in an extra 100mg 3 times to justify it to myself. Then ill be "even"

[scuba]

Hi,

So I have read that if you are PCRU and stop taking the Meds, that If CML begins to return, then going back on medication usually results in a return to PCRU in a reasonable length of time, so should it not follow that missing a dose is more critical in the early stages of treatment? rather then later?

 

Missing a dose is not too critical - as long as it doesn't become a habit while trending downward in PCR. And you are correct that missing a dose in the early stages is more of an issue than in the later stages. The reality is some patients are forced to stop taking their TKI for one reason or another (side effects, blood count problems, and other reasons) and are able to resume with great success as their body adjusts and the issue(s) resolves. The key is blast count. If a patient has little or no blasts when cessation begins and is otherwise in chronic phase then time is on the patients side when it comes to missing a dose or two and then resuming. 

 

According to M.D. Anderson, they tend to see a one log jump upwards in PCR in one months time when a patient stops treatment while in PCRU and cessation doesn't hold. This is the reason why they want to test at one month intervals during cessation events - so they can catch the increase and resume medication with near 100% success in resuming the trend downward back to PCRU.

 

This is why missing a dose or two in a months time is more psychological than physical - especially when a patient is -4.5 log.

[alexamay09]

Diagnosis 31 August 2012 - number of doses missed - none.  Who'd take the chance!  I know that some people have had to stop for sound medical reasons and don't think that this should be classed as non compliance though!

 

alex

[scuba]

I always wonder about not so much missing a dose, but more so taking a supplement or eating something that reduces the effectiveness of the TKI. I recently was treated for a peptic ulcer and had to take a PPI for a week which is a known problem. Also I was told to stop taking magnesium any where near my dosage as it is also a known problem. So what about the thousands of supplements on the market that have yet to be identified as interacting with the TKI. I could be nullifying my medication without even knowing it.

 

Magnesium? Known problem? Do you recall who told you this. Every TKI is bound using magnesium (magnesium stearate). I was told by my Oncologist to take 400mg of magnesium (as Citrate and/or Taurate) along with Sprycel to ease muscle cramping (which it did). Perhaps it was some other supplement you were referring?

[Gail's]

Yikes! Also worried about taking with gleevec.

[Gail's]

Most antacids like TUMS are calcium, not magnesium. Milk of magnesia is not an antacid but a laxative. I wonder if your doc meant calcium/magnesium supplements since they're both in most supplements.

[scuba]

this from drugs.com

 

Magnesium hydroxide is used as a laxative to relieve occasional constipation (irregularity) and as an antacid to relieve indigestion, sour stomach, and heartburn.

 

Not all "magnesium" compounds are the same. Magnesium hydroxide is a "base" and will neutralize acid. So it is an antacid. Magnesium Citrate is not a base and will not act as an antacid. Magnesium Taurate (the best of the Magnesium supplements) is sort of an amino acid and acts like an acid. It behaves the opposite of magnesium hydroxide. These compounds deliver Mg²⁺ ion to the blood where its cation activity helps in nerve transmissions necessary to effect muscle contractions. This is why you get muscle cramps (and some heart arrhythmias) when magnesium is depleted. TKI's deplete magnesium. Magnesium Taurate is the best one followed by Citrate.

 

I have been taking Magnesium for years on the recommendation of Dr. Cortes (citrate and Taurate, but now just taurate) with my Sprycel at the same time (when I was taking Sprycel - I no longer take Sprycel, but continue taking the Magnesium). I achieved great results on only 20mg Sprycel and eliminated muscle cramping.

 

So it is important to know what "magnesium" you are taking and your doctor should know the difference as well.

[soundoff]

I've missed about 5 times in 5 year's but only half of a days does since I take Tasigna twice daily...So I can't really say I've not taken a TKI every day for the last 5 years.

[Lucas]

Never missed a dose in 1 year and a half. sometimes i took my meds 40, 45 minutes after the schedule but i really don't like to do this and feel bad about it.

[roamingdoc83]

I miss most often on Fridays... probably three times monthly.

[Gail's]

Missed a dose this week. Just spacey. Have to say I noticed I'd missed because I didn't feel nauseous that day, checked, and sure enough, it was in the case!

[gerry]

I missed a couple of doses for the three and a bit years I was on Gleevec, mainly through throwing it up.

[acl]

I missed a couple of doses for the three and a bit years I was on Gleevec, mainly through throwing it up.

I have been taking Gleevec since March 2014 and I have never missed a dose.

[gerry]

I have been taking Gleevec since March 2014 and I have never missed a dose.

 

Sadly sometimes when you're vomiting close to taking the Gleevec there isn't much you can do.