14 replies to this topic

[Taylor]

Hi everyone,

For those who were following my other thread, I had my appointment with my oncologist yesterday. We discussed my a-fib episodes and other palpitations. He did not like the idea of a half-dose of Tasigna with monitoring at all. We discussed the STIM trial a bit. But he mentioned that it looks like we've proven there are some cardiotoxic effects for me on Tasigna, especially since I am so young and had no previous problems. (my experiment of half-dose started to fail as I have been getting PVCs on that does now...but could be stress).

So he is putting me on 100mg Sprycel. I was a bit hesitant because it seems like with Tasigna, it's the devil you know sort of thing. I am also worried about being on 100mg, I was hoping for 70mg at least since that seems to be good, but his notes just said Sprycel is 100 or 140 so we'll do 100mg.

I am going to start in a week or so; I'm waiting for my One Card (copay card) to come in in about a week, then order the meds. I'm a little nervous. Go figure I get some anxiety back after a couple years keeping it at bay, and then I'm basically "starting over" pretty dang close to my cancerversary. Almost like deja vu. I guess as long as it doesn't kill me and keeps me PCRU then we're in business for the long run. Thanks for reading.

[tazdad08]

I also tried the half dose thing on my own. My onc wouldnt back me.... and he may have been right. My counts have been rising slowly. Looks like i am back to the 400mg per day. Or, at least for 3 or 4 days a week. I was on Sprycel for a little over a year. It was really good at maintaining my counts.

[GerryL]

Hi Taylor,

Good luck with the Sprycel. I felt a bit similar about switching drugs when my doc mentioned changing to Tasigna to me.

Will you be having a drug break between the two?

[Taylor]

Hi Gerry,

Thanks, I'll need some luck for sure! I asked my doc and he said to basically transition to sprycel at my next daily dose (whenever I get the meds). I'm worries though that I'll get the drugs next week on the day I get my wisdom teeth out, so I may end up having a day or so between.

[bagdaddi]

Hi Taylor,

Was there a scientific reason for the switch; ie, data supporting less cardiotoxicity vs Tasigna or just a "try something different approach?"  I'm in a similar position, but am now having chest pains last 3 weeks, so concern has ratcheted up.  Meet with Onc and Cardiologist next week. 

[GerryL]

Having your wisdom teeth out is painful enough without getting a Sprycel headache on the same day.

[Marnie]

I quite enjoyed having my wisdom teeth pulled.  In fact, during the entire ride home, I kept telling my husband that they had only pulled two and that I needed to go back so that they could pull the other two.  My husband tried to convince me that they had pulled all four, and that if I looked in my own mouth I would see that they were all gone, but he couldn't convince me.

They gave me some good stuff. . .

Marnie

[Taylor]

Hi bagdaddi,

I was hoping you'd see this thread. We didn't talk about any data or hard evidence for the switch, so really a try something different thing. It really had to do with my age (27) and lack of prior history of arrhythmia (none outside of a PVC once a quarter, if that). It just seemed like the recent problems showed some cardiotoxicity. Hopefully Sprycel will help me.

Chest pains don't sound good. Did you say you've already tried Sprycel?

[bagdaddi]

No - I've been on Tasigna for the 2 years since diagnosis.  Chest pains - need to be more specific - more like 2-3 times at once someone is poking a needle lightly into my heart.  Frequency is many times/day, but mostly when resting.

[GerryL]

For my last wisdom tooth, they put me out as they had to cut into the gum to retrieve the tooth, it had never broken through and turned itself sideways. I wound up with swelling and a large bruise on my jaw with the outline of the string from the padding in the bruise, from the pressure of the dentist's hand.

[Asmaa]

wow, I had the same thing on tasigna, and no history of heart issues either.  I was 29 at dx, but every single visit when I would complain of the palpitations they would say "well your ekg looked great" and never investigated further.   I never had them before tasigna, and sometimes the palpitations would get so bad it felt like my heart was skipping every 2 or 3 beats.  I was on tasigna for 3 years, I'm 32 now and I've been off the tasigna for 8 months due to pregnancy, but still having the palpitations and I'm on no meds.  Now they say they are pregnancy related... but makes no sense to me.   Never had this in prior pregnancies so my gut tells me the tasigna did something to me, I just don't know what.  They are less lately, but not gone.  I don't know what to do, it seems like they just don't take me seriously, but it's very unnerving, as I'm sure you know.

[bagdaddi]

Asmaa - I get the skipped beats as well.  When it is acting up, I check my pulse and can feel the skipped beats, usually just one in my case.  Discouraging that you've been off the meds this long and still have the issue.  Please keep us advised as there are a few of us with heart concerns.  Thanks.

[Asmaa]

Did you try sprycel, and what was the outcome regarding your palpitations? 

[Taylor]

Hi Asmaa,

Yep, I've been on Sprycel now for almost two months now at 100mg. I've had hardly any side effects outside of GI stuff (anything from extremely acidic stomach to irritation in intestines).

But as for the palpitations, unfortunately they remain. After doing some experimentation, I'm really convinced that a lot of my problems have to do with the electrolytes my body is getting.

After my first a-fib episode, my cardiologist put me on 20 MeQ potassium once a day, because it was low in the hospital. It helped some (and with muscle pain too). I always would supplement with 200 mg magnesium as well (50% of DV) once a day. But I really started pushing magnesium when I started sprycel, 400 mg minimum per day. I figure I'm not eating enough leafy greens, and even if I were, my body is surely not getting 100% of my DV while being on the TKI. The increase in magnesium has really helped reduce the number of palpitations (PVCs/extra beats). I still get them when I'm particularly acidic in my stomach, but that's another issue (irritation of the vagus nerve). I'm growing a garden with a lot of leafy greens and beans, so hopefully this summer it will get even better.

One thing I noticed was that this week I have had a lot more PVCs then usual. I believe this is because of the post-Easter binge on sweets/alcohol and goodies for my daughter's one-year bday. Sugar binds magnesium and makes you pee it out, and also makes me more prone to anxiety, which triggers the palpitations. So there's a balance between supplementing on one side and staying away from stuff that strips electrolytes on the other side.

Now, that said, I do have good news on the heart: on Tasigna, I always felt like doing the littlest bit of activity was REALLY hard on my heart. No pains or anything like that. But it was like, "why does my heart rate shoot up when doing the laundry and just feel like it's working hard, even on this beta blocker?" But now, I don't seem to have that issue. In fact, a few weeks ago I put together my garden and hauled bags of moss, compost, etc around, unloaded them from the car, etc., and it felt like I really wasn't doing too much work (and I'm not in shape either). And then I wasn't out for the count the rest of the day, we even went to dinner and ran errands with the little one. So while there may have been an issue with Tasigna in that regard, it seems to be gone. I'm hoping that my a-fib issues are related to that, and not electrolytes.

Bottom line, if you are having palpitations, try increasing both potassium and especially magnesium.

[Asmaa]

Thanks for the update, and I had no idea about the sugar binding to magnesium, good to know.  I'm on nothing now, but likely have to make a decision soon between sprycel and gleevec, but leaning towards the gleevec right now.   And I was also feeling very easily worn out on the tasigna.  I tried increasing the magnesium and potassium, but it didn't seem to help in my case.  Still taking my vitamins daily though.  My heart issues have recently been much better, I have started some new supplements including daily turmeric mixed with raw honey.  Apparently the honey helps it to get inside of the cancer cells, plus it's rich in vitamins and minerals.  I just started taking the herbs found in protandim as well.  I bought a month supply before because I heard great things about it, and for the month I was taking it, I had a decrease in my bcr-abl test and was not on any tki.  Also in that month my episodes of skipped beats were nearly gone, so maybe it is something in that combination of herbs that was helping, because when I ran out the heart jumping returned.   I just started taking it again, and the episodes are almost completely gone again Thank God.  I don't take the protandim brand, but I bought all of the herbs separately because it's much cheaper.  This is a HUGE improvement for me, because it was so bad that I was having thousands of palpitations a day.