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Afib or Retirement doesn't seem to be good for my health


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#1 hannibellemo

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Posted 11 January 2018 - 03:17 PM

So, a week ago I spent about 3 hours in the ER with a totally out of the blue tachycardia event. I'd been experiencing a few palpitations for two or three days prior but they felt like the same arrhythmia that I had had nearly three years ago so I wasn't concerned, I just took note of it.

 

I was reading and felt a few flips in my chest and my heart took off. I was able to get a reading of a pulse of about 150 but it was very erratic. After about 45 minutes I realized this might not go away on its own and headed for the ER.

 

An EKG determined I was in afib and my HR would occasionally go above 170. (That is ventricular measurement which I was told meant my atria could have been quivering at a rate 3 times that.) It was weird because although I could tell my pulse was very fast and arrhythmic I had no pain, shortness of breath or light headedness.

 

It tried to convert on its own a few times but ER doc decided to use diltiazem (Cardizem) IV push to bring my heart rate down and see if I was still in afib at that point. It took about 15 minutes to get the HR down to the 90s and it converted to a normal sinus rhythm on its own. After another hour I appeared to be stable so they sent me home with metropolol 12.5 mg/day to keep my heart rate down. I have been in sinus rhythm since as far as I can tell.

 

NOTE: Should this ever happen to you do not leave the ER without a cardio consult!! I did not know any better but my wonderful DIL, who is a nurse, did and she got me an appointment within a few days with cardio. Evidently this is SOP and the new ER doc did not follow it.

 

I am now beginning Eliquis, a blood thinner, and they've added Cardizem 120 mg./day to the metropolol to help maintain sinus rhythm. I see my onc on Monday for my normal appt and we'll see where we go from here.

 

I know there has been some talk in the past about others on here with afib or wondering. I just wanted to let you know my experience. Afib is a big deal, don't let anyone tell you otherwise!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#2 Buzzm1

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Posted 11 January 2018 - 03:30 PM

Wow Pat, what a frightening experience.  Glad you are still with us.  I'll be looking forward to learning more about Afib from you.

 

Buzz


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#3 scuba

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Posted 11 January 2018 - 03:37 PM

Pat - do you take Calcium supplements? They should be avoided for people who have/had Afib issues.

 

http://a-fib.com/tre...l-deficiencies/

 

Afib can be triggered by mineral deficiencies especially potassium and magnesium. Blood tests for these minerals is often misleading. The body will deplete muscle cells of magneisum just keep the blood level constant. And the heart is a muscle of course.

 

Just something to be aware.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#4 hannibellemo

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Posted 11 January 2018 - 04:25 PM

Thanks, scuba, for the link. I remember Trey saying something  3 years ago when I had my first arrhythmia (I was in sinus rhythm the whole time) about TKIs affecting the metabolic remodeling (or something like that) in the bones and that a metabolic panel may not reflect magnesium and, perhaps potassium levels too, accurately. 

 

I want to mention that to my onc. 

 

I only take calcium in my multi-vitamin and there is some in the two Tums I take every night. I doubt those are significant but I will check.

 

Buzz, I don't think I was in any danger of dying, but because of the inefficient pumping action of the heart the blood could pool in the left atrial appendage and if it stays there long enough may travel somewhere else as a clot. That would be a major bummer!


Edited by hannibellemo, 11 January 2018 - 04:42 PM.

Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 kat73

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Posted 11 January 2018 - 06:14 PM

Pat - So sorry you had one of these.  I'm familiar with this!  My paroxysmal atrial fibrillation (PAF) could POSSIBLY be due to POSSIBLE scarring from left side radiation for breast cancer in 2002.  But they really don't know.  They did a sleep study on me, because some studies have linked PAF to sleep apnea.  Didn't have that.  They told me in the ER, the first episode I had (2003) that it can often be the result of a little too much partying (alcohol), and to my chagrin, I had indeed been to a wedding that was so awful I decided to have more champagne than I usually do and woke up in the wee hours with my heart going a billion miles a minute and it wouldn't stop, even walking around, jumping up and down, going upside down, nothing.  It's an absolutely AWFUL feeling - like worms dancing underneath your skin over your entire body.  We were out of town and so they did a cardioversion (the paddles) after overnight, as we had to get home.  Back to good old sinus.

 

Back home I saw a cardiologist, as the ER guys had told me to.  He said I would "probably" have another, and I did, about two years later.  Then I had two bouts only about a month apart.  Some of these converted on their own, others I went to the ER and got the drip.  Anyway, after the last two, being close together, the cardiologist gave me a pill - probably what you were given, but I've lost track of it.  I had a scary experience with that one, and called in for a quick appointment and was given a new cardiologist who was a gazillion times more upbeat and reassuring.  What a difference!  I had been so scared, and thinking I was going to have to deal with this forever, or have ablation or something, as what I read and what the docs said was the meds don't work.  The new guy said, whaddya talkin 'bout - 'course they do.  He put me on Sotalol - extremely small dose - 40 mg twice a day (that's the way I prefer to take it, but it's usually prescribed 80 mg once a day).  I have not had a bout since 2006, since those initial four.  Of course, I'm so terrified of going through that horrible, horrible sensation that I've never missed a Sotalol pill.  Never.  Since 2006. Very superstitious!  I see that cardiologist twice a year for an EKG and chat.  I've had absolutely NO side effects from the Sotalol, no new PAF bouts, and nothing further wrong at all with my heart (I've had stress echos done and regular echos).  I'm always in sinus whenever they do an EKG.  He also told me that I didn't need to take any blood thinner - that's definitely called for if someone has continuous atrial fib, but not necessarily PAF - but I have no risk factors and the thinners all have risks of their own, of course.

 

Recently, trying one more time to understand where my fatigue and lack of stamina are coming from, I asked my PC what to look into next.  She said the only one of my meds (besides Sprycel, of course) that could possibly be linked to fatigue MIGHT be the Sotalol.  So I asked the cardiologist, who said I could very safely try cutting it out and see (takes 6 weeks before a difference could be noted, he said) and the worst that could possibly happen would be a bout of PAF, in which case I'd just call him.  He also said there's a new med that, in case I had to go back on, is even better than Sotalol now, and does NOT cause fatigue.  You have to be in the hospital overnight so they can observe the reaction to your first few doses, but otherwise, piece of cake.

 

I think it's a very good idea to discuss the possible interaction of the electrolytes and minerals with the TKI (all this happened to me years before the CML dx and TKI's), and of course, I'm not a doctor and am not going to say it's not calcium at fault, but . . .  you would know, I should think, if you have high or low calcium from your regular bloodwork and urinalysis.  Also, I have had to take Calcitriol and Vitamin D3 for years and years now (secondary hyperparathyroidism because of mild chronic renal insufficiency caused - THEY AGREE - by Gleevec, which I stopped, but no luck on reversal).  Anyway, the Calcitriol has not given me any PAF, for what it's worth.

 

OK, I'll stop practicing medicine here - I'm sure I have triggered some corrections that will appear - but please don't feel like damaged goods, or scared - you aren't going to have a stroke.  They will control the PAF with a pill that will not add to your side effects, and if that doesn't work, ablation (the new, various kinds - heat, cold, whatever) DOES work and isn't a huge deal to undergo.

 

Hope this helps.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#6 hannibellemo

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Posted 11 January 2018 - 06:55 PM

Hi, kat! I went back and looked up the posts from you and Taylor a few years back. Thanks for taking the time to tell me about your experience. I'm not freaking out, truly. I've had one episode and I was surprised at how seriously they were taking it. I thought the appointment would be like, "Well, if you have another this is what we will have to do, blah, blah, blah." When I met with the Cardiology Fellow he went through all my options and I went with the least invasive because, well, what I thought in the sentence above. 

 

Interestingly, he told me that Sotalol was off the table for me because of the contraindication with Sprycel. That must be why they call medicine an art and not an absolute science!  :o  The head of the department met with me after (they always follow up on the Fellow) and reiterated that I had to be on a blood thinner. It's early days yet and I haven't thought of all my questions but one would be, could that change if I go for a long periods between episodes? Or if I convert on my own and the episodes don't last over 24 hours? That evidently is the benchmark for throwing clots.

 

He told me about the med where you have to stay for three days so they can see how you react to it. Not sure I would be thrilled to take a drug like that so I went for the little guns, as I said.

 

Wow, it sounds like you have been through the ringer with breast cancer, afib and CML plus it sounds like there are a few other things in there, too. Glad to hear you're doing so well!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 hannibellemo

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Posted 12 January 2018 - 09:28 AM

kat,

 

I was thinking about what you said and the one question I should have asked at the time is, "Why do I need to start a blood thinner now, after only one episode?" I'm sure the answer would be with the metropolol I may not know when I am in afib because the drug will keep my heart from racing but not keep it in sinus rhythm. Even the addition of the Cardizem may not keep afib from breaking through and many people don't know when they are in afib.

 

I am so aware of my heart rate and rhythm I think I would notice a change. Will discuss this with my onc and see what he has to say and then discuss it again with the cardio.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 Trey

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Posted 12 January 2018 - 09:45 AM

Pat,

 

What other medications have you been taking?


Edited by Trey, 12 January 2018 - 01:14 PM.


#9 scuba

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Posted 12 January 2018 - 10:36 AM

Following on Trey's question to Pat:

 

https://www.scienced...735109704017437

 

Look at table 2 for a list of drugs associated with Afib.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 kat73

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Posted 12 January 2018 - 11:55 AM

Pat - It's amazing that there can be such opposite recommendations - it is indeed an art as well as a science.  My primary care doc, cardiologist, and oncologist (well-established as a CML expert) all are fine with me being on Sprycel and Sotalol together.  Ditto for not being on a blood thinner.  I guess we can only dance with the ones that brung us . . .

 

As to your second comment, it's very true that many people can be in AF without knowing it, and I think that's why they have me get twice yearly EKG's.  Perhaps it's the track record that has been established (always in sinus, twice a year, for 12 years, no symptoms) that has allowed them to be more relaxed. 

 

Scuba - Thanks for that comprehensive article and list. 


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#11 hannibellemo

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Posted 14 January 2018 - 08:24 PM

Trey, Until this afib episode the only medications I have been taking on a regular basis are Lisinopril 5mg and Atorvastatin 10 mg plus 50 mg. Sprycel, of course.

 

Seasonally I take Allegra OTC and Nasacort OTC.

 

I take a multi-vitamin and D3, 2000IU.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 chriskuo

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Posted 15 January 2018 - 03:50 AM

In taking 5 different TKIs, I have never had my hematologists question taking sotalol.

My cardiologist did cut the sotalol dosage in half recently because she didn't think the higher dosage was still necessary.



#13 hannibellemo

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Posted 15 January 2018 - 09:00 AM

Hi, chriskuo. It wasn't my onc who questioned the sotalol, it was the cardiologist. I meet with my onc today for my regular visit and I will discuss my choices with him. I believe he also has afib and hopefully will have some suggestions for me.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#14 hannibellemo

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Posted 15 January 2018 - 11:00 AM

This may have something to do with the cardiologist not wanting to prescribe solatol. 

 

"Several distinct agents, most notably sotalol, are used for the long-term maintenance of sinus rhythm. Sotalol is efficacious, but as with other class III drugs, it requires close monitoring of the QT interval and serum electrolyte levels. Sotalol is associated with the risk of QT interval prolongation and torsade de pointes. The proarrhythmic effect of sotalol is increased in patients with congestive heart failure (unlike dofetilide and amiodarone), so it is generally contraindicated in such patients or in those with a prolonged QT interval. Hypokalemia should be corrected and monitored prior to administration of sotalol because it may also prolong the QT interval. Sotalol can be used in patients with coronary artery disease. [63]'

 

This was from an article updated in April 2017 on Atrial Fibrillation Treatment and Management. Couldn't get a link to work.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#15 Trey

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Posted 15 January 2018 - 08:22 PM

Probably should go back to work.



#16 hannibellemo

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Posted 15 January 2018 - 09:28 PM

:lol:  :lol:   :lol: !


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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