Jump to content


Photo

Heart prob warnings and supplements

Blood pressure heart health sprycel potassium magnesium

  • Please log in to reply
17 replies to this topic

#1 DebDoodah22

DebDoodah22

    Advanced Member

  • Members
  • PipPipPip
  • 110 posts
  • LocationTexas

Posted 14 January 2015 - 05:58 PM

Does anyone have this concern? For about 5 years prior to dx I was taking HBP meds for hypertension. After I started on sprycel, my blood pressure came down to hi normal range and due to pharmaceutical interactions with tki my DR and I took me off BP meds....all BP readings since have been fine.

my concern is that I keep asking my onc to monitor potassium and magnesium when doing regular labs, but he seems totally unconcerned. The sprycel site states the following but the onc acts like this is unnecessary. So far, no one has done an EKG and although testing by GP reveals lower than normal magnesium and potassium, the onc does not believe in supplements and discourages their use. What are you experiencing ?
Anyone take supplements? Or even vitamins for that matter? Onc discourages both, yet prior to dx I took D3, magnesium, B formula, plus C.

Heart Problems:
SPRYCEL may cause an abnormal heart rate, heart problems, or a heart attack that can lead to death. Your healthcare provider will monitor the potassium and magnesium levels in your blood, and your heart function

#2 dede5

dede5

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts

Posted 14 January 2015 - 06:53 PM

This is a side effect I forgot to mention on another thread. I developed Atrial Fibrilation (A fib), which is where your heart skips a beat every few, about 1 year into CML treatment, which is Sprycel 100mg daily. I had no idea this was one of the possibilities, but it is. I knew I was having some discomfort, but fortunately my hem/onc found this on a routine office visit. He sent me to ER that same day, and they put me on Atenolol. That is what is referred to as a walking stroke waiting to happen. I probably shouldn't, but joke that I could drop dead today with A fib, or drag it out for years with CML. Sorry if that offends anyone. That's just how I deal. Laughter is the best medicine :)

 

I take Centrum Silver multi vitamin sometimes, and just a B complex supplement other times for my nerves. My hem/onc has no problem with that.


Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D


#3 mlk210

mlk210

    Advanced Member

  • Members
  • PipPipPip
  • 158 posts
  • LocationIllinois

Posted 14 January 2015 - 08:26 PM

Deb - I had the same thing in a way, except my blood pressure levels rose again. I was on hbp for ten years for hypertension prior to diagnosis. After I started Sprycel, I started getting dizzy a lot. This made me check my blood pressure and it was so low. My top number was just over 100, but my bottom number would drop to 50. My GP took me off the hbp, but after a week, my pulse got up over 100 and I couldn't get it down. They started me on atenolol (25mg) a day. A few months after my thyroid was taken out, I had to be put on Synthroid, my blood pressure started rising again so now I'm on it twice a day. There's no explanation for my blood pressure going down except for the Sprycel. Now I'm back to them again, which I hate. I'm trying to lose weight and exercise to get off of it.

 

I take a multi-vitamin daily and Vitamin D.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#4 DebDoodah22

DebDoodah22

    Advanced Member

  • Members
  • PipPipPip
  • 110 posts
  • LocationTexas

Posted 14 January 2015 - 10:36 PM

Thanks milk and Dede ...for now just taking a weekly reading to make sure pressure stays in norm range but would prefer to add in some magnesium d and b ...so far thyroid levels are bordering on normal but I feel that's a matter of time based on family history and meds.

#5 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 15 January 2015 - 10:00 AM

Taking additional potassium and magnesium is a very good idea when taking TKI drugs.  All TKI drugs deplete minerals faster than normal.  Mineral depletion can negatively affect the heart, bones and muscles.

 

Also, Sprycel can cause pleural and pericardial effusion, meaning fluid build-up around the lungs and heart.  If fluid builds up around the heart it puts pressure on the heart, making it work harder, which is not a good thing.  People with heart issues should watch for any shortness of breath, fast heart rate after mild exertion, and such, which can be signs of pericardial effusion.



#6 winespritzer

winespritzer

    Advanced Member

  • Members
  • PipPipPip
  • 101 posts

Posted 05 April 2015 - 09:03 AM

Dear Trey,

 

At the 1 yr. mark on 100 mg Sprycel,  my heart started skipping beats after some nasty oral surgery and dehydration that forced a hospital stay.  The onc attributed it to tension.  

 

More recently, it happened a few times when I was in South Carolina so I went to Urgent Care. That doctor said it happens now and then and perhaps I was never aware of it before. I should just not eat chocs when reading scary murder mysteries in the middle of the night.

 

Back home in NJ, the internist said it's the Sprycel  and advised me to see a cardio for a workup. Going tomorrow.

 

Meanwhile I would like to add magnesium and potassium to my diet. How much potassium and magnesium should I take as a supplement?

 

Thanks.

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#7 jmoorhou

jmoorhou

    Advanced Member

  • Members
  • PipPipPip
  • 314 posts
  • LocationOutside of San Francisco

Posted 05 April 2015 - 12:32 PM

My Onc does potassium, carbon dioxide,chloride and sodium every two months along with all other blood work.  Mine is lower that it was.  I too, am really concerned about a stroke.

 

I take a multivitamin does anyone know how much potassium and magnesium you should take in a supplement besides the multi.

 

But really on Gleevec if stroke issue was really serious wouldn't that be with side effects listed?

 

??


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#8 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 05 April 2015 - 06:03 PM

My doc orders a complete panel work up along with my PCR test.

I also took those supplements plus a few more, just took most of them away from the Gleevec. I didn't take potassium, but included a banana in my diet everyday.



#9 Dom

Dom

    Advanced Member

  • Members
  • PipPipPip
  • 186 posts
  • LocationNew Jersey

Posted 05 April 2015 - 06:04 PM

I have serious heart problems, inherited from my parents. No one in my family has made it past 60, no uncle, brother, what have you. I'm 63, have 5 stents in 3 operations, on more HBP meds than I can count, and a stroke is a constant fear of mine. My onc specifically put me on gleevec, because the other TKIs had heart side effects that he thought was dangerous for me.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#10 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 05 April 2015 - 08:38 PM

We do not need to add massive amounts of P and Mg, just a little to help replenish along with our food.  I just buy low end potassium and magnesium pills from Walmax-sharts.  And I eat lots of cheese.



#11 winespritzer

winespritzer

    Advanced Member

  • Members
  • PipPipPip
  • 101 posts

Posted 07 April 2015 - 08:39 AM

Dear Trey,

 

Thanks once again for your help. My cardio suggested the same thing yesterday. Guess I will boost the cheese and see how it affects my lactose intolerance.

 

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#12 Jerry.s

Jerry.s

    Advanced Member

  • Members
  • PipPipPip
  • 128 posts

Posted 07 April 2015 - 11:40 AM

I am not sure about my magnesium because my I don't think they check that in a CBC . My potassium and calcium tanked and they tried the potassium pills that will tear up your stomach so I quit those and I take about 2000 a day with real food .One banana, one coconut water 11oz and 8 oz of Carrot juice a day will take me really close to my daily goal . I am not sure if we can take calcium supplements does anyone know ?

#13 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 11 April 2015 - 08:41 AM

Taking additional potassium and magnesium is a very good idea when taking TKI drugs.  All TKI drugs deplete minerals faster than normal.  Mineral depletion can negatively affect the heart, bones and muscles.

 

 

Trey,

 

I've purchased a magnesium supplement. My choice was 63% or 100% daily value. In keeping with my "if a little is good, a lot must be better" philosophy I went with the 100%. I was surprised to see that the potassium supplement available was only 3%. Please be more specific about the m & p supplements you take and if I need to take this magnesium horse pill or if 63% is sufficient given my counts are well within normal.

 

Thanks!


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 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 11 April 2015 - 09:03 AM

My potassium supplement is 3% MDR, and magnesium is 100%.  But I know this amount of potassium helps me.  I only take them when it is hot and I am sweating a lot (I walk when golfing, and play all summer in the Texas heat).  If I don't take it I get muscle cramps.  So even this small amount is helpful.

 

Most potassium comes from foods.  Pill form is low uptake.  But I think a couple of the 3% pills per day could be helpful to you.

 

 

http://www.webmd.com...-topic-overview

http://www.mayoclini...on/drg-20070753

 

http://www.webmd.com...guide-magnesium


Edited by Trey, 11 April 2015 - 09:07 AM.


#15 DebDoodah22

DebDoodah22

    Advanced Member

  • Members
  • PipPipPip
  • 110 posts
  • LocationTexas

Posted 11 April 2015 - 09:09 AM

I have serious heart problems, inherited from my parents. No one in my family has made it past 60, no uncle, brother, what have you. I'm 63, have 5 stents in 3 operations, on more HBP meds than I can count, and a stroke is a constant fear of mine. My onc specifically put me on gleevec, because the other TKIs had heart side effects that he thought was dangerous for me.


Wow thanks for sharing that Dom...you must really feel like you are in uncharted waters...so is your CML under control now?

#16 DebDoodah22

DebDoodah22

    Advanced Member

  • Members
  • PipPipPip
  • 110 posts
  • LocationTexas

Posted 11 April 2015 - 09:24 AM

Thanks everybody -

I had some baseline tests run and then I started back on magnesium, D3 and added in some potassium foods for a boost ...not sure if it is impacting my blood levels yet, but my energy and affect are much better. I was really feeling run down there for a while. Of course, the short sprycel break didn't hurt either ( off for bit to tend to a shoulder pull). Now I'm back to taking the sprycel in the morning and supplements in the evening ...so far so good!

Appreciate your feedback Trey, and everyone on this board!

#17 Dom

Dom

    Advanced Member

  • Members
  • PipPipPip
  • 186 posts
  • LocationNew Jersey

Posted 12 April 2015 - 08:09 AM

Hi Deb, yes, my cml is under control so far on gleevec. I'm having my one year check up next month. I feel better than I've ever felt. I just feel like I've faced the worse curse possible, cancer, and I survived.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#18 DebDoodah22

DebDoodah22

    Advanced Member

  • Members
  • PipPipPip
  • 110 posts
  • LocationTexas

Posted 12 April 2015 - 04:56 PM

I really do wish we had a LIKE button....good to hear Dom. Let's take our victories where we find them! :)





Also tagged with one or more of these keywords: Blood pressure, heart health, sprycel, potassium, magnesium

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users