18 replies to this topic

[sarahboxley]

Hey everyone,

Yesterday was my 1 year anniversary of my CML diagnosis. I am in MMR with PCR of 0.06% as of June. I take 600mg of Gleevec daily (we are talking about reduction of dose), and I have had minimal side effects.

This summer I started running again, and I have been playing tennis again for 6+ months. I had experienced occasional muscle cramps, but they got worse this summer. I also feel lie my ankles are more swollen than usual (slightly puffy ever since I started Gleevec). I chalked it up to dehydration from running, heat/humidity, etc and tried to really focus on drinking more water.

I see a community onc every 3 months to help cut down on my travel to my CML specialist, and they keep each other up to date on my progress, labs, etc. My CK has been borderline high for some time now, but it is holding steady just above the normal range. Last week, my local onc tested my magnesium & calcium levels to see if that could be related to my muscle cramping, and it turns out I have low magnesium. The nurse called at 430 on friday, so I didn't get a lot of info other than they had called in a supplement.

Does anyone have this same problem? I don't think Mg has been tested before now, so I don't know how old or new the problem is. Is it something caused by Gleevec? By CML? Just trying to get a better grasp on it. I looked at foods high in magnesium, and I actually eat almost all of them on a regular basis. I also take a vitamin.

Any thoughts, resources or similar experiences would be helpful. Thanks!

[GerryL]

Hi Sarah,

I take a Calcium, Magnesium & vit D supplement and was doing so before Gleevec, magnesium is supposed to help with migraine. I've continued to take it though it didn't do much for the migraine as Gleevec can affect your calcium, magnesium and vit D levels. If you are taking calcium as a supplement, just take it away from the time you have your Gleevec. I take the majority of my supplements at night and the Gleevec in the morning.

Your puffy ankles could also be due to fluid retention, I tend to get it around the ankles due to taking my Gleevec in the morning and the fluid starts to build up during the day.

[Susan61]

HI:  I am actually going to ask my doctor to check my Magnesium, because I know long term use of Nexium can cause a low Magnesium level.  The Magnesium and your Phosphorus levels is a different panel of blood work, and they never order it on me.  I have a tendency to have a very low Phosphorus.  I also take VItamin D, and my level has come up to normal.

    I get the puffy ankles once in awhile, but the puffy eyes is everyday.  Especially my right eye.  I have even noticed blurry vision with my right eye.

Susan

[GerryL]

Hi Susan,

I've noticed I've had blurred vision from time to time, I've put it down to fluid retention as well.

[Trey]

I have found that if I am active and perspire a lot on a hot day I get cramps very easily.  Taking extra potassium, phosphorous, and magnesium makes such cramping much less likely.  I make my own mineral drink out of a cola soda (phosphorous), and add a potassium and magnesium pill which dissolve.  I also put extra salt in the mix.  Trial and error has shown this approach to be very effective.

[GerryL]

Hi Trey,

I haven't had any toe cramps (touch wood) since I reduced the dosage. Don't experience the leg cramps all that often now - but now I get them more around the time I've taken a fluid tablet. I think dehydration causes most of mine now.

[Trey]

Lasix pills cause both dehydration and mineral loss.  All water pills  take out a lot of minerals along with the water, just like profuse sweating while working outdoors on a hot Texas day (hence my "poor man's gatorade" cola cocktail with added minerals and salt).  Since our TKI drugs already cause loss of minerals, any further loss of both fluids and minerals/salts (either Lasix pills or serious sweating) can significantly increase muscle cramps.

Lasix precautions say:

"This medication may cause a serious loss of body water (dehydration) and salt/minerals."

http://www.rxlist.co...precautions.htm

[Susan61]

Hi Billie:  After reading all of the posts, I think I have to get some Magnesium.  I think I will try the 250mg like your doctor had told you.  Is it possible to take too much?  I am suffering so bad with the leg cramps, and sciatica down the back of both legs.  I do not know if this all has any connection or not, but I have been in such pain for weeks now.  I know I need knee replacement, but I am not doing that either.  It feels like everything is being thrown off in my system.

   Hope you and Ron are doing good.  Still going through a lot around here.  IT just never ends.

Susan

[pamsouth]

Since I have lost 35 lbs, I have had to adjust my blood pressure pills.  Also, I no longer take the diuretics (which I have taken since 1997).  I only take a small dose of blood pressure pill as needed, which is rarely, mainly when I go to the doctor.  I do check my blood pressure every day.  Since I stopped the diurectic, I noticed I do not sweat as much, or have the severity of leg cramps. 

Wouldn't stop taking Diuretics unless you talk to a doctor though.  It was the kidney specialist that told me "you usually don't need a diuretic unless you have swelling of the ankles, lower legs, feet, if you do, then you need the diuretics."  I don't have that (swelling of the ankles/feet) but occasionaly I get swelling of the hands mainly the left, as I have bone spurrs, the doc said "when your hands swell try not to take them and see what happens."  Well I did that, not take diuretics when hands swells, and the next day the swelling goes down.  If hands swell, I try to drink more water.  I noticed they swell mainly if I am in the hot sun, humid weather, or eat salty food.  Also hoping the next GFR will be better due to not taking the diuretics, (because I don't need them!) and dehydrating the kidneys.

I think some of my health issues were due to other drugs/combinations, along with aging,  then the TKI, Gleevec, which I do not have much of a choice there!

In any event just losing the weight, exercising more, and dropping some of the other med's was a big help in improving my health.

Almost forgot my labs showed I was vit d2 deficient and vitb12 was only 99, range for vit b12 being 90 to 300, should keep it around 200.  Have a new primary doctor and will go for labs in a couple of weeks to check for a lot of other things.  Don't know why my other primary doctor from 2001 never checked on these vitamin deficiencies.  Sometimes need a new pair of eyes.  My old primary liked to blame everything on depression and anxiety and the golden years.  When I think how many years I should have been checked for toher things.  well all I can say is I should have changed Prim Doc's a long times ago.  I use to think well I have been with her for a long time so she will know more then a new doc, but this is not always the case!!

OH, just one more thing, thanking the Good Lord for new insight, with the help of others and a new medical team.

PamSouth

[Susan61]

Being your e-mail is not working, let me give you a quick rundown.  Gary did not get surgery for the blocked carotid artery, but he is undergoing cystoscopy this Thursday, and then every 6 weeks he has to get another one.  He will be starting a 12 week course of chemo when the Cystoscopy results come back.  They do not operate when you have a 100% blockage in the carotid or it can cause a stroke. He will be monitored every 6 months for the other carotid to be sure it does not block up too.

Hope you feel better soon!!

Susan

[sarahboxley]

Thanks to everyone for your input! I definitely notice the cramping more on days when I exercise, particularly outside, so everything you all are saying makes sense. I started the magnesium supplement over the weekend, so I have my fingers crossed that it'll work. Trey, any particular soda that ou use? Also, do you take your homemade concoction in the AM before your activity during the day, or is it better at night to replenish minerals you lost during the day?

[Trey]

Sarah,

My secret recipe (this is just between you and me -- please don't tell anyone else) for "Trey's World Famous Anti-Cramping Soda Mineral Concoction" (aka "Trey's World Famous Poor Man's Gatorade") is Dr Thunder soda, 2 heavy pinches of salt, a potassium pill, and a magnesium pill.  Instructions: Fill an empty 16 oz bottle 1/4 full with Dr Thunder (regular or diet) and freeze overnight (this step prevents having ice dilute the soda).  In the morning add the salt and the pills*.  The pills will dissolve on their own.  Fill the bottle to the top with Dr Thunder.  Caution: DO NOT SHAKE!!!  Put in an insulated spot (I wrap it in a small towel inside my golf bag) and sip it while playing golf in the Texas 100 degree heat. 

*Norwegians may want to lick the pills first and spit, as is their local custom.  Others may find this odd, but they have never eaten Lutefisk.

[TeddyB]

Haha, if you ever find yourself in Norway Trey, give me a call and we can spit and eat lutefisk together. Skål

[sarahboxley]

Trey, thanks. It'll be our little secret. We happen to be diet dr thunder (DDT) fans in my house, so this should be doable. I will give it a try for my tennis match tomorrow. Supposed to be 88 with 10000% humidity - perfect! Many thanks.

I've been on the magnesium for 5 days now, and I do think it is helping. Will be interested to see how this goes.

[GerryL]

Hi Trey,

Had to look up what Dr Thunder was exactly, as yet, they haven't tried to market it over here.

They tried introducing Dr Pepper but it didn't do very well - Coke and Pepsi have the lion's share of the market.

[August1]

Hi,

I had some of the same cramping and muscle weakness symptoms after one year on Gleevac. I started taking a magnesium (250 mg) supplement along with calcium and complex B vitamin (in order to get B12). This seemed to help a lot, especially with the cramping. I think it is important to balance magnesium with calcium and of course with a healthy diet as well and to talk to your onc to get recommendations. Today I am able to jog and participate in daily activities as I normally would although I do have some generalized and pervasive fatigue which I've just learned to live with as part of my condition.

Every day is a blessing and every breath is a gift. I try to remember this at all times, although it's not always easy!

I hope this helps!

Bill