25 replies to this topic

[jrsboo]

Has anyone seen a large jump in cholesterol since starting Sprycel?  or the other TKI's?  Prior to diagnosis a year ago, my cholesterol was just borderline high, today it is 324.  I have not changed my diet that much, in fact, eating better trying to take care of myself! 

I am a bit worried as I also see that taking Statins while on Sprycel may not be such a good idea.......

Hmmmmm.

--Caroline

[GerryL]

Not sure about taking Statins on Sprycel - but I had an issue with taking it on Gleevec. My cholesterol dropped below normal, so I started decreasing the Statin until I eventually went off it. My cholesterol started to go back up - good old Gleevec made the liver store up the Statin which can be bad for your muscles. My GP recommended Psyllium Husk - I take two teaspoons a night in a glass of water, well away from any other medication as it can prevent the absorption of medication. My Cholesterol is slowly coming down, and I do mean slowly. Due for a blood test sometime this month, hopefully it is still on it's way down.

[scuba]

I drink wine for my cholesterol.  I also take 250mg of Resveratrol (just started actually to do that) - which is the stuff in wine believed to be great for your arteries. 

I was bottle fed wine.  Those in my family who drank wine the way they were taught have had no heart issues and lived to be in their 90's.  A few of my relatives who stopped drinking wine because they protested the family - died.  Of heart related problems. 

So - those that drank wine - lived to old age.

Those that didn't - died young(er).

Those that smoked cigars - told the good stories - and lived to old age and were fun to be around.

Those that didn't - were boring.

My cholesterol goes up and down depending on my weight and food - but my arterial calcium level - which is the better indicator for heart disease is zero.  At my age, zero is unheard of - but it is zero.  I drink wine. 

(and when I don't drink wine the few days in a year that that occurs - then I drink Johnnie Walker Black, Blue or XR21).

[pamsouth]

Scuba, Regarding Resvertro which is found in wine.  I googled it on the world wide web.

Maker Puritan Pride,

This is an excerpt.

Resveratrol is the beneficial nutrient found in red wine. And now you can enjoy the benefits of Resveratrol without the alcohol or the calories.**

Resveratrol is an antioxidant that fights against free radical damage

You'll get more Resveratrol in some of these formulas than you will from an entire bottle of red wine!

[GerryL]

But where would the fun in only having the Resveratol rather than the wine be for Michael.

I don't mind the occasional glass of red wine, but it seems to make the fluid retention from the Gleevec worse for me.

[pamsouth]

Funny, I read this to my husband.  He is 70 years old and just had a check up yesterday.  Last year the doctor about killed him with an abundance of medicine.  Also he was allergic to the arthritis medicine, mobic.  Anyhow I thought I was going to have to put him in a nursing home, last fall in 2010.  I kept telling him you didn't get this bad until you went on that arthritis med's then they added pain med's, neuropathy med's, etc. His labs were a mess!!  I was taking him to so many doctors, dress him, feeding him, his hands had swelled so bad he couldn't dress or feed himself, he was falling over the place, couldn't hold his head.  Make a long story short I weaned him off the medicine and took him to physical therapy.  After a couple of months off the med's, His labs were close to perfect, except he still has arthritis.  But he works part time and is up and about.

When I took him to the doctor yesterday, the doctor tried to put him on statin for cholesterol.  I thought the doctor must be crazy.  Larry took a statin from 2005 until he got sick in 2010 and his cholesterol levels were so low, he never went back on the statin med's, when he recovered last year.  Anyhow yesterday the doctor wanted to put him back  cholesterol, because the doctor said he wanted his cholesterol  down to 70.  Is that not crazy?  My husband's Cholesterol is 161 with no cholesterol medicine. Normal according to this lab report is 110- to 200.  His HDL and LDL is in normal range.  Why taken another chemical with his metiformin and lisinopril. 

What puzzle me about my husband lab for the last few years is, his Eosinophils go up to around 5 ? 6 ? 7. normal being 0-3.  He asked the doc what that means.  Doc said well it has to do with your white cells.  Now all of us MCL patients know that.  But doc said not to be worried, that is not much and it is probably allergies.

The thing is my granulytes were never ever very high either, my white cells never got over 21 thousand.  Just 2 million platelets.

My husband mother died at the age of 41 of Leukemia not sure which kind except it had to have been acute.  She was a tiny, busy, fun lady, who one day got sick and died 3 month later in 1962.

So I guess I was a little worried about Larry's Eosinophils being high.  However when I took Larry last year to my old Onc she run a test for lymphoma, not leukemia.  I think the reason she did that was because he had so much bone pain, arthritis, bad lumbar, bad rotary cuff, and needed shoulder replacement.  But the test was negative and she said his Eosinophils weren't high enough to worry about Leukemia.  I told the ONC my weren't never very high either.  Otherwise the primary should have caught it on my 2002 CBC when my platelets were high and my granulytes off, I guess not enough.  So thee years later platelets 2 million.  Doctor was suspecting Leukemia with high platelets. But for now every ignores his high eosinophils. I reminded the doctor his mother died of Leukemia and well its not hereditary. 

The doctors nurse said and what would you do if it was,  I thought never very smart nurse when it come to cancer.

I sure got off the subject of the whine and went chasing rabbits, down memory lane. 

I told Larry maybe he should drink a couple oz of whine a day, he doesn't drink any kind of liquor and tell his doctor about the article.

PamSouth

[VickiW]

Hi and Merry Christmas!!!

Ok, here's the scoop.  I was on Gleevec for 2 yrs. and my cholesterol went to low normal from being borderline high.  It was found in a research study in europe that this was an unexpected side effect of taking Gleevec for more than half of their test subjects.  However, 2 yrs ago I switched to Sprycel and my cholesterol skyrocketed within a few months.  Between my body adjusting to the new meds and my own adjustments to my diet I have managed to get it to stablize at around 210.  Not great but much better than it was a year ago.  If you are on Sprycel, be warned, alcohol is a complete NO NO!  My Onc wouldn't even ok more than a single glass (and a small one) for a Christmas toast!  Even though all my CBC's show no problems.   Sprycel is just too rough on the kidneys and liver.  I have brought mine back under control just with a little common sense and a lot of oatmeal, yuch.

[scuba]

Vwoyak - Just goes to show that opposite views are everywhere in this disease. Drink this - don't drink.  Eat this - don't eat.

Trey, for example, enjoys the hearty, juicy, quite tasty Texas Ruby Red grapefruit. One is not suppose to eat that on Gleevec. 

I have been on Sprycel now for about 8 months not including the beginning of the year when I tried to start before a drug interruption.  I have had more wine and more than occasional Scotch than most as a regular part of my diet.  I love wine.  If drinking wine is going to kill me because I am taking Sprycel also - then off to the Pearly gates I go. Life is short as it is than give up what makes us happy. And not mention a fine cigar from time to time (not a habit like wine).  I was breast fed wine (Italian ancestry). It's genetic for me so it is part of my diet. My cholesterol is controlled more by what I do about my weight (eat less, exercise) than anything else. If I gain weight, cholesterol goes up.  If I lose weight, my cholesterol goes down.

Regarding the liver - I find the resveratrol and Curcumin are very good for the liver. My liver enzymes are normal.  My kidneys seem to work.

So warnings aside. I do not believe alcohol is not a complete No No. But if you have an alcohol problem or liver problem or psychological problem - stay away from alcohol.

[ChrisC]

My 2¢: Sprycel + red wine worked great for me. Cholesterol rose a bit after switching from Gleevec to Sprycel, so have been eating less Camembert, etc., with the wine, with gradually improving results. To each their own

[jrsboo]

Thanks!  That helps to hear that I was not the only one. 

Caroline

[Elizablest]

I can't figure out how to start a new discussion so I will add my question here, since it is a similar subject. I am taking Sprycel for 10 months now. I was told you cannot take statins with Sprycel. It seems that many are taking them. I had my lipids tested and everything has gone up to "danger" levels. I don't like the idea of it. I wont die of Leukemia, but might die of heart disease because I can't take statins? Talking with my pharmacist, she says that Pravachol does not interfere with Sprycel. I spoke to my General Practitioner who refuses to order anything. She says she's seen higher so I don't need to worry about it. I'd rather not wait until my arteries are full of cholesterol and I have blocked arteries before something is done about it. But, I don't know what to do at this point. Any comments or suggestions would be appreciated. Note: alcohol is not good for me.

Also, for future reference how do I start a new discussion . I can't figure out a "place" to start.

[pamsouth]

Eliz,

Just curious what your lipid numbers were before starting Sprycel and what they are now?

There is a lot of controversy about taking statins.  Mine have always been a little on the high side, but I would prefer not to take more pills and chemicals.   Seems like the trade off are endless.  You take one thing and it causes something else and it goes on and on, in a vicious cycle.  I have a friend who takes fish oil and says that brings their numbers in the normal range. 

PamSouth

[GerryL]

At the top of the page there is a button called Create then select Discussion and then select Chronic Myelogenous leukemia.

[ChrisC]

An easy way to start a discussion: once you are signed in, look over along the right side, there is a column titled "Actions" in which the top item is "Start a discussion."

Re statins: keep learning about it, as it turns out that not many studies on their use relate to women. Women may not benefit from them so very much, it seems. Also, check into the side effects of whatever might get prescribed for you. The more you know, . . .

[Elizablest]

Thank you so much for the advice on starting a discussion. I will use it for the next time I do that.

I had been on low dose statins for years. My cholesterol levels were kept low... in the normal, healthy range. About two years before diagnosis, I started to have increased Alkaline Phosphatase. It was never determined what the actual cause of that was, but I was advised to go off the statins because they might have had something to do with it. I also stopped estrogen and tylenol. Still my alkaline phosphatase stayed high. Then, I got diagnosed and was told perhaps that had something to do with the alkaline phosphatase, which has now come down these last ten months since I've been on the Sprycel.

But, my lipids... ALL of them have climbed (except Triglycerides)

Total cholesterol          249          98 - 212          mg/dL          H

Triglyceride          221          <200          mg/dL          H

HDL cholesterol          35          >40          mg/dL          L

LDL Calculated          170          <130          mg/dL          H

Cholesterol to HDL Ratio          7.1          1.00 - 4.50                     H

VLDL (Calculated)          44          5 - 40          mg/dL          H

I started Sprycel in November. I've lost forty pounds from nausea, and find myself doing better as long as I eat fresh fruits and veggies, chicken and fish. But, even with all that weight loss and healthy food, things have not improved.

I am so frustrated, and find no references saying Sprycel could have anything to do with this. My doctor didn't seem concerned at all. She said she had seen people with a cholesterol count of a thousand and I shouldn't be concerned. I just don't want to wait until mind is a thousand before something is done.

Am I being unreasonable, expecting too much? Not understanding the counts as being bad?

[scuba]

Elizabeth,

Cholesterol is made in the liver - about 1,000 mg per day.. Your body produces it and 'tries' to regulate it. When you eat foods rich in cholesterol (animal fats in general) your body will make less. The problem occurs when we eat too much food with high cholesterol and overwhelm the system. So what we want to do is one or all of three things:

1. Eat less cholesterol

2. Help the body's system for natural removal of home grown cholesterol.

3. Prevent bad cholesterol from depositing on/in the arteries despite high cholesterol.

In my case I focused on number two and three, because number 1 is so enjoyable.

.

How does the body get rid of excess cholesterol. One method is by the body using HDL - High density Lipoprotein (so-called "good cholesterol"). to bind bad cholesterol. But this method doesn't actually get rid of the bad cholesterol - it merely scavenges it from the blood so our artery walls don't get clogged (number 3). Good cholesterol takes the bad cholesterol back to the liver for recycling. So in this sense we're still stuck with high cholesterol, but keeping it from depositing in/on the arteries achieves the same goal. Keeping your good cholesterol high is a good idea, but hard to keep up. Exercise and alcohol help keep good cholesterol up. Exercise is hard to do for some people and drinking moderate levels of alcohol is not possible (or even desirable) for other people.

So what to do (besides taking drugs)?

The body does have a way to actually get rid of excess cholesterol (the bad cholesterol, in particular). The Gall bladder.

The Gall Bladder stores cholesterol as part of Bile. Bile is what gets injected into the Intestines to help in fat digestion. Because Bile is so valuable - any excess gets reabsorbed in the intestines. So the key in reducing bad cholesterol is preventing Bile from getting reabsorbed.

Guess what binds to Bile and prevents its reabsorption (other than drugs)?  FIBER. Lots of Fiber in the gut.  When fiber is present, cholesterol in the bile gets bound up. It's not able to be reabsorbed easily. The body is forced to make more. Which means the body has to take Cholesterol out of the blood (via the liver) and re-stock the gall bladder. Eating lots of fiber helps reduce bad cholesterol significantly. Fruits, veggies...all of that you already know contain lots of fiber.

Oatmeal is an excellent source of fiber. A bowl of oatmeal in the morning is a cholesterol sucking machine. When the gall bladder injects bile into the intestines - if oatmeal fiber is present, the cholesterol in the bile is attached and unable to be reabsorbed. Cholesterol leaves the body. Unfortunately - oatmeal by itself does not trigger the gall bladder to send its cholesterol laden bile. The gall bladder is smart. It only gets busy when it knows FAT is in our gut. High fat triggers lots of bile. So when we eat low fat - much less bile gets injected. So eating oatmeal by itself will help lower cholesterol, but slowly. What we would like to do is eat high fiber AND have the gall bladder contract a lot at the same time as the fiber is in the intestines.

Curcumin induces much greater gall bladder emptying than the presence of fat alone (http://www.ncbi.nlm....dopt=Abstract).

This is interesting. So eating high fiber with Curcumin could, in theory, help lower bad cholesterol naturally and significantly.

I have not had my cholesterol checked since before I started taking Curcumin. I began adding oatmeal to my Curcumin regimen when I read about Curcumin's affect on the gall bladder. So I am going to have it checked in the next week or so and report here what I find out. We'll see what my cholesterol is and see if Curcumin + oatmeal is making a difference. Just a thought.

[Trey]

You can take statin drugs with Sprycel.  But  you could need to have the dose modified. 

http://www.drugs.com...-2439,2067-1359

Sprycel can rarely cause increased cholesterol, especially triglycerides, in some people.  But it could also be due to stopping the statins. 

[jrsboo]

Whoops, been gone for a few days from the board.

My original cholesterol before sprycel was about 200.  Not great.  But after a year and a half on sprycel, it was up near 300.  Bad.

I tried prevastatin, but that caused other side effects (rage--I know, I am wired oddly).  So I have been on Fenofibrate for about 4 months.  My numbers have dropped by 1/3.  Onc was astonished, as this drug is typically for something else, and doesn't usually work this well.  I know, I am wired oddly, very very oddly.

But onc (cml expert) said that the cholesterol rise was from the tki, even went to the nutritionist like she asked, who also told me my diet was good, and that it was probably genetics and the drug.

I hope this helps someone.

Caroline

[Elizablest]

Thanks so much, Scuba. I appreciate all your efforts to explain things to me. Some I already know, some I didn't.

My problem is that I am doing all the "right things". Eating a diet that is high in fresh fruits and vegetables, minimal sources of animal fats... only breast meat chicken, no fat and fish. I use oatmeal and bran products daily. My main source of fat is from olive oil.

I am unable to do much exercise in that I have some disability, though I do go for water exercise several times weekly.

I really don't mind taking a medication to help out, and I know that certain statins are not well mixed with Sprycel. Thanks, Trey, for the link. I noticed there are 500 drugs that are contraindicated with Sprycel. I am hoping I can figure out what medication might be useful.

Scuba, I will look up the curcumin and see what I can find. Interestingly, I have taken high dosages of it in the past when I was on a clinical trial for an autoimmune disease that I have. This was long before I was dx with CML. I will have to dig up my lipids readings for that time period and see what they were then.

Unfortunately I do not have a gall bladder.

Caroline, thanks for the benefit of your experience. I think we can all learn from each other. My body has weird reactions to some drugs too. Got a list of drug allergies an arms length long. Maybe the Fenofibrate will be useful for me.

Yeah, Billie, I agree with the changing doctors idea. It's not so much that I'm too quiet, it's the doctor who doesn't open up. It drives me crazy! Have already called around to see who else I can see. 

You all have given me such good information I feel more confident that there is something I can do to alleviate the situation.