40 replies to this topic

[deva]

But is it normal that I feel my mouth burning soon after I take my Gleevec pill?

[Trey]

Normal?  No.  Gleevec normal?  Sure.

[deva]

I'm sorry for my poor choice of word. But it's just that I was just diagnosed and still in shock. I meant is it normal among people taking Gleevec? Is it a side effect? !


I'm fine with the Gleevec in general. I can deal with the cramps and tiredness. But the only thing that's bothering me are the white spots in the mouth on the hard palate. And as soon as I take my Gleevec pill I feel a burning senation in my mouth and also on my lips.

I was asked to do a biopsy by my oncologist to check it out for sure what these spots are. I did not do it because the dermatologist who gave me the 'diagnosis' was against it. He also said it was one of the side effects. He gave a cream,Synalar, to put on these white spots at night before sleeping.

[thatguy]

Various types of rashes/bumps on skin and mouth tissue are frequent side effects of TKI drugs. This is because they are not perfectly targeted against only the BCR-ABL kinase, but also affect other kinases we would prefer be left alone. These off-target kinases vary by drug, but the TKIs generally inhibit c-Kit and PDGFR as "collateral damage" which can affect the skin and mouth tissues resulting in rashes and other eruptions such as the Lichen Planus form and many others. So the real diagnosis is TKI side effect.

Just to provide the full story, these off-target kinase inhibitions allow the drug to work against other types of cancers such as Gastro-intestinal stromal tumor (GIST) where c-Kit needs to be inhibited and several types of cancers such as dermatofibrosarcoma protuberance and CMML where PDGFR needs to be inhibited. Gleevec is also used for these two cancers.

A tki "perk" for us, nice!

[deva]

Thank you all for sharing these information. My cramps are less and less now and the white spots in my mouth are less. Only my lips have a burning sensation especially when I eat. But I hope that too will be better soon. Thank you!

[Trey]

Here are some previous posts about mouth sores:

 

http://community.lls...res#entry163840

 

http://community.lls...res#entry147949

[deva]

@Trey Thank you!

[tiredblood]

I've got a question. Since switching to gleevec some of my muscles feel really tight. I recently had my magnesium level checked and it was within the normal range. Would taking a magnesium supplement help with the tightness or would it be unnecessary since my recent lab was normal?

[Pin]

I would listen to your body, my magnesium levels are always normal but I benefit greatly from supplements anyway. Phosphate on the other hand is often low in my tests, so supplements are needed to correct it.

[scuba]

It's important to note that blood serum Magnesium levels do NOT indicate whether you have sufficient magnesium. Maintaining blood serum magnesium levels is vital for survival along with potassium, calcium and sodium. Your body stores necessary electrolytes in bone and muscles (organs in general). When depletion occurs (not enough intake), the body will scavenge these electrolytes out of tissues to make sure the blood is balanced (electrolyte balance). Deficiency in the blood can be fatal - it is that important. Calcium by far is the most important followed by the other electrolytes.

 

So non-fatal deficiency symptoms (muscle aches and related) occur when the muscles are depleting magnesium (as well as potassium) in order to maintain blood levels. Even though your blood levels are normal, your body tissues may not be. This is why you felt better after adding Magnesium even though your blood is normal. Supplementing with extra magnesium will restore muscle levels and usually will solve the aches we feel in our muscles - especially at night. Magnesium is also very important for heart health since the heart is a muscle that MUST keep working. 

 

https://www.sott.net...st-on-magnesium

 

TKI's deplete magnesium out of tissues (not blood). I suspect our TKI-related heart issues may very well be related to Magnesium depletion in part.

[deva]

I had lots of muscle pain before. Still has but way way way less. I use magnesium and calcium. It comes together in a pill(375mg Mg, 800mg Ca). Some people go up to 600mg for Magnesium but I'm fine with this dosage. I take one per day. I also boil celery (around 5 sticks) and drink. Somewhere here gerry mentioned it. But he said he use celery seeds. Unfortunately it isn't available here. Since doing all these little things I'm feeling much much better. But I still have that burning sensation in my arm

[gerry]

My celery comes in supplement form   I initially took the celery to try to help with the fluid retention, but found it stopped the muscle cramps. I stopped taking it when I started TKI cessation, but found I had to restart it when the cholesterol drug I am on caused even worse cramps than Gleevec.

[deva]

Supplement form? Nice! Supplement stores don't have that here. But I'll keep searching. I went to a market. I was told the seeds might contain some pesticides and I don't know what other chemicals. That's why I'm sticking to 5 to 8 sticks a day and so far I feel a little better. But I feel out of breath and very low in energy. I'll get a multi and see if there's any improvement. Thanks

[gerry]

Might only be available outside the States, I'm from Australia, glad you're feeling a bit better. 

[gerry]

Scuba - some feedback on the supplements you suggested for cholesterol. Cholesterol normal, though still taking Ezetrol, will see if it drops in two months.
Interesting side effect from supplements my blood pressure is now low, not sure which of them is actually doing the work. I need to go discuss with the GP. Expensive way to manage BP though. I am hoping the big impact will be on the cholesterol. I really want to get off that one if I can.

[scuba]

So I have a Supplement question too...

 

My cardiologist had told me to take OTC Mag Oxide 400mg twice a day after my cardiac event a couple years ago. (It is the most common on the pharmacy shelves) But I think it (Mag Oxide) really aggravates the diarrhea, upset stomach, and "sharts"... I had gone off all supplements for a week prior to doing a Hemoccult test this fall, and the diarrhea went away! That makes me suspect Mag Oxide is not the best formulation for me. I found some Mag Citrate, but haven't started it yet...  I see from looking here on the CML discussion that a lot of folks are taking Mag supplements, and SCUBA uses the Mag Taurate in particular. I have done an internet search on Mag supplements, and am confused as to which one would be best for me to take. There are so many to choose from!

 

Also, in addition to the proper Mag Supplement formulation, what other supplements SHOULD we CML patients be taking regularly?

I do take Citracal Plus and a daily Centrum Silver for Women in addition to my MagOx.

 

I see my Oncologist on Monday and will ask him to check my Mag level. (Isn't the Mag level supposed to be checked periodically anyways while on Bosutinib and other TKIs?)

 

Thanks for any information you can help me with. I am so tired, and weary of being chronically sick.

 

Romary,

 

You had a cardiac event. The best Magnesium supplement related to heart issues is Magnesium Taurate. I take 250 mg. MINIMUM of Mg Taurate per day - often much more - up to 600 mg or so. Mg Taurate is much less likely to affect the intestinal tract - mostly because it gets absorbed better than magnesium oxide. 

 

I take Magnesium Taurate (125 mg) when I first wake up and then when I head to the bedroom to sleep. I do take Magnesium Malate during the day, but only when I see it on the counter. With or without food doesn't matter.

 

Blood levels of magnesium are NOT and indicator of shortage. Your body will make sure your blood plasma has plenty of magnesium - even to the detriment of muscles - and that includes the heart. So getting plenty of Magnesium requires more vigilance than just blood tests. You can't overdose on Magnesium per se ... if you take too much, your body won't absorb the excess and you get Trey's sharts and then some. So cut back at that point. I have had no issue and I have taken as high as 800 mg per day.Stay below 800  and you will be fine.

 

To your health.

[gerry]

http://bbc.in/2d7CGR9
Does turmeric really help protect us from cancer

[scuba]

As most readers of this forum know I have been taking/using Turmeric (cooking) and Curcumin supplements for years. I consider Turmeric/Curcumin as nutritional support. There are many studies which show Curcumin impacting many bio-systems in our bodies. But that is also true for "food". Food feeds us necessary chemicals that our bodies use to strengthen our immune systems, build tissues and otherwise keep us healthy. Turmeric is a "food". 

 

This is in contrast to drugs. Drugs are developed which have very specific targeted impacts. These targets are clinically tested and scientifically validated. Drugs which are approved are validated to work as tested. Our TKI's are a text book example. And that is why we take them. They work as intended - for most of us.

 

Turmeric has not had the clinical rigor to classify it as a drug. It is not a drug. Attempts at testing it as a drug have failed - mostly because it has many bio-active mechanisms. It gives many false reports of clinical activity in limited test settings that do not stand up to rigor. Unfortunately the only way to truly test Curcumin's impact is to set up full scale clinical trials in a clinical setting. This can take 10 years and $2 billion dollars. As Curcumin is a naturally occurring substance that has been ingested by people for millennia - it can not be patented. There is no money for drug companies to pursue.

 

But - in the same way that taking extra vitamin C - or making sure your vitamin D level is at the right level - or that you take foods rich in zinc, selenium and anti-oxidants (i.e. plants) - Curcumin has health benefits that are in fact documented to augment our TKI's effect 

 

Curcumin is no cure ... anymore than eating grapefruit is a cure for anything. But Curcumin's documented properties and known to interfere with enzyme pathways necessary for cancer growth. It can be a valued addition to your nutrition program. 

 

In my own case, I have seen my PCR numbers go up when I slacked off Curcumin (i.e ran out of my supply temporarily) and have seen my PCR numbers plummet when I added Curcumin to my TKI regimen. I am convinced Curcumin is why my PCR/FISH numbers plummeted while only taking 20mg Sprycel. I struggled to get control of CML (borderline accelerated phase) until I added Curcumin to my diet.

 

Curcumin comes from Turmeric ... which is a root. Other roots contain similar compounds like Curcumin. I have made a practice to add lots of roots to my diet. Beets, onions, garlic .... these all have similar compounds that make life for cancer cells - horrible. Even potatoes! Peoples who eat lots of these foods have lower rates of cancer than those who don't. No cure - just shifting the odds in our favor. That's how I look at it.

 

I take between six and eight grams of Curcumin per day. 

 

ONE big benefit of Curcumin that you will likely feel - is decrease pain from inflammation. I no longer experience joint pains (arthritis) as my parents did (runs in the family). Curcumin is a natural cox-2 inhibitor (similar to aspirin...another plant derived substance) and it has a mild blood thinning action (relaxes arteries). Curcumin is good for the heart, lungs and other tissues. 

[gerry]

It was an interesting show - I've switched from a curcumin supplement to the turmeric powder and add it to a glass of milk.

[beno]

http://bbc.in/2d7CGR9
Does turmeric really help protect us from cancer

I started taking turmeric, along with drinking green tea, eating blueberries, etc about 6 years before I was diagnosed.  I started when my Mom was diagnosed with cervical cancer.  Obviously, it didn't work for me, but small sample size and what not.

 

I started eating pumpkin seeds to help with mineral depletion because the supplements were hard on my stomach.  They are tasty and high in magnesium and fiber.  I get pretty bad sores in my mouth and letting a milk of magnesia tablet dissolve right on the sore greatly reduces swelling, pain, and longevity of the mouth sores.  You just have to be careful not to do too much because of the laxative effects of milk of magnesia.