18 replies to this topic

[WoofWoof]

After being on a reduced dosage (600mg/day vs. 800) of Tasigna for the past month, I got my latest test results. Looks like an upward trend to me- not at all what I was hoping for. Waiting for my Onc. to call & realize the d*mn phone is out! I'm going to take it upon myself to increase my evening dose. By the by, what % log do these last numbers represent?

I'm figuring it's a 2 log increase?

Date           b2a2   b3a3     e1a2

9/9/09      5.97%   0.00%   0.00%

9/23/09   27.63%  0.00%   0.00%

1/8/10      0.00%   0.00%   0.00%

6/24/10    0.00%   0.00%   0.00%

9/24/10    0.00%   0.00%   0.00%

12/16/10  0.00%   0.00%   0.00%

3/18/11    1.23%   0.00%   0.00%

4/28/11    0.60%   0.00%   0.00%

8/12/11    1.339%  0.00%   0.00%

[scuba]

Looks like your CML resistance to Tasigna is increasing.  Tasigna and Gleevec are similar drug design.  Tasigna binds more tightly in the ATP socket of bcr-abl.  Rather than increasing your dose - you might consider switching to Sprycel (or another drug on trial).  Sprycel attacks CML differently and might be able to get you down into PCRu better.

I would not wait.  Talk to your Oncologist right away.

[Trey]

Too much of a trend.  Dosage increase is one of the less effective means of reversing an upward trend, but short term it is better than the current lower dosage.  But I would switch to Sprycel.

I'm surprised Micheal did not also suggest daily curcumin -- aborally administered.  Otherwise known as "other then oral".  Just sayin'

BTW, what is b4a4?  "Before afore" I can somewhat understand; but I don't understand "b4a4".  Just sayin' ag'n...

I would think you can get the response back with Sprycel.

[scuba]

Oh yeah - Trey reminded me:

http://www.progressi...letter=C&page=7

Curcumin baby - two of these puppies per day; in the morning with a Fish oil Omega-3 pill (helps dissolve into the blood stream) is what I take.

[GerryL]

Hi Michael,

I'm starting to come round to the idea of taking circumin - I already take fish oil. I'll wait to see my results in October and if I'm still at MMR, I might try the circumin to see if it can knock me into PCRU.

Will be taking it orally though despite Trey's suggestions.

Gerry

[scuba]

The more I read about Curcumin - the more impressed I am with its benefits in the body overall - not just for CML.  According to Dr. Aggarwal (M.D. Anderson), normal dose of Curcumin is about 500-2000 mg per day.  But for cancers - he recommends 8,000 mg (8 grams) per day (using the 95% Curcumin powder (what you find in health food stores)).  The body can handle up to 12 grams per day of the normal Curcumin with no toxicity.  8 grams is a lot because the body does not absorb Curcumin very well (it's hydrophobic).  Mixed with oils (fish oil, flax seed oil, etc.); Curcumin absorbs much better.  The Progressive Labs version is micronized to enhance absorbption by over seven-ten times.  So I take 1 gram of that per day with a fish oil capsule.

Curcumin is a strong anti-oxidant (much more so than green tea for example) and is a strong anti-inflamatory.  Curcumin's main benefit is cardiovascular and heart health.  So I take it knowing that it's good to take.  Heart disease in the sub-Asia populuation is 15-25% lower than in the west.  Leukemia is 10% lower.  And they don't take Curcumin (via Curry) at the high dose that Dr. Aggarwal has found to be therapeutic (Curcumin effect is dose dependent). 

Whereas the TKI's we take (Tasigna, Gleevec, etc.) are toxic to the body - Curcumin is not.  It's natural - it's a root just like beets (which are also good for you).  In fact, roots in general are just darn good for the human body.  We don't eat enough roots.  Roots are chock full of chemicals that slows/eliminates bad cell division and enhances good cell division.  That's why you see lots of old sub-Asian folks on the covers of National Geographic. 

It is my plan to get to PCRu with the help of Sprycel.  If I can stay that way for at least 3-4 cycles (PCR tests) I will go off the toxic drug and stay with Curcumin.  I anticipate that I can stay PCRu.  If not - and my PCR rises into the detected range - then I will just go back on to Sprycel (and probably stay on it for several more years before I try going off again).  I will always try to get off these drugs. 

[LivingWellWithCML]

Question for our board experts: Given this trend, is this an appropriate time for the onc to order a kinaise mutation test?

I'm still early in Gleevec 400mg treatment (5 months), but I've personally ruled out Tasigna if I lose response -- for the reasons that Michael mentioned. I'm in you guys' camp on this one -- make the switch to Sprycel. I've been in touch with a local who started on Sprycel at dx and she uneventfully reached CMR in ~ 6 months.  This response velocity can happen on the other TKIs as well, but it just seems to have a better and more consistent chance with Sprycel.  Amazing stuff.

BTW, Michael -- your case is fascinating and continues to give us hope that natural methods can enhance our ability to beat this disease into submission.  A few questions:

** What brand of fish oil supplement do you recommend?

** Were you taking 1g daily Curcumin + fish oil capsule when you were on Gleevec initially?

** To maximize absorption, any recommendations on what to eat/drink for breakfast when taking these two supplements?  Is it a bad idea to take the TKI at the same time as these supplements?

[scuba]

Dan Wrote:

(BTW, Michael -- your case is fascinating and continues to give us  hope that natural methods can enhance our ability to beat this disease  into submission.  A few questions:

** What brand of fish oil supplement do you recommend?

** Were you taking 1g daily Curcumin + fish oil capsule when you were on Gleevec initially?

**  To maximize absorption, any recommendations on what to eat/drink for  breakfast when taking these two supplements?  Is it a bad idea to take  the TKI at the same time as these supplements?)

My answer:

I use whatever fish oil my wife buys - it has a red cap, biggish bottle and the capsules are somewhat larger than vitamin pills.  That's all I can say until I get home and actually look at it.  I believe she buys it  from Whole Foods or some such place.  It's fish oil - if I break it open - it smells terrible - so I don't do that.

I never took Curcumin with Gleevec.  I only started Curcumin during my first Sprycel break back in February.  It was at that time that a friend of our family that wasn't suppose to know that I had CML - but my wife told her -  told me to look into it - so I did.  I was impressed enough that I started researching it and taking it during my long TKI break.  It was during this time that Dr. Cortes was surprised that my counts were not climbing back faster (I was on zero therapy) - he expected my counts to bounce back over two weeks and then I would resume.  He told me my counts were recovering at a rate that he sees from his transplant patients.  My counts took months to come back.  I believe it was the Curcumin suppressing the Leukemia.  I wish I had tried Curcumin FIRST when first diagnosed to see what it would do to the WBC count as an experiment.  I have a suspicion it would have leveled off the WBC growth (i.e. counts don't get worse) or even cause it to drop.

I actually started taking 3 grams, then 4 grams, six grams and then finally 8 grams of Curcumin around 3 months ago.  I increased it every few days as per Dr. Aggarwal's suggestion.  This was the 95% C3 Curcumin.  It was a lot of capsules (500mg each).  When I learned about BCM-95 - I switched to that formulation so I could take a lower dose that was as absorbant as 8 grams of normal Curcumin.  Very important that you don't confuse doseage grams from one Curcumin to another.   You need 8 grams worth of Curcumin per day.

I take Sprycel at night before I go to sleep with water.  I take the Curcumin in the morning with a glass of Juice (lately - beet juice) and the fish oil.  I don't take Curcumin and Sprycel at the same time - no reason not to - I just don't.  I hate taking pills as it is.

Once I started taking 20mg. Sprycel - I had myelosuppression again, but not as bad, so I stayed on the medication.  And that is when the big drops occurred over just two months.

I also take a folate supplement when I am not drinking beet juice and vitamin C when I can remember to take it (Trey's recommendation on the folate/C).  I am somewhat anemic and need to support red blood cells as much as possible - although I have been feeling much more energetic since drinking beet juice the last week or so.  My wife makes the beet juice from beets, plus apples and other stuff she throws in the juicer.

On Gleevec (even low dose at 300mg) I had the fatigue, muscle cramps and skin issues that you read about.  On Sprycel - both 70mg initially and now my normal 20mg dose - I have none of that.

[LivingWellWithCML]

Really helpful - thank you!  Definitely debating whether to try this out......

[WoofWoof]

Trey- b4a4 was a mistype of e1a2

Don't ask how, guess my paws got in the way of my typing.

[Trey]

Michael:

You said:

"I use whatever fish oil my wife buys - it has a red cap, biggish bottle and the capsules are somewhat larger than vitamin pills."

Answer: Those are suppositories.

You said:

"I switched to that formulation so I could take a lower dose that was as absorbant as 8 grams of normal Curcumin"

Answer: You are NOT supposed to use them as maxi-pads.  Just sayin'  Weird, man.

You said:

"I take Sprycel at night before I go to sleep with water"

Answer: Sleeping in a wet bed can give you a bad Cold.

You said:

"...I am not drinking beet juice and vitamin C when I can remember to take it"

Answer: Seems they are negatively affecting your memory.

You said:

"My wife makes the beet juice from beets, plus apples and other stuff"

Answer: Your wife can turn beets into apples???  Wow.  Please post her recipe.

To which you added: "she throws in the juicer"

Answer: And you eat it too without complaint?  Wow.

So, overall, your wife is a magician, you use curcumin as a sanitary device, and eat mechanical objects such as juicers and such.  Sounds like you need a mutation test.

[scuba]

Well done, Trey!

Your tagmemic skills are impressive.  Your parsing ability not to be outdone by anyone - except maybe PhilB.  I sit in awe.

[Skittles]

Trey, thanks for a good laugh to start my day!!!!!   Hope your day is as good!  Skittles

[Susan61]

Hi Gerry:  How much FishOil are you taking?  I just found out that the blood clot in my  leg has dissolved, and I was taken off my Coumadin, but she said she wanted me to take 1200 mg.or mcg or whatever of Fish Oil everyday.  I know its good for your heart, but I was curious what dose everyone is taking.

[GerryL]

I take the recommended dose on the supplement bottle - sorry Susan can't be of anymore help than that. I know it isn't a high dosage fish oil if that is any help. Apart from your heart, it is alsosupposed to be good for your skin -  especially where our skin may become thin from Gleevec. It is also supposed to help with things like Alzhimers by creating new pathways in the brain. One of my GPs asked if it was working, I told him if I can rememeber how to get back to the doctors in around 30 years time without too much difficulty we will know it worked.

Gerry

[Susan61]

Thanks Gerry:  Maybe it will help my Chemo Brain.  I keep forgetting to take it.  I will have to leave it near my Gleevec for the morning dose.

[Taylor]

Hi WoofWoof, I tried to send you a PM on this but your box is full.  I was just curious as to a follow-up, I tried to look but I didn't see anything.  Hope you got something worked out!

[jenz]

WoofWoof,  How long were you on the 800 MG dose before switching to the 600 MG?  Also why did you lower your dose?

I am getting worried now as I just lowered from 800 to 600 MG about a week ago.

Jen