27 replies to this topic

[scuba]

This is a nasty disease - it just won't go away.

My 3 month PCR doubled from last test. I lost my zero. The measurment is easily within the one log error range for the test, but that's little comfort.

I had hoped my trend would continue downward. Instead I am either flat or its trending upward. I wait to hear from Dr. Cortes on whether I should increase my to 40mg. or just stay the course at my current 20mg.

There is one difference I did from last test (3 months ago) - I added 400mg. Resveratrol to my diet. It may be possible that the Resveratrol is interfering with the Sprycel. Resveratrol is a strong anti-oxidant and theoretically could scavange the Sprycel. I am debating whether to stop taking it and see what my PCR levels become in 3 months (while staying on 20mg. Sprycel). I have not found any data, however, on Sprycel interaction with Resveratrol (good or bad). I still take Curcumin (may increase it, in fact).

I am coming to terms that this will be a lifelong battle for me with Sprycel or some other drug in my life for a very long time. It is so contrary to my nature - but that's the way it is.

I'll have to find other experiments to try.

[rct]

I am sorry to hear of this.  What about neutropenia?  How is that going?

rct

[Taylor]

Dang, sorry to hear this.  I know it's disheartening.  It's also a bit interesting.

I think I would discontinue the resveratrol and not worry about upping the curcumin.  Just my opinion, but with the curcumin you might soon hit a ceiling and get diminishing returns.  At some point your body just won't be able to handle a certain dosage and you will just excrete it.

[scuba]

My PCR went from 0.06 three months ago to 0.12 this test. Dr. Cortes wants me retested in six weeks instead of waiting the normal 3 months. He told me the results are definitely within the margin of error, but could be slow progression. He wants me to stay at 20mg. Sprycel until next test.

I don't have significant Neutropenia any more. My Neutrophil level is just below normal (1.6 ; low end of normal is 1.7 according to M.D. Anderson).

[rct]

That is good.  I hope it stays where it is if they increase and/or change the drug.

rct

[Melanie]

So sorry to hear Scuba.  No doubt about it, this disease is a very long roller coaster with never ending ups and downs. I think it's encouraging though that your Dr wants to retest so soon and keep you on the same dosage. Maybe stop the Resveratrol till the next test and see what the results are. If the results are lower, then maybe you can assume the Resveratrol is conflicting with the Sprycel...if it's higher, then maybe it's no problem. I think it would be hard to determine either way.  Hopefully, you'll be able to stay on same dosage, since you seemed to have found a balance between the drug and your neutropenia. I would hate to see you have to start that battle all over again.  Blessings, Melanie

[pammartin]

Scuba,

Here and listening whenever you need.  Lets see how you do off the resveratrol,,I am encouraged you are to stay on the 20 mg. you are forging new territory, with you every step. 

Pam

[Susan61]

Hi Scuba:  So sorry your results were not what you expected.  I would definitely stop the Resveratrol, and probably do the 20g of Sprycel with no increase on the Curcumin just to see what the numbers show in 3 months.

This is a hard disease to conquer.  I know how determined you are to use natural things to fix the problem and find a cure.  I can only imagine how disappointed you are, but you are a very determined guy. 

     I missed something that was on the news last night, it was supposed to be about not all vitamins etc. are necessarily good.  I wanted to see what they were talking about.  I know taking Vitamin D, has put my level back where it should be.

Also, using Fish Oil Capsules everyday has brought down my Triglycerides considerably for the first time.

Its so hard to know what to do.  I just wish you well on the next result.  You have encouraged a lot of people on here.

[LivingWellWithCML]

Sorry to hear this, but definitely encouraged that the doc wants you to stay on 20mg Sprycel for now given the potential margin of error.  It's a super low dose, which is a positive.

Keep your head up, Michael - you're an inspiration to many of us in terms of how you attack this disease...

[ChrisC]

Bummer.

But, it's not the big picture by any means! You have had remarkable results and this isn't a trend, yet, we hope.

We're all rooting for you!

[Pin]

I'm sorry to hear this - I have to say I opened this thread with much anticipation - I was sincerely hoping you would get your zero sooner rather than later. Glad you can stay at 20mg though - as Dan said, your attitude is an inspiration to all of us.

[janne]

I can only echo what has been said. You have been quite the inspiration here. We will await your results off the reservatrol if that is what you decide to do. So many things can factor in.....like Susan says, it is hard to know what to do.  Your one man clinical trial is not over !! We are cheering you on Michael and we believe you will continue to have results that amaze your doctor and the rest of us !! Onward !! Janne

[scuba]

Thanks to all for the encouragement ...

Since I first reported my results I have been able to chat more with Dr. Cortes. All by e-mail - no need to see him.

He wrote:

1. Results are withing margin of error, so he has no concern.

2. He sees "pauses" like this all of the time. Usually resulting in a continued drop at next test. My increase if it is a true increase is small.

3. Keep taking the Curcumin. (that was interesting).

4. Stay on 20mg. I asked to increase, and he said, "NO". He said let's test in six weeks to see if this was an anomoly. I said, I really would like to go to 40mg. and he said, by all means if you can write your own prescriptions - I'm not writing it. Case closed on that one.

He feels that mylosuppression is more of concern than my slight increase (he calls it slight - I call it significant) in PCR. Stay on 20mg. (he wants to write a paper on low dose, I am sure of it).

5. On Resveratrol - no clinical evidence it matters one way or another. (another interesting comment).

6. He said he kind of looks like Antonio Banderas as I pointed out.

All's cool. We test in six weeks and see if there is a change. If in six weeks my PCR goes up, I go to 40 mg. (negotiated settlement). If it resumes the drop - then lab variance and I stay at 20mg.

So - I keep my lifestyle - no side affects, great cigars and nice Bordeaux. Life's good.

Thanks for all of your support. It means a lot.

Michael

p.s. I did seek some sympathy s_x from my wife. She said, "when you can write your own prescription". Can't milk this much longer ...

[Marnie]

I like your wife!

[pammartin]

Hey Scuba,

I think you need to get on the Internet create a script pad add your specific 'needs' and sign your name.  Your wife didn't say it had to be a legit right? Just that you had to write it.

[Happycat]

That's not the direction anyone would want to see, but it's still kinda a small increase in terms of log change, right?  I can see why Dr. Cortes said to stay the course and check in 6 wks.  It could just be a normal variation in results. Heck, maybe you were a bit more dehydrated on the second test, and had a higher concentration in your blood a result.

Resveratrol is a hot recsearch topic, but I still say it is just a good excuse to drink red wine.

Traci

[Susan61]

Hi MIchael:  Glad you got more information from Dr.  Cortes.  This sounded real good to me.  We all know how anxious you are.  You know we are all with you, and we always wait to hear your latest accomplishments.

Also glad your going to retest in 6 weeks rather than 3 months.  Then you will know what the next step is.

Your wife sounds like a great lady, you must drive her nuts sometimes LOL  You do have a Good Life. Enjoy it!!

Susan

[pamsouth]

Scuba,

The last LLS seminar I went to a couple of month ago, the Leukemia doc said not to worry if your test fluctuate in a wave.  He said you can take 12 different test and get 12 different results, up and down.  As long as you stay in a range.  Remember Undetectable doesn't mean you don't have millions of PH+ . Even if your PCR were to settle somewhere oround .12 or even a little up and down.  I would be thrilled to be able to take a low dose and stay in that range.  I don't see that as a bad thing. 

I am sorry in that you were hoping to be undetectable, so that you cold go solo with no drugs.  However I am still of a firm belief even if you are undetectable you could still have millions of CML+PH. and eventually on a low dose they will be back up somewhere, but I think it is great if you take a drug holiday or low dose so your body can do it naturally thing with the rest of the blood factory and organs.

So if I can just get to a low dose of TKI and have a good quality of life without effecting my major organs and keeping my CBC and liver and kidneys number close to normal. Then I am more then grateful.  These TKI are not cures, they only kill up to where the myeloid side starts.  I know you know all of that, and you were still hoping to go NO Chemical Drugs.  I do think we will have to wait until they come up with the root cause of cml and the cure at the top level. But then who knows what may be around the corner.

I did get my order of Physician Naturals SuperMax Bio-Curcumin w/Bioperine & Bromelain and they are Enteric Coated. The gentleman on the phone said they would go into my blood stream 7 x more strength. However they are not 1000 mg, they are 800 mg.  When I placed my order over the phone the gentleman said if the cancer was out of control take 8 otherwise take 4 a day.  The directions calls for 2 a day.  Before I received my order from Physician Natural, I had been taking Turmeric Curcumin from a local store, for about 2 weeks.  I am anxious to have my labs done June 7th.

Scuba, I would continue the 20 mg and same dose of Curcumin.  See if that is a happy best scenario for now. I mean 20 mg is a low dose, meaning in the long long run, you will have less chemical side effects to your body and organs.  The years go by and catch up with you and the chemical take their toll.  Chemicals aren't natural to the body, but hey you gotta take what you gotta take to stay alive.  Maybe there will be some more theories or studies out that will bring us closer to a cure.  Mean while I think you are doing good to stay where you are.

Funny you are not writing the script.  That can't of hit me between the eyes.  because I have been trying to think up ways to convince my new doc of lower the dose.  First I need to get my PCR down and I am hoping the Curcumin will help me do that if not on this blood test then maybe the next.  Of course I am only taking 2 or 3 so I might up that to 4, but I don't think I would go any higher.  I don't like over loading.  Like I said the directions only said 2 so 4 is already double. 

Hope your next labs stays in a range.

Good Luck, PamSouth

PamSouth

[Judy2]

Hi Michael,

I'm glad things seem better than you first thought, hopefully you will have great news regarding your next PCR test. Also, I say milk this as long as you can, there has to be some benefit to having CML.

Judy

P.S. As a side note, I saw your bio picture, you are a cutie pie!!!

[janne]

Michael, referring back to the discussion earlier this week in regard to exercise-induced PCR increases, you didn't by any chance vigorously chase your wife around the house the morning of your last blood draw did you ? just wondering.....