17 replies to this topic

[scuba]

I just received my re-tested PCR results from M.D. Anderson.

Six weeks ago, I had my normal 3 month PCR test and learned that my PCR level increased from 0.06 to 0.12 (I lost my "zero"). It was within the margin of error for the test, but still disquieting. Dr. Cortes told me to re-test at six weeks and not change anything regarding dose. I take only 20 mg. Sprycel.

My test after six weeks returned 0.009 (from no zero's to two zero's).  This is more than a log drop from six weeks ago.

I am getting this response on only 20mg. Sprycel. (although I did increase my Curcumin intake to a full 8 grams).

There is a chance I can get to CMR (pcru) on only 20mg. I am hopeful.

Thanks all for your support.

To those who suffer side affects on Sprycel - a lower dose can work for you. You should consider it as a viable option before giving up on Sprycel.

And also note that the variance in the PCR test can be significant. The overall trend is what is important.

Michael

[Susan61]

Congratulations!!!  I do believe we will see you at PCRU just from what you are doing.  This is great for encouragement for others to see what can be done to fight this disease.  I will know in a few weeks if I am cutting back on my Gleevec.

I have a lot of concerns due to being on this 400mg dose for almost 12 years, especially my kidney functions that have me worried.  Medications can do one thing, but destroy another.  I have also been on blood pressure meds for many years too.  You keep doing what your doing.  Your positive thinking is helping a lot also.  You have me thinking about the Curcumin as much as the doctors that you see.

     I am going for my blood work on Monday??

Susan

[GerryL]

Congratulations Michael - hope you achieve PCRU.

[Marnie]

Congrats, Scuba. . .

I'm sure that it was difficult to wait for the re-test results.  Glad that they were good!!  I'm not ready to try a lower dose of Sprycel yet (and my onc isn't either), but it's really encouraging to watch your case.

Marnie

[scuba]

Hi Marnie - If you do not have Sprycel side affects - then there is no reason to lower your dose. But if you do have side affects that bother you enough to want to do something - then lowering your dose could work. It is working for me so far. I had a scare six weeks ago - and now my trend is even better than it was before the last test.

After two years of this disease - it's nice to see daylight. I feel I have a process now. My plan is on track.

[pammartin]

Michael,

Congratulations, and have a great time on your dive trip.  I am too tired to get up but I will do the happy chair dance for your results as they continue to head down to the undetectable level!  Enjoy all your goodies, but keep that Cuban smoke far away, even the highest priced, so called greatest smelling/tasting ones (to me) look and smell like dog poo.

Very very happy for you!

Pam

[LivingWellWithCML]

Congratulations!  I have no doubt you will reach PCRU ... Have a great trip ...

[scuba]

Thanks Dan - I mis-typed earlier. I am at 0.009 not 0.001 - so I still a way to go.

If I get to "undetectable" after going through all of this - then that is great news for a lot of other people.

[CallMeLucky]

That is great news Michael.  To me the big take away here is the variability in the PCR.  I told my dr, the last time I saw her "it's a BS test".  She said it is not BS, but it's the best we got.  I'm glad to see it swing your way this time.  Keep up the fight!

[Pin]

Wow - What fantastic news! Congratulations Michael!!

[scuba]

Thanks Gary ... The take away for me is 'dose'. Many Oncologists (including my primary one) just prescribe the highest dose and side affects be damned. Customizing dose in order to adjust for side affects is not widely accepted.  I am pleased that my case shows that it is possible to achieve a deep response on a significantly lower dose. And my response did not surprise Dr. Cortes.

Another take away for me is Sprycel. This is one powerful TKI. I only wish I had started on Sprycel in the first place. But Gleevec is a good first drug for many. And when it goes off patent in just a few years, will provide a low cost alternative for many people.

And finally - Curcumin. When I had the blip up in PCR six weeks ago which Dr. Cortes felt could easily be testing variability, I doubled my dose of Curcumin to a full and consistent 8 grams. I have a feeling (not scientific) that Curcumin + Sprycel is what is giving me these results. I would have to stop taking Curcumin to find out. Curcumin gives me other benefits such as no more arthritis (runs in my family) pain. I am, however, beginning to speak with a sub-Asian (India) accent and my skin is turning somewhat yellow - but hey - I got zero's now.

My goal remains to get to PCRu - hold it for two PCR tests (six months) and then stop Sprycel altogether and see what happens. Based on research, when patients lose PCR after stopping TKI therapy, the PCR level usually begins to appear in the last decimal place (i.e. from 0.000 to 0.003 or so) and that resuming TKI therapy reverses the increase back to PCRU. I am going to find out.

By the way - Dr. Cortes replied and told me I am back to a regular PCR testing schedule, but that he does want to do a bone marrow in six months and see what's going on to verify that I no longer have other chromosomal variations (other than Ph+). So no happy dance yet.

[hannibellemo]

Congratulations, Michael! I hope I see PCRU, too, but I just want to get back to MMR with my new, lower dose (50mg) of Sprycel! (So far, so good, on avoiding another pleural effusion.)

My curcumin arrived in the mail yesterday and I wanted to ask did you work your way up to 8g? I thought I would add a gram or 2 a week until I got to at least 4g. I'm really looking, at this point, for a little relief from the new arthritis symptoms I have in my hands. My dad developed RA in his late 40s so that is always a concern (obsession) for me. On the other hand, at 60, it's probably not too unusual to have some arthritis. It does hamper my enjoyment of sailing when my hands retain the shape of the tiller for a day or two, though!

Have a great time on your vacation - post pics!

Pat

[scuba]

Pat - I increased my Curcumin dose gradually - about a gram or two a week. I made it to 8 grams early this year then backed off to 4 grams in order to experiment with a higher absorption formula. I don't believe it worked. When my PCR did an up tick, I increased back to a full 8 grams and have stayed there.

You will notice arthritis relief in about 2 months (it takes time). And you will get that relief on as little as 1-2 grams Curcumin. (the normal dose posted on the bottle). The arthritis I had in my hands slowly faded and now is gone. I haven't had arthritis symptoms for over a year now.

Dr. Cortes has no problem with me taking the Curcumin and said it might even be helping, but he believes that my response is due to Dasatinib (Sprycel). He said that most problems he sees with patients losing response is because they don't take their meds as prescribed. He did say it is usually a side affects issue which is why he is doing a lot of research around dose and quality of life. Being consistent and keeping the pressure on the CML is what leads to best results. We have a chronic condition that requires constant medication. It will be this way until they find a way to kill the Leukemic stem cell or can determine who has outlived the disease due to effective therapy. I think of Susan and Trey in that category. They are cured and take Gleevec for peace of mind. I hope to be taking Curcumin for my peace of mind.

[scuba]

Hi Billie,

Curcumin helps guard against atherosclerosis:

http://www.ncbi.nlm....pubmed/22058071

Also, Omega-3 Fish oil, Resveratrol (wine) and Garlic all help the body minimize atherosclerosis.

In addition, a diet rich in oats (oatmeal) coupled with Curcumin helps the body produce more Bile (for those who have gall bladders) which helps the liver clear cholesterol from the body. The oatmeal (high fiber) carries the bile out of the body (or else it gets reabsorbed).

I am not a doctor and don't prescribe anything, but in your case, you might consider shifting your diet to include the list above. Eat more vegetables such as Broccoli, kale and other green things and roots (such as beets, onions, etc.).

What you want to do is shift your body gradually so the atherosclerosis stops and then reverses. Sudden changes can cause pieces to break off and lead to stroke. That would be bad.

In my case - since I have been a very heavy wine drinker since birth (I was breast fed wine) - my atherosclerosis level as measured by Calcium density in my arteries was zero percent. Usually mid-50's people have a few percent Calcification of their arteries. I have none. The Broccoli may also play a role. I eat a ton of broccoli- don't know why, I just like the stuff.

http://www.nutraingr...ification-study

If you decide to add Curcumin, first consult with your doctor. Chances are, he/she doesn't know much about Curcumin, but you can ask to find out. When I started with Curcumin, I started slowly, adding 1 gram a week to get to my 8 grams. 8 grams are needed for the Leukemia (Dr. Aggarwal, pers. comm. M.D. Anderson). But much lower dose (as is on the bottle) is effective for typical inflammation such as arthritis and perhaps atherosclerosis.

Google atherosclerosis and Curcumin. There's a lot out there on the two.

Hope this helps,

Michael

[Tedsey]

That's so awesome Michael!  You made my day.  Long life to you!

Hugs,

Teds

[fola]

Hi Michael,

This is fantastic news. So glad to see you're doing well on 20mg.  Even though its important to have standard dosing charts, you're a great example of how treatment really needs to be customized to each patient. 

Enjoy your trip to zero.

Fola