30 replies to this topic

[scuba]

I had my 3 month PCR blood draw yesterday along with a bone marrow test. I did not want to have the bone marrow done since my PCR's have been hovering around un-detectable (PCR < 0.01), but Dr.Cortes wanted to see what my bone marrow cells were doing since I did have some chromosomal variance at last test. He wants to verify it has gone away .... or not. Every 3 months I am reminded I have Leukemia.

My peripheral blood tests were somewhat surprising also. My Neutrophils are dropping again - down to about 1.0 from a high of 2.5 three months ago. My Sprycel dose of 40mg. (up from 20mg) is apparently tanking my white cell counts again. I'll probably go back to 20mg. since 40 is too high for me. I am curious if this higher dose can drop me into PCRU territory, however. If it did, I'll have a big decision to make. At least my red blood cell counts are higher (less anemia) this time around. And Platelets are solid normal.

I am certainly curious what the bone marrow will reveal. This last procedure wasn't as bad as I was expecting. The very young technician was a Pro - in and out of my bone in no time with a good sample draw.

[Tedsey]

Thinking about you and wishing the very best.  As for the chromosomal variance, what did Dr. Cortez see?  Did he use FISH?  I am usually at 1.0 or .09ish ANC.  I have been for about the last 3 years.  My PLT for years were 20-50 range.  Now they miraculously climbed to 100,000 and I have no anemia.  This is all on 100mg. dasatinib.  I have sore spots in my mouth, but no gaping holes anymore (I also have a wonderful healing mouthwash from my hem/onc that works wonders--it is based on treating fungal infections in the mouth).  Anyway, is it possible to stay on 40mg. and see what happens over time, or are you and your doctor concerned you will "tank" again?  I was always allowed to "tank" and we all hoped for the best (well, if it was just skimming what my Dr thought was the "danger zone," then I just got the shots).  Maybe letting the counts go low for so long is playing Russian Roulette, I don't know.  There are so many ways to treat CML.  It appears none is more superior than the other.  I guess it just depends on the need of the patient.  Glad you are forgetting you have leukemia for at least 3 months at a time.  Here is to a cure and the day when we only have to think about our blood pressure, cholesterol, and weight like most people.  My grandmother has had all plus diabetes and she is going on 98!  So, despite the CML, I like to fantasize we can take a good licking and keep on living until a good old age.

Good vibes your way,

Tedsey 

[thomaskk]

You are doing well. Can you tell us when did you achieve the following landmarks ..( months from talking medicine )

1. CHR

2. CCYR ( 1%).no cancer in bonemarrow

3. MMR ( .1 % )

Regards

Thomas

[scuba]

Hi Thomas,

I failed to respond adequately to Gleevec at first diagnosis. At diagnosis I was 100% FISH and 155% PCR.

I was on/off for about six months with FISH dropping slightly. I don't have my data in front of me, but this is what I recall:

I had to stop therapy to allow myelosuppression to recover. Dr. Cortes did not want me taking STIM shots. He told me that drug break is preferred in my case as long as blasts were very low. And mine were ... During that time I started Taking Curcumin working my way up to 8 grams per day.

During the drug break and while I started Curcumin, my FISH dropped to 50%, PCR remained high, but lowered than at diagnosis. My Neutrophils started to recover, but very slowly. Once over 1,000, I was started on Spyrcel at 70mg. It collapsed my white cells. I had a Neutrophil reading of 100 when I was told to stop and told to go to the emergency room if I developed any fever whatsoever. I stayed off Sprycel for about 3 months - no TKI  (it was wonderful!!). I was tested weekly during this time to monitor my neutrophils. They rebounded from 100 to 500 quickly.

I kept taking Curcumin, however. My FISH stayed the same (around 50%) no change and no change in PCR during those three months.

I re-started Sprycel at 20mg 3 months later once my Neutrophils climbed above 1,000. It was at this point that Dr. Cortes told me that the clock starts. This is the point he started to count how long it took for milestones to be achieved (in a long winded answer to your question).

After 20mg. re-start, my FISH fell to zero in about 7 months. My PCR fell to 0.1% a few months later. A few months after that my PCR dropped another log to about 0.01%. I have been bouncing around this number ever since. I have had PCR readings of 0.001, 0.005, 0.002, etc., but never have I seen a <0.000 or "undetected". I tried going to 40mg. of Sprycel 3-6 months ago to see if it could push me into undetected territory - but all it seems to have done is tank my Neutrophils again. I fully expect my latest PCR test to come back at around 0.01.

[scuba]

Hi Teds - thanks for the kind words and vibes ...

I am most interested in the bone marrow test since I haven't had one in a long time to see if things are the same, normalizing or getting worse. I was surprised at the low Neutrophils - but then again I increased my dose to 40mg to see if I can get to that elusive PCRU. It's more psychological than anything else - PCRU is somewhat meaningless. Nevertheless,  "undetected" would be great to see since I need that to begin my personal trial (i.e. no drug, just Curcumin for six weeks). I am hopeful that I can stop Sprycel, stay on Curcumin and keep my PCR below detection. It's not scientific, but it does seem that Curcumin can keep me at whatever level Sprycel can bring me.

[thomaskk]

When did you get DX. According to my doc high dose of curcumin may cause drop in blood numbers .

PP2A inhibitors ( curcumin has proved the same capabilities ) are currently under clinical trials for CML cure...

Is Dr Cortes expecting a cure for CML in the near future ?

Thomas 

[scuba]

Hi Thomas,

I was diagnosed May, 2012. I had just met George Rodrigue at his gallery in New Orleans (Blue Dog artist) along with friends of the family. I felt dizzy, cold and unable to maintain focus during the event. It was so noticeable that my wife insisted I see a doctor when we return home. And that started the journey.

I have been a Curcumin user for a long time. As recently as six months ago, my Neutrophils were over 2.5 (normal range) ... only after increasing my Sprycel dose to 40mg. am I seeing this drop. I do believe Curcumin slows down blood. It is a natural "down regulator" of lots of cell processes. It doesn't stop, it down regulates. In the case of Cancer cells, the theory (and it's just a theory at this point) is that down regulation of Cancer cells kills them. Down regulation of normal cells has little impact. The trouble is getting enough Curcumin into the blood. That is why I take 8 grams per day. Most of it just exits the body - which is good from a colon cancer point of view since the lining of the colon sees a lot of Curcumin.

Does Dr. Cortes expect a cure for CML .... that's a fun question. The answer is No. He says we never cure anything! He says we "treat" and extend life. If you die of something other than CML - then CML was "cured" in his mind. I have come to believe, we have a long way to go in the search for Cure. There is so much more we have to learn about DNA and the micro-micro biochemistry of all this. A cure to me would be if I no longer have to go to M.D. Anderson and find parking. I would call that a cure.

[thomaskk]

Thanks.  But dr drucker expects a cure. The day when we get the stem cells to move  on to peripheral blood and TKI kills them..We are cured ....I think that day will come fast.

Do you know anything about T cell immunotherapy ? Is it going to be beneficial for CML patients. ..?

THOMAS

[scuba]

I'm sure he does ... he's an optimist!

Stem cells will never leave the bone marrow - it's not what they do. Stem cells need to be in the bone marrow niche in order to have the proper chemical environment. It's like you would never see an airplane moored in a marina or a boat at an airport. It's not where they live. Similarly, blood stem cells are moored in the bone marrow.

Regarding T cell immunotherapy - I do believe there is a connection and hope there - but I don't think we'll ever see it applied to CML any time soon. The reason is because CML already has a good treatment protocol - people don't die of CML much anymore. It's expensive therapy - yes, but pharmaceutical company's like that. Dr. Carl June told me that there are other blood diseases that are life threatening that need their attention first. It was an interesting perspective.

Ultimately - to be cured - our bodies have to be able to recognize aberrant cells and attack them. In many ways, CML is a T-cell disease since our T-cells do not attack our CML.

[thomaskk]

Thanks. My case is different.  I was diagnosed on Nov 19th last year with the following

Wbc : 22500, Platlet 1.1 million. No Spleen enlargement , no blast. They could not find Ph+ in BMT.  But fish test came back with 56% bcr abl copy

I just got my first 3 months pcr result. It is .876% on international scale. It seems gleevec is working. I am scared of progression now

[Trey]

You were diagnosed very early.  Relax, chances of progression under your scenario are small.

[scuba]

I received my 3-month PCR check today - no change. No difference whether I take 20mg Sprycel or 40mg Sprycel.

The level is the same as last time which is also the limit of detection of PCR at M.D. Anderson's lab.

I inquired if the number reported as my result is below M.D. Anderson's limit and that they just use the limit number with an "=" instead of using "<".

M.D. Anderson's PCR  limit of detection is 0.01. using their own PCR scale. International scale equivalent is about 0.003 according to Dr. Cortes, but they don't report using the international scale.

My last two tests were reported as PCR = 0.01 so I am curious if this is just a limit reporting and I am already PCRU. I'll find out next week if the number is limit or not (i.e. "=" or ">"). I asked Dr. Cortes and he said he'll get back with me. What I get to see is different than what he has access.

This is a big deal for me because if the number is actually 'less than' - then I am PCRU - and have been for six months and I'll begin my six week no TKI trial and see if it comes back the same.

I know Trey feels slow and steady wins the race (and I don't disagree), but I want to test if my body can keep CML at a low residual level without a TKI and using just Curcumin. My theory is that if PCR comes back at 0.01 (M.D.Anderson scale) just like it has for the last six months - then I might just be able to live this way without taking a TKI and hopefully see my blood system normalize (red blood cells in the normal zone, etc.). Of course, CML could come roaring back (doubtful...really really doubtful) and I'll have to resume Dasatinib, but even if it comes back - at what level? PCR goes from 0.01 to 0.1 (one log increase)? That's not a big deal to me since TKI resumption will just knock it back down.

[thomaskk]

Congratulations.  I also belive in the power of curcumin in CML .I had mentioned about you to my Doc ( of course Trey is a known name with my medical team ) and he has asked to me to update your progress as it happens.

Good show. You guys are giving truck loads of hopes for patients like me. ..

[scuba]

Thomas - Curcumin is not a cure by any means. But it may be capable of keeping residual levels of CML at a residual level. There are patients who have multiple myeloma, another blood disorder, who depend on Curcumin, by itself, with no additional drug support, and have managed to keep their disease at a residual level without progression. And unlike Spyrcel or Gleevec and the other TKI's, Curcumin is good for the body in other ways. TKI's are toxic man-made chemicals; Life-saving to be sure, but who knows what these chemical are doing to our bodies that may be long term detrimental. Curcumin has been used as a spice in food for thousands of years.

[thomaskk]

Hi Scuba,

My plan is to continue with 1000 mg X 3 for next three months then to increase.  I am still concerned about the interaction with Gleevec. ..Can it reduce plasma level  imatinib ...?

[thomaskk]

Scuba

Your journey is getting more and more interesting. .you had a gleevec failure. Were you on curcumin at that time ? Or stated taking curcumin after this incident ?

My doctor is also ageering to the fact that curcumin may inhibit lukeimia progression.  He suggested to start with 40 mg x my weight per day split it into three times and slowly double it. He also suggested to take it one hour before food.

Thanks

[scuba]

I never took Curcumin and Gleevec at the same time.

[winespritzer]

Dear Trey et al,

Reading your posts is helping me learn all the facets of CML and its treatments...long way to go. I also appreciate all that Trey has written, in an understandable language.

Have been on Sprycel since 1/25/14 and wonder why I didn't start on Gleevac and then switch to Sprycell if necessary. . .mostly because so much more is known about the older gleevac.

My hem/onc tries to minimize all of my symptoms:  being really cold, fatigued, intermittent soreness on the R side of body, puffy eyes and sore calf muscles but offers meds for my rashes (of no concern to me because I have really had itches all of my life from multiple allergies). As for my elevated liver enzymes, he is saying he will monitor them. I do know that he is trying to keep me CALM and is quite pleased about where the numbers where after 1 month on the sprycel.

Wondering if curcumin will help. Will ask him at next visit. Will also ask about the milk thistle tea which I stopped drinking. Wondering if sprycel can trigger jaw necrosis if one has had over 10 years of fosomax (osteoporosis) - will ask endocrinologist .

Best,

Winespritzer

Thanks much to everyone.

[scuba]

Winespritzer ...

I am on 20mg. Sprycel and hovering at PCRU (i.e. PCR<0.01). I had some mild calf/muscle cramps and Dr. Cortes suggested I take 400mg Magnesium Citrate per day. It took a few days and the cramps were gone. Never had them again. Seems to have worked.

As far as Curcumin - I take it two times per day (4 grams morning;4 grams evening) with meals. I take Sprycel when I retire to watch Jay Leno re-runs.

In a few months you will be back to normal.

[Trey]

I want to make it clear that I do not believe in Curcumin as having any significant benefit for leukemia patients.  There is no way to say whether it helps at all, since there is no real science to it, and some of what has been written by a famous leukemia researcher was fabricated, causing much embarrassment for that cancer center.  Curcumin could possibly be somewhat negative for leukemia patients since it inhibits some factors important to normal cell growth, although I doubt it has much impact either way.  Michael takes a lot of it, but there is no way to know what it has done for him, if anything.  He also suffers from low blood counts, and who knows whether it might be made worse by the Curcumin.  Michael (Scuba) is a weird case in many ways. 

Also, Curcumin may cause platelet issues  since it is a natural blood thinner.  Not what you want if you have low platelets as many CML patients do:

http://www.ncbi.nlm....pubmed/20158382

http://www.vrp.com/h...-blood-thinners