29 replies to this topic

[scuba]

Hi Ladies and Trey,

It seems I am overcoming Tedsey Syndrome.  I was reading some of the other posts here and it is indeed sad to read about the trials others are having to overcome.  I thought a little good news for one of our members would brighten the day a little bit.

I have had a dramatic drop in bcr-abl transcripts.  And in concert my Neutrophils which have been in myelosuppression territory for mostly a year have started to perk in just the last two weeks:

PCR - intl. scale trend (U.S. Labs)

1/19/2011 - 31.7%
3/10/2011 - 35.7 %
7/7/2011 -  0.81%

My WBC's are now normal and my ANC which was hovering around 0.5 to 0.8 for seven months - shot up in two weeks to 1.6.  I am out of the bacteria danger zone.  Also my red blood is heading back up.  Only platelets are an issue at 95, but considered not dangerous unless they fall below 50.

I am on 20mg Dasatinib (1/5th the normal dosage) plus 8 grams equivalent Curcumin.  Dr. Cortes is so surprised by the PCR drop that he wants me re-tested at M.D. Anderson to confirm.  If verified - then we have reason to celebrate.

The fact that my blood is starting to normalize is an encouraging sign in the face of a dropping PCR.  There is a sentiment that my blood population is reverting to normal as the Leukemic system is fading.  I believe my normal blood stem cells are increasing in number now.  And the Leukemic ones are becoming quiescent and fading from the picture.  At least that is my interpretation.

I look forward to M.D. Anderson's confirmation.  20mg. Dasatinib - who would have thought.

[LivingWellWithCML]

Hey Michael,

I've been following your case through the forum and it's certainly interesting and very encouraging.  That's really awesome news about the PCR results.  I had a few questions if you're comfortable sharing:

• Do they run your PCR on peripheral blood or marrow?  And are you at 0% FISH as well?
  
• In addition to the 20mg Dasatinib + 8g Curcumin, are you still enjoying red wine in the evenings?  I ask because my routine has included a couple of reasonable glasses at night (normally), and I haven't changed that routine at all.  I still wonder what kind of impact moderate alcohol consumption can have on all of this.
  
• What's your exercise routine like?
  

I just find it interesting that you're having this response (1) after an extended break from TKIs, and (2) such a low dose of Dasatinib.  I can't help but wonder what other aspects surrounding your daily routine might be helping your cause in addition to the Curcumin.  I think I'm going to open a bottle of red wine and celebrate on your behalf!

Dan

[Trey]

That is very good news, and I hope it stands.  Hope you are charting some new territory in lower dosage TKI therapy, which I believe is a neglected issue.  The issue of lower dosage has been the subject of dire warnings of resistance, which I think has done a great disservice to CML patients.

[scuba]

Hi Dan,

1.  The PCR is run on peripheral blood.  My FISH is zero and has been for a few months.

2   Never stopped drinking wine - ever.  Night of my diagnosis - popped open a Chateauneuf.  Gleevec failure - a real nice Pomerol.  Myelosuppression after starting Sprycel - decided time to enjoy the Rothschild.   Hiatus from all TKI's and a slowly creeping up of my PCR tests (from 30's to 50's %) - time for a good Brunello.  And now with a sudden drop in PCR (as Trey points out - could be a test fluke so we'll need to confirm, but it does look good especially with the WBC's normalizing) - tonight we'll do Napa.  2007 Stag's Leap.  ooooh.

3.  Trying to get back into a running routine.  Pain in the lower shins when I get to a mile in ... I attribute to the anemia (low red blood).  My red blood is still 20% below normal but holding steady for the last 12 months.  I manage calisthenics so my wife can still have fun with my body while I watch re-run episodes of Columbo.

I am convinced (or nearly so) that the Curcumin I take (BCM-95) is augmenting the effect of the Sprycel.   Dr. Cortes was very surprised by the PCR drop.  So much so that he ordered a verification blood test at M.D. Anderson.   Dr. Aggarwal was not surprised.

I have only managed to get to the 8 grams recommended dose of Curcumin plus a continuous 20mg. Dasitinib only during the last two or so months.  I believe I have found a treatment that is starting to work for me.  I take the Curcumin in the morning and I take the Sprycel at night.  I drink wine in between.  The rest of the time my wife can have her way with me.

[scuba]

Trey wrote,

Jul 26, 2011

Re: Turning a corner

"That is very good news, and I hope it stands.  Hope you are charting some new territory in lower dosage TKI therapy, which I believe is a neglected issue.  The issue of lower dosage has been the subject of dire warnings of resistance, which I think has done a great disservice to CML patients."

I hope so - but the unknown here is the effect of the Curcumin.  Low dose Sprycel alone may not be sufficient to have the impact my last test revealed.

Nevertheless - Dr. Cortes was immediate in wanting to lower my dose first instead of trying to stimulate my Neutrophils.  I do seem to be sensitive to Sprycel - and the lower dosage TKI therapy may be very practical indeed.

We'll see if it stands.  I have a blood draw scheduled at M.D. Anderson tomorrow.  If confirmed - then I have turned a corner.

[Susan61]

This is great news.  I am starting to think its your positive attitude more than your Curcumin that is getting you where you are.

Enjoy your wine and keep going with your plan and ideas to beat this disease.

[LivingWellWithCML]

Mike - thanks for sharing.  Out of everything you shared, it's definitely the attitude making an impact on the disease.  Oh, and I think that the wine is helping as well.  I'll have a glass to that tonight, and will look forward to seeing great results with your blood draw tomorrow!

[Pin]

What awesome news to hear! I hope they confirm it and then some!

[scuba]

The blood comes out tomorrow and then my wife and I are off to Cozumel to do some Nitrox Scuba diving ... no longer worried about flesh eating bacteria because of few Neutrophils.  Non- CML Neutrophils are my friend.

[mck_001]

Trey, I get excited about more data re: lower dosages as well!  I konw I'm not on crazy low, but I'm so thankful that I'm doing so well on 70mg Sprycel/Dasatinib and it is my better combination of side effects, low counts, and CML response.  It makes me hopeful that maybe in the future I can go down to 50mg and have a molecular response with less risk to the rest of my body from the TKI.  It is interesting with the curcumin variable, Micahael.  Looking forward to a confirmation on your PCR!!  I have my next bone marrow biopsy in a couple of weeks and am not expecting doom and gloom results for the first time.  Have fun in Cozumel!

[Tedsey]

No Michael, "You are no Tedsey."  And thank goodness for that!  Still limping along and getting along pretty well with low counts.  Glad to hear that things are going so well for you.  I'll join you in another glass of wine when the PCR comes back.  I will only believe it will be good news.  Keep posting.

All the best,

Teds  

[Tedsey]

MK,

Looks like we will have a plug pulled out of our backsides about the same time.  Here is to a good result for both of us.  Dare I say MMR?!?!?!  I am putting that out there, universe.  I will be thinking about you and wishing you little discomfort and quick healing.  But you gotta admit, it is a real pain in the butt.  And especially when you have no choice but to run after toddlers the same day!  I would LOVE to stop getting these.  MMR!  MMR!  PCRU????  Yes!  I am throwing that one out there too.  Positive forces in the universe, you better be listening.  Our babies need us!

Hugs,

Tedsey   

[GerryL]

Hi Teds,

I've got everything crossed in the hope that you get your MMR - sooner or later that turtle is going to get across the line.

[Cathy]

Congradulations on your progress also! and enjoy Cozumel !

So good to have all this good news on the board!

Cathy 

[grannyd]

Great news!!! Keep the good reports coming!!!!! More for all of us to look forward to!! Thank you so much. Prayers to all granny d

[CallMeLucky]

Great news Michael.  Looking forward to hearing more about this path you are on.

[SunNsand]

Great news! I am always interested to read your posts updating us of your brave journey. Enjoy the scuba diving, sounds like heaven!

[nathaliece]

Wow!  Congratulations!  Thanks so much for sharing your positive news.  I also think you have great taste in wine.  As a french girl, Chateauneuf is one of  my favorites!  I am sending positive thoughts your way for confirmation of these good results by MD Anderson!

[scuba]

Can you imagine Life without wine?  I sure can't.

Had the M.D. Anderson blood draw today.  Fastest blood take I have ever experienced.  My wife didn't even park the car!  Place was packed, so she dropped me off to park.  I went up to the infamous 8th floor - checked in and before I sat down, they called me to draw the blood.  Five minutes later, they were done and my wife never parked the car.  From my house to M.D. Anderson, get the blood out and back home was one hour.  ONE HOUR.  That place is a factory.

Clock starts to see if my results are verified.

[janne]

I can't wait to hear the results from MD Anderson..this is just way too exciting. I am so appreciative of all your postings !

Janne