22 replies to this topic

[scuba]

Let me know if this weekly update is getting old.  I thought you all would like to track the data along with me during this strange trip.

Today - I had blood drawn at M.D. Anderson.  Dr. Cortes could not believe my last week FISH level coupled with my stem cell transplant-like recovery from myelosuppression.   As some of you know, M.D. Anderson is pretty much a factory.  Park on the 5th floor because there is no parking anywhere else, line up, give blood, maybe leave. 

Dr. Cortes wrote back and told me my ANC = 0.86.  Last week it was 0.85 (different location, but similar machine measure).  Essentially no change week to week.  Red blood and platelets are normal. 

M.D. Anderson did draw for FISH and PCR again.  Dr. Cortes wanted to re-verify the numbers and also look at other things.  They took a lot of blood today.

In his words,  "I am very interested to see what our lab's FISH and PCR show".  He absolutely does not want to "stim" me and wants to follow this more closely. 

I get to stay off Dasatinib one more week at least if not longer.

I feel great.  My energy is back up (more so this last week than before) and I can't believe that I have any disease.   I can't go Scuba diving yet because my ANC is below 1.0; but am getting close.  And any hint of mouth sores, dry mouth, etc. are gone.  And to think I gave up wine for Lent ... well sort of.

Trey:  I have CML - no delusion here.  But I believe that my body is fighting it somehow, triggered by Sprycel in a remarkable turn of events 8 weeks ago.  Perhaps I can have a year free of it without TKI (i.e. bcr-abl keep dropping on their own), but it does not seem that our bodies have zero defense when we develop CML.  I believe M.D. Anderson wants to look at the protein complement on the T-cell; NK-cell side of things.  I may become a cell donor for that.  How convenient I live in Houston.

What a puzzle this is.  Zero FISH with significant bcr-abl transcripts present along with very slow WBC production is strange.   I am very curious if M.D. Anderson's FISH is zero.  I don't think so.  I believe it will be close though.  I'm more interested if PCR is dropping.

[janner25]

For what it is worth...I've been looking forward to Thursdays just to see how your counts are doing!!!  Thanks for the update and keep them coming!

[Tedsey]

Dear Michael,

Not in the least tired of hearing about what is going on with you (not just because it is interesting, I really care too).  I wonder if your positive attitude and your strong belief in overcoming this is a strong component in your healing.  I am afraid I internalize everything too deeply and have an outlook now similar to a kicked dog.  Your perspective is refreshing and up-lifting.  And you do not, in the least, seem delusional.  I am having trouble living with these gaping holes in my mouth.  Quality of life is down a few notches.  How did you deal?  "Miracle Mouthwash" is a flop, but it numbs my bottom lip pretty well.  Too bad there is nothing wrong with my bottom lip.  But now I have a remedy if anything ever does!

All the best,

Teds

[valiantchong]

HI,

Would like to know ask what is Dr. opinion on the FISH = 0 but PCR = 35%. any reason it does not correlate ?

[scuba]

V,

The doctor is puzzled, so he ordered a re-test to verify.  He suspects the PCR may be faulty.  FISH is what it is and they don't see any cells (last FISH anyway) that have flouresence.  But it is by definition a limited sample.  I am sure I have cells that have bcr-able gene, otherwise my PCR would be zero.

What has them curious is the drop from January to now without TKI.  My disease is not progressing .... which is good.  I have no problem with that. 

I am being "studied" so we'll see where this goes.  Personally - I will get back on Sprycel when my counts get above 1.0 (ANC).  I believe Sprycel is very effective for me and I want to drive my PCR levels to zero.  I believe I have a shot at that now.

[scuba]

Dear Tedsey,

Try saltwater mouth washes.  Mix 1 tablespoon of salt with a glass of water and swish after brushing your teeth in the evening.  Leave a salty film in your mouth overnight (don't rinse the salt out after swishing).  And then rinse with saltwater in the morning.

This should help with the sores.

And - oh yes, try the French kissing as well.  Can't hurt.

Michael

[mck_001]

So interesting....hoping you can get back to scuba diving soon!

And, how the heck do you get parking on the 5th floor over there?  We're always 7 or 8! 

[scuba]

MK  -

I always schedule with Dr. Cortes' office for the day (morning) where the schedule is lightest (usually Thursdays).  Friday is even better, but I don't want blood drawn on Friday's for the reason's Trey outlined in other posts (don't want your blood sitting over the weekend).  If I get in early (8:00 a.m.) I can park on the second floor (fabulous) ... 30 minutes later up to 5.

I only go to M.D. Anderson for the blood or bone marrow.  I haven't had to see Dr. Cortes except once or twice to establish rapport.  Now it's just through e-mail.  I send him data and he sends back what he wants me to do.   Right now he wants me to do nothing ... literally.

[PhilB]

The weekly update is definitely not getting old.  I always look forward to seeing how fast and how far it will get hijacked!

Great news that you are feeling so well and I'm very jealous about the thought you might be scuba diving soon.  I was completely addicted until we had the kids!

[CallMeLucky]

The updates are welcome Michael, your story is interesting.

"I believe M.D. Anderson wants to look at the protein complement on the T-cell; NK-cell side of things.  I may become a cell donor for that."

I look forward to taking the "Michael" vaccine someday!

Now let's hold a contest to see who can come up with the best name for the new vaccine that may be derived from Michaels blood.

[PhilB]

I look forward to Trey taking the 'Michael' vaccine.  I've heard of people having to eat their words, but that would be the first case of someone having to take them intravenously

[Trey]

PhilB,

If our Mikey is indeed a "miracle child" over the longer term (not a short term temporary reprieve due to some unknown pharmaco-dynamics) I will be the first to celebrate with him, and will personally drive to Houston in one year and consume all his wine with him.

As for your vaccine, we will ensure that yours is administered in a "reverse rectal leakage" method.  No feathers.

[scuba]

Trey wrote,  ".... and will personally drive to Houston in one year and consume all his wine with him." ....

Like I will let you 'consume all my wine with me'?  I have a French kissing buddy who gets that opportunity.

The CML version I have does not like Sprycel.  Sprycel is my friend.  Once Sprycel comes home again, CML is history - if not already.

I'll know in 10 days if the FISH was a fluke or the start of something big.  I ordered more wine.

[CallMeLucky]

Ok, so Trey gets the award for worst way to administer the "Michael" vaccine.

[Trey]

Please lay in a case of 1961 Chateau Latour.  I will be very thristy.

http://www.wallywine...filiateid=10098

[scuba]

Please lay in a case of 1961 Chateau Latour.  I will be very thristy.

http://www.wallywine...filiateid=10098

Fantastic wine.  I have had this very wine (courtesy of a friend).  I gather since you 'expect' to make the trip that you believe there may be something to the apparent remission!  It must be the curcumin which I continue to take every day.

[scuba]

Hi Billie - I am not cured ... I have something strange going on naturally within my blood which is apparently keeping the CML at bay.  There is probably a raging battle going on between good and bad.

In the short time I was able to take Sprycel; apparently Sprycel was very very effective at cleaning house where Gleevec was unable to help me.  With my bone marrow cleared out of bad cells from Sprycel - my normal system has been able to recover.  What is interesting and puzzling to Dr. Cortes is that the CML is not rebuilding at the same time in the absence of a TKI.

We have seen reported on this board the woman who stopped taking her TKI and within a couple of months her counts shot up and now she is in the hundreds of thousands for White blood cells (sad way to go).  In my case without any TKI over several months, the reverse is occurring - microscopic examination of the interphase nuclei has gone to zero (with no TKI) and the molecular signature is steady or dropping (hence my interpretation that there is a quasi-steady state battle going on).

The Onc's want to look at the proteins in my T-cell, NK-cell line.  They say my profile is that of a stem cell transplant and not someone who was taken off TKI for myelosuppression.

I actually believe that what is happening with me is normal - that many CML patients go through periods of remission without any treatment only to have it flare up later and kill (if there was no treatment).  I had a great aunt on my Father's side develop Leukemia - I don't recall what kind, but assume acute Leukemia since it was pretty sudden for her (she was in her late 70's) (over 30 years ago), become hospitalized, given last rites, then had a sudden remission and she was able to leave the hospital, come visit with us and look great for months.  And then wham - back in the hospital and she was gone in a matter of days to weeks.  I think that is what is going on with me.  I will never believe I am "cured".  I will believe that I have a temporary reprieve from CML - but will forever have to have blood tests to monitor assuming it really is going into natural remission.  And in one year, if we find I am at zero PCR without any TKI, I will buy that bottle of Latour (1961) and 'allow' Trey to have a sip.  I, on the other hand will be sipping a 1985 Cheval Blanc:

http://www.aabalat.c...3/lotID/1882013

(Much better than the Latour - although the '61 Latour is non too shabby).

[Tedsey]

A crazy Irish broad drinking Manischevits.  Ain't that American!  

[Susan61]

Hi Michael: Your posting and updates never get old.  Everyone is looking for you to achieve something that nobody has done yet.  I give you a lot of credit for your stamina and determination.  My prayers go out for everyone daily to beat this horrible disease one way or another.

Your giving the doctors new ammunition to use to search different ways of treating CML, until there is a cure.

Your positive attitude could be doing more than you realize.  You have been determined to do something different from day one.

God Bless You

Susan