6 replies to this topic

[scuba]

It's been months - and now I re-start Sprycel at 20mg.  as per Dr. orders.   I am also taking my curcumin.

My CBC's are remarkably consistent over the weeks.  Chronically low.  It is  Dr. Cortes' belief that re-starting me on 20 mg. of Sprycel will start the process of bringing my Ph+ chromosome levels down (slowly) while allowing my normal marrow to maintain Neutrophils.  If the Neutrophils drop again - then I have to go through this all over again.

We'll see.  In one week I will learn if my ANC numbers are little changed.  If they stay level - then I get to increase Sprycel to 50mg.  and then hopefully start the real process of getting my marrow into remission.  It's been one year since diagnosis and I am living with this disease at such a high level (PCR > 25% intl.), but without the symptoms (no Leukemic growth).  I am pretty confident it was the Curcumin that has kept the disease in check.  I will continue to take the Curcumin (hitting the Leukemia now at several levels) and report back here on my progress.  If my red blood crosses over into normal (it has been slightly anemic all this time) then that will be a good sign to me that my myeloid cell lines are returning to normal.  In 3 months we'll see what PCR has to say.

I will say this - if I can get my blood back to normal and PCR below 0.01 - then I intend to use only Curcumin and see if it stays there.  Curcumin is beneficial to the body (strong anti-oxidant, anti-inflamatory) and non-toxic.  Imagine a TKI to reduce tumor burden and then a plant root to keep it there naturally.  A dream perhaps, but I'll be the guinnea pig.

Weekly CBC - (week 16 no TKI):

ANC = 0.92 (last week = 0.84)
WBC = 2.6 (last week = 2.6)

RBC = 3.67
HGB = 12.9 (last week12.7)
HCT = 37.7 (last week 38.1)
MCV = 104
MCH = 34.5

PLT = 206 (last week 221)

[rct]

I hope it goes well for you Michael.  It can be that you will be neutropenic AND using Sprycel.

We just received yet another PCRu for the Mrs, as we approach three years of this low anc crap.  Trying to ween her off the Neupogen slowly.

Good luck with it, I will be thinking about you.

rct

[scuba]

RCT - I suspect I may be in a similar situation.  I'll have a feel for it in a week or maybe two.  I am, however, using a very low dose of Sprycel to re-start so we'll see.  Perhaps the Curcumin I have been taking these last several months is helping to condition my marrow so that my Neutrophil levels can be maintained.  We'll see.  The best world for me is if this low dose Sprycel is very effective for me (minimal side affects, etc.).

Thanks for your thoughts ...

[CallMeLucky]

Good luck Michael, I hope it sticks and you are able to get along with just a low doese of TKI, that would be a nice way to manage it as you would likely have few side effects.

[scuba]

What's been nice - is that while all of you have had to avoid the sun, I am building a nice tan.  (not deliberately).  For whatever reason, I am not burning like I usually do when summer sun first returns to Texas.  Perhaps an over-reaction from C-kit once the TKI's were stopped.

I absolutely enjoyed not having to take any TKI.  But like Trey says - even though I feel terrific (healthy) - 100% Ph+ cytogenetics is a time bomb waiting to go off.  I have to get that level down.  Only then will I feel I have turned a corner.

One additional thought - for those out there who can't stand the side affects of a TKI or who have given up (I read one post where the person's mom decided to stop therapy), I would encourage them to at least try Curcumin.  It may just provide relief from symptoms and add longevity to life.  i am really impressed with this "drug" (if you can call it that).   I have little doubt it is what enabled me to keep Leukemia from exploding once the TKI was removed.    Just a thought.

[grannyd]

Best of luck, keep us all up to date, prayers to all, grannyd

[janne]

Let's hear it for the guinea pig !  Here is hoping that you blaze new trails for all !  Janne