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Watchful Waiting ... the new strategy


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#1 scuba

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Posted 02 February 2011 - 12:51 PM

I had my CBC done today - one week after stopping Sprycel because of Myelosuppression.

My ANC count last week was 0.4.  This week it has fallen more even though I am off Sprcel:  0.14

Platelets are lower too as now - for the first time, my Red blood is dropping.

Sprycel packs one hell of a punch and this on a reduced dosage to begin with (70 mg.)

The Oncologists believe that Sprycel - even when I am off the daily dose is hitting the CML much harder than Gleevec and that it will simply take time for my normal blood system to re-form.  They intend to keep hitting it when my blood levels rise sufficiently (0.5 ANC, I will resume at 50 mg sprycel). and then take me off when my levels drop.  They believe that as the CML cells die off, it is creating "room" for my normal cells to populate.  As long as I don't have blasts (I have zero now) I continue on this two steps forward - one step back.  The interesting news is that my PCR levels keep dropping.  I am at 35% international scale.  My last reading was 55% and before that 70%.  If I can stay on Sprycel and not have to go off it so often, they would expect these numbers to drop much more dramatically.  Right now they are happy to see that it keeps going down. (i.e. trend is good).

Sprycel seems to impact higher in the blood cell line - hence my red blood (and Lymphocytes) getting impacted more this time around (never were affected before on Gleevec).

I asked about stim shots and the consensus is emerging that Neupogen may be stimulating the cancer and that letting the body recover with periodic breaks is better (Dr. Cortes feels that way).  I am a guinea pig.  One step forward - half step back.

When I resume Sprycell they intend to drop my dosage again and will keep dropping the doseage until I am stable.  Then once the counts start to rise, they increase my doseage to normal and that should be the end of this.  No one knows how long this will take - but the guess is that by the end of this year it is possible.  It certainly seems preferable to what Tedsey has been through.   Apparently, Sprycel (and Tasigna) allow for this approach.

I feel like a lab rat ....


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#2 valiantchong

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Posted 02 February 2011 - 01:09 PM

Sendiing best wishes to you Mic,

Hope everything will be better soon.... So dont worry, everyone here is a lab rat here in someway... since TKIs has < 10 years history, except for Glivec..until they found some 100% cure for CML. Well as a lab rat, at least we all are contributing towards statistical data for medical science. Until we truly understand the mechanics of CML, we are all lab rat in a sense....

Hope for the best.



#3 jrsboo

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Posted 02 February 2011 - 01:55 PM

Hang in there Michael!  This must be tiring to always be on alert like that, I am hoping that you hit your new "normal" soon!

Caroline



#4 scuba

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Posted 02 February 2011 - 02:20 PM

Thanks Caroline !   I do feel like a lab rat.  It's all CBC's now.   The approach they are taking is to keep dropping the dose until my counts no longer fall after Sprycel resumption.  I asked about taking stim shots and they said no.  They feel that the new TKI's give them the speed to do this watchful waiting, testing approach - weekly CBC's.  I asked about the risk of mutations and such and Dr. Cortes replied that going on and off does not (statistically) affect the risk.

There is evidence that stim shots can induce blasts, however.  I thought that was interesting.  As long as I have high levels of CML (X number of cells out of 20 positive) - I have blast risk.  That is what he is concerned about most.

When they see my counts resume and continue to normalize even after staying on Sprycel - then I get a bone test.   The only rising count they worry about is if my WBC's go up but my ANC stays low (indicates blasts).  Dr. Cortes was adamant that I am a LONG way from that.  As far as he is concerned I have just started.  I also get to avoid transfusions for low platelets going this route.

One bit of good news - he has had success with patients in my situation doing the watchful waiting, dose reduction, dose interruption, dose escalation using Sprycel and Tasigna.  It is as Trey and RCT write here about - the bone marrow has a lot of healing to do.  And all that Sprycel is doing right now is clearing the space and allowing the normal factory to normalize and establish new enzyme pathways so Sprycel doesn't affect the good cells.  Eventually - they want to be able to get me to full dose so that the CML is more rapidly driven into remission (non-detection by cytogenetics: 20 out of 20 cells normal).  If I can get there this year, my prognosis is the same as the PCRu club (according to the doc's).

And so the lab rat spins the wheel.

p.s. Not being on TKI's is FABULOUS.  I can eat grapefruit, drink green tea and play.  This on again, off again is fine with me as long as it works.

If any of you read any articles about this approach please post here.  So far I only know about this on again off again with no stim shot approach from Dr. Cortes.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#5 jrsboo

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Posted 02 February 2011 - 02:28 PM

I am jealous of you having an Onc blessing to go off meds for a few days.  Oh to feel normal and bouncy and happy.  I do miss that.  Ok, no more tears!  This is better than the alternative of not having meds to go to.

Keep us posted on how you are doing!  And thanks for being the guinea pig.  I have a feeling that after a few years they are going to lower the dose of Sprycel after reaching PRCU for a year, but that is just me projecting, no science to back that up.

Caroline



#6 rct

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Posted 02 February 2011 - 03:12 PM

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

rct



#7 Tedsey

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Posted 02 February 2011 - 03:24 PM

Michael,

I am glad things are looking up for you!  As for basts, from what I understand, it is normal to have 5% or less.  People have to have some immature cells before they become mature.  Compared to you, I have received the standard cancer patient treatment for myelosuppression and anemia: red and white stim shots.  It is a little disconcerting to hear that the shots could make the CML worse.  Things change so quickly.  I was just diagnosed 15 months ago.  I would love to hear more about what you are doing.  Thanks for reporting out.  Since I have been shot up, and neither the red or the white stim shots are really given full a blessing to be used with CML patients, I feel more like a lab rat than you!  Over time, we will find out what the damages are.  I pray for both of us, and everyone else on the "shots" that there will be no harm done either way.  I am going into my first month red stim shot free!  I got my last white shot in in August.  I still have sharps and Neupogen in the fridge.  I pushed it all the back so I cannot see it.  I would love to throw it away.  I get a lump in my stomach when I accidentally find it while looking for something.  I wish it would fall out and break.  However, it is over 1000 bucks worth of medicine.  I really don't want to keep it.  I wish I knew how to donate it.  I just don't want it in the house.  I so hate the shots and I am very close to wanting to refuse them.  I just have a very bad feeling about them.

Here is a little chuckle.  My cousin, who survived breast cancer over 25 years ago is a big supporter of alternative therapy.  She has pushed acupuncture on me.  I finally had to tell her that needles are all too much a part of my life with leukemia and the last thing I want to do is get stuck voluntarily!!!!!  I had it done a few times years before the CML dx.  It didn't work for me.

All the best!  Keep posting!

Teds         



#8 scuba

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Posted 02 February 2011 - 03:35 PM

Hi Caroline ... there's a lot of art to this apparently.  Dr. Cortes is very matter of fact about it.  "Do this - if it doesn't work, we'll do that ....".  And he is of the opinion that the body will kick in sooner or later so why add the problem of stim shots - even though he published papers about stim shots being quite effective with Gleevec and Myelosuppression.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#9 scuba

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Posted 02 February 2011 - 04:31 PM

Hi Teds ... I'm not sure things are looking up for me.  What I found out today is that my blood counts are tanking even though I am off Sprycel.

I am at a dangerous ANC level again (0.14) which can lead to a bad infection.  And for the first time, my red blood levels are dropping (although I don't feel anemic).

The difference from you, I suspect, is that they are not trying to keep me on the TKI during this problem.  The "new" strategy seems to be to let the body recover and then hit again - and again ... and again.  I asked the Oncologist, isn't that just letting the CML come back - and he said no.  He said that the cells that are coming back are normal ones as well as some CML, but CML has been dealt a body blow and takes far longer for it to recover.  He said all they are doing (the Sprycel) is making room to coax the body into getting back to normal production.  In your case, it took a year.  I am on that same path - but without stim shots.

This is Dr. Cortes' strategy.  A different CML specialist may argue with him on it for all I know.  The good news, if there is any - is that he doesn't seem concerned.  He really likes these new TKI's.  It gives him more flexibility.

As long as I don't get blasts (blast crisis), I have time for them to get me into remission.   PCR is going in the right direction.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#10 MichelleH

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Posted 02 February 2011 - 04:53 PM

Hi Michael,

Sorry to hear that your ANC counts are still dropping but great that your PCR's are still dropping with all the changing and stopping of med's along the way.

Interesting strategy, hopefully the body can stablise with its counts and get  used to Sprycel low dose quickly.

Michelle



#11 jrsboo

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Posted 03 February 2011 - 06:35 PM

Dear Michael,

I am sending you some lovely healing white light your way.  I can empathize with your struggle, as I am sure most of us can.  It must be doubly hard when what everyone else says works, doesn't work for you.  You are hereby granted permission to have a good old fashion pity party.  Rant away at the gods of unfairness.  Scream at the top of your lungs that it just isn't fair!  Pound your fists into the pillows of inequity.  Bellow as loud as you can.

But it may only last one hour. 

At the end of that hour, you are to pick yourself up, dust yourself off, and do something for someone else.  Oh, and you may have as much chocolate or whatever your favorite treat is for the rest of the day.

And you should also read a bunch of stupid knock knock jokes.  You can stop after you have at least one good snorty giggle at the stupidity of the joke. 

Hugs,

Caroline



#12 scuba

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Posted 03 February 2011 - 08:01 PM

Hey - you guys are great.  No pity here.  I have a great life - seizing the ocean and the land has been so worthwhile.

I do believe that we (all of us) have a handle on the disease.  It's not a secret.  We know exactly what causes it and there is a series of chemicals that block it.

The unfortunate part is that we have to be vigilant - which means visiting the doctor every week.  That's my "complaint".  I want my freedom to eat, drink, sniff, touch and look - and only with my wife (or CML is of little worry).

So .. no woe is me.  Just trying to understand the biochemistry more.  I'm sure Trey can weigh in - but I just don't understand why the body does not make more Neutrophils when your body needs it.  Something is strange for the 10% of us who get myelosupression and others have no suppression at all.

The good news is that they let me go off and on the medication.  When I am off - time to party (i.e. grapefruit and green tea!).

There's a solution out there....I can feel it.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#13 Guest_billronm_*

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Posted 03 February 2011 - 09:06 PM

Dear Caroline,

Sounds like you are a bit down today.Believe me I know how you feel. When I was off G last nov for 5 weeks It was great all the problems G was giving me went away after 2 days.I truely thought about going off my meds. I had no quality of life on G, I figured the hell with it I would rather stay off G and bring my 2 grandsons out to spend time with me.Go shopping get back on my treadmill and yardwork everything came to a stop when I went on gleevac.But I hung in there and the sprycel works so much better fo me. So I have an attitude ajustment. I decided if the sprycel stops working I will take up drinking and become a go-go dancer.Under an assumed m name of course. My family and neighbors think I am that little Irish Catholic Gilrl who sings in the choir. I will keep you girls on bon bons for the rest of your life!  I bet Marnie will go along with me. Sure beats grading papers on you're day off. Nah-who would hire me It would cost to much to buy the fringe on my mu mu.

  I sure hope you and Marnie are feeling okay today. I feel good I am so tired all the time. I am going to be 63 in march could that be it? But I don't look it or act it,or bake home made pies.If it does,t say mrs. smiths or pillsbury I don't buy it.I went and babbled again,since my husband retired 5 years ago,there are just the 2 of us and our little Cocker Spaniel Annie. Winter better end soon or I will start shoveling roofs.

                                                                LOL to Caroline and Marnie and anyone else who reads  this novel.   Billie

ps I will be signing autographs at Barnes and Noble.  March 1 2011



#14 Guest_billronm_*

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Posted 04 February 2011 - 02:05 PM

Dear Caroline you are my idol.

It seems you were ment to be on this site. Even though you're going through the same problems. You always make people feel better. Another storm coming, better send hubby out for more chocolate.

                            Lots of love Billie



#15 jrsboo

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Posted 04 February 2011 - 04:37 PM

Glad to make anyone smile!

Caroline



#16 jrsboo

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Posted 04 February 2011 - 05:23 PM

Dear Michael,

Good for you!!!!  Glad to hear that don't need that party!  There is so much to be thankful for, and so much fun to be had!

Caroline



#17 valiantchong

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Posted 05 February 2011 - 02:07 PM

Hi Mic,

Do they have SL-401 for trial ?.. May be this will help...

SL-401 demonstrated clinical activity, including durable CRs as well as blast reductions and disease stabilization. Preliminary signals for a clinical anti-CSC effect and survival benefit in heavily pre-treated patients were also observed. SL-401 had a favorable safety profile and exhibited no myelosuppression. Given these promising results, Phase II studies of SL-401 are planned in patients with advanced AML and MDS. In parallel, SL-401 will be studied in additional Phase I trials as both single agent and in combination with other agents in IL-3R+ leukemias including chronic myeloid leukemias (CML).






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