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#1 ritan/

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Posted 20 December 2011 - 11:32 AM

so--out of curiousity, what happens when one goes on a gleevec holiday? do you just quit taking cold turkey? how many days is it typically? etc.

i'm asking because it seems highly likely that tomorrow i'm going on one, since this weekend i starting showing some petechia, and we already knew my platelet count was low--so i'm guessing that for christmas, i get to not take gleevec. not quite the present i was hoping for, but ok....



#2 scuba

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Posted 20 December 2011 - 11:45 AM

You stop taking the medication completely.  You have myelosuppression brought on by the Gleevec.  You will stay off the medication until your blood counts recover sufficiently to re-start.  When you re-start, it will most likely be with a different dose or a completely different medication.

You most likely will be asked to have weekly CBC blood tests to monitor your platelets and other blood cells.

Dose reduction is becoming more recommended as a viable way to manage myelosuppression and keep the "pressure" on the CML. I found this paper on low dose Gleevec (<300mg/day: http://ash.confex.co...Paper43668.html), but lower dose for me did not work at all (300mg).

It can take anywhere from a couple of weeks to months for your body to recover sufficiently to re-start.  Some Oncologists will want to "stimulate" your system and keep you on medication.  Other Oncologists disagree with that approach.

Myelosuppression is serious and must be managed carefully in order to get your body in balance with your medication so that your CML is decreasing while your normal blood system is maintaining or even improving.

You will get through this and be on your way to good health.

p.s. Enjoy the "drug holiday".  You will feel terrific within a day or two off the drug and feel completely normal, healthy and alive.


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"


#3 Judy2

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Posted 20 December 2011 - 01:02 PM

Hi Scuba and Castlefibers. Interesting, I was on 200mg Gleevec (low dose because of kidney problems) for 5  months and although I had a complete hematologic response within about 3 weeks I never had any improvement with my PCR test. Of course 200mg for me may have been like 300mg for someone else, we were never sure as there is no longer a blood level test available for Gleevec. I also thought it was interesting that you replied to castlefibers that she could be off med for a couple of weeks to months. I. was just off med for 3 weeks, as I am waiting to receive my new med from the drug co. , and my wbc started to go up again. I did  not have myleosuppression, I thought I may have had an allergic response to Tasigna so I was afraid to go back on it. After I was off for 3 weeks my onc informed me that I can't be off meds any longer than 5 days, it sounded to me like I could never be of meds for more than 5 days because when I said to him that that he told me I could be off meds but not for long and I didn't know how long long was he said-  At times you may have to be off meds but 2 to 5 days is how long you can be off for.  I guess my question is- Is how long you can be off med. determined by how deep a response you have at the time and if you are  having myleosuppression?  After all there are some people who go off after they reach PCRU. I did sort of think 2 to 5 days was rather a blanket statement.

Judy



#4 ritan/

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Posted 20 December 2011 - 01:49 PM

i suspect it'll take more than a week for my counts to go back up. i had a normal platelet count a month and a half ago, then 89 a month ago, 61 two weeks ago. i'm just guessing that i'll be low since i'm starting to see petechia. (no guarentee there i guess). i've been told below 50 and we do a holiday.



#5 scuba

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Posted 20 December 2011 - 03:40 PM

HI Judy - I was off meds for almost 4 months - a glorious four months.  During that time, my counts slowly rose to acceptable at which point I began therapy again except this time on a much reduced Sprycel dose - which I maintain to this day (20mg).  After 7 months I went from 100%Ph+ to zero.  And my PCR fell from 55% to 0.12% (almost MMR).

The reason for my slow rise back to acceptable, was due - I feel - to Curcumin which I was taking at the time and continue to take in fairly large quantity.  It is believed that Curcumin interferes with cell replication processes of leukemic progenitor cells and helps induce apoptosis.  There is research underway at M.D. Anderson regarding Curcumin's effect on leukemia.  Dr. Cortes, in particular, is very interested in my case for that reason (slow 4 month rise back up).  He expected my counts to return quickly within two weeks.  He was surprised at the slowness of the recovery.  I am hopeful that Sprycel + Curcumin together is augmenting the affect of the low dose Sprycel.


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"


#6 Trey

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Posted 20 December 2011 - 10:59 PM

Normal drug holiday is to stop for 2 - 3 weeks, then re-start at lower dosage. 



#7 pamsouth

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Posted 20 December 2011 - 11:48 PM

SCUBA, Regarding Curcumin,

To you buy this at the health food store.

I have some Thisilyn Detox, suppose to be for liver support. 

One of the ingredients is Tumeric extract (root) 100%, 95% curcuminiods.

http://www.iherb.com...CFcYKKgodWk8dlQ

PamSouth


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#8 ritan/

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Posted 21 December 2011 - 01:25 PM

so not surprisingly my platelet count is below 50 today--only just at 46, but my white count is now down to 2.8, and my ANC is actually just a tiny bit low too. my onc/doc is out of town, so i'm waiting on a call from his nurse practioner. why on earth didn't he leave an order that provided my PLT count was below 50 i am to hold meds, like he told me i would have to do?



#9 ritan/

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Posted 21 December 2011 - 01:26 PM

do they wait for counts to get above "danger levels" like PLT count of above 50, or above 100 or normal, do you know. i tried to find info but found nothing.



#10 scuba

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Posted 21 December 2011 - 02:46 PM

M.D. Anderson does not worry much about platelets unless it gets below 20.  And a lab tech told me that they will still do bone marrow aspiration with platelets as low as 10.

On Neutrophils (ANC) - anything below 0.5 and Dr. Cortes wanted me off the meds.  He did not want to restart me until I was above 1.0.  When I fell to as low as 0.1 - that occurred in two weeks while I was on 70mg Sprycel in later January this year, I was told to STOP taking Sprycel.  But they did not tell me to take Neupogen.  Dr. Cortes wanted to watch my response and told me that if I get any fever whatsoever I was to go immediately to the emergency room.  My wife almost had a heart attack on that one.  The good news was that I went from 0.1 to 0.4 in one week without any fever ( off all meds) , then 0.4 to 0.6 in the second week, and then I  just stayed there at 0.6 for week after week after week until week 12.   During that time I never had a fever and I was traveling to New York and in the subways (I did not tell the docs) - Germs were everywhere - I could see them moving from person to person.  I felt great - no meds - no side affects.  Just New York in spring time.  I was taking Curcumin all throughout this period (and continue to this day).

And then by week 10, my ANC started to rise from 0.6 to 0.8, then finally crossing over to 1.0 by week 12.  At that point, Dr. Cortes put me on 20 mg. of Sprycel.  In one week, my ANC count dropped down to 0.7, but in week two since re-start, my count stayed around 0.7.  Then in week 3 following re-start, my counts started to rise to 0.8.  By week 4 following re-start, my ANC went as high as 1.6 and I was thrilled.  Since that time, it has hovered between 1.0 and 1.5 with my last CBC in early December at 1.3.  During re-start of 20mg Sprycel - my Ph+ chromosome cytogenetics dropped to zero.  Dr. Cortes told me I was on my way and he'll see me in 3 months.  He said my ANC count will probably stay in that range as my new normal. 

Dr. Cortes also told me via e-mail that I no longer need monthly CBC's and that I can wait until the next PCR (3 month) in February.  He did say - keep an eye out for infection, fever and mouth sores (that I had when ANC went below 0.5) as guidance on getting a CBC done sooner.  If I stay healthy, have no mouth sores, and no "petechia" on my skin as an indicator that platelets are getting too low then I should be fine. 

There's no magic threshold - just severe or not severe.  Platelets below 10 is severe.  ANC below 0.5 is severe.  Oncologist will vary on what is worrisome to them.  M.D. Anderson has seen it all in the clinic and so have a greater tolerance to lower counts than other facilities. 


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"





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