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Bloodwork is Changing


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#1 Susan61

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Posted 15 July 2014 - 05:33 PM

Hi:  I have to see if I come on here as a member.  I was in the hospital in May with another blood clot, and back on Warfarin.  Then I had to have a pacemaker put in after flatlining in my sleep.  Still not feeling right, and have to go for more testing.

     My blood work has been in the same range for 13 years with low platelets, low RBC and HGB.  Now all of a sudden my HGB has gone down lower to 9.7, and my platelets have gone up to 155 from an average of 119 all these years.  I am waiting for my PCR results, but worried why my counts would just change so abruptly.  I actually wondered if its possible that I do not need the 400MG of Gleevec anymore, but my doctor still insists I cannot lower my dose.

    I was wondering if the blood thinner could be doing some of this also.

Susan



#2 Trey

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Posted 15 July 2014 - 09:18 PM

You are indeed signed in now as Susan61.

 

I would think a lower dosage would be a good idea.  Your blood counts are probably being driven by other issues, but the TKI is not helping.  There is no reason to avoid a drop to 200mg.  I have done that for about 5 years now. 



#3 Susan61

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Posted 16 July 2014 - 10:29 PM

Thanks Trey:  I just told someone today that I am going to push to lower my dose to 200mg.  I feel that maybe 400mg was good for me back in 2000, as that was the only dose they knew worked.  Now all these years later, I may not need such a high dose anymore.

I see my doctor on Monday, and I am going to ask her.  My problem is I just got my 90 day supply of 400mg, and I cannot afford to pay for a new script right now.  To break the 400mg in half, leaves that open end where its not coated.  I already have stomach issues.

Everything else that is happening to me has just been unreal.  I do not want to see anything go wrong with the  CML after all this time.

I will post after I see how things go.

Thanks

Susan



#4 gerry

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Posted 16 July 2014 - 11:22 PM

Hi Susan,

If you do lower your dosage you will notice a lot of difference in how you feel. :)

 

They've proved that people can stop their Gleevec and restart if necessary and return to the same place they were before. You shouldn't have any issues with dropping to 200mg after all this time. I went down to 300mg after a year of PCRU and have now stopped the Gleevec altogether and still remain PCRU.



#5 Guest_Frank_*

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Posted 17 July 2014 - 04:51 AM

Have you been checked for occult blood loss due to the Warfarin? Stool Guaic, etc. regards, Frank

#6 mark1963

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Posted 17 July 2014 - 06:52 PM

how often are they doing the pt-inr? are they adjusting the warfarin dose at all? both the gleevec and the warfarin warn against the other. I had a dvt right after diagnosis and spent my 1st year getting blood tests every week. hope all goes well and bless you

mark



#7 Antilogical

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Posted 17 July 2014 - 07:17 PM

Susan61 - My dose was reduced from 400mg to 200mg when I was preparing to have a knee replacement last year.  I had a whole bottle of 400mg pills, so I just broke them in half.  I have a very sensitive stomach, but had no issues with the exposed edge of the pills, making sure that I ate a meal and drank a glass of water when I took them.  In general, I felt fantastic, as most of the side effects disappeared and the remaining ones were much reduced.  Now that I am up to 300mg, the side effects have come back proportionally.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#8 Trey

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Posted 18 July 2014 - 08:28 AM

The Gleevec coating does not help reduce stomach issues.  So I would just break them in half.  But I found when I did that the jagged end had trouble going down unless I swallowed it with some food I had chewed. 



#9 pammartin

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Posted 18 July 2014 - 08:53 AM

Susan,
Positive thoughts and prayers to you.
Pam

#10 Susan61

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Posted 18 July 2014 - 04:42 PM

Thank You Everyone:  Its just been too much for me to deal with.  I am seeing my doctor on Wed instead of Monday.  I still feel very weak and get dizzy, therefore, I do not want to drive myself to her office.

I am getting regular blood checks on my PT INR, and have been stable.  Still not feeling like I should since I got the Pacemaker, but I am getting around to do what I can.

Thanks Trey, I will break them in half and I always take them with food and water.  Did not realize its been 5 years that your doing the 200mg.  I have heard what you said Gerry about being able to get your response back.  I will find out on Wed,how my PCR test was also.

It does seem like all this happened after I started the Warfarin, but yet 3 years ago when I had a DVT in the right leg there was no change  in my blood work results.

The other weird thing is that I had kinky curly hair when I started the Gleevec, and now its back again as if I was new to Gleevec.

I will let you know what happens.  I know she will give me a hard time as usual.



#11 hannibellemo

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Posted 19 July 2014 - 08:25 AM

Susan, 

 

So glad to read your posts and to know you are back on the forum. You have always been such an inspiration. 

 

I know you have been struggling with this question of lowering dosage for quite some time and it has not been helped because your doctor has been so rigid. If she gives you a hard time this time you might take the approach with her that, "I would prefer to lower my doage to 200mg with your blessing, but I will do it regardless", and see what she says. 

 

She could, of course, say that she would no longer treat you, but I would be surprised after such a long relationship. You do deserve to see if the lower dosage works and if it brings you some symptom relief. And it doesn't appear as though there would be much risk associated with lowering the dosage.

 

Keeping my fingers crossed for you and hoping you get a quick return to some normalcy!

 

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 Susan61

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Posted 22 July 2014 - 06:18 PM

Hi Pat:  That is exactly what I am going to do, plus she is not my original doctor who I had for over 10 years.  When my Oncologist who I miss so much retired, I went to her.  She is not close to my home, and I have had some issues with her forgetfulness.  I always have to correct her on how she writes out my scripts and slips for blood work.  I have been thinking of finding someone closer to home, but I hate to start all over again with someone new.  I will post after I see her, and let everyone know how I made out.

     I just hope I can do as well as Trey and others who have reduced their dosage.  I know I have been told that I can get my response back again if I have to increase my dose again.  I do not even have my results of my last PCR test that I did 2 weeks ago.  She does not call. She waits till I come in to see her.  If I am Negative, then I will go for it.

Susan



#13 gerry

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Posted 22 July 2014 - 06:47 PM

Good luck Susan.

My doc was initially "got to keep hitting the CML hard" when I first started going to him. But he has listened to my requests to first drop the dosage down and then to stopping the Gleevec.

Waiting on the first test result was hard, but when you see the negative you'll know it will be okay. :)



#14 ChrisC

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Posted 23 July 2014 - 12:30 AM

Hi Susan,

 

You are a trooper and a survivor!

 

I am wishing you the very best: best quality of life, best of ease in dealing with all the challenges you are facing, best results in your quest to reduce your Gleevec dosage . . .

 

You might want to print out this article to present to your doctor:

 

http://www.oncologyp...c5d26cc00f.html

 


Depth of molecular response factors into safe TKI withdrawal in CML

Key clinical point: Long-time TKI therapy can be stopped in chronic myeloid leukemia in deep molecular remission. The level of molecular response prior to TKI withdrawal affects molecular relapse-free survival.

Major finding: After TKI withdrawal, 49% of patients in MR4 relapsed, compared with 39% in MR4.5 and 39% in MR5.

Data source: First interim analysis from a prospective study in 200 CML patients in deep molecular remission.

Disclosures: Dr. Saussele reported honoraria and research and travel support from BMS, Novartis, and Pfizer.

MILAN - A full 61.5% of patients with chronic myeloid leukemia in deep molecular remission for more than 1 year on long-term tyrosine kinase inhibitor therapy remained alive and free of relapse 6 months after stopping their TKI in the EURO-SKI trial.

Molecular relapse-free survival at 9 months was 58% and 55% at 12 months.

The preplanned interim analysis after 200 patients allowed the trialists to discard the study's null hypothesis that molecular relapse-free survival at 6 months would be 40% or less (P less than .0001).

"With less strict inclusion and relapse criteria than the A-STIM study and other trials, stopping is safe and we can continue with the trial," Dr. Susanne Saussele said in a late-breaking abstract session at the annual meeting of the European Hematology Association.

Importantly, interim results from the EURO-SKI (European Stop TKI) study also suggest that the level of molecular response (MR) achieved prior to TKI withdrawal affects molecular relapse-free survival.

Among 197 patients with molecular laboratory results available for exact classification, 49% of patients in MR4 relapsed, compared with 39% in MR4.5 and 39% in MR5.

"In the setting of standardized molecular testing within a CML [chronic myeloid leukemia] stopping trial, it seems that molecular remission has an impact on molecular free-survival," said Dr. Saussele of University Medical Centre Mannheim, Germany.

As no statistical test was performed and this was an interim analysis, MR4.5 or MR5 cannot yet be used as a criterion to select patients to withdraw from treatment, she said in an interview.

The findings do confirm results from the recent A-STIM (According to Stop Imatinib) study showing that loss of major molecular response can be used as a practical criterion for restarting imatinib (J. Clin. Oncol. 2014;32:424-30).

Several studies including the STIM (Stop Imatinib) trial and the STOP 2G-TKI (Stop Second Generation Tyrosine Kinase Inhibitors) study have shown that imatinib (Gleevec), dasatinib (Sprycel), and nilotinib (Tasigna) can be safely withdrawn in a substantial proportion of patients with CML in deep MR.

A number of questions remain open, however, such as which molecular level has to be reached before stopping TKI therapy, the minimal duration of TKI pretreatment or MR4 before stopping, and which prognostic factors influence molecular relapse-free survival, she said.

EURO-SKI was set up to define prognostic markers to increase the rate of patients in durable deep MR after stopping TKI treatment. Other aims are to evaluate methods of molecular monitoring, quality of life, and saved treatment costs per country.

Continued... [I can't bring up the second page, it seems one has to register and I choose not to]

 


Best to you,

 

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 





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