41 replies to this topic

[winespritzer]

Should have cut dose...onc disbelieved pe was from Sprycel....ugh

[winespritzer]

Had cat scans to rule out tb, stomach Cancer...pulmonologist ordered Thoracentisis. Awaited analysis (16oz fluid drained) to determine cause of pe...now awaiting arrival of 70mg Sprycel a week later..am on 7 days prednisone....still on 100 mg Sprycel....
Had to be proactive about pe. Drs didn't believe my symptoms until they saw chest xray. Xray was serendipity...ordered by WTC monitoring program.terrible medical care.
Pulmonologist left town for a month long trip right6 after ordering Thoracentisis and Inc never received reports. Third world medicine.
Now I know meds should have been reduced or cut a month ago and latest research says cutting down Sprycel after pe doesn't prevent6 future ones.
Thanks for all of your help.
Winespritzer

[ROMO]

Human beans can live on multiple levels.

One level you can take care of yourself

Get the dose right and other things..

 

The other level you can have some fun on a cruse.

Two levels. Our new normal.

 

Romo

[Buzzm1]

Had cat scans to rule out tb, stomach Cancer...pulmonologist ordered Thoracentisis. Awaited analysis (16oz fluid drained) to determine cause of pe...now awaiting arrival of 70mg Sprycel a week later..am on 7 days prednisone....still on 100 mg Sprycel....
Had to be proactive about pe. Drs didn't believe my symptoms until they saw chest xray. Xray was serendipity...ordered by WTC monitoring program.terrible medical care.
Pulmonologist left town for a month long trip right6 after ordering Thoracentisis and Inc never received reports. Third world medicine.
Now I know meds should have been reduced or cut a month ago and latest research says cutting down Sprycel after pe doesn't prevent6 future ones.
Thanks for all of your help.
Winespritzer

Winespritzer, 70mg is not a significant enough reduction in your dosage, especially with your having been PCRU for a year and a half; 50mg, or less, would suffice to maintain, or regain PCRU, in the event you have lost it during any drug break.  Please consider adding your CML history into your Signature.  Thanks in advance. 

[winespritzer]

Dr wanted me to drop to 50mg. I thought, too low. Yes, will send history. You are a godsend.
And yes, I will try as a human 'bean' to function on 2 levels.

[winespritzer]

I thought I had to be 2 yrs. PCRU to drop to 50mg.
When I finish this month of Sprycel, I will ask to drop to 50mg.

[Buzzm1]

I thought I had to be 2 yrs. PCRU to drop to 50mg.
When I finish this month of Sprycel, I will ask to drop to 50mg.

Winespritzer, as others have mentioned, you should be on a drug break ... more than anything else, it will help resolve your Pleural Effusion ... listen to hannabellemo and kat73 ... they are well-experienced when it comes to dealing with PE ... not to worry, when you restart Sprycel at 50mg, you will quickly regain PCRU, as they both have.  

[winespritzer]

CML History...Winespritzer....age 73....old kid!!!

DX- 1/16/14...100 mg sprycel

WBC-55...??

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00-4/16;7/16;10/16;1/17;4/17;7/17;10/17

 

70 mg sprycel-11/4/17

Thank you...

[scuba]

CML History...Winespritzer....age 73....old kid!!!

DX- 1/16/14...100 mg sprycel

WBC-55...??

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00-4/16;7/16;10/16;1/17;4/17;7/17;10/17

 

70 mg sprycel-11/4/17

Thank you...

 

Given your PCR history and P.E. - you should strongly consider cutting your dose to 20 mg maintenance. You were very responsive, and you are at PCRU . You will likely remain PCRU at 20 mg. Adverse events are much lower on 20 mg.

 

A simple way to test is to start 20 mg and at 3 month PCR note any change. You will likely remain PCRU, but if not and there is an increase, you can up your dose to 40 mg and test again in 3 months. Chances are excellent that either 20 or 40 will be sufficient.

 

Finding out now which lowest dose is sufficient can save you from future P.E.'s and related adverse events at 70 mg.

[Buzzm1]

CML History...Winespritzer....age 73....old kid!!!

DX- 1/16/14...100 mg sprycel

WBC-55...??

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00-4/16;7/16;10/16;1/17;4/17;7/17;10/17

 

70 mg sprycel-11/4/17

Thank you...

Winespritzer, instructions for adding your CML history into your signature are contained in the link below ... thanks.

[winespritzer]

My Dr would not go along with that. I need research data to back it up. So you think a Dr at Sloan Kettering would prescribe such route?
Thank you so much.
Also I didn't see a link for my cml info.

[Buzzm1]

Also I didn't see a link for my cml info.

 

to add your history/status into your signature

upper right, click on drop down menu next to your name..

select My Settings ..

on left-side, select Signature

scroll down, enter history/status info, Save Changes

thanks for participating

[winespritzer]

Lastly, I vaguely recall your having a Dr away from the NE. Is it Dr. Cortes? I am in NJ.
Does weight affect Sprycel efficacy?

[kat73]

winespritzer - Have you read, Pleural Effusion in Dasatinib-Treated Patients woith Chronic Myeloid Leukemia in Chronic Phase:  Identification and Management, by Dr. Jorge Cortes, written in 2016?  It spells out the protocol to follow, whether it's the first PE or not, whether it's small/moderate/large, etc.  Most usually a complete drug break is called for.  If the PE is being caused by dasatinib, then it will not go away while you're on it.  The $64,000 question is, of course, once the PE is gone, will any dose level of dasatinib be tolerated?  You mentioned recent research showing that dose reduction does not prevent future PEs - I haven't seen that; could you give me the citation?

 

I'm appalled that your onc didn't believe the PE was caused by Sprycel; it's a completely established AE, in all the literature, including the package insert.  Dasatinib does seem to have the edge over the other TKI's for PE.  The incidence is nearly 30% of patients on dasatinib will have at least one.  Although technically not considered a "late-emerging" SE, I think we are going to see more and more of them as time goes on, and I wouldn't be surprised if they didn't write into the protocol to call for a semi-annual chest x-ray for all dasatinib patients starting at 6 months or a year.  I don't think they should wait for symptoms; I'm pretty sure, looking back, that I had a small, continuous PE for the entire time I have been on Sprycel - I just didn't have any symptoms.  But I did have two random chest x-rays, for other reasons, and small PE was noted.  Shrugged shoulders was the treatment.  I think this will change.  I've had two subsequent moderate ones and these were treated with a complete drug break. 

 

Dr. Cortes is at MD Anderson in Texas; he is Scuba's doctor.

 

I don't know the answer about the weight, but I'm pretty sure it doesn't unless you are at the wildly extreme ends of the weight arc.

[winespritzer]

Hi Kat,

From the "Weekly Grp Activity Summary:CML" (LLS)

"Pleural effusion and molecular response in desatinib-treated CML patients in a real-life Italian multi center series"

Annals of Hematology, 10/2/17

 

Following up w onc. He and pulmonologist needed to rule out other problems before reducing dosage. Just a nasty medical treadmill.

 

Have a ton of energy right now...probably from prednisone and thoracentisis...doubt the 3 day drop to 70 mg could make such a quick difference. But I am happy to have this burst of energy. I am POSTIVE I have had a low level PE/low level energy for a long time.  Have onc apt in 2 wks.

 

Thank you so much.  I have printed articles for appt.

[Jan0080]

Wine, I have taken my share of prednisone. I probably would weigh 30 pounds less if I hadn't needed the prednisone. The weight gain hits as you end the prednisone. That said, I also believe that all of us Sprycel takers should have been started at 50 mg and I agree with Scuba that you should be on 20 mg. I initially needed prednisone for hypersensitivity pneumonitis - too long of a story except to say that goose down is not a luxury wonderful product.

[winespritzer]

Hi Jan,
Prednisone is for 7 days so I hope I don't gain weight or lose bone mass.
I expect to talk doc into reducing dosage...have printed out research and Sprycel protocol. I now know I should have been hyper pro active.

[kat73]

winespritzer - Thanks for the cite - I found the abstract, but I'm reluctant to join the PubMed thing - do you know of a way to read the full text?  Is the full text in the weekly summary?  How do I find that LLS weekly summary?  Sorry to bother you with this, but it is directly on point for me in my "case argument" I'm about to have with the onc.  (As are some of the referenced articles of the abstract.)  Let me know how your argument goes!  I do know that reducing from 70 to 50 didn't prevent my recurrence.

 

The prednisone is a (wonderful, briefly!) known raiser of energy and mood - enjoy!  But, sadly, yes, not without consequences when used longterm.  Sigh.  As you also know from the Cortes paper, there is no consensus that prednisone or lasix help with a pleural effusion.  I had them last time, and this time got the same midterm result without.  Also last time I got the same relief from fatigue you express (BEFORE the prednisone) and yet this time, none.  Even though the PE is half-way gone.  Still no energy. There goes that data.

 

A gentle correction of Buzz's description of me - I haven't yet had the ecstatic pleasure of reaching PCRU.  I got one once.  But I did regain the safety of <0.01% IS after returning to Sprycel 50, which is where I was before the drug break.  Almost as good, but not quite as good as, undetectable. 

 

I'm particularly interested in your situation as I, too, am officially elderly.  (Yeesh.)  And I do think "they" are going to have to deal with us more and more, and I think they're going to have to bend their protocols for us.  20 mg, intermittent dosing - it's coming.  Now I just have to make the sale to my own doc!  Thanks for being my reference librarian.

[winespritzer]

Jan,

 

Try Community at lls.org.

 

It's the week of 10/20/17 ....Weekly Grp Activity Summary: CML (LLS)

Whole article/full text was available.

 

I am at chinazalea@gmail if you want to write to me directly.

 

Good luck getting your points across at your 10 minute office visit. It's amazing and terrible at how fast we must talk when we visit the docs.

Winespritzer

[kat73]

winespritzer - I'm having no luck locating any weekly group activity summary on the lls site.  "Community" or "Community Support" gets me nowhere.  I feel like someone is having a party without me.  Weekly Group Activity Summaries sound like fun reading.  Help, anyone?