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Results day today


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#1 Widgeonus

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Posted 17 February 2015 - 11:05 AM

Get my PCR results back today. On edge as always and hoping for some good news. I hate the anxiety that leads up to finding out my results. I'll update once I have my appointment in a couple hours.



#2 Buzzm1

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Posted 17 February 2015 - 12:18 PM

Wishing you the best Widgeonus


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#3 Widgeonus

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Posted 17 February 2015 - 02:42 PM

Got them back. .04 MD Anderson scale which equates to .014 IS.

Down 50% since last test.

Good day. :)

#4 gerry

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Posted 17 February 2015 - 07:45 PM

Congratulations to the both of you. :)



#5 pammartin

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Posted 17 February 2015 - 08:34 PM

Great news for you both. Congrats!

#6 mlk210

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Posted 17 February 2015 - 08:40 PM

What great news for both of you! Congrats :)


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#7 Darlene_Jack

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Posted 17 February 2015 - 08:55 PM

Really good to hear great newshappy for you both!!
One breath at a time

Darlene jack...

#8 chrissy778

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Posted 21 February 2015 - 09:23 AM

That is great news glad to hear.... :)


Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of


#9 hannibellemo

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Posted 21 February 2015 - 09:30 AM

Good news!


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>


#10 Gail's

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Posted 21 February 2015 - 11:57 AM

Good job! Thank goodness for these amazing meds! I got CBC results from yesterday's test. My WBC count has dropped from 96000 to 6000 in just under 4 weeks and my rbcs dropped again but not as much as prior weeks. I'm so grateful dr druker and team decided CML was worthy of drug development! My normal WBC is 7000 so I'm responding really well!

Now my little nagging worry surfaces. Is it possible for the counts to drop too fast, and does anyone know how quickly the healthy cells build back up?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#11 mlk210

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Posted 21 February 2015 - 02:50 PM

What great news Gail!

 

This is just my experience and obviously everyone is different.  After I started Sprycel in August, my WBC count went down to 2.7 at my lowest. They hovered in the 3's and 4's for a long time. Then I caught a cold and the big drop happen. In  my opinion it was because there wasn't enough healthy cells to fight off my sickness yet. (I'm sure there's some other real medical reason). My onc had given me one week to see if the drop was because of my cold or if I'd have to take a drug break. Luckily when I went back in a week later, I was back in the 4's. Six months out, my normal has bounced around from high 4's to high 6's. My rbc is still slightly low and has only been in normal range one time since I started treatment. 

 

There are people on the forum whose counts have dropped too low, but I'm not sure if there's a specific time frame where someone might be out of the woods so to speak for that happening.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#12 Gail's

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Posted 21 February 2015 - 04:26 PM

Thanks for your story mlk. I have had a cold for almost 2 weeks so you're saying that would be part of why I dropped so fast? I'm confused because I thought you produced more wbcs during illness.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#13 mlk210

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Posted 21 February 2015 - 10:48 PM

This is my personal thought and I'm by no means in the medical field. It's probably a ridiculous thought.  I caught the cold at month two of starting my TKI's. I think the TKI's were getting rid of my bad wbc cells and I just didn't have enough healthy ones, so my count dropped for that week.  Honestly, it's just my theory! Could have been that was my week my counts dropped low and then came back up.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#14 Billie Murawski

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Posted 21 February 2015 - 11:29 PM

Great News to you both.



#15 Trey

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Posted 21 February 2015 - 11:38 PM

Wedgy and Mr Tee walk into the plebotomy room.  A duck walks in and orders a martini.  Phlebotomist says, we don't served drinks in here.  Duck waddles out.  Mr Tee orders a PCR.  Phlebotomist says, we don't serve BCR here unless you are ABL to handle it.  Wedgy says, I am willing but not ABL.  Phebotomist says, the duck was ABL, but I was not willing.  Mr Tee and Wedgy walk out and into the bar.  Duck says, I would rather have a phebotomist in front of me than a frontal lobotomy.  Mr Tee hits a golf ball down the middle.  But he is Canadian, and it is winter, so his ball lands in the snow and is lost.  Wedgy orders a marrow PCR with a twist, but he is Un-ABL to produce adequate specimen. 

 

Further reading will not enhance your experience.  So go to the next post.



#16 Melanie

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Posted 22 February 2015 - 12:22 AM

Great news!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#17 Antilogical

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Posted 22 February 2015 - 04:13 PM

Good advice, Trey.  I followed your recommendation to the Tee -er- T.


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.


#18 Billie Murawski

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Posted 22 February 2015 - 11:41 PM

It sounds like someone hasn't been to the golf course lately.

  Trey, maybe you can help calm my nerves. Ron has seen his pcp, cardiologist it will be 3 times tomorrow he's getting a nuclear stress test. His pcp put him on magnesium, told him to get bw in 2 weeks which he did they called bw was fine, 2 weeks after that pcp wanted a thyroid test which he did. Pcp called me 2 times on Friday and told me to get him an appt at the cancer center soon as possible. I didn't want to ask to many question because Ron was standing right here. Pcp said his ash was elevated and in 2 weeks his wbc went from 11,000 to 14,000  the cc treats his polycythemia he hasn't had a phlebotomy  since sept,he gets bw every month and if his hematocrit is below 50 he doesn't need one. He had a lot of bw done in the hospital if his crit was above 50 I assume they would have done a phleb. Can you think of a reason why they are concerned. It's been almost 3 years since he started getting sick. he's doing great now I'm afraid he might have something else going on now. I told pcp he has the stress test tomorrow, I just felt like he was letting me know it was urgent, when they call after hours on Friday there wasn't anything I could do until Monday. He had a blood clot in his heart which went to his lungs and there were several bc in his lungs, he also had a bc in his leg. He is on 6 different medications to control that.Oh he has an enlarged heart too. I don't understand what all this has to do with the cc. I would appreciate any input you may have.                                 Thank You Billie



#19 Trey

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Posted 23 February 2015 - 10:38 AM

There is no blood test factor called ASH.  If you meant AST was elevated significantly then that could be heart related since it shows muscle damage, and the heart is a muscle.  But that would be a heart specialist issue.  Otherwise if the call was related to the results of the thyroid test, that was not clear in your question.  I would need to more clearly understand the facts. 



#20 Gail's

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Posted 23 February 2015 - 11:52 AM

Billie, was it the TSH (thyroid stimulating hormone)? Commonly used to measure at what level the thyroid is producing the hormone that's a big part of our endocrine system. High means his body is working hard to get his thyroid to do its job. This problem is called hypothyroidism which has symptoms like dry skin, more fatigue than usual, weight gain and depression. Treatment is to give a supplement of the thyroid hormone so the body doesn't have to work so hard. Response to the medication is measured by a lowering of the TSH level.

Have you had a chance to talk to oncologist yet?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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