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#21 winespritzer

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Posted 17 January 2016 - 08:57 PM

Gail,
Brain fog apologies....no chocolates for you with your diabetes...maybe once a week!
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.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- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#22 Gail's

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Posted 21 January 2016 - 10:58 PM

Talk about brain fog! Took me 20 min to find this again. You create an account, plug in your drugs, then they create a list showing your costs with tons of supplemental plans in your area. Hope it works for you.

https://www.medicare...tions/home.aspx
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

#23 Buzzm1

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Posted 21 January 2016 - 11:06 PM

Talk about brain fog! Took me 20 min to find this again. You create an account, plug in your drugs, then they create a list showing your costs with tons of supplemental plans in your area. Hope it works for you.

https://www.medicare...tions/home.aspx

Thanks Gail ... my supplemental Kaiser Senior Advantage 2016 cost is $75/mo.; that's in addition to the $104.90 monthly cost of Medicare Part B ... both are deducted from my Social Security monthly benefit.

 

PS: Kaiser Senior Advantage has Medicare's highest rating ...

 

2016 out of pocket drug cost is quoted as $2,966


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


#24 ChrisC

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Posted 22 January 2016 - 07:55 PM

How great would it be if this pans out [see link to possible Alzheimer's cure below]?? Once verified, we could get tested and treated; even better would be to determine food sources to ensure proper maintenance levels for continued . . . oh, what's the word?

ChrisC

http://rodmartin.org...red-alzheimers/


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!

 

 


#25 winespritzer

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Posted 22 January 2016 - 08:52 PM

Wow, so timely for me . Have been so busy helping friend w alz, I totally forgot about needing to research a reasonable pharm plan.
Thanks...even blocked out the impending blizzard. Also forgot to call onc for latest test result. Holy cow.
Thnx all,
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.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- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#26 Gail's

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Posted 24 January 2016 - 05:32 PM

Buzz, I'm really confused then. My premium quote for Kaiser senior advantage is $119 and estimated drugs per month $3900. When I talked to Kaiser rep she told me $239 mo premium and long explanation later, my out of pocket for drugs would be $10,000
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

#27 rcase13

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Posted 24 January 2016 - 05:49 PM

I enjoy the brain fog and forgetfulness. I read and watch movies twice and none the wiser

And I occasionally forget I have cancer.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#28 Buzzm1

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Posted 24 January 2016 - 06:50 PM

Buzz, I'm really confused then. My premium quote for Kaiser senior advantage is $119 and estimated drugs per month $3900. When I talked to Kaiser rep she told me $239 mo premium and long explanation later, my out of pocket for drugs would be $10,000

Gail. the cost of Kaiser Senior Advantage, for whatever reason, differs a little for each area with Santa Clara County, where I am, being one of the lowest at $75/month.  I also don't subscribe to the extra $20/mo. dental coverage, etc., so that may account for some of the difference.  However, that doesn't explain why your drug cost is calculated to be so much higher than mine.  Our costs getting through the Medicare donut hole and reaching catastrophic coverage, should be essentially the same, and once that is reached, costs per Rx, are minimal, $5/generic/mo., and $12 Tier 5/mo.


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


#29 winespritzer

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Posted 24 January 2016 - 09:30 PM

Hi Buzz,
Cannot get Kaiser...I live in NJ.
Thnx,
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.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- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#30 winespritzer

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Posted 24 January 2016 - 09:30 PM

Hi Buzz,
Cannot get Kaiser...I live in NJ.
Thnx,
Winespritzer

CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.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- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#31 beno

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Posted 26 July 2016 - 11:29 AM

At my last visit, I complained to my oncologist of difficulty remembering things and concentrating on detail oriented tasks.  She told me it was impossible that Sprycel was the cause of those issues.  She told me to wait it out because it could've been the extreme anemia I had and that she would send me in a for a neurology consult if I wanted.  I didn't push the issue because she is leaving the area and I will see a new oncologist for my next appointment anyway.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148


#32 tazdad08

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Posted 26 July 2016 - 01:18 PM

too many of our drs are in total denial. Not all of them, but still far too many. I see so many topics on here with people stating that their dr basically doesnt believe that tkis cause these side effects. Seems odd that so many of us experience the same side effects that are "impossible" to be caused by the meds


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#33 steelpony5555

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Posted 27 July 2016 - 11:58 AM

My side effects come in waves also but the 2 that seem to always be there are fatigue and brain fog.  The one thing I can't remember is names....I can't even remember relatives names at times.  Use to get mad at myself for not being able to remember stuff but finally just gave up.  I have a wife who remembers for me lol lol lol



#34 tazdad08

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Posted 27 July 2016 - 02:07 PM

My side effects come in waves also but the 2 that seem to always be there are fatigue and brain fog.  The one thing I can't remember is names....I can't even remember relatives names at times.  Use to get mad at myself for not being able to remember stuff but finally just gave up.  I have a wife who remembers for me lol lol lol

And reruns are a lot less boring!!! That is the bright side that I see with my chemo brain... Its odd at the random things that just do not stick. Things like our dog having puppies, name, places I've been. I just have to laugh about it. I am sure it is odd for my wife to explain about the puppies that I was there to see the birth of, but I have absolutely zero memories of it. 


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#35 rcase13

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Posted 27 July 2016 - 10:04 PM

Yep that is me now... Books and movies are great the second time around!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#36 steelpony5555

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Posted 28 July 2016 - 11:48 PM

But I found it is hell trying to build an outdoor kitchen/pavilion.  Trying to measure and keep things straight in my head is rough....I found if I build in the morning things go better, but as the day wears on then I start forgetting and miss measuring stuff....it is also bout the time fatigue sets in and I find my self sitting in a lawn chair just staring at what is done so far.  There was a time I would've had this thing up in 2 days....kinda pisses me off....



#37 rcase13

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Posted 29 July 2016 - 08:05 AM

Oh my god this is me. We are restoring an old 70s house. You described my life exactly! Projects must be done in the morning. I am forced to hire more and more out. My loft / exercise room in the storage barn has been put on hold until fall. I am making to many mistakes. I just can't work and think straight in the heat.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#38 jmoorhou

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Posted 30 July 2016 - 03:31 PM

Exercise, walking, swimming, running, rowing machine (every day) really helps, it's hard to get your self to do it but I think it brings you up to 75 to 80 percent normal.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#39 AllTheseYears

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Posted 30 July 2016 - 06:19 PM

So, I came home from the grocery store, put my car keys into the emptied grocery bag...and threw the bag away.  Absolute panic set in when I tried to find the keys the next morning.  Why do I do these things?!?  After searching the entire house in a frenzy, for some reason, I calmly went outside to the garbage bin and fished out the grocery bag.  My keys!  

 

Definitely, my brain works better in the morning when I'm not so fatigued. If I hadn't found my keys before noon, they likely would have gone missing forever.  :wacko:



#40 tazdad08

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Posted 01 August 2016 - 11:05 AM

But I found it is hell trying to build an outdoor kitchen/pavilion.  Trying to measure and keep things straight in my head is rough....I found if I build in the morning things go better, but as the day wears on then I start forgetting and miss measuring stuff....it is also bout the time fatigue sets in and I find my self sitting in a lawn chair just staring at what is done so far.  There was a time I would've had this thing up in 2 days....kinda pisses me off....

Sorry this is our reality, but glad I am not the only one. I added 6 plugs to our pool deck. Should have been a very simple and fast project. Took me two days to do a 2 to 3 hour job


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!





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