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Started by MooshiDad , Jul 01 2017 03:47 PM

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#1 MooshiDad

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Posted 01 July 2017 - 03:47 PM

I want to start by saying thank you to all the posters here. I have learned a great deal form all of you.

 

I was diagnosed in early June of 2015 (accelerated phase) and was placed on 140mg Sprycel in late August of 2015 (insurance mix-up delayed prescription). My last three PCR's have been .0083, .0066 and .0083 (last one in April) respectively. I was reduced to 70mg in April and my Oncologist is looking forward to the next dosage reduction with the goal of cessation sometime in the future.

 

I have been lucky as far as side-effects. I suffered from the "Sprycel rash" that has all but gone away over the last 4 months. Other than that, no side-effects.

 

I look forward to posting and reading all that I can on this forum. Thank you all!!


#2 gerry

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Posted 01 July 2017 - 06:29 PM

I am glad you decided to start posting. :-)
Most of us are diagnosed in the Chronic Phase, so it is good to hear from someone doing well who was diagnosed in the Accelerated Phase.
Welcome aboard.

#3 jmoorhou

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Posted 02 July 2017 - 12:35 AM

Welcome as another member often says to the club nobody wants to belong to :lol:   Here is a link to Trey's log, he and Scuba are the resident experts,  

 

http://treyscml.blog...logspot.com/  


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

#4 thatguy

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Posted 02 July 2017 - 06:57 PM

Welcome sir!
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#5 MarCap73

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Posted 03 July 2017 - 12:51 PM

Ahhh yeah....the Sprycel rash.   :(


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 

#6 Kali

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Posted 03 July 2017 - 01:11 PM

Welcome to this board. It is fantastic! There are very knowledgeable posts that are so helpful.
Sounds like your onc is really with it on up to date reduction of dosage plans.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%

#7 MooshiDad

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Posted 04 July 2017 - 09:04 AM

I am glad to be part of this community. :)


#8 MooshiDad

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Posted 04 July 2017 - 09:06 AM

Ahhh yeah....the Sprycel rash.   :(

Funny thing about that rash....I have had it on my chest area and upper back for about 18 months. Suddenly, it March, it started to go away (I didn't reduce my Sprycel dosage until the end of April). As of right now, it's about 90% gone. Don't know why, but I have no complaints.


#9 MooshiDad

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Posted 04 July 2017 - 09:07 AM

Welcome as another member often says to the club nobody wants to belong to :lol:   Here is a link to Trey's log, he and Scuba are the resident experts,  

 

http://treyscml.blog...logspot.com/  

Thank you so very much!!!


#10 MooshiDad

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Posted 04 July 2017 - 09:16 AM

I am glad you decided to start posting. :-)
Most of us are diagnosed in the Chronic Phase, so it is good to hear from someone doing well who was diagnosed in the Accelerated Phase.
Welcome aboard.

As my wife calls me..."the freak of nature". I went from completely normal blood work in December 2014 to a WBC of 345,000 in June 2015, a spleen about to rupture and over 11% blasts. Funny thing is, is that I felt fine and had no other problems. I was going to work everyday up until the day I went to the doctor with a pain in my abdomen (spleen). My doctor and my Oncologist said I should have felt horrible in those conditions.....hence "freak of nature". Life is funny!!!


#11 kat73

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Posted 04 July 2017 - 12:48 PM

Wow, MooshiDad, you got rescued on the brink!

 

Re the magical disappearance of the rash:  Yup, that's how it goes.  And comes.  Weird, inexplicable.  I had two, maybe three (I mercifully have forgotten) cycles that lasted about a few months each, and then, gone never to come back.  (I HOPE!)  The only thing I could figure was it had something to do with the natural growth cycle of skin cells.  You know how when you get a sunburn, you know it's going to peel in a couple of weeks?  There isn't anything you can do to avoid it or hurry it up - the damaged skin cells have to rotate to the surface and slough off, their own sweet time.  Anyway, hope the rash doesn't come back for you.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#12 MarCap73

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Posted 06 July 2017 - 11:21 AM

Funny thing about that rash....I have had it on my chest area and upper back for about 18 months. Suddenly, it March, it started to go away (I didn't reduce my Sprycel dosage until the end of April). As of right now, it's about 90% gone. Don't know why, but I have no complaints.

 

Mooshi,  I developed it on my upper arms mainly and just as you stated, mine started to slowly disappear too.  All but gone now.  Weird medication this Sprycel is!  I also developed an itchy scalp for a while.  I used tea tree oil that someone on the board here recommended and I also saw a dermatologist who provided me with an Rx for a topical steroid to help with the itching. 


Dx: 11/2015

Sprycel: 100mg

 

May-17: 0.0095% IS

Aug-17: 0.0048% IS

Nov-17: 0.0066% IS

 

 

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