Javascript Disabled Detected

You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.

Back on the roller coaster

Started by scuba , Jun 01 2011 09:52 AM

Please log in to reply

8 replies to this topic

#1 scuba

Advanced Member

Members
1,044 posts

LocationHouston, Texas

Posted 01 June 2011 - 09:52 AM

As somewhat expected. I am concluding my second week on Sprycel (20mg.) and sure enough my WBC's have plummeted again just like they did back in January.

WBC = 2.2 (last week 3.0)

ANC = 0.79 (last week 1.3)

PLT = 175 (last week = 220)

Red blood dropping also

Even at 20mg., Sprycel packs a punch. I may have to go off it again and let the counts recover. It seems to take six months for this cycle. As planned, they still believe that going on again off again will eventually get my marrow making normal blood.

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale)

March 2017 PCR: 0.01% (M.D. Anderson scale)

June 2017 PCR: "undetected"

September 2017 PCR: "undetected"

Back to top

#2 CallMeLucky

Advanced Member

Members
216 posts

LocationCT

Posted 01 June 2011 - 10:38 AM

You certainly are an enigma. Hang in there Michael, we are all pulling for you. I know you take this stuff in stride, but I'm sure you'd like it to get a bit more routine. I'm sure it will in time. I know it's not fair, but it seems the stongest ones get it the toughest.In the mean time, I hope you are still feeling well and throughout the day things are normal for you.

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

Back to top

#3 Susan61

Advanced Member

Members
43 posts

LocationNew Jersey

Posted 01 June 2011 - 12:21 PM

Hi Michael: You know we are all wishing you the best. We want you to find the right treatment for you. Have you thought about something else beside Sprycel? A lot of people are doing well with the ARIAD Trial. I cannot remember why you stopped the Gleevec. Did it stop working for you, or were the side effects so severe. You will have to excuse me with my Brain Fog. I have a hard time remembering things. I drive my husband nuts with it, but he just goes with the flow. Keep us posted, and we will keep praying.

Back to top

#4 Skittles

New Member

Members
0 posts

Posted 01 June 2011 - 01:10 PM

Michael, praying they find a way to treat you with without packing such a 'punch' yet achieve what it needs to for your CML. You have been through so much and I believe the doctors will find a better way for you. Skittles

Back to top

#5 TroyLynn

New Member

Members
0 posts

Posted 01 June 2011 - 03:17 PM

God bless you and hang in there Michael.

Back to top

#6 gark

New Member

Members
0 posts

Posted 01 June 2011 - 08:45 PM

Hang in thgere, buddy. I hope you are feeling o.k. Your attitude is an inspiration.

-Mark

Back to top

#7 Tedsey

Advanced Member

Members
85 posts

Posted 02 June 2011 - 02:43 PM

Always in your corner Michael. From one unusual CMLer to another, here is hoping for some "normalcy" for you very soon.

Teds

Back to top

#8 JoshLee

Member

Members
13 posts

Posted 02 June 2011 - 03:18 PM

Prayers coming your way. Keep up the good fight!

Back to top

#9 Happycat

New Member

Members
5 posts

Posted 02 June 2011 - 08:21 PM

Wishing you the best, Michael. I'll pray that your doctors can help find the right answer for you. It kinda stinks being the unusual patient, doesn't it? Too mystifying.

Traci