Update on Audrey. She has been diagnosed with AML leukemia, sub-type unknown. Blasts were all myeloid lineage so original guess by doctors that she had ALL was incorrect. She went through 7 days of induction chemotherapy and will remain in the hospital for a while due to extreme low counts. Had another BMB and there will be a re-assessment of her status. Platelets started out very low before chemo and now have been extremely low (single digits) despite daily transfusions.
Leukemia Shock!
#21
Posted 15 July 2015 - 08:49 AM
#22
Posted 15 July 2015 - 10:45 AM
Thank You Trey. I have been worrying about her.
rct
#23
Posted 15 July 2015 - 03:15 PM
Thank you, Trey, I'm glad they have made a dx and hope 1st induction works for her. If you have contact with reedgirl or her husband please pass on my best regards and hope for uneventful remission.
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>
#24
Posted 15 July 2015 - 08:56 PM
Thanks Trey.
#25
Posted 16 July 2015 - 09:11 AM
#26
Posted 16 July 2015 - 10:55 PM
#27
Posted 11 November 2015 - 04:06 PM
Update Nov 11 2015:
Audrey is now at the University Of Michigan preparing for a bone marrow transplant on Nov 16th. She started the high dose chemotherapy regimen this week in preparation for the transplant. Her leukemia (AML) has been fairly aggressive.
Recall that Audrey's husband Greg has CML and she has posted here often about his condition. He has been a patient of Dr Talpaz at U of M, where she is now located, although they live in Pennsylvania.
#28
Posted 11 November 2015 - 11:57 PM
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)
#29
Posted 12 November 2015 - 05:42 AM
Thanks Trey. Poor Audrey. Thinking of her and her family.
Alex
#30
Posted 12 November 2015 - 12:48 PM
Ditto, Trey, thanks - please continue to update us on Audrey - she is part of our family.
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.
#31
Posted 13 November 2015 - 01:22 PM
I was following situation on the waiting for dx thread. As an AML survivor I was praying she could avoid Sct. Please keep us updated if possible
Julie
Blessings,
Julie
DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT
Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.
Qrtrly PCR & Phlebotomy for high iron stores
Almighty God is my redeemer and HEALER!!@
Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..
Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."
#32
Posted 15 November 2015 - 12:34 PM
i have been wondering how she was doing from time to time ever since I read the shocking post. I was hoping her AML would be cured with chemotherapy. I hope the bone marrow transplant will go well for her.
Thank you Trey for the update! I am so grateful you are here to provide help to all of us.
Ditto, Trey, thanks - please continue to update us on Audrey - she is part of our family.
Ditto again to both of the above. Thanks, Trey. Prayers and thoughts to Audrey.
Sue
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
#33
Posted 16 November 2015 - 04:08 AM
#34
Posted 29 November 2015 - 10:06 PM
Audrey is 12 days post transplant and in generally poor condition. The docs used the strongest possible chemo on her and she has suffered serious side effects and is also fighting infections. Hoping the donor cells engraft in the next few days. Generally the situation is not as good as hoped for.
#35
Posted 29 November 2015 - 10:26 PM
#36
Posted 30 November 2015 - 09:34 AM
Prayers for Audrey and her family ! Poor thing!
Cathy
Thanks for the update!
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#37
Posted 30 November 2015 - 01:03 PM
Thanks, Trey. Upping the prayers.
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.
#38
Posted 02 December 2015 - 09:11 AM
Thanks for the update. My husband had the same treatment plus TBI and was in a similar situation for 2 weeks post transplant. Started to engraft around day 14 though and came home on day +17. Once engraftment starts, things improve quickly. Please let her know we are rooting for her, and that what she is experiencing is completely normal for people undergoing a transplant.
-Lottie
#39
Posted 02 December 2015 - 11:07 AM
Thanks for the above, Lottie - your insights are invaluable here.
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.
#40
Posted 02 December 2015 - 11:52 AM
You're welcome I don't come around as much as I used to because my husband is almost five years post transplant now, but I'd like to think I can still come around now and then and hopefully help a few people.
Transplants are tough and some people take 3-4 weeks to engraft, and life pretty much sucks before engraftment. I have high hopes that she will push on through and someday all this will all be a bad memory for her, as it is for my husband and I.
-Lottie
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