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#226
Sun Feb 9, 2014, 06:22 PM
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I am so glad you are doing so well Whiz. Keep up the good work!
 Honey
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Dx June 2013 MDS del 5q and 7t. Further chromosone changes August 2017. Lenolidomide and 10 months on Azacytadine failed. Transition to AML August 2018 failed induction chemo. Trial drug FT2101 failed at 6 months. Next on Venetoclax with cytoterabine. 
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#227
Sun Feb 9, 2014, 11:45 PM
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Great news!!! I follow them on facebook as well! I hope each day is getting better and better!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#228
Fri Mar 7, 2014, 10:36 PM
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D+127
Had my sixteenth outpatient visit to the hospital for eval and review of my 100ish day BMB...
Dr. confirmed my 100% donor cells again, anti-bodies are almost there, but not 100% WBC's were at 6.1 this morning (4-11 K/mcL is Normal Range).... ANC were 4.8 K/mcL today Normal Range is 1.5-8.8 K/mcL... HGB at 12.4 and PLT's up slightly to 157... Red Blood Cell (RBC) Count was 4.06 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was unchanged at 1.2, Potassium 4.1 and sodium at 142... ALT-Alanine aminotransferase down slightly to 35 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Feeling pretty good, walking 1.5 miles every other day, doing 100 push-ups again (5 sets x 20), muscle mass and appetite are both back.... No longer on anti-fungal (Noxafil) since my antibodies were high enough Dr. said I don't need to it take anymore... Haven't posted to this thread in a while, but I had two other visits in between 1/31/2014 and today... 2/11/2014 to meet with the survivorship clinic and 16 vials of blood drawn (various 100 day blood tests/blood studies) 2/21/2014 for Lung function test (came back better than before my BMT) and for pantamodine lung treatment (pneumonia preventative) What I thought to be neuropathy in my legs and right arm, ended up being a pinched nerve in my neck... every time I look at my toes, I get a shooting nerve in both feet from my waist to my toes, and in my right arm... I've been going to the chiro twice a week for the last two weeks, and it's helped a bit... (I've known my chiro for 28 years, and have seen him on and off the entire time, he's been great)... God Bless, and best to all...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#229
Fri Mar 7, 2014, 10:43 PM
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So happy to see this update!! Awesome news God bless!!!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#230
Sat Mar 8, 2014, 01:17 AM
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Dave,
Great news on all accounts. Very happy to see your progress!
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#231
Sat Mar 8, 2014, 01:32 AM
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Fantastic news, Dave. Awesome!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#233
Sun Apr 13, 2014, 09:42 PM
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D+162 (4/11/2014)
Had my seventeenth (or so) outpatient visit to the hospital for eval...
WBC's were at 5.2 (4-11 K/mcL is Normal Range).... ANC was 3.8 K/mcL (Normal Range is 1.5-8.8 K/mcL)... HGB at 12.5 and PLT's about the same at 156... Red Blood Cell (RBC) Count was 4.08 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was good at 1.0, Potassium 4.5 and sodium at 142... ALT-Alanine aminotransferase is down to 30 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Feeling pretty good, walking between 2.0 and 3.0 miles, 4 - 5 days per week, doing 100 push-ups (5 sets x 20), muscle mass and appetite are both back.... Immunity is still lower than normal (but good), so I still need monthly pantamodine lung treatments... Doctor explained they do this until my CD14? & CD19? counts are above 200 each... Currently they are at 56 & 110 respectively... My Lymphocyte count was down to 7.2% (Normal Range is 12-48%) during my 3/7 visit, and that had me worried (not the Doctor) but that rebounded nicely to 12.8%. Full 100 day cytogenetics report came back with no deletions, or abnormalities, next BMB scheduled for May 2nd, or 6 Months post BMT... God Bless, and best to all...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#235
Mon Apr 14, 2014, 01:35 PM
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Great news just keeps coming. I am very happy for you and your progress Dave.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#236
Mon Apr 14, 2014, 06:59 PM
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Dave the good news is inspiring. Between you and Dan it is great to hear of your progress. Keep it up !!
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#237
Mon Apr 14, 2014, 08:21 PM
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Your results sound fantastic! Great news, Whiz.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#238
Tue Apr 15, 2014, 07:26 PM
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Very encouraging to hear how both DanL and Whizbang are doing after transplant! It is such a great thing to see how quickly those blood counts can rise with the gift of new bone marrow. Congratulations to you both!
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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#239
Fri May 2, 2014, 09:05 PM
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D+183 (6 Months!!!)
Had my eighteenth (or so) outpatient visit to the hospital for eval and BMA/BMB...
WBC's were at 4.8 (4-11 K/mcL is Normal Range).... ANC was 3.6K/mcL (Normal Range is 1.5-8.8 K/mcL)... HGB at 12.9 (13-17 g/dl) and PLT's down a bit to 124 (160-400 K/mcL)... Red Blood Cell (RBC) Count was 4.3 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was good at 1.0, Potassium 4.2 and sodium at 142... ALT-Alanine aminotransferase is 33 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Feeling pretty good, walking between 2.0 and 3.0 miles, 4 - 5 days per week, doing 100 push-ups (5 sets x 20), muscle mass and appetite are both back.... My Lymphocyte count was down slightly to 10.9% (Normal Range is 12-48%) Doctor is impressed with my progress, everything is on track,,, God Bless, and best to all...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#240
Sat May 3, 2014, 12:00 AM
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Isn't it amazing how significant numbers have become. I like hearing your positive results. There is a lot of hard work and good attitude represented in those numbers. Keep it up!!
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017. Last edited by bailie : Sat May 3, 2014 at 12:13 AM.
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#241
Wed May 7, 2014, 01:11 AM
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Awesome news!!! Feels so good to be at 6 months right?! W normal counts
 God is good! Looking forward to more positive news!
__________________
Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#242
Wed May 21, 2014, 08:21 PM
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D+197 (5/16/2014)
Had my nineteenth (or so) outpatient visit to the hospital for eval and prelim BMA/BMB results...
My prelim BMB results came back from my 6 month BMB, and I was still 100% Donor, no chimerism, 1% blasts, and no CD34+ expression... This along with my Myleoblative SCT, and total body irradiation (pre-SCT), leaves me with little to benefit from maintenance chemo... We decided that since things are going so well, no Azacitidine maintenance treatment would be used, and unless things change, I shouldn't need it... WBC's were at 5.4 (4-11 K/mcL is Normal Range).... ANC was 3.3K/mcL (Normal Range is 1.5-8.8 K/mcL)... HGB at 12.1 (13-17 g/dl) and PLT's down a bit to 123 (160-400 K/mcL)... Red Blood Cell (RBC) Count was 3.98 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was good at 1.0, Potassium 4.0 and sodium at 143... ALT-Alanine aminotransferase is 27 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Feeling pretty good, walking between 2.0 and 3.0 miles, 4 - 5 days per week, doing 100 push-ups (5 sets x 20), muscle mass and appetite are both back.... My Lymphocyte count was up to 23.7% (Normal Range is 12-48%) Doctor is happy with my progress, and everything is on track... God Bless, and best to all...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#243
Wed May 21, 2014, 10:11 PM
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Congratulations!! Keep it going. I have wondered if a non-affected person has zero blasts, or are blasts (under 5 percent) part of a normal/healthy life?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#244
Thu May 22, 2014, 01:51 AM
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Dave,
It is always great to hear that you are doing well....almost to day 200. I know that is not considered a big mark by most measures, but I seem to be at the point of counting every day and every 30 days as great progress. Its been good to have an excellent role model. Congratulations on the continued great progress.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#245
Thu May 22, 2014, 11:46 AM
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bailie,
I'm pretty sure that 1-2% blasts are normal given everything else is normal... Blasts (I believe) are just immature blood cells, and at any one point you will have some... It's when too many immature cells do not progress and stay as blasts that there is a problem... DanL, Thanks for the words, but remember to stay vigilante, we need to get far past our transplants and stay as healthy as possible... No time to let our guards down... Best to all and may God Bless!!!
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#246
Sun May 25, 2014, 02:52 AM
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My specialist agrees that 1-2% blasts is perfectly normal for the reasons you have given.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#247
Fri Jul 4, 2014, 12:34 PM
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D+225 (6/13/2014) - Chapter 3
6/13/2014 - went for 20th post transplant checkup HGB dropped to 9.1 (13-17 g/dl)
6/20/2013 - HGB dropped to 8.8, Diagnosed Auto immune disorder attacking my RBC's, and started IVIG for 4 days straight. 6/23/2014 - HGB dropped to 7.2, received 4th dose IVIG, and a Blood transfusion. Was blood typed B- (my old blood type, and questioned it) Screener said: You're indeed AB+ type, but that I was testing positive for an 'Anti-A' blood type antigen 6/24/2014 - woke up feeling terrible, rushed to urgent care at MSK, had a 20 minute 'spinal and pelvic' migraine attack massive pain 9/10 pain. Get to Hospital HGB had dropped to 6.4 even after prior day transfusion. received 2 units B-, HGB up to 8.1 admitted for observation. 6/25/2014 - More observation, HGB at 7.9 and BMB/BMA, this caused another 20 minute attack and a bad result for the BMA as dr. was distracted by my writhing. 6/26/2014 - HGB at 7.8 released from urgent care and went home, no attack today!!! 6/27/2014 - HGB up by itself to 8.0, outpatient for follow up and re-do of BMB/BMA, dr. got a good sample, and my pain attack happened again afterwards, sent home. 6/28/2014 - Another 20 minute attack, as before completely gone after done. 6/29/2014 - Another 20 minute attack, as before completely gone after done. 6/30/2014 - Another 12:30pm dr. appointment, woke up 5:00am to another 20 minute attack, 9:00am another 20 minute attack, 9:30am another attack. In the car to appointment, and at 10:30 another 20 minute attack, 11:00 another attack, get to dr. appointment, HGB at 6.1, two units of B-, and two more attacks (plus Ativan and two intravenous morphine shots) admitted into Hospital. 7/1/2014 - HGB at 7.6, no new attacks, first 'poor' BMB/BMA came back 6% blasts, but perfect flow cytometry??!! showing sample wasn't taken well. Had chest x-ray, and spinal and pelvic MRI. 7/2/2014 - HGB at 8.0 (no transfusion), no new attacks, second 'better' BMB/BMA came back 4% blasts, waiting for bone sample analysis, told from prelim analysis appears that I have Erythroid RBC Leukemia (not pure). 7/3/2014 - HGB at 8.6, platelets at 37, given platelets and another RBC to get me through the weekend, and I was released for the weekend. 7/4/2014 - so here I am faced with another go around the chemo / BMT rollercoaster, amazed at how fast things can change with these diseases. I still consider my self one of the luckiest people on earth, knowing that I have the opportunity to be surrounded by friends and family... I have the opportunity to have a second and now a third chance at a longer life... All the best to all of you in your fights, May God Bless!!! David
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
Last edited by Whizbang : Fri Jul 4, 2014 at 12:36 PM. Reason: edit
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#248
Fri Jul 4, 2014, 04:50 PM
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I'm sorry for the problems David. It is good that you are strong in so many ways. I am wondering if they found the source of the pain? I didn't realize the low blood counts would cause that kind of discomfort. It sounds like my kidney stone attacks when they first found my MDS.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#249
Fri Jul 4, 2014, 04:57 PM
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IVIg - (Intravenous immunoglobulin G)
It was a rare side effect of the IVIG, if you google IVIg and 'spinal migraine' you'll get something like this:
http://www.dailystrength.org/c/Commo...aches-and-back That, my extremely low HGB, and 'new' diagnosis formed a perfect storm in my bone marrow... RBC Leukemia attacks the bone marrow by forming 'sheets' of unusable area, and the transformation may also be a factor... All the best, David
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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#250
Sat Jul 5, 2014, 01:47 PM
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Dave,
I am sorry to hear of the new diagnosis, but know that you are strong enough to get through now that there is a name and face to what you are fighting. Always wishing you the best.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Sounds great!
