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#201
Sun Jan 5, 2014, 09:50 PM
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Muscle / Joint pain
No not crazy... it's definitely something, because here it is Sunday night, and it hasn't gotten any better... possibly a little bit worse.... I'm to the point it takes 10 seconds to lift my arms above my head due to the discomfort / pain...
Not sure if it's Lactic acid buildup that just won't abate, or some sort of infection that settled into my upper body... Ibuprofen did nothing really for the pain... Starting to feel a little joint pain, right wrist and ankle, so not quite sure what it could be... Will find out tomorrow, still no fever, but pain anytime I move my arms... Will pack a bag in case they admit me...
__________________
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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#202
Mon Jan 6, 2014, 07:35 AM
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I hope you are feeling better really soon Whizbang! I am praying for you.
__________________
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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#205
Mon Jan 6, 2014, 06:27 PM
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Dave I hope your visit was good today... Im sure it was one of those hold your breath and we will see over time how things go kind of visits. (which are the ones that make weekly visits feel months apart!!!) I guess wait and see isnt bad news , just makes ya anxious news. Anyway hopefully your visit today was full of good news and your not in wait and see mode.
Hope your pain is easing up! I'll be praying for ya!
__________________
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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#207
Tue Jan 7, 2014, 12:24 AM
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D+67
Had my twelfth outpatient visit to the hospital for eval and Diagnosis of pain... WBC's were at 9.3 this morning (4-11 K/mcL is Normal Range).... ANC were 7.0 K/uL today Normal Range is 1.5-8.8 K/mcL... HGB's up slightly to 13.1 and PLT's up slightly to 136... Red Blood Cell (RBC) Count was up to 4.22 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.3, Potassium 4.8 and sodium at 142... ALT-Alanine aminotransferase down slightly to 39 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... My Doctor gave me a saline IV for the muscle pain, and a battery of blood, urine, nasal swab tests... Mostly evrything came back normal (that I have access to) except for two: Erythrocyte Sedimentation Rate (ESR) 40 mm/hr - [normal 0-15 mm/hr] ( http://labtestsonline.org/understand...s/esr/tab/test ) Creatine phosphokinase (CPK)/Creatine Kinase 31 Units/L - [Normal 38-174 Units/L] ( http://labtestsonline.org/understand...es/ck/tab/test ) Still have plenty of muscle pain, but hopefully will have answers soon... They suspect some sort of virus... Best to all and 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)
Last edited by Whizbang : Tue Jan 7, 2014 at 12:28 AM. Reason: edit
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#208
Tue Jan 7, 2014, 11:26 AM
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Looks great!. HGB is near normal!!. WBC & Plates normal. I'm hoping the muscle pain is weather related. My back and neck these last few days have been killing me. Today much better even with the zero degree temps but its drier. Although your WBC's did go up a bit maybe that's why they're thinking virus? Hang in there you're doing great! Hoping your feeling better.
Steve P.S. I still maintain that you are crazy... Last edited by sbk007 : Tue Jan 7, 2014 at 11:37 AM.
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#209
Tue Jan 7, 2014, 06:57 PM
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So I tested positive for coronavirus:
http://www.cdc.gov/coronavirus/about/index.html Q: Are there treatments? A: There are no specific treatments for illnesses caused by human coronaviruses. Most people with coronavirus illness will recover on their own. However, some things can be done to relieve your symptoms, such as— •taking pain and fever medications (Caution: Aspirin should not be given to children), and •using a room humidifier or taking a hot shower to help ease a sore throat and cough. If you are sick, you should — •drink plenty of liquids, and •stay home and rest. If you are concerned about your symptoms, you should see you healthcare provider.
__________________
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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#210
Tue Jan 7, 2014, 08:39 PM
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So what do you do? wait for it to go away on its own? It says that you should be experiencing coughing, or some respiratory symptoms. I guess you take Tylenol or Ibuprofen and take it easy for awhile. Gloat over your counts and wait for the virus to go away.
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#211
Tue Jan 7, 2014, 09:38 PM
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It's some sort of poetic justice...
Good counts / bad cold... I'm just starting to sneeze, cough up phlemb... I had my second pneumonia treatment on the 27th, so I think that it is aleviating some of those symptoms, but giving me the other 'flu' like symptoms in exchange... Muscle aches, joint pain, sluggishness, really really tired and hypersensitve to noise... Too hard to enjoy my counts right now, as I felt better with an 8.2 hemoglobin... 
__________________
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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#212
Fri Jan 10, 2014, 05:09 PM
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D+71
Had my thirteenth outpatient visit to the hospital for eval and follow up on pain...
WBC's were at 8.1 this morning (4-11 K/mcL is Normal Range).... ANC were 6.5 K/mcL today Normal Range is 1.5-8.8 K/mcL... HGB's down slightly to 12.6 and PLT's up slightly to 157... Red Blood Cell (RBC) Count was 4.19 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.3, Potassium 4.1 and sodium at 141... ALT-Alanine aminotransferase down slightly to 31 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Dr. said the Flu like symptoms could persist for 3-4 weeks, which is common in post transplant patients, but should start slowly getting better on their own... She cautioned me to be extra careful, as it's possible to catch a second virus, and that would make this whole experience even worse...
__________________
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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#214
Sat Jan 11, 2014, 04:42 AM
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Great to hear that you are doing better. Your blood results look fantastic. Please give the push-ups a break until you are completely well!!
__________________
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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#215
Fri Jan 17, 2014, 08:36 PM
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D+78
Had my fourteenth outpatient visit to the hospital for eval and follow up on pain (much better with the oxy)...
WBC's were at 6.2 this morning (4-11 K/mcL is Normal Range).... ANC were 4.7 K/mcL today Normal Range is 1.5-8.8 K/mcL... HGB's down slightly to 12.1 and PLT's down slightly to 136... Red Blood Cell (RBC) Count was 3.88 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.2, Potassium 4.3 and sodium at 141... ALT-Alanine aminotransferase down slightly to 30 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Dr. said the Flu like symptoms could persist another week or so, which is common in post transplant patients. She cautioned me again to be extra careful, as it's possible to catch a second virus, and that would make everything even worse...
__________________
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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#216
Sat Jan 18, 2014, 11:44 AM
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Dave, Sorry you have to use the oxy but if it gives you relief ya gotta use it..
Didn't realize the pain was that bad.. Your numbers continue to look great. Once you get thru this virus you'll be sailing smooth - Feel better.. Hey, its snowing here in Rockland county NY!!! WOOOWEEEE!! 
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#217
Sat Jan 18, 2014, 03:28 PM
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Hang in there Dave. Glad to see that the corona virus didn't knock out your counts. Keep getting healthier and stronger!
__________________
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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#218
Fri Jan 31, 2014, 07:05 PM
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D+92
Had my fifteenth outpatient visit to the hospital for eval and BMB/BMA...
It was done early due to scheduling conflicts, dr. is doing rounds for 2 weeks... WBC's were at 6.2 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's same at 12.1 and PLT's down slightly to 128... Red Blood Cell (RBC) Count was 3.92 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was unchanged at 1.2, Potassium 4.7 and sodium at 142... ALT-Alanine aminotransferase up slightly to 38 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Feeling much better, walking 1-1.5 miles every other day, will be ramping that up quickly, as it has helped with my appetite, maybe start some push-ups again.... Not much more to report, will have immune testing done closer to D+100 (appointment is 2/11) and follow up with the doctor on Feb. 28th... I'm very lucky that things are going so well, and hope to share my fortune through prayer... 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)
Last edited by Whizbang : Fri Jan 31, 2014 at 07:23 PM. Reason: edit
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#219
Fri Jan 31, 2014, 07:29 PM
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I am new to this situation, but already it is so encouraging to hear about your success. Thank you for your progress reports. Keep up the good work. I wish you the best.
__________________
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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#220
Fri Jan 31, 2014, 11:30 PM
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Awsome news Dave!!!!
__________________
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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#221
Sat Feb 1, 2014, 03:18 PM
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Keep the good news coming. Sounds like you are making 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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#222
Sat Feb 8, 2014, 12:18 PM
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D+100
Posted this from my wife's Facebook page to the "Bone Marrow and Stem Cell Transplant Survivors Club" Facebook page:
__________________
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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#223
Sat Feb 8, 2014, 12:49 PM
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What a great day for celebration. Congratulations on your 100 day birthday.
Only good things to come for the future.
__________________
Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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