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#76
Sat Nov 2, 2013, 01:12 PM
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Dave,
All of that stuff sounds normal. Keep eating and drinking. I know that everyone is probably telling you this, but it is SO important! Otherwise, I give you a huge pat on the back for posting.  Onward, Onward!!!!! Deb 
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#77
Sat Nov 2, 2013, 07:38 PM
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Quote:
. Ya outdid yourself today. I'm impressed. Keep up the good work. Take your time but keep posting!!
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#78
Mon Nov 4, 2013, 02:54 PM
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D+4
Well Last night finally hit 38 degrees C... (100.3)
This caused the National Guard to be called out... Blood tests, urine, etc... They skipped the chest x-ray (to rule out Pneumonia) since lungs sounded clear... Probably Neutropenic fever... WBC counts are still 0 or <.01... PLT's went from 14 to 9 then 1st set of PLT's, two days later at 5, got second set of PLT's, no adverse bleeding at these low levels... Mouth on fire, can only manage 2-3 choc milks per day, now on IV nutrition... Other than the above, generally comfortable... Hanging in strong... 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 : Mon Nov 4, 2013 at 02:55 PM. Reason: edit
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#80
Mon Nov 4, 2013, 05:13 PM
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As for coherence, they've wanted to put me on continuous Morphine, but I'm happy with on-demand button...
Feel I'd rather have control... and not feel drugged all the time...
__________________
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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#81
Mon Nov 4, 2013, 05:28 PM
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I can relate.. You can push the button whenever you want. I think it shuts off if you hit it to many times. I saw that on the sopranos one episode
 You want a nice buzz but just enough so you can enjoy it and not sleep thru it Take it easy.
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#83
Tue Nov 5, 2013, 12:26 PM
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D+5
HGB down to 7.3 from 8.5 the day before...
Dr.s insist we wait for under 7 before transfusion... PLT's 9, will have 3rd set of PLT's... AB+, B+, and now AB+ again... (I'm B-) my donor is AB+... Supposedly no issue for PLT's, haven't had an issue so far... feeling OK, mouth still on fire when swallowing, coughing or drinking... Still holding at 3 (130 calorie) choc milks per day + 1,000 calorie (70g Protien) IV nutrition... Other than the above hanging in strong... 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 : Wed Nov 6, 2013 at 12:59 PM. Reason: HGB not RBC's
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#84
Tue Nov 5, 2013, 02:08 PM
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Dave, Except for the NIH and a few other places, they don't like to give people your age a transfusion unless it goes below 7. Elderly, get transfused at 8. Those are the guidelines for men. There are people on here that don't have BMT w/ Plates that low. Also, your count could very well go up. Glad they got your fever under control. You engrafted already?. You sound great. Try not to cough.... I'm glad your progressing. You'll be out of there in no time. Keep posting. I move to a 5 week vidaza schedule on my end so every 5 weeks now instead of 4.
Take care and keep posting.
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#85
Tue Nov 5, 2013, 04:19 PM
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Dave,
I agree with SBK. They wait until you are under 7. Doug got a lot more platelets than blood after his transplant. I think he had only one blood transfusion and the rest were platelets. Hang in there. It sounds as if you are doing great. You may not think so, but you are! Deb
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#86
Tue Nov 5, 2013, 11:07 PM
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Dave your experience sounds simular to my husbands. He needed blood and plateletts transfused almost every other day after transplant until literally the day he got out. But now his counts are raising on their own the first time ever since being DX. So pls don't worry.
Also he had a fever before engrafting....a couple nights actually. So although it hurts pls keep drinking, try not to worry, and get some rest. You will do great and I know it's easier said but we keep/kept telling eachother "no worries its not forever" that helps us anyway
__________________
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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#87
Wed Nov 6, 2013, 12:58 PM
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D+6
So my PLT's held after my 3rd batch (must have been a good one) and are at 20... Sweet!!!
My Hemoglobin fell overnight to 6.5 (I said RBC's a couple of times in previous posts, but I meant HGB)... Got my 1st RBC's today (B-), and had a 11/16 expiration so should be fresh!!! Had a little bit of a headache, due to low HGB, but that's to be expected.... otherwise par for course, nuepogen on D+7, still no WBC count to speak of, and fever never came back... 37.5 C at last check (38 C / 100.3 F considered a fever here)... Thanks for all the support guys.... 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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#88
Wed Nov 6, 2013, 02:01 PM
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Great news Dave! Sounds like you might be making your own platelets. I hope so. That's a big jump from where you were. Glad the fevers under control. The RBCs should give you a lift and your WBCs will be there soon. Glad your coming along. Progress is good! Keep Posting!
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#89
Thu Nov 7, 2013, 04:13 AM
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Thanks for sharing your journey Whizbang! Your positive posts are an inspiration to us all. Hang in there, mate!
__________________
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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#90
Thu Nov 7, 2013, 05:05 AM
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Dave
Hang in there buddy you can beat this!!! My doctor explained to me Monday that he wouldn't be surpised for me to get a fever which will mean doing all that you are doing - you are in good hands. I got my date yesterday Jan 9th, and I am so excited - I will be going in around Nov 25 due to the fact my blasts are at 24% and he wants to get them down before the transplant. I am wishing you all the best and take care - take the meds they will help you get over this part. PS Believe me I understand about the control over something - sometimes we feel like we are not in control over any of this and being a type A personality its hard. Hang in there. Best to your family also.
__________________
Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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#91
Thu Nov 7, 2013, 12:14 PM
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D+7
PLT's held in at 14, RBC Transfusion took me to HGB 6.9 (from 6.5), so getting second set (B-) expiring 6/12, as we speak...
Creatine came back at 2.6, pretty high, was 0.8 the day before, so they took me off IV nutrition, and I downed a bottle of water... Potasium also was high at 6ish if I recall, again was in normal range the days preceding..... Still no WBC's to speak of, but I will get neupogen today... Otherwise diarrhea and mouth sores are biggest issues... 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 : Sat Nov 9, 2013 at 02:15 PM. Reason: spellng
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#92
Thu Nov 7, 2013, 12:35 PM
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Dave
Hi - Mouthsores is horrible - If I am not on my antiviral meds I get them right away - I use magic mouthwash and have recently found Oragel WASH for Mouth Ulcers. It is almost better than the magic mouthwash -- Hope things get better.
__________________
MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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#93
Thu Nov 7, 2013, 01:43 PM
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Way to go Big Dave!
Quote:
, like a guinea pig.
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#94
Thu Nov 7, 2013, 01:54 PM
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Quote:
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#95
Thu Nov 7, 2013, 03:09 PM
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Kidneys' and bladder ultrasounds all came back good, so hoping to just increase water intake to get numbers back in line...
Drinking water is still quite painful, but if I launch a couple of morphine missiles before, it's bearable... Fever was only for 8 hours at 100.3 F... 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 : Thu Nov 7, 2013 at 03:09 PM. Reason: spelling
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#96
Thu Nov 7, 2013, 06:47 PM
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sbk007
Hi- the magic mouthwash comes by rx from the doctor - but I swear the Oragel Mouth Wash specifically for mouth ulcers is in a white bottle and I found it at Walmart , worked better than anything. I am anxious to get started ---best wishes to you
__________________
Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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#98
Fri Nov 8, 2013, 12:03 PM
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D+8
PLT's held in at 11, RBC Transfusion kept my HGB at 6.9 (from 6.9), so getting third set (B-) expiring 6/19, as we speak...
Creatine came back at 2.4, still high, was 2.6 the day before, so they kept me off IV nutrition, and I downing another bottle of water... Potasium was still high at 5, 6 yesterday but, again was in normal range the days preceding..... Still no WBC's to speak of, but I will get 2nd neupogen injection today... Otherwise diarrhea and mouth sores are still biggest issues... 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 : Sat Nov 9, 2013 at 02:15 PM. Reason: update
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#99
Fri Nov 8, 2013, 12:33 PM
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Dave -
So sorry that you are still having a hard time - I am praying for ya ---
__________________
MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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