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#177
Sun Dec 8, 2013, 08:07 PM
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It is so good to hear positive results for you. The encouragement helps to step forward in a positive way. Yes you are much younger than my husband, but seeing that you had been in full remission (as my husband is) seems to be a much better place to start BMT. He has no siblings, but they are going to move forward for a match next week.
thank you for the information and Blessings to you for continued good results. Kathy 
__________________
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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#178
Mon Dec 9, 2013, 04:25 PM
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D+39 More Red Blood Cells
Had my eighth outpatient visit to the hospital for eval...
WBC's were at 7.4 this morning (4.2-9.1 k/uL is Normal Range).... ANC were 5.9 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up slightly to 10.2 and PLT's down slightly to 122... Red Blood Cell (RBC) Count was 3.47 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.3, Potassium 4.2 and sodium at 143... Feeling good, a little more energy, now that my HGB is over 10... Thank you all for your continued support, things are definitely headed in the right direction...
__________________
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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#179
Tue Dec 10, 2013, 02:20 PM
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Dave,
It sounds like you are really doing well! Keep up the great work! Doug had his biweekly doctor visit today. We were disappointed that he loses 5 pounds at every visit!!! He is down over 30 pounds. But he is eating a whole lot better and drinking as well. The doctor said today that he can tell that he is drinking and eating better because of the blood results. It absolutely amazes me what can be told with the blood tests. Anyway, we kept a food diary for a week and they all seem to think the eating is fine. They expect him to level off with the weight reduction soon. I hope so. His numbers were really good today. His platelets back up over 100 after being in the 50s for awhile. His hg was 16. That was huge! He also has been having a lot more energy and has not had to have fluids for weeks. So we keep staying the course. He is improving a lot but he doesn't feel like he is. When I look at the fact that we are at Day +63, it really puts things in perspective. Deb
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#181
Fri Dec 13, 2013, 01:34 PM
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D+43 - 100% engrafted!!! (as of 12/2/2013)
Had my ninth outpatient visit to the hospital for eval...
WBC's were at 7.6 this morning (4.2-9.1 k/uL is Normal Range).... ANC were 5.9 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up slightly to 10.5 and PLT's down slightly to 117... Red Blood Cell (RBC) Count was 3.56 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.2, Potassium 4.2 and sodium at 143... Received back my preliminary BMB / BMA, and results show 100% engraftment, blasts at a normal 3%... No other abnormalities... Anti-body testing was done as a baseline to compare to day 100, and Doctor was shocked to see all numbers instead of all zeros... Said I could start doing 'some' push-ups in addition to the treadmill, she warned me (again) to stay away from anyone who has had a the flu mist, MMR shot, Live vaccines, also anyone who's had the shingles vaccine... For at least 4 weeks after they've recieved them... Other than the above, I've gained 5 lbs. back in the 4 weeks since being inpatient, and 99% of my mucositis is gone; just my taste is still a bit off, and the slight leathery feeling in my mouth are left... Doing very well according to my Doctor, thanks again for all the support, Blessings coming your way... (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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#182
Fri Dec 13, 2013, 03:07 PM
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Dave,
That all sounds good! Especially the gaining weight part! Doug had his biweekly visit today. He only lost one pound so that is good. He had been losing 5 pounds on each visit! He does still have a mild case of GVHD of the skin so the doctor is putting him on another round of steroids. The good news is that it is a mild case and that it is nothing he has to be hospitalized for. The other good news is that they ran a second test and found out that he still has 98% donor cells--which are now his. They ran that test at 30 days and again at 60 days. The doctor thinks that with this bit more powerful round of steroids that it will clear up the rash completely and that he will stop losing weight. I certainly hope so! SBK, I hope you are right. I would love to see Dave and Doug arm wrestle Deb
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#184
Sat Dec 14, 2013, 12:28 PM
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My doctor said that she ok'd some exercise, and the guy was about 60 days out and started training for the olympics up in the mountains where the air is 'nice and thin'...
She didn't ask specifics, and later found out the details... Now she asks exactly what do you mean by 'some push-ups'...  I'll leave the chainsaw juggling to the TV commercials...
__________________
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 Dec 14, 2013 at 12:30 PM. Reason: edit
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#185
Sat Dec 14, 2013, 01:30 PM
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Deb I'm happy Doug is doing so well! 98% donor Yaaaay! Is that both granulocytes and mononuclear cells? My husband was 92% donor in the mononuclear and 100% in the granulocytes. That was on 11/11/13. So hopefully now are 100%! But if they stay where they are Dr said that's ok too.
Dave have you done this test? You are doing amazing! My husbands HGB is now 12.8 so he's getting restless but thankful to see a double digit! First time since originally DXed! Continued prayers to y'all!
__________________
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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#186
Sat Dec 14, 2013, 06:06 PM
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I went to a BMT talk some years ago and a transplant specialist spoke first, then some of his patients.
One patient was a young man from the Outback who fell I'll while at boarding school aged 16. After tests he was found to have AML. He had an identical twin brother whom they did not want to use as a donor because the wanted some GVHD to keep the leukaemia away. Anyway, he had chemo was in remission and recovering prior to consolidation chemo and transplant. He was given permission by the doctor to holiday on the Gold Coast to recover his strength in the mean time. He told the story how he covered his PICC line with plastic wrap and went surfing every day. There was a shout from the back of the room and the BMT Doc yelled out...."I didn't know that you little b*****d" (just to clarify, in Australia b*****d can be a term of endearment like calling someone a rascal). The BMT Doc then got a big grin on his face and just leant back against the wall shaking his head in disbelief. It was a very touching moment because in that short exchange you could see, hear and feel the sincerity of the Docs feelings for his patients. That young man was 26 at the time of the lecture and in complete remission after a very successful transplant.
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#187
Fri Dec 20, 2013, 01:16 PM
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D+50 (halfway to 100)
Had my tenth outpatient visit to the hospital for eval...
WBC's were at 6.0 this morning (4.2-9.1 k/uL is Normal Range).... ANC were 4.5 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up slightly to 11.2 and PLT's down slightly to 107... PepcidAC could be hampering platelets, so Doctor said not to take anymore... Red Blood Cell (RBC) Count was 3.72 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.3, Potassium 4.2 and sodium at 143... ALT-Alanine aminotransferase has been creeping up to 52 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Doctor says we will monitor, as it tends to get higher do to differing medications; she thinks the anti-fungal Noxafil might be triggering it, but still way to low to discontinue... Wishing everyone here a Merry Christmas (Happy Holidays)!!!
__________________
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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#188
Fri Dec 20, 2013, 09:30 PM
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Sounds as though you are getting a pretty nice Christmas present with the results you are having. That is wonderful news and encouraging. Keep up the good news and Merry Christmas to you and your family. God Bless.
__________________
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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#189
Sat Dec 21, 2013, 12:31 PM
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Whizbang,
Since I am new to this adventure ... congratulations. I have just read through the eight pages and I am impressed with your journey and willingness to share. I am just finishing my first round of Vidaza and will probably be following a similar path. I am RAEB-2 but have no chromosome abnormalities. My blast count (10 percent) and low platelets (22) are my biggest problem. I feel symptom free at this time. I wish you continued improvement and success.
__________________
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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#190
Sat Dec 28, 2013, 11:56 AM
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D+57
Had my eleventh outpatient visit to the hospital for eval and Pentamidine Treatment...
WBC's were at 5.8 this morning (4.2-9.1 k/uL is Normal Range).... ANC were 4.4 K/uL today Normal Range is 1.8-9.0 K/uL... HGB's up slightly to 11.7 and PLT's down slightly to 104... Red Blood Cell (RBC) Count was up to 3.81 M/mcL (4.2-5.6 M/mcL is Normal Range) Creatinine was relatively unchanged at 1.3, Potassium 3.8 and sodium at 141... ALT-Alanine aminotransferase down slightly to 50 Units/L (Normal Range is 5-37 Units/L) and determines Liver distress... Doctor says we will monitor ALT, as it tends to get higher do to differing medications; she thinks the anti-fungal Noxafil might be triggering it, but still way too low to discontinue... Appointments now down to every 2 weeks, January 10th, 2014... Checked out of Hope Lodge this Friday, sad to leave, made going to appointments very convenient... Wishing everyone here Happy and Healthier New Year!!!
__________________
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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#192
Sat Dec 28, 2013, 03:32 PM
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Dave,
That is GREAT news that you are going home!!!!! What a great Christmas present and hopeful beginning for the New Year. I'll bet your family is beside themselves! We are at +81 and counting. A few glitches here and there, but all in all things are going well. We can't believe that they are actually talking about plans around the 100th day! Keep up the great work! No backsliding now! Stay the course. Happy and HEALTHY 2014. Deb
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#193
Sat Dec 28, 2013, 06:00 PM
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Deb,
I check Doug's Caring Bridge journal (which you write) almost daily... You can tell the difference in writing... My wife (Donna) says, "see you should write more like that"... I'm an accountant, and unless I am responding to a question or post, I tend to stick to the facts... I think its a venus / mars thing (  )...I've been pretty tired lately also, I think it has to do with the weather, Holidays, and daily exercise (tread mill, and pushups)... Afternoon naps seem to help, but sometimes at the expense of night time sleep... Weather has been nice two Saturdays in a row (69 & 49 degrees), so I've been able to walk our dog ( Alex ) around our development, a welcome distraction... All the Best to Doug, and everyone on here, and a Happy New Year!
__________________
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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#194
Sat Dec 28, 2013, 07:13 PM
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Walk the dog?
Dave, What is Sloans policy regarding dogs? I'm asking because this was a big topic of discussion. Some facilities don't want you near your dog for a year, some say if its O.K., and some say you should stay separated for a few months.. I guess you shield yourself from the suns U.V when you walk him? I'm assuming its a he because of his name
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#195
Sat Dec 28, 2013, 08:08 PM
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Every dr. is different, obviously I'm careful, and had the vet test his poo for 5 or 6 transmitable diseases... No sleeping with the Dog, careful not to get scratched, and no handling dog poo...
As for the sun, since I'm bald now I wear a baseball cap and sunglasses (always have to protect my eyes)... I asked my doctor, and she said none of the medicine I'm on makes me especially sensitive to the sun... She also noted, it's not as bad as in the spring / summer... The extreme cold is the worst, and post BMT, most are completely intolerant of temperature extremes... (I begin to gag if it is affecting 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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#197
Sat Dec 28, 2013, 10:18 PM
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Sbk007 we were told at least 100 days by some of the more strict people on his bmt team the less strict said at least 30 days from release but to "be smart" about it.
We came home around day 60 and have two little dogs. We have been sleeping w them. I think it depends on a lot of things. Do your dogs have long hair that will pick up allergens, dust, bacteria like a duster would? Do they spend a lot of time outside? We also made sure the dogs and their poo had a clean bill of health. Prior and after BMT. We wipe their paws after they go out side. And no mess cleaning. We try to keep the shedding under control daily.(floors,bedding etc) They seem to be a nice companion during the day for my husband. Dave so happy your going home and have been able to see Alex! Happy and HEALTHY 2014, we'll agree to that!!!!
__________________
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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#198
Sun Dec 29, 2013, 01:24 PM
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Dave,
I am glad that you continue to read Caring Bridge. I am sort of a writer. Ever since I retired from teaching, I have written both professionally and personally. I had to pretty much stop writing for other people with this whole deal. I do love to write and it is very therapeutic for me. I did want to do a journal entry just every other day or so. When I posted that, I was inundated with emails from friends and family who begged me to do it daily. It has become part of their nightly routine to check in on Doug's progress and they SO loved my writing  They know how to get to a writer. So I keep writing. It really is very freeing for me. I don't watch punctuation that closely and just let things fly.Tell you wife that I love your charts! I have a very special place in my heart for accountants. My dad was a CPA. He worked until the day he died. He so loved accounting. But, please you and Heather and Ronald--be careful about the dogs!!!!! I love animals also. But I know some of the patients on the BMT floor were told no dogs for a year! It does sound like you are all being smart about it, but please be careful! Happy and healthy 2014 to everyone! I think that we are all off to a good start. Deb
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#199
Sat Jan 4, 2014, 09:33 PM
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D+65 Muscle pains
So on Wednesday the 1st, I did my usual 1.25 miles walking on the treadmill, no issues other than I stripped off all myclothes (except the underwear), my youngest went and got me a pair ofshorts.... At this point it's hard for my body to regulate my temperature, and going outside is pretty much out of the question (zero to low single digits)...
Finished early enough, and so I figured I'd do a few push ups... Two sets of 25 spaced 30 minutes apart... Did them easily, usually I alternate push up days and treadmill days... Doctor had cleared me to do both a few weeks ago... So Thursday I woke up a little sore (triceps, biceps, shoulders, upper back and lats) a little strange I thought, been doing this for a couple of weeks, and didn't overdo it... Friday I woke up and was still sore, again quite weird, but figured it would go away definitely by Saturday... I guess I ate too much for dinner, because I sacrificed about 25% of it to the porcelain throne, but felt fine after that...Still combined got me a little worried... Saturday woke up in still more pain, still only affecting my pushup muscles, but the pain was emanating from my muscles to the lower layer of my skin, like a deep sunburn... Ate breakfast, normal BM, no fever (had been checking it after I puked the night before 99.7 was the high)... Decided to give the on call doctor a ring, explained that I hadn't over done anything, and that the muscle pain was similar to the one time I did catch the flu (10 years ago)... Doctor said absent any other symptoms, and/or fever, that I should just take 400mg of Ibuprofen or 500mg of Tylenol... I have an appointment on Monday, so hopefully everything will resolve itself before then... 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)
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#200
Sun Jan 5, 2014, 06:24 PM
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Ya know at first I thought you were joking but now I think you're just crazy.
The doctor should send you to psychiatrist. You're doing great. Just don't overdo it. Hope your feeling better and all goes well at your appointment. If you're doing all that you must feel good. Hopefully whatever it is you came down with goes away quick and turns out to be nothing. Just take it as a warning.
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Congrats!
