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#26
Thu Aug 29, 2013, 05:53 PM
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My haem never gave Neupogen to his MDS/leukaemia patients. Even when my neut count was zero...no Neupogen.
He said the same thing, he was suspicious that it would increase the blast count. I've been told lots of times that studies show there is no increased risk but I think a lot of haematologists are very wary anyway. I think as long as you arent septic, it's better to be safe than sorry.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy. FISH reported normal cytogenetics but gene testing showed Xq 8.21 mutation Xq19.36 mutation Xq21.40. mutation 1p36. Mutation 15q11.2 deletion 
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#27
Thu Aug 29, 2013, 06:17 PM
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Quote:
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#28
Mon Sep 2, 2013, 06:06 AM
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Even though I have an ANC around 400-500 My specialist won't give me Neupogen because of the risk of increasing my blasts.
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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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#29
Mon Sep 2, 2013, 07:26 AM
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Neupogen
Good morning all - My ANC for the past 1 1/2 has been at 500 or alittle less and never got the Neupogen - but when had treatment 10 yrs ago at NIH I gave my own injections at home . My oncologist this time was also worried about increasing the blasts. Who really knows - my blasts went nuts on their own. Best wishes to all. Susan
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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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#30
Mon Sep 9, 2013, 03:21 PM
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Started 2nd Round Dacogen today
So I got my labs back from prior to my second round (this morning), and my neutraphils only went from .6 to 1.0, and WBC's 1.8 to 2.2, my dr. said that was good enough to start the second round (already delayed a week)...
My other counts continue to go through the roof (and normalize)... Again, I've been able to continue to walk across town in the morning and after work (10+ miles per week from Penn Station to Grand Central Station), and I've been trying to stay active otherwise... Code:
Component Standard Range 6/14 6/19 7/18 7/30 8/15 8/22 8/29 9/09 RDW-CV 11.6-14.4 % 18.1 18.1 16.1 15.1 13.8 18.5 17.0 14.3 RDW-SD 35.1-43.9 fl 59.1 58.1 51.5 48.1 40.9 55.9 53.5 45.0 HGB 13.7-17.5 g/dl 8.0 9.1 11.0 11.0 9.9 10.6 11.9 13.9 HCT 40-51 % 23.3 26.0 31.7 32.4 27.8 30.3 35.4 41.1 PLT 150-400 K/ul 70 76 95 91 51 60 209 333 RBC 4.63-6.08 M/uL 2.57 2.91 3.56 3.64 3.29 3.45 4.07 4.76 WBC 4.2-9.1 k/ul 2.0 1.9 3.2 3.5 2.6 1.7 1.8 2.2 NEUT% 34-68 % 46 48 53 62 52 31 32 46 NEUT 1.8-9.0 K/uL 1.0 0.9 1.7 2.2 1.4 0.5 0.6 1.0 LACT-DEH 313-618 U/L 693 695 670 598 --- 688 --- 517 BILIRUBIN 0.2-1.3 mg/dL --- 1.8 1.5 1.1 --- 1.8 --- 1.0 I'm extremely blessed to be having such great numbers, hopefully they will make a difference with my upcoming BMT...
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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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#31
Mon Sep 9, 2013, 04:17 PM
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Congrats dude, that's a remarkable response. No wonder you have so much energy. Your HGB is 14, that's normal. The platelets man, those numbers are insane
 . Hopefully your WBC wont get wacked this time , they'll probably go up if things go as they've been going for you. Its the blasts they want to keep down and of course avoiding blood tx's which looks like a resounding success. Keep up the good work!.
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#32
Mon Sep 9, 2013, 05:36 PM
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great numbers
WTG on those numbers! Sounds like things are going good for you - enjoy those days and keep it going!!!!!
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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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#33
Mon Sep 9, 2013, 09:39 PM
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You have to be thrilled with those numbers!!!! Great job.
Doug is now transfusion dependent. He just got more platelets tonight. Those are only lasting a few days now. Blood is good for about a week and a half to two. We go to Loyola Wed. and Thurs. for intensive testing. BMT will probably be the end of Sept. Thanks for all of the prayers and support on this forum!!!
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#34
Thu Sep 19, 2013, 04:22 PM
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Transplant bound
I'm tentatively scheduled for Oct 20th Admittance, and Oct 31st Day 0...
I have to let them know if I'll participate in a study for a mucositis drug and/or a hormone reducer or neither, supposed to help immune system recover faster... I can opt out, and get the one for mucositis, but not get the possible added benefit of the other drug (which lowers hormone levels)... Tough descision, but I'm leaning toward participating, and my Hemo and Nurse Practioner agree, since it will get me better and more closely mointored for symptoms... God Bless and see you everone through...
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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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#35
Sun Sep 22, 2013, 10:27 AM
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Well the Dacogen really appears to be working, basically a mini-remission, transplant Dr. will do one more BMA + Cytogenetics report on October 7th, including body mapping, pulmonary function, EKG, Echo, etc.
Code:
Component Standard Range 6/19 7/18 7/30 8/15 8/22 8/29 9/09 9/16 9/20 RDW-CV 11.6-14.4 % 18.1 16.1 15.1 13.8 18.5 17.0 14.3 RDW-SD 35.1-43.9 fl 58.1 51.5 48.1 40.9 55.9 53.5 45.0 HGB 13.7-17.5 g/dl 9.1 11.0 11.0 9.9 10.6 11.9 13.9 14.4 13.9 HCT 40-51 % 26.0 31.7 32.4 27.8 30.3 35.4 41.1 43.5 40.6 PLT 150-400 K/ul 76 95 91 51 60 209 333 249 176 RBC 4.63-6.08 M/uL 2.91 3.56 3.64 3.29 3.45 4.07 4.76 5.01 4.74 WBC 4.2-9.1 k/ul 1.9 3.2 3.5 2.6 1.7 1.8 2.2 4.0 4.1 NEUT% 34-68 % 48 53 62 52 31 32 46 NEUT 1.8-9.0 K/uL 0.9 1.7 2.2 1.4 0.5 0.6 1.0 2.7 3.0 LACT-DEH 313-618 U/L 695 670 598 --- 688 --- 517 BILIRUBIN 0.2-1.3 mg/dL 1.8 1.5 1.1 --- 1.8 --- 1.0
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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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#36
Mon Sep 23, 2013, 10:27 AM
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Quote:
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#37
Fri Sep 27, 2013, 02:20 PM
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Well I've been randomized as a control in the hospitals study, so I guess the study isn't double blind like I thought, I will still have a T-cell depleted SCT/BMT, but no Mucositis drug, nor a hormone reducer...
It's fine by me, as I will still get extra attention / documentation as a control for the study. Unfortunately (for the study) I will skew the results with my record setting recovery!  (or so I hope...)Scheduled for battery of tests on October 7th... My brother was cleared as the donor, although he was carrying Pneumonia, so they put him on 5 day course of antibiotics... All the best to everyone here...
__________________
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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#39
Sat Sep 28, 2013, 11:17 AM
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Quote:
Good Luck!!
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#40
Tue Oct 8, 2013, 01:21 PM
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Cleared for Transplant
So I finished up most of my pre-transplant testing yesterday, along with BMB / BMA (Cytogenetics will take at least a week)...
I've met with many from the transplant team, social worker, case manager, nurses, Pharmasist, etc... Looks like this is gonna happen starting the 21st of October... With the exception of my WBC's(which is slightly low) everything looks great, Dr. said, I probably could see 2 years of Dacogen response based upon my initial two rounds of chemo, but why would I risk it? There are no complications right now, and it's time to strike, since the stars are in alignment... Code:
Component Standard Range 7/18 7/30# 8/15 8/22 8/29 9/09# 9/16 9/20 10/7 RDW-CV 11.6-14.4 % 16.1 15.1 13.8 18.5 17.0 14.3 RDW-SD 35.1-43.9 fl 51.5 48.1 40.9 55.9 53.5 45.0 HGB 13.7-17.5 g/dl 11.0 11.0 9.9 10.6 11.9 13.9 14.4 13.9 15.4 HCT 40-51 % 31.7 32.4 27.8 30.3 35.4 41.1 43.5 40.6 45.7 PLT 150-400 K/ul 95 91 51 60 209 333 249 176 209 RBC 4.63-6.08 M/uL 3.56 3.64 3.29 3.45 4.07 4.76 5.01 4.74 5.43 WBC 4.2-9.1 k/ul 3.2 3.5 2.6 1.7 1.8 2.2 4.0 4.1 3.5 NEUT% 34-68 % 53 62 52 31 32 46 NEUT 1.8-9.0 K/uL 1.7 2.2 1.4 0.5 0.6 1.0 2.7 3.0 2.1 LACT-DEH 313-618 U/L 670 598 --- 688 --- 517 --- --- 557* BILIRUBIN 0.2-1.3 mg/dL 1.5 1.1 --- 1.8 --- 1.0 --- 1.0 --- # started Dacogen chemo *estimate based on different testing ranges
__________________
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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#42
Tue Oct 8, 2013, 11:25 PM
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Deb that's awesome right behind y'all this Thursday
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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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#43
Wed Oct 9, 2013, 06:34 AM
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Deb Heather Dave
Way to go all of you!!!! Very happy everyone is getting started and getting good news. I wish you all the very very best!!! PS hopefully I will be coming too!
__________________
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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#44
Sat Oct 12, 2013, 06:27 AM
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Best wishes for a successful transplant and engraftment to all of you doing that, and may there be no GVHD!!
__________________
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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#45
Tue Oct 22, 2013, 10:58 AM
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Admitted yesterday
So I was admitted 10/21 as planned. I had my hickman catheter placed in the OR, wasn't even put out... Could barely feel them do it, until the local wore off. Biggest issue was fasting from midnight to 4pm when they did the procedure.
Didn't get much sleep, as the nurses were in and out and iv alarms were going off. Went down for first radiation treatment at 7:45 before breakfast, not a good idea after fasting the day before. Finally went in, they were just taking an X-ray to insure proper placement of the lung guards, they told me to relax while they check the films... I took the tech too seriously, and passed out... Probably a combination of being tired, and low blood sugar. I woke up in the wheel chair with cold rags on my (now) shaved head. Felt better and finished the radiation treatment. Ate breakfast, and I'm waiting for my second of three for today. Lesson learned, eat before treatments... Best regards...
__________________
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 Oct 22, 2013 at 11:02 AM. Reason: Spelling
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#46
Tue Oct 22, 2013, 03:49 PM
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Dave
Thank you for the update - I know you feel crumby right now - but hold on - do what they tell ya - take meds as offered and praying for ya. I had my baseline bone marrow biopsy today and apt on the Nov 4th for the plan. I am depending on all of you for the good results.
__________________
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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#47
Tue Oct 22, 2013, 04:07 PM
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Dave,
Good to hear that you are progressing. Not put out for the catheter!!! What a man Get used to that waking up thing and the alarms going off. Doug said that was REALLY hard to get used to. But, I wanted to tell you some good news to look forward to on your journey. Doug was released from the hospital on Sunday--4 days before the best expected date. He is doing really well. There are, of course, a few issues. But all in all things are good. He went back to the hospital today for his first post transplant visit as an outpatient. His numbers are good. His platelets were over 200!!! We have not seen that number at all. He is feeling better and better every day. His appetite is coming back and he is walking over an hour every day. I think that alone has made a HUGE difference. So haul yourself out of bed whenever you can. He has not been taking in enough liquids. His loving nurse tried to point that out to him on several occasions. Today he needed an hour and a half of fluids. Nuff said! I think he will be drinking more!Here is to continued success. I know you will do well. Prayers from Doug and me. Deb
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#48
Tue Oct 22, 2013, 07:29 PM
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Dave
I agree drink and walk as much as you can! My husbands nurses and Drs said if you can't eat don't force it but drinking will help you w calories and flush some of the meds through so they don't hang around longer then nessasary! We have a cooler in my husbands room w 12 different types of drinks in it we turned a cabinet in his room into a pantry that looks better then mine ever has! But it's nice to have options when your stomach feels different every day You will do great just listen to all and any advise the medical staff give you and ask questions.
__________________
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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#50
Thu Oct 24, 2013, 10:17 PM
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Hard to kill...
Just finished up 9 out of 11 radiation treatments, and my counts are really holding on... Other than feeling like a 4 day hangover and having zero appetite, things are going ok....
been doing daily laps around the floor (1 mile)... Food is great, if I could only enjoy it... Sweet potato fries, chocolate milk, bananas, cookies, and rice krispies agree with me, not much else... Code:
Component Standard Range 7/30# 8/15 8/22 8/29 9/09# 9/16 9/20 10/7 10/24 RDW-CV 11.6-14.4 % 15.1 13.8 18.5 17.0 14.3 RDW-SD 35.1-43.9 fl 48.1 40.9 55.9 53.5 45.0 HGB 13.7-17.5 g/dl 11.0 9.9 10.6 11.9 13.9 14.4 13.9 15.4 13.7 HCT 40-51 % 32.4 27.8 30.3 35.4 41.1 43.5 40.6 45.7 40.5 PLT 150-400 K/ul 91 51 60 209 333 249 176 209 165 RBC 4.63-6.08 M/uL 3.64 3.29 3.45 4.07 4.76 5.01 4.74 5.43 4.72 WBC 4.2-9.1 k/ul 3.5 2.6 1.7 1.8 2.2 4.0 4.1 3.5 5.6 NEUT% 34-68 % 62 52 31 32 46 NEUT 1.8-9.0 K/uL 2.2 1.4 0.5 0.6 1.0 2.7 3.0 2.1 5.1 LACT-DEH 313-618 U/L 598 --- 688 --- 517 --- --- 557* BILIRUBIN 0.2-1.3 mg/dL 1.1 --- 1.8 --- 1.0 --- 1.0 --- 0.8 # started Dacogen chemo *estimate based on different testing ranges Hospital staff have been glorious, nurses, aides, doctors, techs, etc... God Bless, and prayers for everyone...
__________________
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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