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-   -   Another MDS to BMT - New forum member (http://forums.marrowforums.org/showthread.php?t=3792)

Chirley Thu Aug 29, 2013 05:53 PM
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.

sbk007 Thu Aug 29, 2013 06:17 PM
Quote:
Originally Posted by Chirley (Post 30054)
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.
I agree avoid it like the plague and I can understand Leukemia and overexciting the wbc but never heard of the blast issue till now. Another question to throw at the geniuses that analyse my blood..

Cheryl C Mon Sep 2, 2013 06:06 AM
Even though I have an ANC around 400-500 My specialist won't give me Neupogen because of the risk of increasing my blasts.

susanML Mon Sep 2, 2013 07:26 AM
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

Whizbang Mon Sep 9, 2013 03:21 PM
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...

sbk007 Mon Sep 9, 2013 04:17 PM
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 :cool:. 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!.

Susan L Mon Sep 9, 2013 05:36 PM
great numbers
 
WTG on those numbers! Sounds like things are going good for you - enjoy those days and keep it going!!!!!

DebS Mon Sep 9, 2013 09:39 PM
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!!!

Whizbang Thu Sep 19, 2013 04:22 PM
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...

Whizbang Sun Sep 22, 2013 10:27 AM
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
God Bless.

Neil Cuadra Mon Sep 23, 2013 10:27 AM
Quote:
Originally Posted by Whizbang (Post 30415)
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.
The platelet jump in August alone is amazing! Congratulations on your overall improved counts.

Whizbang Fri Sep 27, 2013 02:20 PM
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...

jayc Fri Sep 27, 2013 11:30 PM
my prayers are with you. your news sounds very promising ,just keep a positive spirit and love in your heart and all will be well. peace to you and you and family.

sbk007 Sat Sep 28, 2013 11:17 AM
Quote:
Originally Posted by Whizbang (Post 30539)
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...
Dave, If you want extra attention I can think of other ways to get it... LOL
Good Luck!!

Whizbang Tue Oct 8, 2013 01:21 PM
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
God Bless, and prayers for everyone...

DebS Tue Oct 8, 2013 04:44 PM
Dave,

Love those numbers! Doug got his stem cells today! Come on in, the water is fine:)

He has had some crummy days, but it is all onward and upward now.

Good luck to you.

Deb

Heather8773 Tue Oct 8, 2013 11:25 PM
Deb that's awesome right behind y'all this Thursday

susanML Wed Oct 9, 2013 06:34 AM
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!

Cheryl C Sat Oct 12, 2013 06:27 AM
Best wishes for a successful transplant and engraftment to all of you doing that, and may there be no GVHD!!

Whizbang Tue Oct 22, 2013 10:58 AM
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...

Susan L Tue Oct 22, 2013 03:49 PM
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. :)

DebS Tue Oct 22, 2013 04:07 PM
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

Heather8773 Tue Oct 22, 2013 07:29 PM
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.

sbk007 Tue Oct 22, 2013 07:45 PM
Dave, How's the entertainment? Is the food any good?
Try not to do that again...Stay well man! You did good!

Whizbang Thu Oct 24, 2013 10:17 PM
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
Hope every one is doing well at the different stages in their process, there is a light at the end of the tunnel, it's just a very long tunnel...

Hospital staff have been glorious, nurses, aides, doctors, techs, etc...

God Bless, and prayers for everyone...


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