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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Wed Nov 5, 2014, 11:54 PM
johnwc johnwc is offline
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Join Date: Dec 2013
Location: PORTLAND
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Transplant date 20NOV14

I have been on this forum since January just after I was diagnosed with CMML. Since then I've had 7 rounds of Dacogen that have brought all my blood number to near normal range. BUT< marrow has not responded with an increase of blasts from 3% to 9%.

So, after last increase I decided it was time to proceed with the SCT. I've received much support from BALLIE who on this forum who is my age, non-symptomatic, active and at same hospital, OSHU. Just like me. He is doing as well as expected and I pray to follow his pattern. I am very grateful for his openness and friendship thru the internet and hope we meet someday.

So, i've been very busy preparing. Remodeling a downstairs with a bathroom and have found what I think is a wonderful person who will assist with my 24/7 care taking. Busy getting all my accounts on auto-pay, updating my will, and trying my best to get my "affairs" in order. I got married on Oct 4th to a wonder woman, a psychotherapist, hospice worker, and wonderful lover.

Along with Caringbridge.org and this site I will keep you posted. I start next week with physical exam, and another BMB. I have a 12/12 donor who is 31 male with matching blood type.

I welcome any all messages,

I'm John Cusack in Portland Oregon. No need for an alias at this point.
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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Old Thu Nov 6, 2014, 12:34 AM
bailie bailie is offline
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John, we will be thinking about you as you go through this. This is very doable and your good health will carry you through. I never felt pain of any kind at any time and you shouldn't expect any. Time will pass quickly and you will be home soon. It is an interesting experience. Everyone on the 14th floor will be helping you. You will have a nurse assigned to you for up to three days before a change to a different nurse (for both day nurse and night nurse).

Your remodeling project is of interest. I thought I would be confined to a downstairs bedroom following discharge. To my pleasant surprise the stairs were not the problem that I anticipated. I did put in a couple of suction grab bars in the shower that were very helpful. For the first couple of weeks following discharge they helped.

I wish you the very best.
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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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Old Thu Nov 6, 2014, 01:34 AM
Cheryl C Cheryl C is offline
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Congratulations John on your recent marriage and on finding such a good donor! All the very best as you prepare for transplant. Baillie is certainly a wonderful, positive encourager.
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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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Old Thu Nov 6, 2014, 12:00 PM
sues sues is offline
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Good luck John I look forward to hearing about your progress.
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Old Thu Nov 6, 2014, 12:59 PM
GoodDay5150 GoodDay5150 is offline
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Hi John, I had a STC 3 yrs ago for PNH. Non malignant but similar sort of treatment and conditioning. I was 41 and had a 27 yr old matching donor, and my experience was not too bad. Some GVHD, a lot of meds and dr appts,; 2 in the last 2 weeks or so!! I would do it all over again. If you have a good attituse and support ppl, you should do well. Mario
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  #6  
Old Fri Nov 21, 2014, 02:42 AM
johnwc johnwc is offline
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CMML to AML in 3 months

My Biopsy in August showed blasts at 8%, same as they were in June. So, a few days before admission to OHSU for a SCT they did another biopsy and blasts are now 23%. Docs were shocked. I'm shocked.

So, today I was admitted to do a 7+3 chemo protocol that requires me being in the hospital for 28 days. This is so I can be well enough for the SCT in about 5-6 weeks. Really not good news but I'm rolling with it and feel at peace with the turn of events. They will retest my marrow in 2 weeks and more chemo is blasts aren't blasted out of there.

Thanks to all for your well wishes and love,

JOHN
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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Old Fri Nov 21, 2014, 02:27 PM
Neil Cuadra Neil Cuadra is online now
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John,

I'm sorry to hear that your blast count has jumped. Let's hope they can get it down in the coming weeks and that the chemo won't be too hard on you.

They probably told your donor that the procedure has been postponed and not yet rescheduled. I'll bet he's worried about you!
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Old Fri Nov 21, 2014, 11:25 PM
Cheryl C Cheryl C is offline
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Thoughts and prayers for you, John. I hope the chemo does the trick with the wretched 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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  #9  
Old Mon Nov 24, 2014, 06:28 PM
johnwc johnwc is offline
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Join Date: Dec 2013
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So far, So Good

Completing my fourth day of the 7+3 chemo treatment with very few side effects, mostly the continuing urge to hiccup. But, most of the challenges with this chemo is in the 6-12 day range and tolerance varies person to person.
I'm holding up well, accepting the circumstances I'm in and the competence of this great staff.
Thanks to all the well wishes. I feel this family we are all connected through.
JOHN
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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  #10  
Old Tue Nov 25, 2014, 09:53 AM
bailie bailie is offline
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John,
Keep the great attitude. Time will pass quickly and you will be ready to move to the next phase. Get some sleep when you can and exercise when you have the opportunity. Thank you for posting.
__________________
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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  #11  
Old Fri Nov 28, 2014, 12:52 AM
johnwc johnwc is offline
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Join Date: Dec 2013
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thanks for the support BAILIE,

DAy 7 is ending and the end of chemo. White count is .7 and will hit .1 in 2 or 3 days before starting the rebuilding process. I feel mostly good. The usual tiredness and it takes a lot of focus to keep the hiccups away. They are my big nemesis. Some boredom and wish they had better cable here for what they bill!!! It's pretty cheesy but i've got my laptop which streams HBO Netflix, Showtime and Starz.

As I mentioned before I'm doing the 28 day 7+3 conditioning protocol and transplant will come when I recover. Still hard to believe I'm really sick, like this is a big, bad joke. But, i guess not.
JOHN
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John, 68, Portland, Or. Dx with CMML on 12/1/2013, 3 days before admission for SCT, blasts went to 23%, AML. Did 7+3 chemo regimen. The chemo worked and blasts are 1% and did BMT on 1/1/15.- 12/2/15, ongoing GVHD in eyes. Lung fungus and Bronchiolitis Obliterans (BO).
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