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#26
Mon Oct 4, 2010, 06:15 PM
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That's very good news, Jim. Hope you continue do do well!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com Last edited by mausmish : Sun Oct 17, 2010 at 04:37 PM. Reason: Correct typo 
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#27
Sun Oct 17, 2010, 02:24 PM
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Jim
Great news on your release!
Best regards, Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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#28
Sun Oct 17, 2010, 05:37 PM
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Thanks, my doctor said I "cruised" thru it with little complications. My WBC jumped from .7 to 7.4 over my last 4 days. I had not been above 2.5 for many months. Now at home for recovery
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#29
Tue Oct 19, 2010, 12:04 AM
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Jim
My husband is doing the same, his diet is still very limited, but hopefully that will increase in the next week or so. He had his first follow up visit today after being discharged on Friday, doc says all going according to schedule. They'll recheck him on Thursday and then again the following Tuesday. Neupogen worked well for him after induction therapy and then again this time.
Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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#30
Tue Nov 2, 2010, 01:27 PM
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I am coming along with no major issues so far as of day +33. WBC 4.2, ANC 2.2, Platelets 100, HG 11.8, HT 32.7
Bone Marrow Biopsy scheduled for Nov 12.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#31
Tue Nov 2, 2010, 02:20 PM
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Great news, Jim! Keep it up.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding!  I've run 5 marathons now!! (PB 3:30!)
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#32
Tue Nov 2, 2010, 10:38 PM
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Congrats Jim! I'm very very happy for you!!!! keep it up!
Hugs, Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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#33
Sat Nov 20, 2010, 06:33 PM
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BMB showed that I am "completely" donor cells. Now, doctor did say medically speaking "completely" means 95% or greater, but whatever, things are looking good. Still no major issues, no graft vs host, still waiting for hair to start growing more, just a lot of fuzz/stubble on top but more in back of head. I am at day +51 now
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#34
Sun Nov 21, 2010, 10:53 AM
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That is great that you are doing so good. Have a Happy Thanksgiving - it really is a thankful one for you!! Take care
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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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#35
Sun Nov 21, 2010, 11:30 AM
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Happy Thanksgiving, Jim! Super that you're doing so well!
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#36
Wed Nov 24, 2010, 05:02 PM
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There was an interesting show on PBS Frontline about end of life health care. You can watch the video online, seems like most of the patients and doctors from this story were on the Bone Marrow Transplant Unit.
http://www.pbs.org/wgbh/pages/frontline/facing-death/ Now remember, this show is about very serious end of life health care issues, not a story about Stem Cell Transplants. It just happens all the people involved have had Stem Cell Transplants as treatment to aggressive disease.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#37
Fri Nov 26, 2010, 12:14 AM
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Thank you for the link. It was a rather discouraging piece, all in all, though it raised some very important issues, and the commitment of the doctors involved was evident.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#38
Mon Jan 10, 2011, 12:20 AM
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Just a little update. I am just past day 100 and have not had any complications to speak of - No GVHD, no infections, no post transplant admissions to hospital - and my two Bone Marrow Biopsy's since transplant have been clear.
Plan right now is to return to work on Feb 1, 2011 (I am computer guy, so I also have ability to work from home if fatigue becomes an issue). Question for those who have gone through day 100 to day 365...what kinds of restrictions did you continue to follow?
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#39
Mon Jan 10, 2011, 06:34 AM
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Congratulations, Jim! That's great news!! Let's hope this keeps up, you're the model patient!
Let's see, thinking back to post-100: - I still kept away from public transport at busy times (so no crowded tube trains or buses at rush hour) - If someone in my small office was ill, either they worked from home or I would (I'm in IT, too) - I kept away from small kids as much as possible, and DEFINITELY not if they'd just had vaccines or chicken pox (we had a 3 week quarantine period to observe before we could visit friends whose kids had just had chicken pox!) - I still couldn't eat sushi or raw egg products Hmm, I'm trying to think of what else, but mostly I remember that period as a whirlwind of hospital visits every single day without much else, but slowly returning to the outside world - I remember we celebrated my Day 100 with lunch in a nearby restaurant, and that was the first I'd been in public that wasn't the hospital!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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#40
Mon Jan 10, 2011, 09:49 AM
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That is very good Flamingo Jim.
Returning to work is very important.İ suppose risks are minimum for you at home. We have still infection risks,so you take care yourself at the moment at outside.i waited 12 months for working and i still work parttime. I advise you dont cut your contact with your transplant team.
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#41
Tue Jan 11, 2011, 02:32 PM
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Definitely will be working with my transplant team for quite a while still. Right now I see the doctor twice a month and have labs once a week (still have central line in, hopefully get that out this month).
I have been out and about at restaurants and stores (usually go when it's not busy) and walking around park when weather is ok. How about springtime things like gardening, mowing lawn, and bike riding/hiking? What are your thoughts for things like that? By then, I should be around day +170.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#42
Tue Jan 11, 2011, 04:35 PM
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Congratulations on passing your 100 day milestone, Jim. That's fantastic news, and it's great to hear you're enjoying life.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#43
Tue Jan 11, 2011, 05:02 PM
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Great news!!!! It's good to see you planning for the spring. Regarding the yard work and gardening. I would proceed with caution when working with dirt because of potential molds. Mulch, leaves and dirt can have high levels of mold and I would stay away from that for the first year if you can. You can always wear your mask but breathing gets difficult.
I have also stopped using chemicals on the lawn. If you use them, have someone else apply them.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#44
Fri Jan 14, 2011, 05:23 PM
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I may have jinxed myself a few posts earlier by saying I had no problems. My liver enzymes started rising and looks like I have liver related GVHD. They put me on prednisone. The transplant team is not worried, they say this is a common complication.
Anybody have any thoughts on being on Prednisone (40g Daily)? I know it is a rather powerful steroid and you have to be weened off it once the regimen is done.
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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#45
Sat Jan 15, 2011, 05:34 AM
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Prednol is needed for decreasing the liver enzymes.i use prednol 4 mg also but now 15 months from transpant.i remember high dose prednol using get some side effects like moon face,to get fat at upper body,musle weakness and be care of your diabets.i advice you measure your diabet score.i had some diabet problem when i use 32 mg nearly for three months.
Do not afraid prednol but take extra care.When prednol dosage decrease to 8 mg everything is come back to normal.
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#46
Sat Jan 15, 2011, 05:58 PM
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tapering Prednisone
My taper-off rate was down 5 mg per week when it was down to 50 mg and that was OK for me. But my initial dose of Prednisone was quite a bit higher than yours.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#47
Tue Jan 25, 2011, 06:15 PM
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The latest is they bumped my Prednisone up to 120mg/day. I have been on that higher dosage for about a week and my ALT (>1300) and AST (>245) liver enzymes are still high but Billirubin is very low (.5). I have not had any side effects to Prednisone other than a very slight dry mouth.
Doctor is now putting me on 2000mg/day Mycophenolate (CellCept) in addition to Prednisone. Has anybody gone through that similar combination? As I mentioned earlier, other than these liver test I feel great. The high liver counts don't seem to be bothering me 
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/ Last edited by Flamingo Jim : Tue Jan 25, 2011 at 10:26 PM.
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#48
Thu Feb 3, 2011, 09:51 PM
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My husband's transplant was exactly one year prior to yours. He experienced elevated liver enzymes also. They did a liver biopsy because they suspected his was due to elevated iron. He had had over 140 units of packed red blood cells prior to transplant for his MDS symptoms. This turned out to be the case so they began phlebotomy once a month. His HGB was over 16 so they went for it. They said that they don't usually do phlebotomy on a transplant patient until one year out, but his counts were good and they really wanted to get the enzymes down. His enzyme levels are normal now, but he is still doing phlebotomy to bring his ferritin levels down further. They never ordered steroids for him.
You asked about what you should or should not do. I guess it is common sense; what you feel you can do, and if in doubt, ask your doctor or transplant team. I don't know how your center is set up, but our doctor is an email away with almost immediate responses. I believe the sooner you can return to normal life the better your revovery. Mike attended Christmas Eve service at our church and in January of 10 began attending Sunday services again. He was just careful about shaking hands, etc. We always carry hand sanitizer. I am sure that it is the same with most transplant patients....Mike says he has a feeling of well being now. It has all been worth it. All the best to you and we are here if you have anymore questions! Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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#49
Fri Feb 4, 2011, 08:12 AM
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Jim, I am Day +24! Hard to believe!
I had some kidney issues that is being dealt with well with my fluid intake. Yesterday my labs showed some fluxuation with my liver, however he is not concerned at the moment. The staff mentioned prednisone to a lady who has liver issues. Probably pretty common treatment. Hey, maybe it will help fertilize your scalp? lol I don't think I lost hardly any hair this time. Hang in there and keep us informed. Blessings to you. Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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#50
Sat Feb 5, 2011, 06:39 PM
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So far, I am doing pretty good on the liver problems. My ALT is now below 900, another lab next week. I post the lab results online at my blog:
http://jimschmitz.wordpress.com/about/ Hope things keep improving, Lori. I am following you on the carebridge site also
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Jim, MDS RAEB-1 with rare t(6;9)(q23;q34) translocation resulting in DEK-NUP214; dx August 2010 at age 45; SCT Sept 30, 2010 with male sibling match. Follow Progress at http://jimschmitz.wordpress.com/
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