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  #1  
Old Fri Sep 9, 2016, 06:46 PM
PaulS PaulS is offline
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If at first you don't succeed...

Hi all - It's official - I'm scheduled to go into the hospital for a second transplant on 9/22, Just over a year from the first.

They'll be using different drugs for my conditioning - and my brother is healthy enough to be the donor this time. We also plan to use Vidaza as a maintenance drug post transplant - maybe with Veneteclex. We couldn't do any maintenance last time because my counts took so long to rise. Last time we weren't able to get as many stem cells as would have been optimal - which likely contributed to the long time it took to engraft and to build up my blood counts. Also hoping I'll have less problem with GVHD since its my brother compared with a MUD female.

So - still positive - still faithful and still appreciate all the support I've received from this board. With God's grace I'll be skiing again in March.

So, here we go again...
Best to all.
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #2  
Old Fri Sep 9, 2016, 07:03 PM
DanL DanL is offline
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Paul,

Great news that your brother can be your donor this time around. Hopefully that will lead to less GVHD and a successful transplant.

I wish you best of health and luck this time around.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #3  
Old Fri Sep 9, 2016, 07:55 PM
Data Data is offline
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Smile Best of Luck

Paul,
Wishing you the best of luck! Hope all goes well!

David
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #4  
Old Fri Sep 9, 2016, 10:01 PM
bailie bailie is offline
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Paul, we are with you on this. There are many good reasons why this time around it should be better. All of us will help any way we can. You are an expert now so that should help. Your awareness of the different situations will really help. Remember when we all went through this the first time it was difficult understanding what was happening even though there was a lot of good advice for us. I can't offer any advice because I know that you know your situation better than any of us. We wish you the 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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  #5  
Old Fri Sep 9, 2016, 11:52 PM
VAK VAK is offline
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Paul,
I pray before Allah for your fully successful second transplant.
I am not able to advice you something but always with you with prayers.
Expecting your healthy and very very happy return on this platform.
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  #6  
Old Sat Sep 10, 2016, 09:34 AM
PaulS PaulS is offline
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Thanks all for you good thoughts and prayers - Prayers to Allah from India - that's amazing!

Data - good to hear from you - how are you doing? What day post transplant are you? Hope you're feeling better.

I'm hoping to engraft more easily and quicker this time - and avoid any mistakes I might have made along the way - I'll keep you posted.

Best wishes to all.
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #7  
Old Sat Sep 10, 2016, 12:04 PM
bailie bailie is offline
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Paul, I can't remember if you said, but what other indications beside the lower chimerism? Did you have genetic mutations that appeared similarly to those prior to your first transplant? As you might remember, when I relapsed my genetic mutations came back completely different than the mutations prior to transplant.
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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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  #8  
Old Sat Sep 10, 2016, 12:19 PM
PaulS PaulS is offline
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The chimerism went from 100% donor to around 50% - dysplastic cells and blasts 4% also showed up. My disease was also associated with painful hive like skin nodules (Sweets Syndrome?) - they went away after the transplant, but came back with a vengeance. My blood counts also started dropping fast (last Hgb was 5.2, platelets 10 - WBC equally alarming, but the chemo probably had something to do with how low those counts were). They did not find any genetic abnormalities. I have another BMB coming up and it will be interesting to see if there has been any changes. The skin nodules are much improved - maybe from the AZA and Veneteclex - but not so much to think another transplant can be avoided. There is still a slight hope the drugs will have worked better than we think - but the chance of avoiding another transplant is pretty low - but not zero.

It all started with chimerism dropping to 85% and .09% blasts showing up - at that point we hoped it was just an anomaly - next BMB and CBC unfortunately was much worse.

Your relapse seems really unusual - its great you're doing so well. I found AZA fairly difficult - a lot of pain and fatigue. Fatigure might have been from low HgB - but the pain was around the injection sites and other muscles and joints.

Stay well!

p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #9  
Old Sat Sep 10, 2016, 03:00 PM
bailie bailie is offline
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My relapse started with that same 85% chimerism, 33 percent blasts and AML. That really got my (and my doctor's) attention. That is where my situation turned "weird" (doctor's word). The Vidaza along with the dasatinib seemed to have worked well. We just never know how long it will last and the doctors have no better idea than we do. I did have an indication of the "skin nodules" but they went away almost immediately. I still get tired in the evenings and usually get to bed around 8:00.

I really hope that you will get early engraftment and then "clear sailing".
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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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  #10  
Old Sat Sep 10, 2016, 11:02 PM
robem175 robem175 is offline
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Paul,
I have been a steady stalker on this site for about four years. I am a caregiver to my husband Jimmy who is now 14 months post his 3rd BMT and doing really well. I'll give you a quick background in 1982 he was diagnosed with Hodgkin's disease was treated then relapsed treated again relapsed again and then in 1988 had his first auto BMT. Over the next 25 years lived a very healthy life we went on to get married and naturally have three beautiful children. In August 2012 at a regular yearly check up The doctor said Jimmy's blood counts dropped and scheduled a bone marrow biopsy. He was then diagnosed with MDS which quickly transformed to AML in July 2013 Jimmy had an allo T cell depleted MUD BMT. Things went OK after the transplant no GVHD his big biggest issue was C diff but he never reached full chimerism, 100% in the neutrophils and 100% B cells but he's T cells were only 2% donor. Besides from that he was feeling pretty good getting stronger going back to work and even started skiing again. 18 months later again at a regular check up we found out he was relapsing, they went back to her same incredible donor and almost exactly 2 years to the day July 2015 Jimmy had his third BMT this time it was not T cell depleted. I'm not gonna tell you it was easy but it's doable. Jimmy is now starting back to work part time and getting much stronger if there is anything we can help you with any questions or concerns please let me know. I just wanted you to know there are survivors out there of multiple BMTs. Stay strong and you can do this.
By the way Jimmy just celebrated he's 60th birthday yesterday and said now he is greedy and wants many many more.

Margaret
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  #11  
Old Sun Sep 11, 2016, 12:52 AM
PaulS PaulS is offline
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Hi Margaret - thank you for coming out of stalk mode to share your amazing story - Did Jimmy have problems with GVHD with the second (third) transplant? Is he on medications now? Is he skiing again? Is he 100 percent donor now? How did you hold up through all this? Thanks for reaching out.
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #12  
Old Sun Sep 11, 2016, 12:08 PM
robem175 robem175 is offline
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Hi Paul
Yes he is 100% Donor. After the 2013 transplant since it was T cell depleted he had no GVHD and was really not on a lot of medicine, after this last one in 2015 he was taking about 50 pills a day the first couple months that slowly got cut down and by the one year mark he was off almost everything except acylavir and heart meds. He had no GVHD until about 3 weeks ago so he is now back on tacrolimus. So far it is not bad at all, a rash and dry eyes. The Dr's are very on top of him so hopefully it will clear up soon. As for skiing last year he was in no shape he was definitely too weak to even attempt it but this year he's already planning and I think he will be able to go, he exercises and works out everyday and as far as getting through it, there really is no choice we just have to keep moving forward.
Where are you being treated? Jimmy goes to Sloan Kettering.

All the best
Margaret
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  #13  
Old Sun Sep 11, 2016, 01:14 PM
PaulS PaulS is offline
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Hi I tried sending you a private message with some more private questions - not sure if it worked

I'm glad Jimmy is doing well - how have you held up? - any thing I can do to make it easier for my caregiver wife - i think its harder the second time for her - she tries to be strong and I couldn't get through it without her - but she is in a pretty unique situation and I think its difficult for her to find people to really share her experiences, fears and concerns - she mostly tries to put on a strong face to protect me and the kids.

I hope I get to see Jimmy on the slopes! Do you and the kids ski too?

I'm also at MSK.

Thanks again for reaching out.
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #14  
Old Sun Sep 11, 2016, 10:39 PM
robem175 robem175 is offline
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Hi Paul,
I sent you a PM, hopefully it went through and I did it right.

Margaret
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  #15  
Old Sun Sep 11, 2016, 11:25 PM
Cheryl C Cheryl C is offline
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Great news, Paul. I will be praying for success for you.
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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. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #16  
Old Mon Sep 12, 2016, 12:22 AM
PaulS PaulS is offline
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Hi. Margaret, I didn't get your pm
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #17  
Old Mon Sep 12, 2016, 01:03 AM
KatailS KatailS is offline
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Hi Paul
Will be keeping you in my positive thoughts and prayers.
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  #18  
Old Mon Sep 12, 2016, 09:00 AM
Sally C Sally C is offline
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Hi Paul,
I also want to wish you well. I have read your many posts - you are always so supportive and informative. Your compassion is apparent - always.
God Bless you and keep you on your journey.
Sally
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  #19  
Old Mon Sep 12, 2016, 06:22 PM
GoodDay5150 GoodDay5150 is offline
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Hi Paul. We are all sorry to hear about you needing a 2nd trans, but it does happen. My experience has not been too bad, but I have some chronic GVHD which may require some IV meds. It mostly went away, but sort of came back 4 yrs later. (I just had an appt this morning.) You seem to have a good attitude which is helpful. Good luck and let us know how you are doing.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #20  
Old Mon Sep 12, 2016, 08:52 PM
Grateful1 Grateful1 is offline
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Paul, I also wanted to wish you a very successful second transplant. Thank you for continuing to share your inspiring journey with us all...

Keeping you and your loved ones in my daily prayers.

Grateful1
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  #21  
Old Mon Sep 12, 2016, 10:00 PM
robem175 robem175 is offline
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OK Paul I tried again, hope it worked

Margaret
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  #22  
Old Tue Sep 13, 2016, 08:24 AM
lisa3112 lisa3112 is offline
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Best of luck Paul. Lots of people are supporting you on here
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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  #23  
Old Tue Sep 13, 2016, 11:08 PM
Hopeful Hopeful is offline
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Good luck Paul - We are rooting for you! It snowed in northern CA last night. The slopes will be awaiting your return
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #24  
Old Wed Sep 14, 2016, 12:38 PM
PaulS PaulS is offline
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Thanks everyone for your support and prayers and support - it really means a lot to me and my family. Thanks Hopeful for the snow report - My ski trip is planned to Colorado around March 19th - I'm debating whether to book flights yet in a burst of optimism - or wait a little.

I had hoped to climb Mt. Whitney in California on the first anniversary of my transplant - unfortunately my hiking buddy couldn't make in - and then there was the relapse thing - so maybe I'll get to do in next September instead.

Best wishes to everyone - and thanks again
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #25  
Old Sun Sep 18, 2016, 10:41 PM
bailie bailie is offline
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Just checking in Paul. Are you starting the routine today? Is it Day -4 today? Or, does Day -4 start on September 22nd? Wishing you the best and hoping your experience works well in your favor.
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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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