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MDS Myelodysplastic syndromes

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  #1  
Old Tue Oct 14, 2014, 02:47 PM
rar rar is offline
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Day +115. All is not so well

No news is good news. Too bad that is not the present situation.

At the end of Sept. my chronic Diarrhea got worse and I ran a fever. I went to the ER. Triage took one look and was in a bed in less than 5 minutes. A bunch of tests found c.diff. Everyone entering my room had to wear a hazmat suit. Standard antibiotic for c.diff did nothing for the symptoms. I was put on a high power (and high price) antibiotic designed for c.diff. $1361, but $8 from the VA. Symptoms unchanged. New test for c.diff showed not present, or cured. Nobody had told my intestines. We had been getting ready to go home. While in the hospital our apartment evicted us in favor of a more needy patient. In-spite of feeling really crummy with BM 10 times a day I was declared cured and should go home. We didn't feel up to moving twice so we went back home-home. 3 days later I was in the local ER. This time it took 10 minutes to admit me. A bunch of negative test results lead them to try a colonoscopy and a endoscopy. Colon beat up due to overuse. Try MoviPrep with severe intestine cramps. They found a bunch of things but nothing to explain symptoms. A number of skin problems that I had been pointing out and ignored suddenly became GVHD after a week and a half in the hospital. They say prednosone will cure my symptoms and I will be sent home in two days. CBC numbers bouncing from critical low to normal. Engraphment: Sept 15th CD3: 70% donor, CD33: >95% donor, CD56: >95% donor. 95+ on two lines is very good. 75% is considered as minimum so 70% is mixed news.

Ray
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  #2  
Old Tue Oct 14, 2014, 05:45 PM
Cheryl C Cheryl C is offline
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Very sorry to read what a hard time you've been having, Ray. I wish you a speedy recovery. Praying for you and all our Marrowforums transplant friends.
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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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  #3  
Old Tue Oct 14, 2014, 06:41 PM
bailie bailie is offline
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Ray, I'm sorry to hear of your setbacks. Thank you for the information, it is so important for us who are days behind you.
I wish you the best in the coming days.
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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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  #4  
Old Tue Oct 14, 2014, 07:27 PM
Whizbang Whizbang is offline
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Ray,

Will be praying for a quick and thorough recovery for you....

All the Best, and May God Bless...
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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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  #5  
Old Tue Oct 14, 2014, 11:41 PM
DanL DanL is offline
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Ray,

Sorry to hear about the current challenges you are facing. Prednisone has a lot of side effects, but is pretty good at knocking down GVHD in most cases. Your doctors might also look at Budesonide (Entocort) for the gut issues, this worked within a couple of days for me when I started taking it. The doctors may favor prednisone if you have GVHD in multiple locations as Entocort is more targeted to the gut.

As with Dave, Bailie, and Cheryl, I am sending my best wishes for your recovery.
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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. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #6  
Old Thu Oct 16, 2014, 08:35 PM
amyangel amyangel is offline
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RAR

Hi RAR ,
Just want you to know that I have been thinking about you and praying for you everyday .
Sorry to hear about the few bumps in the road look to God and take hold of his hand and he will see you through .

Stay Strong my new friend... You have so many people praying and rooting you on !!!
Make them listen to you Rar ... keeping telling until they listen .... I asked that to about Amys rash or so called hives But I tell them everyday ... with Amy she is always so outside the BOX with everything when it comes to health .

one day I took her in and she had the hives on one finger lol Dr. just rubbed there heads never seen anything like it before lol the next day it was a different finger and than a knuckle .they just scratched there heads and said lets just watch it ...lol and poof it just went away . Hang in there my friend... Remember were right behind you!!
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Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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  #7  
Old Fri Oct 17, 2014, 12:06 AM
johnwc johnwc is offline
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RAR
Hang in there. There are so many of us in that boat, or coming up to that boat so, for me, it is very help to be armed with more info.
What disease do you have? Where are you? How old? What's the quality of your donor?
We are all swimming in the world of uncertainty and impermanence.
John in Portland, Or
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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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  #8  
Old Fri Oct 17, 2014, 05:07 PM
rar rar is offline
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I had MDS RAEB II. I a SCT 10/10 from my sister at age 73. I have been in hospital for 3 weeks with stomach cramps and extreme diarhia. I have been cured from c.diff. Treatment for GVHD and CMV.
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  #9  
Old Fri Oct 17, 2014, 06:05 PM
sbk007 sbk007 is offline
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johnwc

johnwc,
I find the "search by user name" very useful when trying to put together the pieces of a given individual. Its at the top of the page when you log in. At the top of the page there's a Search widget and from there you can search by username. Just by the nature of these forums its easy to create many threads. Then it becomes cumbersome trying to put together the pieces.
On another note different disease types have different outcomes (statistically). While the transplant process might be similar they're not all the same. Hope that helps and best of heath to you.

Ray is trooper, a distinguished engineer, and as such provides great detail and a wealth of info. I wish you a speedy recovery as you battle this bump in the road.
All the best,
Steve
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  #10  
Old Sat Oct 18, 2014, 02:12 PM
Birgitta-A Birgitta-A is offline
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SCT

Hi rar!
Hope you will manage the CMV and the GVHD diarrhea too!
Kind regards
Birgitta-A
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  #11  
Old Sat Oct 25, 2014, 07:34 AM
kyis kyis is offline
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Wow Ray,
What a battle. Stomach issues are brutal and C-diff can just be off the charts. My aunt had it and I was scared to death that I had been with her in hospital. It is very contagious and certain strains are anti biotic resistant. I'm so glad your doing better. Your an inspiration
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #12  
Old Thu Nov 6, 2014, 11:30 PM
amyangel amyangel is offline
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Posts: 64
Hi Ray ,
Hows that big bump in the road going ? Prayers for you my new friend .
Being in the Hospital is not fun ... keep your head high God is on your side !
__________________
Mother of a daughter 27 with MDS . Cognitively delayed at birth 1987 , seizures 5 days old . pancytopenia 2006, AIHA 2013, EVANS 2013 , CVID 2013, ALPS 2014. MDS 2014
8/18/2014
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6
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