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MDS Myelodysplastic syndromes

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Old Fri Jul 11, 2014, 06:20 PM
rar rar is online now
Join Date: Mar 2014
Location: colorado
Posts: 212
I survived transplant at day +11.

A brief recap: In Aug 2013 I had a BMB that was pretty much normal with some small anomalies and was told that I would probably never need treatment for it. In Feb 2014 I had a BMB that said I had very high risk MDSRAEB2. I went on a clinical trial that reduced my blast count from 13 to 3 in 2 weeks. After 2 months blasts were 1%, but my CBC numbers were unchanged at very low to very critical. At this point I was told my only hope was a SCT. All 3 of my brothers were mismatches. All three of my sisters were 100% matches. The transplant team choose my 67 YO baby sister to be donor. I am 73.

The point of no return is when the trifusion port is inserted. This is done under semi anesthetic. The tip of the catheter is in a large vessel near my heart. The other end exits below my collarbone. Then I receive three doses of non myeloblative chemo. While I am doing this my donor is injecting filgrastim to increase her stem cells. Both of us are still feeling pretty good. I get a day of rest. Next day my donor does apheresis which separates stem cells. She produces 9 million, I only need 5 million so they give me all of them. I receive total body irradiation and then receive the transplant. The drugs they give me put me to sleep for the whole procedure and I spiked a fever and hallucinated. Normally I would be released from the hospital on day +1. Because of the fever I am released on day+4.

Some common side effects include nausea, lack of appetite, A baby eats and sleeps all the time because it is building the inside of its body. I am like a newborn, I need 150% of my normal caloric intake because I have to rebuild inside and remove the toxic chemicals I have been given. The thought of food makes me sick so I have problems getting enough to eat. I am now on a soft diet and am managing to force down some ice cream. Fortunately this is improving. I am down over 10 pounds at 153.

Extreme fatigue. This is where it is an effort to get out of bed. Muscles are hardly strong enough to move. This lasted only a couple of days.

Tiredness is different. With naps I am sleeping 10 to 14 hours a day. Slightly improving.

I am taking 21 different medications. With multiple doses of some of them I am taking 37 pills a day.

Transplant day known as rebirth day, or birthday 0. So maybe I will get two cakes every year. In addition to my donor's blood type including an XX chromosome, my donor promised me blond hair, her sense of humor, taste for wine, her winning smile, and her way with people. Transplant team says absolutely no alcohol for at least a year. 4 out of 5 isn't bad.

Engraphment should start in a week or two with production of all three blood cell types. My WBC is less than .1, platelets at 12. I have had 4 units of whole blood which has made me feel better. Today I will received platelets to try to stop some internal bleeding.

Overall it is a struggle. Barring any major reversals (GVSH disease, rejection, or relapse) the worst should be close to being over with gradual improvement over next 3 months. Mile stones include my own production of blood in a week of 2, a BMB at day 30 to see if I am producing my donor's blood, A BMB at day +80 with release to home, and a final BMB at +1 year to see if I am cured. Overall not a pleasant experience but well it if I am cured.

I got roped into clinical trial #5 today. It is phase 3 so it should be pretty safe. Maybe it will help someone

Thanks for all the support,

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Old Fri Jul 11, 2014, 06:58 PM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Congratulations !! I appreciate the information. You should be at about day +50 when I am at day 0. The plan for me is to be in the hospital for three/four weeks following transplant.
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 Sat Jul 12, 2014, 08:41 AM
sbk007 sbk007 is offline
Join Date: Apr 2013
Location: NY
Posts: 322
You did great Ray! - Congrats!.
What clinical trial do you get roped into? The last one served you very well.
Godspeed Ray!
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Old Sat Jul 12, 2014, 12:54 PM
Birgitta-A Birgitta-A is offline
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918

You are very brave Ray!
Kind regards
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Old Sat Jul 12, 2014, 05:44 PM
sherryjac2 sherryjac2 is offline
Join Date: Mar 2012
Location: Bluffton, SC
Posts: 23
Thumbs up Fighting Fatigue & Nausea

I remember so well the feeling of deep fatigue. In the early days following transplant, I had to sit in a chair at the sink just to wash my face and brush my teeth. If I stood in the shower, I had just a few minutes before I felt weak and/or nauseous. I made myself push through it. I instinctively knew that the way to healing was to keep moving. I ate whatever I wanted that didn't encourage nausea: ice cream, boiled potatoes, chicken soup w/rice, whatever felt good on my stomach. I always believed I'd get through it, and you can too!!! Keep on keepin' on and keep your dukes up against this dreaded disease.
It's all about the fight.
Sherry Baby 62 Diagnosed 2/11/12 MDS to AML-6; del 20q and trisomy 21; Vidaza 3 month trial unsuccessful; ALLO BMT 7/2/12; Sister Donor 10/10 match; Chronic GVHD mucous membranes, otherwise all's well :0)
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Old Sun Jul 13, 2014, 01:31 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 572

It is great to see that you are doing well. Keep up the great attitude and it will help along the way. There are definitely bumps in the road to recovery. I have changed medications up, down, different, good reactions, not so good reactions and just overall changes and now around day +140 with some GVHD. At this time, you get to see how much art is mixed with science when it comes to transplant and medicine as a whole, and keeping on top of your symptoms, reporting them, managing them actively seem to be key to how you feel and how your doctors respond.
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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Old Sun Jul 13, 2014, 09:21 PM
rar rar is online now
Join Date: Mar 2014
Location: colorado
Posts: 212
It is reassuring to hear form people who have been through the recovery process and that as bad as I feel I am on the road to recovery. Doctors and nurses have seen many patients very few experience it first hand. Today I did 15 minutes on treadmill and stationary bike at 20% of my normal pace. I think I felt better after it. It is hard to breathe through the germ masks.

Thanks for all the kind words. It is nice to know that people care.

bailie. With the mini transplant from siblings early release is normal. You sleep better because of no midnight and 4PM vitals checks. Hospitals are germ filled environments which is a bad place for someone with no immune system. If you receive full irradiation, or get cord blood they wait ~ 3 weeks to see if you get engraphment.

sbk007. It is a phase 3 study on CMV. I haven't had the ambition to look it up yet.
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Old Mon Jul 14, 2014, 04:56 AM
alyasa alyasa is offline
Join Date: Jul 2014
Location: Polokwane, South Africa
Posts: 19
Gracefully grateful Rar!

Thanks for your positive message, and God bless you with your positive outcome. A clinical trial is always a risk, and you do the MDS community a service.
It is wonderful to read your posts, and to FEEL your gratefulness and empathy. In my book that is positive energy like no other.
Alyasa, father aged 72, dx July 2014 RAEB-2, (10.5% blasts) on Vidaza, low WBC (<1)
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Old Thu Jul 17, 2014, 02:37 AM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 830
Thanks for sharing your journey through SCT rar. It's a great encouragement to all of us. All the very best as you continue to count off the days. May there be continuous improvement for you!
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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Old Mon Aug 18, 2014, 03:39 PM
amyangel amyangel is offline
Join Date: Jun 2014
Location: Wisconsin
Posts: 64

What a wonderful story Rar !!
They found matches for Amy !!! Excited and scared all in one ..
Oct. 1,2,3,4,5, will be chemo 6th day will be a day of rest and on Oct 7th will be Amy re-Birthday !!
I loved how you shared about how much a baby needs to grow and become new inside !! Hang in rar
We are hoping to do outpatient!! Our Hospital has an apartment near by
Prayers for you
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
WBC .3 , hemoglobin 7.3 , hematocrit 2, platelets 60 , neutrophil .21 Mag 1.6, Potassium 4.6

Last edited by amyangel : Mon Aug 18, 2014 at 04:08 PM.
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Old Thu Aug 28, 2014, 04:42 PM
johnwc johnwc is offline
Join Date: Dec 2013
Location: PORTLAND
Posts: 42

Just came across your thread and would love to hear an update. I'm headed to SCT in Oct or NOv at OSHU in Portland.

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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