I survived transplant at day +11.

[rar]

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,

Ray

[bailie]

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.

[sbk007]

You did great Ray! - Congrats!.
What clinical trial do you get roped into? The last one served you very well.
Godspeed Ray!
Steve

[Birgitta-A]

You are very brave Ray!
Kind regards
Birgitta-A

[sherryjac2]

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.

[DanL]

Ray,

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.

[rar]

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.

[alyasa]

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.

[Cheryl C]

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!

[amyangel]

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
Sue

[johnwc]

UPDATE..

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