Stefan
Meine akute myeloische Leukämie 26. Februar 2017

UK

My Leukaemia Desease - English Summary

USA

At forty years I was diagnosed with leukaemia. Unfortunately the leukaemia which was first thought to be an Myelodysplastic Syndrome (MDS) turned out to be an Acute Myelogenous Leukemia (AML) which is a far more aggressive form of blood cancer.

1st onset of my leukaemia

In November 2009 I had my first chemotherapy at Hannover Medical School (MHH). In March 2010 I got stem cells from a female donator. The bone_marrow_transplantation was successful, the blood test showed an ideal chimerism of 100%.
I rallied well and quickly and did not seem to suffer from any complications in my every day life. From April 2011 on I was able to work full time again.

2nd onset of my leukaemia

At the beginning of 2013 the blood tests revealed that the chimerism had deteriorated and once again I was diagnosed with MDS. The first therapy failed and again I got stem cells from my first donator. This also did not work.
From August onwards I underwent several chemotherapies and in October 2013 I got stem cells from a male donator. Again the transplantation was successful and again the blood test showed a chimerism of 100%. There were some minor complications this time. In December 2014 I started working full time again.

3rd onset of my leukaemia

All of a sudden the chimerism deteriorated due to a FLP-3 mutation in January 2015.
The leukaemia has broken out for the 3rd time.

Stefan
April 2015 in the Hannover Medical School (MHH) - Picture by Stefan

The ongoing therapy is a row of stem cell infusions (taken from my second donator) and started in February 2015.
March 2015 the MMH my treatment of the adverse reactions caused by the recent therapy began.
At the end of March 2015 there was a turn for the better. My skin, intestines and liver started to heal. The healing process, especially of the liver will take a quite a while, most likely several months, but it is a first step forward which gives me some hope for the future.

My AML is a very aggressive disease as it is linked with an MDS.

All in all leukaemia is a fatal disease which can only be treated but never be cured.

On 12th of May 2015 my doctor diagnosed the complete remission of leukaemia.
After five and a half years of therapies hopefully my leukaemia will not break out again.

Curative treatment adverse reactions

But it will be long way back to normal life. My leukaemia has been beaten and will presumably never come back.
Leukaemia is uncurable, so it could break out again, but at the moment it is hardly probable.

The three main adverse reactions of the therapy which began in february are still bothering me.

My skin is still thin and spotty which is no real problem but feet and finger nails are still a worse case.
Meaning, I cannot use my finger nails to lift a piece of paper.
My face is often swollen due to the steroids and my eyes are often yellowish. But this is just annoying.

The inflammation of my bowels is nearly cured, but there are still problems with my bladder, which means I must go to the toilet very often, but maybe for a man over 45 years old this is a typical problem too.

The real Problem is still my liver.
My liver will take half or maybe a whole year or even longer to heal.
To cure my liver, I must take medicine with cortisone / steroids.
And steroids have many, very bad byeffects.
Because I have been and will be taking this for a very long time - since march and for the next half year minimum - and highly dosed, the byeffects I have, are very very bad.
Physically I often shiver and quiver, have problems with my eyesight, problems with the sense of balance, going upstairs, feeling cold and so on.
And I have now a medically induced diabetes. Because the diabetes is caused by the steroids, I do not have to watch what I eat, because the high dosis of steroids dominates the blood sugar.
But I must inject insulin four times a day.

But this all is nothing compared to the mental derangement.
Steroid can change your mind and this happens to me.
Basically a bit, but I have daily attacks.
Now for more than six month I have had no clear day without the influence of mind changing steroids.
And this will go on for the next few months.
I can’t be really sure what I see and feel, is it 100% real or it is a mix with delusions.
The other problem ist the change in my behaviour.
I have become unpredictable, having sudden mood swings which sometimes even lead to aggressive outburts. Then again I feel sluggish and lack motivation. My overall condition can be compared to an manic depressive state. I am constantly on the guard whether I am clear in my head or „under the influence“ of my medics.

I'm still very ill and the rest of my life which will be not so long at all I will be in therapy.
But I am alive and can still work on this page, while most of the other patients with leukaemia after seven years of therapy are dead.

You can contact me via E-Mail

Stefan Kramer

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