Last update 11/18/24

Survivor Story from Germany

My sister was 57 when she got suddenly problems with reading and finding the right words. Her doctor reacted in the right way. She had directly a MRT and a Gliom was diagnosted.

One week later, on the 4th of october 2017 she had her first resection. The following examination of the tumor showed a glioblastom. The doctor who told her was not very empathic when he told her that she would dy of this disease which allows an average survival of 15 months. My sister asked him if there was anything positive what he could tell her. She got the information that it was a methylated kind, which means a little longer survival. They wanted to persuade her to sign in an actual study at the hospital but as she, her husband and me are all pharmacists we did not want to decide something under pressure.

Of course my sister was really downcasted but she never gave up and already one week after the operation when I was searching in the internet about treatments she told me that one day she would tell the people how she survived. I was impressed of her strength and her optimism.

Of course she had also black hours and was especially afraid how her two daughters would cope with the situation.

It followed the usual treatment called Stupp-protocol with Temodal and radiation (60 GY, single dose 2 Gy).

But soon she got a thrombopenia which required the substitution of platelets and she had to stop the treatment already on the 16th of November 2017. Also her number of leucocytes was low.

But two weeks after her operation we had already been together in Berlin visiting a meeting of the Hirntumor-Hilfe, a german organisation which helps with a lot of information after the diagnosis and organizes regularly meetings in big german cities with lectures of scientists of the best hospitals in Germany regarding braintumor.

There we had heard of a doctor who prefers lower and metronomic dosage of Temodal and additionally Hydroxycarbamid.

And we had seen for the first time people wearing tumor treating fields.

We were a little bit shocked when we heard a lecture about the TTF and it was said that it was only suitable for men because you have to shave the head.

But really if you have the choice to dy or to loose your hair: what would you prefer?

We heard also a lot of other very interesting studies but at that point these two things where for us the most interesting ones.

So when she had to stop the usual treatment we visited the above mentioned doctor and my sister started the low dose chemotherapie. He encouraged her to go on the planned holidays with her family in spite of her bad blood values (giving her filgrastim for the travel) what she did and enjoyed.

On december the 27.th she started with the TTF-Treatment which she uses until now. Although it is not so pleasant to have shoven hair with electrodes on the head which heat and a bachpack with the battery it is much better than a lot of other medication with many sideeffects.

But the tumour had already grown again and she needed a second operation because of recurrence. She decided to go to another hospital. Although they tried everything to take care of the very important areas of the brain (speaking with her during the operation etc.) she lost an important bit of her strength of vision, since then she has part of an deficit of her right field of vision. The treating oncologist recommended to take CCNU, because there existed a study with good results combining it with Temodar and she went back to the low dose chemotherapy with Temodar and now CCNU instead of Hydroxycarbamid.

I persuaded her to visit another very well known german doctor. He did not think that the lowdose chemotherapy would be successful and my sister started with normal dose CCNU but no more Temodar because her blood values were bad again. She got 5 doses of CCNU but the intervals were every time longer because her blood needed to recover.

On the next information meeting of the above mentioned Hirntumorhilfe a lot of people were in favour of taking Methadon to improve the effect of the chemotherapy and my sister tried for several weeks but she did not feel comfortable with it. Also her doctors did not recommend it and the doctor who gave it to her was not interested in her and her disease but in the money he could earn. When you fight against death you take every straw and there are always people who take advantage of it.

She also started to take a high dose of incense every day what she does until now. As it is said that sugar helps the tumour she tried a sugarless diest and abstained from any kind of alcohol but she did not like the substitute products (alcoholfree wine, christmascookies and jam with birchsugar) and decided that if she had to die early anyway she would prefer to enjoy at least her meals. The CCNU seemed to have worked well but she could not take it any longer and progression started again. The next step was a second radiation (13 times 3 Gy), this time better planned with not only a MRT but also a PET in advance which started in october 2018. one year after diagnosis. Afterwards she got cortisone for two months against the edema which occured because of the radiation. Than the treating doctor decided to try to get the permission from the health insurance company to treat the edema with Avastin, a drug which had also sometimes helped against Glioblastoma but is in Germany it is only authorized for the treatment of brain edema.

She got her first dose in July 2019. She had a strong reaction with fever therefore she got again some cortisone, but after several doses and reduction of the single dose she had no more problems with the application and the wonder happened:

Almost every MRT since then showed a steady state and if there is something unknown to be seen it seems to be nekrosis and no tumour growth.

Therefore the insurance allows her to get Avastin regularly. She also still takes incense every day and wears the TTF with great discipline because nobody knows what really made the difference in the treatment.

So the whole family recommends: Never change a running system!

Of course: her life changed totally. She still can not read and she has problems to find some words and numbers and she is very upset because of the restriction of her sight after the second operation and now also the more "normal" diseases of older age begin like a hip operation or cataract but she is still living 7 years after her diagnosis and can work in the garden, go on holidays, celebrate with family and friends and many other things.

We are happy and thankful! Ulrike Krämer-Frei