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I am describing my story to show that the diagnosis is not a sentence and that better treatment options than those that are obvious and available in Poland can always be found. It is worth looking for modern therapies outside our country – sometimes completely free! I believe it is worth fighting for the best possible treatment.
My name is Marek Ambroziak, I am 41 years old, until September last year I lived blissfully ignorant of the facts and the future that awaited me. I have a bone marrow cancer.
The first symptoms of myeloma
It started innocently. In August 2012, during a vacation at the Polish seaside, pain in my legs appeared. I downplayed it, blaming fatigue. A month later, severe pains appeared: first in the spine, then in the right leg. They were so annoying that I couldn’t walk. MRI revealed a pathological fracture of one of the vertebrae and the fact that the tumor was pressing against the spinal cord. In October 2012, I underwent a surgical operation to decompress and stabilize the spine – by inserting a total of eight screws into the vertebrae above and below the broken Th11 vertebra, on which two titanium-vanadium rods each 15 cm long were attached. The operation was carried out at the last minute – I was in danger of paralysis.
In November, after specialist research at the Institute of Hematology and Transfusion Medicine in Warsaw, the initial diagnosis was confirmed: malignant multiple myeloma. It was he who caused damage to the spine.
Needless to say, for a person who lived a happy life with his wife and two wonderful sons, the news that he was suffering from cancer was a shock. Multiple myeloma is incurable. The average survival with innovative treatment is about 10 years.
Therapy – Polish reality and hope overseas
In Poland, I was waiting for therapy according to the standard CTD regimen (cyclophosphamide, thalidomide, dexamethasone). This therapy is not always effective and causes a range of side effects, such as polyneuropathy, i.e. loss of sensation in the fingers and toes, sometimes irreversibly. My wife and I started looking for other opportunities. We found out that there are clinical trials conducted in the US according to the CRd scheme – with carfilzomib (market name – Kyprolis). It is a new generation drug, unavailable in Poland and most European countries.
On the website of the Myeloma Treatment Center Foundation, we read that CRd is the most active treatment for multiple myeloma in the world, and that first-line patients who received CRd, i.e. carfilzomib, lenalidomide and dexamethasone, achieve 62% of complete deep remission after therapy and the overall therapeutic response is as high as 94%.
Treatment abroad
Encouraged by the possibilities offered by this innovative treatment, we decided to establish contact with several centers conducting clinical trials with CRd. These efforts gave us an answer – the National Institutes of Health (NIH) in Bethesda, Maryland, was willing to accept me for therapy! It is remarkable that it covers both the costs of drugs, as well as medical care and hospitalization, also for people from outside the US. I had to wait for the initial therapy, the so-called induction, lasting 8 months, which require a constant presence in the USA; this is followed by maintenance therapy with revlimid, which is given monthly or every three months for up to 2 years. After the end of maintenance therapy, there are check-ups, which should be returned every 3-6 months.
We were left with the organization of the costs of flights to the USA and renting a place near the clinic (it is easiest to visit family or friends, but I was not so lucky). I found a room using an advertisement on one of the American websites. We also had to consider the costs of food and transport. It was not easy, but several solutions to the problem were found. First of all, I was taken care of by the Alivia Foundation, which helps people suffering from cancer. Thanks to the funds sent by the donors, it was possible to cover the lion’s share of the costs, but it was not without the financial support of the family and the liquidation of own savings.
The next step in making the therapy in the USA real was getting a visa. Before visiting the embassy, I took care of documents proving that I would be able to make a living in the United States from my own resources – a certificate from the bank about savings, bank account balance or a salary certificate from work turned out to be useful. In this way, I obtained a visa with the right of residence for more than one year, although – theoretically – the maximum period of stay that can be applied for is six months.
Bethesda clinic and possible recovery
I was able to get to NIH, and after just two treatment cycles I had a very good partial response to drugs with a 90% improvement in monoclonal protein reduction from baseline. My body was classified as close to getting the so-called complete response – there were still trace but not measurable amounts of monoclonal protein in the blood in the gamma range.
I did not experience any side effects of chemotherapy – there were sore throats or coughs, but since I started following the doctor’s recommendations and taking more fluids (2-3 liters per day), the mucosa stopped being so irritated with drugs and even that stopped completely.
The veins in my forearms got somewhat buried (probably as a result of carfilzomib administration), sometimes the nurses tried for quite a long time to insert the catheter into the vein, which gave me a collection of bruises on my arms.
There were other side effects (e.g. heartburn), but these are rather minor and trace amounts. In fact, I was able to undergo the light version of chemotherapy, especially when compared to the side effects of CTD (such as the polyneuropathies mentioned above), which I do not experience at all.
Now
On October 5, 2013, I returned to Poland. I have completed induction therapy. It was possible to stop the disease on all possible fronts:
– no even trace amounts of monoclonal protein were detected, free light chains (proteins) are within the reference range as in healthy subjects,
– after bone marrow examination (biopsy), it turned out that the plasmocytes are also within the reference range,
– after a full body scan (PET method), it turned out that the bones had disappeared, dissolved and rinsed out of the body.
This means an exact complete response to drugs, which is the best that can be obtained in the treatment of cancer. And all of this with virtually no side effects. And to think that if I had to pay for everything out of my own pocket, it would be around $ 400!
I have two years of maintenance therapy ahead of me, during which I have to come to the clinic in Bethesda for a checkup and release of one of the drugs.
My wife and I have come a long way. It was not easy to make the decision to go to America and leave behind everything that is known and safe, but now I know that I would not trade in the USA for any treatments available in Poland. I would like to appeal to all those who have recently been diagnosed with multiple myeloma (and have not yet had any chemotherapy) – the Bethesda facility has requested the opening of a new clinical trial with an increased dose of dexamethasone.
The planned start time of the medical cycle is at the turn of December and January. Don’t wait and fight for the best treatment!
I will be happy to answer any questions by e-mail: [email protected]
Tekst: Adriana Hurry