We came here together with leukemia, but I want to come back home alone. Here in Israel I was to get one last chance and I got it. I can live, but I have to receive a drug that decides about my future - Inotuzomab. This medicine is for me everything what I have dreamed about because thanks to it, I will leave the disease here. I have already told you about my fight, and now I would like to tell you about the victory. I want to shout to the whole world that after 4 years of hospitals, chemistry, pain and uncertainty, I overcame leukemia!
CAR-T-CELL method is my last chance. Only here, in Israel there were no age limits. Thanks to You – the donors I am in the hospital. After a series of tests it turned out that I need one more medicine, extremely expensive. Without it I cannot start Car-T-Cell treatment. The costs are unfortunately extremely high…
Time is running out, but I want to save my life and try to get this money. That is why, one more time I am asking you for help. I do hope that my story can still have a happy ending.
Although my life was fun and I enjoyed it very much today I’m telling you only about recent events, dying and my fight for life, as life is most important now… It all started on 23rd August 2015, pain in ribs, sharp pain in the back (lumbar spine), physiotherapists and massages that didn’t help at all. Then numerous appointments at neurologists and orthopedists, wrong diagnoses and I was moving with stronger and stronger pain. Soon I couldn’t even get dressed, the pain spread to the entire skeleton, and as it turned out later I had been moving with compressions in chest and lumbar spine.
On 1st October 2015 I went to hospital to have a computer tomography done. After some hours the doctor came and said ‘It is really serious”. One day after my birthday – such a present. Different medical tests, but morphology is OK – zero deviations, but the skeleton is destroyed – holes in every single bone from toes to skull, as in multiple myeloma. That is the first option, but something was wrong.
I spent a few days at the ward – ketonal and a biopsy from the most damaged part of spine. Without any diagnosis I was sent home having an orthopedic corsetry that held my spine in one piece. One month later a biopsy result came – no significant pathology. Further searching, possible reasons - thyroid gland, prostate etc. Another hospital and next biopsy this time from the lumbar part. Three weeks of expectation and the result came – 40 % cancer infiltration. Diagnosis - lymphoblastic leukemia/lymphoma. Morphology still all right, only pain in bones. Without fear but with strong will to fight I went to hospital and on 11th November I got the first chemotherapy in my life…
After chemotherapy a success came – a complete remission, cancer defeated. The doctors offered transplant. There were 25 % of chance that my younger brother could help. Unfortunately he couldn’t. Further cycles of chemotherapy, a month at hospital, a month at home and nervous searching for a donor. I received 3 consolidation and 6 maintaining treatments and one year of peace – no symptoms of cancer and huge hope that chemotherapy succeeded.
Then out of a sudden all collapsed as a house of cards – fever, pain in bones, bad feeling – I was right. Another biopsy, one month of waiting and the result – 90 % of bone marrow infiltration with cancer. Reinduction treatment, months spent between hospital and home. In the meantime, new haploidentical transplant method appeared. Again my brother could help, in theory he matched. Further cycles of chemotherapy to fight cancer and preparation for transplant that was originally planned on 11th June 2017. Time accelerated extremely. Morphology was really bad, so the doctors decided to give blood transfusions, but how many of them could I receive?
Few days before a bone marrow transplant my brother was definitely excluded as a donor. A desperate search for another donor started. Fortunately, the donor appeared – 9/10 match, woman, 43 years. At that point cancer returned, again 90% of bone marrow infiltration. Mega dose chemotherapy, radiation and a rescue transplant after which I received not even 6 months of peace.
January 2018 – a déjà vu – fevers and pain in bones again, biopsy and … 80 % of bone marrow infiltration. All methods of chemotherapy and radiotherapy have been used. The doctors decide to do DLI – donor lymphocyte infusion. Another chance to fight, but to my despair the donor was deleted from the donors’ base. She could not help this time.
There are no further options of treatment available in Poland, but in Israel I still have a chance. Before the disease I was strong, well-built and didn’t think I could ever be seriously ill. Now I’m facing the death that is lurking for me every day. Due to a very long treatment and drug-induced complications I cannot start Car-T–Cell treatment without Inotuzomab. Now my whole life is in your hands and I am asking again for your help.