In a few days Agnieszka must start her treatment! The National Health Fund refused to refund ... HELP!
One-year treatment with non-refundable Tagrisso - Agnieszka's only chance
Ends on: 08 November 2019
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Rak już kilkakrotnie pokazał, że jest to nierówna walka. Już miałam dobrany oręż, to potwór się przepoczwarzył, w czym zaskoczył nawet lekarzy w swej złośliwości.
Badanie molekularne przeprowadzone w lipcu 2019r. z krwi obwodowej potwierdziło, że
posiadam bardzo mocną mutację oporności T790M, a terapia lekiem Tagrisso jest najbardziej skuteczna na ten rodzaj raka – tak bezsprzecznie zostało to ocenione przez lekarzy onkologów.
Dzięki Państwa dobremu sercu od 17 sierpnia 2019r. mogłam rozpocząć bardzo kosztowne leczenie z nadzieją na zatrzymanie progresji choroby i poprawę komfortu życia – mniej bólu! Po dwóch tygodniach od drugiej operacji wycięcia guza z mózgu, zostałam poddana napromienianiu w trzech frakcjach na obszar, w którym znajdował się nowotwór - jest to prewencyjne działanie, by guz już nie odrastał.
Wycięty z głowy nowotwór został oddany do badania histopatologicznego i molekularnego w celu zbadania - potwierdzenia mutacji w genie kodującym EGFR wraz z mutacją oporności T790M. W niedzielę 10 listopada 2019r. zadzwonił do nas lekarz prowadzący z informacją o
częściowych badaniach – „nowotwór zgubił mutację T790M, dlatego odpowiedź organizmu na terapię lekiem Tagrisso będzie znacznie mniejsza i może nastąpić rozwój choroby”. Czy utrata mutacji została spowodowana 40-dniowym czasem oczekiwania na lek, dając rakowi pole do działania, czy może jego złośliwość jest ponadprzeciętna? Tego nie wiemy.
Została przez lekarzy podjęta decyzja o zaprzestaniu obecnej terapii i zaplanowaniu cyklu chemioterapii dobranej na mój rodzaj raka, by zahamować jego rozwój. 13 listopada zostały mi podane pierwsze wlewy chemii.
Trwają dalsze badania genetyczne w celu ustalenia biologii wyciętego guza (analiza wszystkich mutacji, na które mogą istnieć jeszcze leki celowane) Mam nadzieję, że uda się rozszyfrować działania tego potwora i dobrać odpowiednio dalsze leczenie. Wiem, że takie terapie są najbardziej skuteczne i zarazem bardzo kosztowne. Sytuacja zmienia się bardzo dynamicznie i tylko dzięki dużemu wsparciu ludzi dobrego serca, mam siłę na dalszą walkę o życie.
Obecną chemioterapię sfinansuje NFZ, natomiast jest wiele kosztów związanych z moim leczeniem (leki, badana - nie zawsze refundowane przez NFZ, konsultacje u specjalistów, wynikające ze skutków ubocznych leczenia) – będzie to finansowane z Waszego wsparcia. Zebrana kwota - pomniejszona o wartość już odbytego leczenia będzie czekała w fundacji na dalszy rozwój wydarzeń.
Jak widać w całej historii mojej choroby, rak nie odpuszcza, a ja też nie zamierzam się poddać, choć ostatnie tygodnie były bardzo ciężkie. Mam dużą wiarę, że moja walka nie skończy się na etapie chemioterapii i będzie możliwość dalszego skutecznego leczenia.
Bardzo dziękuję za pomoc finansową oraz cudowne słowa dające promyczek nadziei.
Agnieszka Pacocha
Fundraiser description
The drug that can save my life will not be refunded - that information was a blow to me. The news and the exhaustive fight against cancer, make it almost impossible to get up... My family and I have spent all our savings on the treatment, and now every day without it causes a dynamic development of cancer, which eventually will lead to my death... I am only 42 years old - I have a wonderful husband, and wonderful sons. I work with disabled people ... I want to live for all of them, I need to live for all of them. I am asking for help, because that's all I have left...
I'm entering a better half of my life - that's what I thought when I turned 40 years old. Beloved husband by my side, healthy, wonderful sons who are my greatest pride, and a wonderful job as an occupational therapist, helping people with disabilities. It didn't cross my mind that in a while it would be me who needs help...
The news about the cancer fell out of the blue. It tore our world apart... It was May 2017. My husband wanted to take me to Venice for the May weekend to celebrate my birthday. I was so excited! We used to spend our holidays in Poland, at the Baltic Sea, so our trip to Venice was supposed to be the first time when we would travel abroad – that is why I enjoyed that idea even more! Unfortunately, this trip never happened... My shoulder began to hurt badly, it was getting worse and worse. The pain was constantly increasing despite the treatments and massages, the drugs did not help either. The day before departure I went to an orthopedist. It was the first great shock – I learned that there was a hole in my bone with a diameter of 2.5 cm, which was infiltrating the muscle.
Instead of the dream trip, I had a surgery. It was so hard to patiently wait for the histopathological (test) results. I was hoping it was nothing serious... The tumor tests broke me mentally. Diagnosis – lung cancer with bone metastases. Another shock... I - a strong person who professionally supports others - was broken by a cancer. The disease was so unexpected, there was no one in my family who had it before. I was eating healthy, I have no addictions, I do regular check-ups, breast ultrasounds and cytology. It wasn't supposed to happen!
In those most difficult moments, I survived thanks to the support of my loved ones - my family, patients and therapists from the center who didn't let me give up. Thanks to them I didn’t drown in the depths of despair. Although I heard the sentence: “malignant G3 squamous cell carcinoma of the lung with dissemination in stage IV”, I had to maintain any last shred of hope. The first chemotherapy didn't help, nor the next one. Instead of fighting cancer, it only destroyed my body. I was extremely exhausted. Every cell in my body hurt, I had a severe fever – they couldn't even help me in the hospital. In that moment I thought I would die... Instead of improvement, further metastases were found out. It was January 2018, when 3 brain metastases appeared on resonance. After radiation therapy, I lost my hair again... Although it is possible to get used to the stares of people, shocked by the sight of a bald woman, it’s never pleasant...
On the follow-up ultrasound examination of the breast, the doctor noticed an enlarged lymph node. When he extracted the sample and sent it for molecular research the breakthrough happened! After almost a year of ineffective treatment, I learned that the diagnosis was incorrect. The latest one said: adenocarcinoma with EGFR gene mutation - that could be treated with molecularly targeted drugs!
I was lucky in my misfortune - it is possible to successfully treat this rare cancer. Unfortunately, it turned out that the drugs are expensive and not registered in Poland yet, so there is no chance to refund the treatment. Additionally, the Polish National Health Fund stated that due to my previous chemotherapies, I do not meet the procedural requirements... Back then I was already in very bad shape, we could not wait any longer. We decided to try to finance the medicine by ourselves... It absorbed all our savings and required us to go into debt. It was an expensive decision, but the best one we could make - it turned out that the disease was stopped and even began to subside!
After 3 months of the treatment, I began to come back to life! I could go back to work and normal life. I’ve started to dream again ... Last June was so wonderful! My older son got into his dream high school, and my youngest finished sixth grade with honors. We were supposed to go to the Baltic Sea to rest. Then it turned out it’s not that easy to beat cancer…
On the 27th of June, I had an epilepsy attack. It turned out that it was caused by a 3-centimeter tumor with edema. It was necessary to operate immediately on an open brain... Although, I could have lost an ability to speak, see, hear, walk or feel after the surgery… I could have even died on the operating table, I had to agree - without the surgery I would have no chance...
It worked, the doctors removed the tumor, but that was the only good news we got. The lung tomography showed that after 15 months of successful treatment, the cancer turned out to be smarter, and it mutated again... Until that very moment, I believed that my disease had gotten under control. Sure, there were supposed to be regular checkups, examinations and side effects, but I was supposed to live! But then again everything started to fall apart...
When I was about to break down, I learned from my amazing oncologist that it's not over yet! There is a drug, very effective, third generation, ideally suited to my type of cancer, which should be introduced when the previous one stops working. It was like a great euphoria - the whole family and friends were crazy with joy! Unfortunately, that one lasted a short time, and was replaced by a horror – it is necessary to gather 360 thousand zlotys. That's how much costs for one year of treatment...
The Polish National Health Fund (NFZ) only offers me palliative the treatment – option of dying with pain relief. But how can I give up knowing, that there is still a chance for me to live many more years, to be with my boys and to get back to work eventually, to live how I lived before it happened? I need to start treatment with Tagrisso drug in the coming days. I will die without it ... I'm scared but I won’t lose my faith.
Cancer is a disease of everything, it hits both one’s body and mind. You can’t have plans, you can't dream - cancer takes away everything. People only see what is going on outside, but the real horror happens in the head ... With all my heart please be with me in these terrible moments....
Agnieszka