An Australian woman has opened up on her battle with one of the rarest cancers in the world after being rushed to hospital with chest pain. Seema Haider, 47, was having a regular Monday afternoon in October and was on her way to her brother’s house when she had a crippling bout of chest pain. After multiple trips to hospital, including an emergency surgery for a ruptured spleen, Ms Haider was diagnosed with T cell prolymphocytic leukaemia (T-PLL). The aggressive and incurable form of cancer is so rare she is the only person in Australia suffering from it.
Her brother Saeed Haider, 40, told Daily Mail Australia, Seema (pictured) who was rarely sick had seemed lethargic and low on energy in the months leading up to her diagnosis, but did not suspect anything major was wrong. He said his sister’s ordeal started when she called him to say she had bad chest pain and was going to get some pain killers. Ms Haider went to her brother’s house every afternoon to spend time with his children. But when she arrived that day she was in such agony that she collapsed to the ground and was rushed to hospital. ‘When she came through the back of the house she was crying and yelling, saying “take me to the hospital, I think I am having a heart attack,”‘ Mr Haider said. ‘So we did and they took her in and did some blood tests which came up clear so she was sent home.’ Two days later Seema returned to the hospital to get a bone marrow biopsy before returning the next day after collapsing in agony.
‘On Thursday we went back to the hospital and the doctors were really worried about her and we just had no idea what was going on,’ Mr Haider said. ‘I finally got a hold of one of the doctors and was like “what is going on?” and they told me “look, I’m really concerned about your sister, she’s got internal bleeding and we think her spleen is about to explode.”‘ Seema (pictured with her nephew) was taken in for emergency surgery after an ultrasound of her spleen showed it had ruptured and was slowly leaking blood. The surgery managed to stop the bleeding but after she awoke from the anesthetic the bone marrow results came back with a diagnosis of T-PLL. ‘My mom called me absolutely hysterical and said you have to come to hospital now and told me my sister had one of the rarest cancers in the world,’ Mr Haider said ‘I was just floored and I got all the doctor’s notes and started researching what she had and the more I read I just broke down more and more. There just isn’t much you can do.’
‘There are no survivors and no way of treating it and the cancer is so rare they can’t even really test it,’ Mr Haider (pictured center) said. As the family learnt more about the rare cancer they were informed by doctors that she was the only person in Australia to have this form of cancer. While there is no known treatment for it, chemotherapy was flown in from the United Kingdom to attempt to treat it. Mr Haider said the family has tried to join groups, interface with doctors overseas and learn as much as possible about the cancer. But he said Australian doctors are barely aware of it and are at a loss at how to treat it. One final treatment option that was floated was the potential of a bone marrow transplant and Mr Haider came up a match for his sister. Mr Haider said the day his sister heard they were a match her face lit up and was just elated that there was hope for her. But the same day Seema (pictured right) received the disheartening news that the tumors had spread to her spleen.
Now Seema (pictured with her nephew) and her family are waiting to hear if the bone marrow transfer is even plausible as they deal with mounting bills and stress. ‘The transplant with my bone marrow is the only treatment option, it is the last hope,’ Mr Haider said. Seema’s mother once she heard about her daughter’s diagnosis travelled up from Canberra to take care of her, spending her days by her bedside in the hospital. She knows cancer all too well, battling it herself on three different occasions. Looking back on his sister’s diagnosis Mr Haider said there were signs something wasn’t right but no-one could have imagined the situation would be this dire. ‘Thinking back she kept getting sick for about a month before, which was really rare for her as she has always been so healthy. She was lethargic, really lacking energy and was a bit off but that’s hindsight. The worst part is there is nothing we can really do, I feel helpless and because it is so rare and the leukemia foundation barely even knows about it, it’s hard to remain positive, we just need some hope to cling onto.’ The median life expectancy once diagnosed with T-PLL is about 7 months as it is generally resistant to conventional chemotherapy, according to the U.S. government National Library of Medicine.
Describing his sister Mr Haider said she is the ‘nicest, sweetest and most loving person you will ever meet.’ ‘She has never done anything wrong to anyone and with a diagnosis like this you just ask yourself why this could happen to someone like my sister,’ Mr Haider said. ‘We can’t change it but just question why my sister of all people. I am her strength and I am the backbone at the moment and she is emotionally taking it hard and I don’t think she can handle it much more, I can see she is emotionally broke.’ Apart from supporting their beloved family member, the Haider family say they want to raise awareness of the rare forms of cancers as throughout the journey they felt like they had no support. ‘When someone goes through this rare of a disease there is nothing to support them or any real information on it, it is like there is no hope,’ Mr Haider said. ‘So while Seema (pictured left) is the only one in Australia with this form of cancer, someday someone else might get it and I want them to know more about it so they don’t feel so alone like we do.’ A GoFundMe has been set up to support the family as they face a tough financial time. Mr Haider said their mother has moved to Sydney while Ms Haider receives treatment.
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https://www.soundhealthandlastingwealth.com/health-news/fit-and-healthy-woman-47-told-chest-pain-is-rare-incurable-cancer/ Fit and healthy woman, 47, told ‘chest pain’ is rare, incurable cancer