My mum's story
I took me almost a year to write my mum's story. I want to do it because I found a lot of valuable information in this page and I found many of the stories very comforting during that difficult time.
I'm Colombian as all my family but over 8 years ago I decided to study in London where I met my amazing partner that made me stay here in the UK. I'm happily settled down here. My parents came to visit us every other year and I travel to Colombia as well.
Back in 2011-2012 my mother started to lose her appetite for red meat, bread and few other things, nothing significant and as she was overweight Drs did not see any bad side effect on losing some kilos. She was often on the doctors for her regular checkups and she enjoyed an excellent health all her life, she never liked to have any pills other than natural supplements. We went to a cruise in 2013 and I did notice her lack of appetite and dislike for food had extended to chicken, fish and any meat in general. She started to have small portions and skipping dinner at night. Mum was 71 by then and people started to compliment her about her new dress size, she did not want to lose more weight though. I believe in the course of that year she might have lost 1 stone (6kg). Her blood tests, pressure, sugar and other tests result were all normal.
In 2013 she complaint about a dizziness feeling in the mornings and that she had to stand up slowly before walking. Doctors said she might have had some hearing loss. They checked her circulatory system and again all normal. She was recommended to take ferritin supplements which she did. That year she had about 3 bad colds which made me realise her immune system was not strong enough, she had antibiotics.
MARCH 2014 blood test results came back abnormal for first time; her Red blood cells were too low. By then she said was feeling unusually tired but attributed it to the side effect of lasts colds and antibiotics. Her Dr ordered additional tests. Bone densitometry showed early signs of osteoporosis on her upper back, her chest RX showed some scarring as a consequence of been a passive smoker, she worked for over 20 year in an office full of smokers and in the 70s years it was normal and allowed to smoke inside office, she hated the smell of it but could not do much to avoid it, she was on these meeting for hours and hours where people around her smoked. She knew she was affected by it and more than one doctor asked if she was a smoker. Drs sent to her calcium+D vitamin and more tests.
SEPTEMBER 2014 They discovered she had a mild ulcer on her stomach and performed a biopsy to see if she was losing blood through it. At this point her blood levels sent her to the hospital to get a blood transfusion. She had a bad experience, did not like hospitals and resisted to go back. 3 months later she was lying on bed resisting going to the hospital, her appetite had reduced significantly. Had her 2nd transfusion on September 2014 and arrived with a blood count of 2.31RBC, 27HCT, HGB 9.0. They gave her 3 units. Her ferritin levels were very high (253 ug/d). Other than this all her test came back normal, kidney, liver, uterus, spleen....
OCTOBER 2014 She had a bone marrow biopsy that was extremely painful she said. I managed to get the results before her. I remember it was 31st October, were devastating results, I felt dying inside as I did not expect to see such bad diagnose. One of her results said it was indicative of AML, the other one said it looked like a Myelodisplasic syndrome. That day I prayed to be the second one.
NOVEMBER 2014. I travelled to Colombia on the 11th November, I was lucky to have a supportive employer, a supportive partner and the means to cover my travel expenses. I was given about 3 months of licence from office. I must to admit I did not want to travel, I knew it was going to be very difficult. My brother and I went with her to the specialist appointment where she was diagnosed with Refractory cytopenia with multilineage dysplasia (RCMD) prognosis 3.1 years to transform into AML, Median OS 1.6Y. Just like that, like an atomic bomb and almost like a death sentence. My brother and I made all the questions, mum seemed lost and did not understand what was all that terminology (by then I have already read lots about this and I had my questions prepared). She started her first cycle of Azazitidine on the 24th Nov. She asked me lots of questions, I explained the whole thing in the best possible way, she cried, she understood that had to live under treatment, transfusions , Doctors, etc for the rest of her life. A bone marrow transplant not authorized for people over 65 in Colombia.
I gave her a lot of encouragement to face it with a positive mind.
My mother 72 has RCMD , Hb between 4.7 and 10.4 (after transfusions). Platelets 42k. Started 1st cycle of Azacitidine 5-2-2 in November 24th. WBC 4.8
blasts 4%. Intermediate-1 risk classification of MDS
Last edited by apantoja : Tue Feb 2, 2016 at 12:05 PM.