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Old Tue Feb 2, 2016, 11:45 AM
apantoja apantoja is offline
Join Date: Oct 2014
Location: Colombia
Posts: 5
Post 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.
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Old Tue Feb 2, 2016, 11:46 AM
apantoja apantoja is offline
Join Date: Oct 2014
Location: Colombia
Posts: 5

DECEMEBR 2014 Mum had a low pain tolerance level as she had a very good health until then, Injections were painful to her, we tried intravenously but she felt too down sitting on the Chemotherapy room for hours. So, she endured the pain of the injection on her belly and leaving the place within 20 mins. She also had an injection of Filgrastin 6mg that she had at the end of the 7th Aza injection. Her blood counts dropped sharply in a week, 3 units of red blood cells and Platelets were ordered. However by Christmas she was 'strong' enough to travel to the country house of my uncle, she tried to lift up a bag from the floor and she said heard something like a bone cracking, the painkillers made the job and we had an excellent Christmas in family, those few days she seemed almost normal and we forgot for a while her condition, she ate normally, took the sun, smiled and got renovated, her mood lifted up.

JANUARY 2015 She complaint about pains around her hips and ribs, initially a hot bottle water did the extra work painkillers seemed not doing. I gave her gentle massages with oils. She started to struggle to walk without pain, to stand up and to dress up. She started to spend most of her days in bed, her appetite got reduced again, increased doses of painkillers did not work and she had ordered morphine for first time. Oxygen at home was ordered too. She had another transfusion of platelets and red cells just before starting the second cycle which she tolerated a bit better, this time she did not have the Filgrastin as her platelet counts were too low. Late January I cried of happiness to see her blood counts have improved, not a normal levels but it was an very positive quick response to the treatment, and it was just the second cycle. We all smiled including her haematologist. However that day of the appointment she complained about pain on her lower back, a couple of days before we had to call emergency doctors because hew pain was unbearable. Then this day of the appoitment the Dr ordered a magnetic resonance (MRI) of her spine and that she had to stay in the hospital to infuse her stronger painkillers.
They allowed me to sleep in the same room for a couple of nights and we talked a lot, she knew how much I love her, she thanked me for being there in that time when she needed me most. She was looking forward to her 3rd cycle of azacitidine.

FEBRUARY 2015 My flight return ticket was for the 6th February. We had only few days more together. The night before my trip the MRI results came back with bad news she had 3 self collapsed vertebras that were causing her the extreme pain. We were told about the recovery process, and it that it was to going to be painful and long , her bones were all weakened because of the anaemia of the last months and the disease itself. I cried and cried and cried but showed her a positive face when I managed to control myself, I slept in the hospital I holded her hand all night long we touched our hands like if they could speak, it was a profound moment in our lives, there were not more words needed, it was just mutual love and gratitude. I left Bogota that night and burst into tears in the airport. Leaving my mum in hospital was the worst feeling of all my trip.

HER LAST WEEK. I called my mum, dad and brother every day from the day I landed in the UK on the 7th Feb. They ordered a customised corset type so it could support her back and she might be able to move and walk again. Apparently it was very painful to wear and she could not handle it. On 11th Feb she should have started her 3rs cycle of AZA but they wanted to stabilize her pain first. She was sent to home on the 12th Feb and 2 nurses were authorized to take care of her at home (12 hours shifts). Mum and dad lived in a big house but my dad is 81 and could not manage to take care of my mum as I or a professional nurse. That night I was told she was on excruciating pain, IV morphine was not doing anything, she told my dad that the nurse was 'injecting her stuff on the back' but the nurse was not doing it. Early in the morning my mum was taken back to the hospital, Drs from the ambulance told us her oxygen levels were dangerously low and that she might have a fatal failure on the way to the hosp. They asked if we wanted to authorise CPR (Cardiopulmonary resuscitation ) we said not to do it because it would have caused more fractures and because she explicitly said not to it. I cried rivers because of the impotence during that week, I could barely slept, eat, or had any other thought that was not my mum.

I spoke to the pain control doctor by phone and I asked him to control her pain not matter if that put her on a state of unconsciousness or even comma, he told me about that possibility. For the family the priority was to control her pain not matter what. Doctors managed her pain relatively quick but informed us she had pneumonia, the bacteria was quite aggressive and expanded quickly in matter of days, they gave her IV antibiotics and expected to see some results by 48hrs. On the afternoon of the 14th Feb, doctors told us she was actively dying. Dad was on a disbelief state, he did not want to believe about the seriousness of her MDS and he expected us to be just exaggerating. Family members were told to say their good bye and she was conscious, probably not very alert but she responded with head movements. I managed to thank her by phone and to let her know that she was a wonderful mother, that I am the woman I am thanks to her. She passed away surrounded by her closest family members, and she was not in pain.

AFTERMATH I thank life for the opportunity that gave me to share with mum for 3 months when she needed me most. I felt I said everything and showed all my love that my grieving time was short. I closed the cycle very quickly and I remember her with pure love. Dad moved closer to my Brother and struggling to sleep but pills are helping him. He is brave and it is healing. I attended mum's funeral, I travel back for a week to deal with my mum's clothes and things that was painful but an important step to close the cycle. I felt the love of family and friends and of course my mum's love.

TO PEOPLE WITH MDS. Be positive, and follow Drs Instructions, don't try to be brave or stubborn and delay any treatment. Mum had blood improvements just after the 2nd Cycle with AZA and that is fantastic results. I believe that if her bones would not have self collapsed she would be with us. If you want any other information more specific please don't hesitate to request it. I'll be happy to exchange some messages. I'm sorry for the length of my story. I needed to put it here.
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 12:14 PM.
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Old Tue Feb 2, 2016, 06:00 PM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 827
Hi Apantoja - Thank you for the detailed and very moving story about your mum. It's obvious that you have been a devoted daughter to your parents. I so appreciate that in your grieving state you have been willing to tell this story for my benefit. Thank you and may God bless and comfort you.
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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