Myeloid Dysplasia Syndrome

Anthony C, sorry I have no experience of MDS, hopefully someone else on here does and can help you. I'm so sorry your wife has had such a reaction to her treatment. My husband too had a very unpleasant reaction to his latest treatment in DEC after 9 months of been on it and has been left with a life changing condition as a result as well as his incurable diagnosis of cancer. Hopefully you will get the information you seek. 

My mum was diagnosed Christmas eve x Also had one round if chemo and tranfusions seem to be close together x last week the consultant told her months x

This week second day of round 2 chemo she got an infection and is now in hospital. We saw the palliative doctor today who was wonderful. 

Its the uncertainty of everything that is hard x sending much love x

Hi sorry to hear your mother has been diagnosed with MDS, my wife was diagnosed in November 2018 it was found by accident from a routine annual blood test that showed her platelet count was low. She had a bone marrow biopsy to confirm it was MDS, there are several sub categories of MDS. I assume your mother has had  a bone marrow biopsy to confirm her condition. If she is only having blood transfusions perhaps she has the MDS that only affects the red cells is she having a transfusion once a week?. Has your Mother been offered a Stem cell transplant, can I ask how old is your mother as my wife had a stem cell transplant aged 71 although it is more risky the older you are. The chemo cycles can be quite tough on your mother, feeling sick tired fatigue loss of appetite, all part and parcel of Chemo, can I ask is the chemo an injection in the tummy goes by the name of acercitidine once a day for 7 days?. One thing is certain it will be a roller coaster journey for your emotions, infections can be hard on your mother don't be afraid to ask the doctors any questions that may be worrying you, trust in the consultants and your mothers nursing team because they are amazing people. My wife now 72 is recovering slowly 9-12 months we have been told before she might feel well again. Never give up hope there are new drug treatments coming out all the while ask if there are any drug trials your Mother take part in. Never give up hope because that is all we can give. please come back to me if you require any further info on stem cell transplants

Thank you for your support.

Mum is 75 and told that they would not do a stem transplant unfortunately.

Hers was also found by accident when she fell at home and hurt her knee.

Yes that is the chemo injection she is having usually in her leg or tummy.

It seems that the white and red blood cells are extremely low and she had a transfusion Thursday last week and then was due another this Tuesday but due to the infection was unable to.They gave her some blood last night.The transfusions can be 2 a week.

The palliative doctor came today and said that at best she may only have 12mths left to live.Totally devastated.But we need to be positive and keep her spirits up.

Sorry to hear your mom has an infection they are so easy to pick up up when her immune system is low, visitors to her house should be put off if they feel unwell this will be hard to do especially if she has grand children. An option would be to wear a face mask especially when attending the hospital my wife still wears hers, don't worry about the funny looks people just don't understand why she should need one. always sanitise your hands with gel kill any bugs on your  hands. Try to keep your mom's spirits up constant visits to the hospital will wear you and  her down, ask questions of the doctors if there any thing you don't understand about any of the treatments your mom will receive.

Thank you for your support.