Coping with diagnosis

Hi Crazymum21, so sorry to hear that you have been diagnosed with MDS. I was diagnosed at the age of 57 and was also told that I was young to have it, I'm now 64 and I have treatment every week which is by self injection of something called EPO and what that does is encourages my bone marrow to produce more red blood cells, although in the last year or so I've had concerns about my neutrophils and more recently, my platelets. I have read up a lot about it, even joined an MDS help group called MDS UK and they are very good, a great resource of MDS knowledge. I have been sent a lot of booklets etc to give to my GP who knows little of it because I read that a GP will have only 1 or 2 people across their threshold in their lifetime! 

MDS is a very rare blood cancer and yes it's treatable but not curable. My haematologist has told me that my condition can change to an agressive leukemia but only in a small percentage.

I hope I've given you a little consolation that I have been diagnosed some 7 years ago and I'm still around. Try to stay positive, Crazymum and I look forward to hearing from you for a few years yet 

Tvman x 

Hi there thank you so much for your reply it gives me a lot of hope. My grandson is one and I want to see him start school.I am on the EPO injections weekly my daughter gives me them how do you find them do you think they help. How many are you to have I have been given 6 a few weeks ago almost immediately after I was diagnosed and have had four there’s still 2 in fridge. Sorry asking so many questions.

I see consultant next week to decide whether to continue on injections and if they’ve helped.my daughter says I’m rough for almost 2days then I’m fine I find injections help hb it’s now up to 101 but platelets have dropped by 22 to 44 and white blood cells are 1.1 

I was also told this could develop to leukaemia but won’t with me because of my prognosis.consultant says I’ve had it a long long time and it was only by chance I found out. I have fibromyalgia and for years that’s what tiredness was put down to and so wasn’t investigated.

you have settled my mind a lot and I don’t feel so alone now and you’ve made me realise that the things I want aren’t impossible and I may actually see Noah start school 

thank you so much 

crazymum21

Hi again Crazymum21

You're welcome, Crazymum21, you are the first person I've met who also receives the EPO injections in the 5 or 6 years I've been on this site. Are your injections Aranesp? I have found that yes, they do help. I used to inject myself, over a 4 week period I injected into left leg, right leg, left arm, right arm, then continually repeat.

However, after about 4 years my legs began to get so painful that it was so very difficult to keep the needle in and my wife now injects in alternate arms weekly. My Aranesp dose is 150 micrograms and yes it keeps my haemoglobin at around 100-115. After the first year or so, my Aranesp dose was reduced to 75 but my haemoglobin level dropped below 100 so that decision was hurriedly reversed. I have my Aranesp delivered to my house every few weeks, depending on the gap between appointments which is usually around 8 -12 weeks.

I'm very happy to know that I have put your mind at ease a lot, I'm relieved that some events I thought I would never see have actually happened. I hope the same occurs in your case.

Take care and stay safe crazymum21 

Tvman x