MDS 5q Deletion

[artistanne]

Hi everybody just want to say hello.
Recently diagnosed with MDS 5q del. Is there anybody out there will same illness would love to talk to you.y
I have so many question to ask, bit lost at the moment was orignally diagnosed with a short time to live, but my new diagnosis of 5q deletion means i can have treatment and have a better outlook than previously thought. I am so confused b all the the terms and medical jargon that my head is just lost with it all. Please help advice needed
.

[christina]

Hi Tina here, I don't have the same MDS but am sure you will have loads of replies. I was at a Forum in Brighton last week and am sure there were a couple of people with your condition in fact one of them was a great lady of over eighty who was just planning her trip in her caravan to France and hadn't long recieved a degree, she was an inspiration to us all, Sophie is always there and will give good advice, I have found sharing it with others is a great help so good luck am sure you will hear from many nice folks, regards Tina (Christina)

[edmcd]

Hi
I was in exactly your position 6 years ago. When my chromosone analysis came through confirming 5q- my prognosis changed from a few months to years. For 3 years my Hb was stable around 9.5g/dL and I did not require any treament interventions. My consultant said I was running on 3* fuel instead of 5*. Only my Red Cells are affected by the disease. 3 years ago I had coronary artery bypass surgery and since that I have needed blood transfusions approx. every 8 weeks. In a few days time NICE will be appraising Lenalomide for the treatment of 5q- and hopefully it will be approved for use in the UK. I have been trying unsuccessfully to get funding for this drug through my HCT and through my local MP for some time. If you are not familiar with this drug (Trade name Revlimid) look it up online. It has been working wonders for 5q- patients in the USA for some time.

If you have to get MDS then 5q- is the best type! Chances are you will die of something else!!!!

Best wishes
Ed.

[Sarah Reakes]

Hi Artistanne,

I have already replied to you under another topic regarding the problems you have been having in access to treatment with Revlimid from your hospital, but I'm just back from holiday so catching up on all the postings that have come in since I have been away, and have come across yours. Welcome to our Forum

I also have 5q- and was diagnosed two years ago today - what an anniversary to remember: 14th June 2011? I was also initially given a potentially poor prognosis because at that stage they only knew I had MDS but couldn't say which sub-type until the results of my chromosome culture (cytogenetic test) came back and following a second bone marrow biopsy, thankfully my future then started to look much less bleak. Having read yours and edmcd's response, I can't understand what is to be gained by the medics putting patients through hell by giving them the worse case scenario when the simple answer is they just don't know yet! Why say anything, what's the point until they have a definitive answer?

Anyway, I am not undergoing any active treatment but simply being monitored with blood tests every four months which are pretty stable (although my neutraphils have dropped to their lowest since diagnosis), but my HB is holding up well. At diagnosis, my Haematologist told me about Lenalidomide (Revlimid) and that this was the drug he would prescribe once I became blood transfusion dependent.

You do not mention where you live or where you are being treated. You also mentioned that you were going to start treatment with Revlimid so does that mean that you have become transfusion dependent? Hopefully the NICE awaited decision will be forthcoming soon!

By the way, you can attach a signature to your postings to appear routinely every time you post, which does help us to identify the person writing ie: when they were diagnosed, their particular MDS sub-type, their age, their treatment, where they live, etc, etc - I think Sophie has posted some guidance on how to do this.

Look forward to hearing from you.

Regards

Sarah