New to the site

If you've just joined up and aren't sure where to start, this is the group for you. Tell us a bit about what brings you here, and don't be afraid to ask questions. Someone will be on hand to welcome you and point you in the right direction

MDS

hope58
Posted by

Hi all. Newbie hope58 here. First post and not the last! Wow what a lot of arrows and buttons and words underlined.... in front of me. Going to take a little sifting and I keep nodding off but I put that down to the morphine that I take for pain for another illness. History shows I was diagnosed with both illnesses around the same time to add to haemochromatosis and b12 deficiency. To put it mildly, my blood's a mess. And I keep nodding off lol. So, I was finally diagnosed in March 2015 with MDS. In particular it's Refractory Anaemia, which I have trouble remembering! It's a very rare illness to add to the other rare illnesses. No jokes please lol. My doctor says I'm unique in so far as the excess iron I have because of the haemochromatosis is being used to help the refractory anaemia. I'm sure the Aranesp is helping too! As soon as she said that, I stopped her in her tracks and said "*******, you already know that I AM unique!"

Well, you probably have guessed that I like a laugh even though having cancer is no reason to laugh. But it helps! So does hope, hence the username. Hope I can remember that, or this IS my first and last post lol. So anyone out there in the ether have the same bad luck and condition as me? So far I've nodded off around a dozen times and my finger has slipped over most of the keyboard, producing a very strange language!

Have I written too much? Are most of you nodding off as well? Helloooo....

rily
Posted by

Hi hope58 and welcome to the community. Really sorry to hear of your condition and the reason you find yourself here. I am not familiar with MDS and as it is rare, I don't think we have a specific group for it. I notice you have posted in the Ask a Nurse section. There you will get professional advice. I see you have mentioned the possibility of stem cell transplant. You may like to post in the Stem Cell transplant group where you can get information from the members with experience of this. Nice to see you have not lost your sense of humour. Hope all goes well. Best wishes.

Thehighlander
Posted by

Hi hope58 and a second welcome to the Macmillan Community and I am so sorry to hear that this body you have to live in is giving you some problems. I do like your forum name, Hope at times is all we have - but it is a good place to build from.

As with we are volunteers for Macmillan so we are not medically trained but we are patients and cares who are traveling different Cancer journeys. One of our aims is to be around to help new folks get connected with people going through some of the same issues as you have.

MDS along with your other problems will make you a handful for the medical world. I have a friend who has MDS but she does ok as this is her only medical issue.

 has highlighted the SCT forum. I sort of hang around that group as I have had two Allo SCTs over the past few years. There are a number of people on the forum who have MDS and have went on to have successful SCTs. So please join the group and introduce your self. So you don’t get lost in the middle of threads, hit the ‘Start a discussion’ link near the top of the forum home page and get going.

Macmillan has a good info page on SCTs. You may also find the Cancer Research UK MDS a good place to hang out as it also looks at SCT as a way forward.

Following my second Allo SCT my All New Bone Marrow was being attacked by GvHD (My body was trying to kill off my new cells - but don't tell my brother;) and I was having problems producing Red Blood Cells so I was getting transfusions for a few months to keep me going but it all kicked back in again. Interestingly my trigger point for starting transfusions was 80 or below.

A SCT is a mission and a half and should never be undertaken lightly and must be entered into with no regrets. But the rewards can be great. The best way to understand a SCT is when you do a ctrl/alt/del on your computer..... the amazing and bizarre world of SCTs

I look forward to seeing you on the SCT forum.