Newly diagnosed with MDS

Hi Taff1931 , I too have MDS. I was diagnosed in March 2015 after a long time with different doctors unable to diagnose it because my red blood had to drop below 100 in order to have a definite accurate result. I was 57 when I was diagnosed which my haematologist said was very young. I have since found out that's true because I have found so many people like yourself Colin who have been diagnosed at a later age.

I'm sorry to say Colin that my treatment is in no way similar to yours except that the weekly injections are working for me. I've been having them since 2015, so some 375+ thus far. Unfortunately I can't understand what you're going through but definitely it sounds pretty tough. My particular MDS is refractory anaemia, what about yours? It's quite a shock being diagnosed with MDS, it takes a while, for me anyway, to understand quite what MDS is exactly. There's a support group for MDS which can be found by doing an internet search. 

Hope you'll have not too harsh a treatment and you have a lot of good results from it. Keep in touch Colin and let us know how the treatment is working for you.

Tvman 

I was just diagnosed with MDS a few days ago, after having refractory anemia for some time. I am also 72, always travelled a lot. I am still waiting for my karyotype report so it is all still ahead of me. I wish you success with your treatment. take care. 

Hi quixote7 , so sorry to hear of your diagnosis, you have the same refractory anaemia as I have. I was given my diagnosis only after I had a bone marrow biopsy. As refractory anaemia is a type of bone marrow cancer you must have had MDS once you were given your diagnosis. 

Well anyway I haven't heard of a karyotype report so I'll Google it. 

Ok, googled it and here is the reply

"A karyotype test checks the chromosomes in your cells to: See whether you have a full set of 46 chromosomes. Having too many or too few chromosomes can cause serious problems with health, growth, and normal development, such as Down syndrome (extra chromosome 21) and Turner syndrome (missing X chromosome).8 Nov 2022"

So I've learnt something new but I can't say I'll remember it. I have my next appointment on 10th February so I'll ask my haematologist all about that report. Can you remember your haemoglobin figure? Mine is between 105 and 115 and if I didn't get Aranesp I would be way down low. Mine dropped to 82 one night and I collapsed and that led to my investigated as to why it was so low.

So it will be interesting to see whether you are given Aranesp, it's an epi pen type of injection and my wife gives it to me. I used to do it myself in the thighs but my legs became so terribly painful that it was becoming difficult to keep the needle in my leg.

I'd like it if you kept in touch and let me know how your treatment is going if you don't mind. In the 8 years since my diagnosis you're the first person I have come across with the same diagnosis. 

Take care

Tvman