I spotted that you were looking for people who might've been diagnosed with myelodysplastic syndrome so I had a quick search around the forum. Unfortunately, I couldn't spot anyone who's active on Cancer Chat with this at the moment. Although our friendly members will be happy to chat more generally with you about your experiences, I'm sure!
In the meantime, I found an online community specifically for Myelodysplastic Syndromes which I thought might be of interest to you: MDS Forum.
Please do feel free to keep posting on here, jipster. We're here to listen when you need us.
Thankyou for reply,I am already member of MDS forum,but because what I have is quite rare it would be nice to chat to someone in same position,I have already been speaking on here regarding breast cancer for which I was given the all clear in February.
My husband was diagnosed with MDS in February. He has had 1 round of intensive chemotherapy in hospital and now on his second. We are just awaiting to see if we can find a stem cell donor. The moderator told me you were looking for someone to talk to who has MDS, but I can tell you from a partners view
Thanks for your reply,I was diagnosed two years ago,but at the age of seventy am too old for stem cell,so having other treatment,there are a few form of MDS but are quite rare so it's lovely for your reply,how is your husband and how was he diagnosed? Kind regards Christine
My husband was diagnosed in February of this year after a bout of cellulitis which showed low blood counts. He was warned about MDS, because he has something called aplastic anemia, which actually went into remission in 2015, after 11 years, but this can develop into MDS. He has high risk MDS but I can't get my head around the blasts, I think it was 10% or something like that. He's doing fine, just having a reaction to the chemotherapy, with red mans syndrome when a red rash goes all over your body and spiking a few temperatures. Last time was worse, but he's only on day 4 at the moment, but the doctors are putting things in place early to stop what he had before. Last time, he had sepsis 5 times and a really bad chest infection. Enough about us, how are you? It sounds like you also have had a bad time. How did you get diagnosed?
Hi Lindsay, your husband must be going through it,mine is lower grade and my treatment is blood transfusions and three injection a week with quite a few side effects.I had breast cancer in 2013 with radiation and my tiredness was extreme and not getting better I was back and forth to doctors they telling me I was tired because breast cancer this was going on for about two years, I knew it was not right and in the end paid private and after various tests including bone marrow biopsy I at last had a diagnosis after two years,my private doctor then referred me to my local hospital for treatment on the NHS,my problems started after radiotherapy but they won,t say if there's a connection,I am due to see my consultant on Wednesday,so that's basically my story up to now,please reply and keep in touch regards Christine.
im sorry you have had a rough time just the last couple of years. I've been to see Darrell today, we managed to have a little walk in the hospital grounds. It does get lonely sometimes, I have lots of friends and family but no one knows much about MDS and it's not nice to come back to an empty house. I'm 44 and Darrell is 59. I just deal with one day at a time, I don't think much about the stem cell treatment as I would drive myself up the wall! When we first got the diagnosis, I went into denial, Darrell is very laid back and just says whatever will be, where I am the worrier. I don't know about you, but when you tell people about MDS, people don't know what you are talking about! To be honest, when we found out in February, I didn't know anything about it, I wouldn't look it up on the internet as it can give you false information but stick to this site or the MDS website. That's the advice I can give and keep talking to people, I hope Wednesday goes alright and I'll be thinking about you
Hi Lindsay, I am the same no-one has heard of MDS so it can be a lonely place, I do have support from my husband and son ,but even when I go for transfusions or to a new group in our are called blood buddies a group for blood cancers no-one has heard of it, and because people have not heard of it you just get blank looks as though it's nothing important or not as important as some more common forms of cancer that we have all heard about and can sympathise with, anyway onwards and upwards I live in Skipton North Yorkshire ,where are you? Chris x
Hi Lindsay, how are you and how is your husband, I am due another transfusion next week as consultant thinks I may becoming immune to injections he is going to discuss mt case next week with a specialist as there is a tablet they could give me but it can actually speed things towards leukaemia so I shall have to wait and see.,but hope you are well and is hubby still in hospital or home now,take care love Chris x
