Hello!! I would like to hear from fellow people who have Myelodysplastic Disorder, and what was your experience with symptoms, diagnosis and treatment?? Also have you also got an enlarged spleen? I’ve been trying to find information online if MDS makes spleen enlarge but I can’t really find much!! My spleen is 20cm and has caused portal hypertension and varices!!
Welcome to the forum. I’m sure, like me, you’ll find this a really helpful and supportive environment where you can interact with people who are experiencing similar challenges.
I also have MDS. My particular version is trisomy 8 (that’s the genetic abnormality where I have an extra 8 chromosome) refractory cytopenia, specifically neutropenia. I also have an enlarged spleen. Fortunately I’m in a low risk category and my treatment currently involves biweekly filgrastim (GCSF) injections which I administer myself. I also have to be careful about avoiding picking up infections and avoid anyone who’s ill and carry antibacterial gel which I use when I touch surfaces such as door handles etc. So far this has worked well although I have been hospitalised a few times as a result of infections including an unfortunate brush with sepsis a couple of years ago. I’ve managed to avoid anything too serious in a couple of years now so the GCSF is working well. I have a really excellent consultant and MacMillan Nurse and I have my blood monitored every 12 weeks at the moment. I also belong to a fantastic GP practice who work closely with my haematologist in terms of managing my condition. I’ve also managed to keep working although I do have some issues with fatigue and periodic nausea but other than that I am pretty lucky and am having an easier time than many.
In terms of my diagnosis I had issues with infections and low white blood cell count for around 12 years and it wasn’t until I moved to a different part of the country and came under the care of a different haematologist that I was finally diagnosed following a bone marrow biopsy. I know this is quite typical as MDS is quite rare as you said yourself.
Sorry about the length of the message but I hope some of this is helpful. Also please let me know if you have any questions or need any advice etc as you go through this. In the meantime try and enjoy Christmas and the New Year.
All the best,
Hi, I am sorry I cannot help but I have asked the other Bloodwise Ambassadors to see if any of them can help. We are all here to support you on this community forum as we probably share some similar questions, anxieties, thoughts and feelings and also some symptoms. Your images say it all, take care.
I forgot to say that an enlarged spleen seems to be a common symptom with MDS patients. The details on Wikipedia about the condition are quite detailed and I found them helpful.
Hello peter, thankyou for your reply, i am still awaiting my genetic test results to see what risk category i will be placed into, my consultant did say that i don’t have any excess blasts in my blood which is a massive relief!! only 2 blood lines are affected my white blood cells and my platelets, my wbc count is 1.1 and my platelets are 42,000, my consultant said depending on what my results are treatment will either be chemo or a stem cell transplant, my spleen is 20cm i have lost 1 stone in 6 months have got enlarged lymph nodes and have night sweats, peter did you suffer from these symptoms too before treatment? the weight loss and sweats and enlarged glands?
you did mention you have an enlarged spleen too may i ask what size is it? mine is that big it has caused portal hypertension with varices in my esophagus and attached to my spleen!! :(( sorry as well for making my reply so long winded too its just a relief to be able to talk to somebody else who has the same condition because its so rare!! :((
also peter i was wondering if your consultant has offered you the option of a stem cell transplant in the future?? because i think they go up to higher ages these days? merry Christmas to you as well peter and yes i will try and enjoy it i suppose we have to don’t we even with the weight if the world on our shoulders!! :((
4 posts were merged into an existing topic: Hi ppl New here && recently diagnosed
That’s very positive that no excess blasts were observed in your blood sample. Hopefully you’ll get positive news back from the cytogenetic tests. They classify the various abnormalities under low, intermediate and high risk categories. Although trisomy 8 is seen as an intermediate risk, over all my IPSS-R score has me as a low risk. IPSS is the International Prognostic Scoring System that the medics use for scoring the overall risk classification of MDS patients and your consultant may discuss this with you.
I’m not sure what size my spleen is but each time I have an x-ray or CT scan Splenomegaly is noted on the radiologist’s report. I don’t think it is extensive as I’m not having any noticeable issues with other organs in the area around the spleen. I do get periodic discomfort in my left shoulder which is also a symptom of an enlarged spleen. I’ve had no issues with lymph gland swelling to date. I also lost around three stone after my diagnosis but a lot of that was due to me cutting out sweet things and I was three stone overweight. The weight did come off pretty quickly but I’ve been able to maintain a sensible weight for my height since. As the filgrastim has managed to keep my WBC between 3 and 4 my consultant isn’t considering SCT at the moment. I was in my early 50s when I was originally diagnosed and if necessary it would have been an option but at the moment I am happy with the approach that is being taken by my medical team.
My wife is a microbiologist (who has expertise in bacteriology) and she has given me lots of advice about avoiding infections. In addition to obvious ones like avoiding contact with people who are ill she told me to use antibacterial hand gel when I’ve touched any surfaces such as door handles or hand rails etc. I am also very careful about what I eat as well and avoid bioactive yoghurt, salad that I haven’t prepared myself undercooked meat and certain cheese. Bloodwise have a really good booklet on the neutropenic diet that you should order. They also have an excellent one on MDS. MDS Patient Support UK also have a really good booklet as well which you can access at the following link:
I see from your profile you’re based in Birmingham. The Queen Elizabeth Hospital in Birmingham is one of the specialist centres for MDS so you’ll be in excellent hands there.
Make sure you look after yourself both physically and emotionally. I find this a really good site where people who are going through similar experiences can support each other and understand what we are experiencing. Everyone here is always happy to provide advice and give support and I know I find it really helpful.
Take care and have a good Christmas and please feel free to post any questions you might have.
All the best,
Yes, Peter, and @mozza1 you have really shown the value of this community forum. As for trying to avoid infections, and I do follow your guidelines, but I find it is also trying to find a balance with living life. I do go on public transport, but try to face the windows and I hold my breathe or breathe out when someone coughs or sneezes. As soon as I realise someone is contagious I am off. Thanks for your questions and answers, I think we all learn from them, no matter what blood cancer we have. Take care of yourselves over the festivities and try and take some ‘you time’.
Apologies for the delay in getting back to you. From memory my WBC has varied between 1 and 4 over the last few years. Since I started the filgrastim around two years ago it has stayed stable between 2.5 and 4 (neutrophils between 1 and 2) which my haematologist is happy with, so the filgrastim is working well for me.
Also please don’t worry about posting long messages or asking questions, that’s what we’re all here for. There is a lot to get your head around when you get a diagnosis such as MDS and with it being rare it can be difficult to get information. That’s why resources such as this forum are so important so please feel free to keep asking questions etc.
I hope you enjoy the rest of the festive season.
All the best,
Hi Peter and Beckie, Peter, your second paragraph says it so well, we are all here to help and support each other on this community forum so please keep posting both of you, you are actually helping so many people on this community forum because I have found we have similar questions, fears, thoughts and feelings. Take care both of you.
Hello Peter, no worrys for your late reply, im sorry for my late reply too, im glad to hear your wbc are good levels compared to how they was before, my overall Neaut count is 0.7 which is very low i know, i will know 2 weeks today the 16th Jan what my prognosis and treatment will be because my genetics will have come back by then!! i will have to let you know how i get on Peter, whether a stem cell transplant will be recommended?? or chemo instead, i have written questions down ready to ask my consultant ready for the 16th because i usually go in not having a goods night sleep because of worry and i forget to ask important questions, yes im very grateful for this forum for support and information, im also thinking of buying a book on mds too to give me more of an idea of the ins and outs of it, anyways peter i will speak again soon and hope you are doing well too with your mds, take care Beckie.
Thanks for your message. I hope you get some positive news on the 16th and do let us know how it goes. I agree it’s a good idea to write down questions in advance. It’s also a good idea to write down any answers as I know I sometimes forget everything that is discussed.
All the best,
Hi Beckie. I wondered if you are aware of the information on the Bloodwise website “Eating well with Neutropenia”? If you go on the Bloodwise website and look for Patient Information Publications, and then the subsection “Living with Blood Cancer” you can either download or order the booklet. You may prefer to order the booklet as you will find it useful whether you have chemotherapy or a stem cell transplant, and may use it to dip in and out of. I hope all goes well on the 16th. Have a relaxing bath and a cup of hot chocolate or warm milk the night before, and we are here if and when you need us. Best wishes
Thankyou Louise!! I’m gonna read eating well with Neutropenia after your recommendation i’m very thankful for all the advice given to me!!
Beckie, we are here to help as much as we can. We try to make each person’s journey through blood cancer as easy as we can, with information if possible, and kind words. Take care
I hope you get some positive news at your appointment tomorrow. Please let us know how you get on.
All the best,
Just wondering how you are getting on.
All the best,
Hi there I have just been diagnosed with MDS excess blast 2 and any help or advice or your stories would be really helpful, I am so in shock as it was just a routine FBC that found this and i did not realise i was actually ill, although now a few symptoms have come to light !
Hi Ya @nicolas, a great big welcome to our forum, I am so glad that you have found us, I find this forum a great support and I hope you will too.
I won’t say any more here as I have answered you other post.
I really do look forward to hearing more about you, take lots of care of yourself, spoil yourself, you have had a great shock and we all know how that feels.
Hi there I have just been diagnosed with Myelodysplastic syndrome (MDS) excess blast 2 and any help or advice or your stories would be really helpful, I am so in shock as it was just a routine FBC that found this and I did not realise i was actually ill, although now a few symptoms have come to light like my hip had been hurting for a while and i was getting a little out of breath, I just thought I was unfit after lockdown. The Doctors want to take me in for maybe 4 weeks to blast this, how have people found the treatments so far ? thank you any help greatly received.