Hi, I have just been diagnosed with Myelodysplastic syndrome ('MDS'), after investigations for anaemia. It is apparently low risk, and I’m on active monitoring. Waiting for EPO blood test results to see whether that will help with tiredness/breathlessness.
Has anyone been diagnosed with this for a while who can give me some idea of their journey. I know everyone is different, but I feel a bit lost,.with not getting treatment. Thank you
Hi @Leew67 welcome to the Forum, though I’m sorry it took a few days to get back to you, and about the diagnosis that brings you here.
Being told you have a blood cancer but don’t need treatment straight away is a strange place to be, and feeling lost is such a common response to it. We’ve a page on active monitoring for Myelodysplastic syndrome ('MDS') that includes some personal stories from people on watch and wait themselves, which you might find useful: Active monitoring for MDS.
Hopefully some of our members who’ve been on watch and wait with Myelodysplastic syndrome ('MDS') for a while will see your post and share a bit of their own journey with you. I’m going to tag a couple of members who’ve been navigating similar territory recently - @Hepzibah and @Dance101010, so hopefully they’ll feel able to share a bit of their experience if they’re able to. (Please don’t feel any pressure to respond, but if you are able to contribute, it’d be very much appreciated.)
The MDS UK Patient Support Group can also be a good way to connect with others specifically going through Myelodysplastic syndrome ('MDS'), including local support groups.
Our Support Services team is there too if you’d like to talk any of this through - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Do let us know how you’re getting on, and take care,
Ceri - Blood Cancer UK Support Services
Hi Leew67
I was diagnosed partially with Myelodysplastic syndrome ('MDS') 8 or 9 months ago. I say partially because my diagnosis is actually Complex Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') so, as far as I understand it a cross over between the two. I have known for much longer that I have Eosinophilia - white blood cells off the charts.
For a long time I was having very regular blood tests and Haematology Consultant appointments, but as my physical condition hasn’t changed and the more recent blood tests were ‘odd but normal for me’, that is to say there was very little fluctuation, I have been put on Watch and Wait. I expect my next appointment probably in the next month or so.
I am someone who likes a name/label for an illness so I know what I am dealing with, or at least I can attempt to understand it. Unfortunately, I have found much of the information (and to be honest there doesn’t seem to be that much for certain blood cancers) to be too scientific/way over my head. So, having got a ‘label’ I found myself very lost. Suddenly, I was faced with the dreaded ‘C’ word, no treatment, little to no information, and a Watch and Wait situation. I didn’t feel abandoned, and I trust my consultant, but I did feel in limbo for a while until my brain accepted this course of action. Obviously, if I had an obvious change in physical symptoms then I could get an appointment for a fresh blood test and consult, but thankfully it hasn’t come to that! I should add that to date, I’ve not really had any of the known symptoms, or at least not ones that can’t be logically explained away for a woman of, let’s say, maturing years. I was encouraged to visit my GP because of a sudden loss of a large amount of weight, and that was what set the new search for what was going on with my blood. (I’ve always had a battle with weight but I wasn’t actively trying to lose any at the time. Sadly, the weight loss has stopped and realistically I could do with losing a lot more! Strange how life works out!)
Sorry, that’s all a bit long winded. I fully understand your ‘lost’ feeling, but I would encourage you to take it as a positive sign. If your symptoms change, or you think you are waiting a bit too long for your next appointment, reach out to your Specialist Nurse if you have one, or the consultant’s PA - I recommend putting your concerns in an email, and then if you are not comfortable with the response, request a face to face.
I hope you’ve managed to put your mind at rest a little.
Thank you, for your reply. It has been really helpful. Take care
@Ceri_BloodCancerUK
Thanks for the link to Myelodysplastic syndrome ('MDS') UK Patient Support Group. I don’t think I’d come across that one before so will now add it to my file.
Hi ! It’s confusing and worrying isn’t it? I have single lineage Myelodysplastic syndrome ('MDS') low risk, so I am severely neutropenic. I miss being able to swim. I also have psoriatic arthritis which is apparently linked. Fortunately I am with Kings for both now. Do get to a centre of excellence if you can. I also recommend the Myelodysplastic syndrome ('MDS') patient Support Group. They helped me enormously on diagnosis. Best of luck.
Hello again @Evelyn61, lovely to hear how you’re doing now, although of course wouldn’t it be great if we had no need to find the forum in the first place?! I’m so glad the Myelodysplastic syndrome ('MDS') patient support group has been so helpful, I’ll add the link again here for others who might find it useful: https://mdspatientsupport.org.uk
Have your specialists said whether you can get back to swimming? Maybe there’s a lower risk way to use a local pool? Sometimes I find even paddling in a river/lake can sate my swimming desire, but it’s certainly not the same as a proper swim.
I hope you find a way to keep moving in ways that benefit you @Evelyn61, please keep us posted about how you get on and what works for you.
Hello Duncan! Thank you, unfortunately I have no idea about the swimming, I have severe neutropenia already but I have just started injecting myself with a biologic medication for my arthritis which lowers my immunity still. The idea is that once the inflammatory arthritis is under control it will help my bone marrow. I do go for a few local walks when I can, and I paint. Thank you for reposting the Myelodysplastic syndrome ('MDS') support group link. Their team are so accessible and helpful.
You’re very welcome @Evelyn61, the more the merrier I reckon! It’s so great that there’s a group for folks living with Myelodysplastic syndrome ('MDS'), I think I found it first via dear @ChrissyD.
I wonder if you’ve picked up on the link between Myelodysplastic syndrome ('MDS') and Chronic myelomonocytic leukaemia ('CMML')? I’m certainly no medical expert, but it seems like these 2 disorders have a lot of overlaps from what I’ve read around the forum. There’s this great thread on the forum from others living with Chronic myelomonocytic leukaemia ('CMML'), like @ChrissyD, which may be of interest: CMML - A rare diagnosis
If you’d like to reach out to others, like those in the thread linked to above in red, just add an @ before their username and they should get a notification from you.
As for that inflammatory arthritis, I do really hope that settles down. I get inflammation too and find that my diet helps, being mostly vegan. My haematologist asks me to always pass any changes in my diet and supplementation by him as there are some herbal remedies that can negatively interact with treatment, for example the St John’s wort I used to take, and my former multivitamin with iron was a no-no. I’d say it’s always wise to check what we put into our bodies with our main specialist, just to be sure. Once I’d stopped taking that multivitamin my blood cell numbers stabilised faster.
I’m glad you’re able to get out walking, this is my main exercise and I love it—my dog too! As for swimming, I might be tempted to ask your specialist about any risks of attending public pools, saunas, hot tubs, natural hot springs, float tanks… Maybe these would be okay despite the neutropenia? Always worth trying to find ways to maintain our hobbies and favourite pastimes, even if there have to be slight adaptations.
Do have a further look around the forum @Evelyn61 as you’ll find other creative members who share writing, artwork and photography. Our creative pursuits can really support us in tolerating these diagnoses, or expressing how we feel about them at least, so I’m glad to learn that you paint.
Keep us posted about how you get on @Evelyn61!
Thank you so much Duncan. I will do some more exploring. I can’t walk for too long but I have a favourite circuit which gives me painting inspiration. Regarding the swimming, my rheumatologist would love me to carry on, as would my physio, but unfortunately haematology at Kings have told me to stop as the infection risk is too high. Hopefully in the future I will be back in the pool and jacuzzi! Thank you for all the other links and info, that is so helpful. All the very best to you Duncan.
Hi Leew67.
I have just posted after a recent diagnosis of Myelodysplastic syndrome ('MDS') with a higher blast rate. I’m 52 years old so quite a shock but am keeping positive and as active as possible. I have had multiple bone marrow biopsies, Echocardiograms, Lung physiology test, my HB as been as low as 56 at the beginning and sits steady at around 80-85 after treatment, however, I am making sure I go out for a walk every morning, try and keep as healthy as possible if you can, I know it is very tough and easy to get down in the dumps, tired and think “why me” but stay strong my friend. I am with the HCA and Christie Private Care which has been amazing and I know I am very fortunate to have this through my work. I recently finished treatment of a combination or Azacitidine and Venetoclax in August, this killed my leukemic cells and I now have a transplant date for a double umbilical cord stem transplant of the 14th October.
You’re definitely not alone, it is a massive shock and a horrible and somewhat complicated disease and I am wishing you all the best and hope you get some answers soon.
Thank you for your reply. It’s great to know you are having such good treatment, at the moment I don’t need any, but it’s good to hear there is so much out there. Take care
Hi @Leew67,
Really glad you’ve had so many people share their own experiences with you here. All given such a good sense of what watch and wait can look like, in all its different forms - thanks everyone!
Do keep posting as things develop, whether that’s with more questions or just to let us know how you’re getting on.
Take care,
Ceri - Blood Cancer UK Support Services
Hi Leew67
I was diagnosed with Myelodysplastic syndrome ('MDS') about 2.5 yrs ago now resulting from blood tests following an unrelated operation. At the time, the only unusual symptom for me had been increasing breathlessness.
It was later assessed that I probably had Myelodysplastic syndrome ('MDS') for about 5yrs. As it progressed, I have experienced other recognised indicators: bleeding mouth/gums, bone and joint ache, itching, bruising, breathlessness and fatigue. I was told that at my age (82 at the time), that I was too old for bone marrow transplant and blood transfusions. I am on “watch and wait” and may go on chemotherapy if and when the Myelodysplastic syndrome ('MDS') symtoms get to a level where it may be beneficial, but for the time being, with my agreement, only take some pain killers to manage the situation. For me - and I believe for many others, the worst symptom is the extreme fatigue. Not to be confused with tiredness, it stops me doing anything and I just sit it out. No energy to do anything. It does pass but is very frustrating not to be able to do anything while it persists.
People that don’t know what you are going through think I appear quite normal. Fortunately for me, the Myelodysplastic syndrome ('MDS') is slow to progress and takes me time to do things, especially getting about - and getting older may also have somethimg to do with that! I continue to have numerous blood tests to monitor the situation and an annual meet/review with the Consultant.
I do believe that talking about it with famiy and friends and a positive attitude really do help. Although I do recognise this is not easy for everyone, I am also one of those who like to know all about what is going on and likely to happen as things develope.
Best wishes.
Mike
Hi
Thank you for your reply. It was increasing breathlessness that took me to the Dr, and thankfully she was thorough and not dismissive.of.my symptoms. I’m due to start EPO next week, and Will be interested to see if that helps with.my symptoms,.otherwise it’s watch and wait. I’m hoping it progresses slowly.
Hi Leew67
First time on here so please bear with me, not too good with computers. I was diagnosed with Myelodysplastic syndrome ('MDS') in April this year. I am low risk and so far it is watch & see. I was started on EPO in May, I can tell you for me it has helped but it is slow progress. I still suffer from Fatigue & breathlessness, but I have noticed improvement. I have bloods done & a consultation every 8 weeks. My red cell count is going up but my Platelet count stays around 32. I know we are all different I now look at it each time I have a consultation, that if my consultant isn’t overly concerned then I am not. I hope this helps you in anyway possible. X
Hi,
Thank you for this. I started on EPO yesterday, and am hoping it will make a difference.
Hi @Cathy62 and a warm welcome to the forum.
I’m sorry to read about your diagnosis. Never easy.
Platelets are low. When I had intensive chemotherapy and a donor Stem Cell Transplant Platelets dropped to single figures.
After discharge from my Transplant they tended to only do Platelet Infusions if number dropped below 20
As you correctly say everyone is different and I’m sure that your team will monitor things closely.
You will find that everyone on the forum is very supportive and happy to share experiences.
Take care
Hi @Leew67
I was on EPO injections for quite a while and found them effective and needed blood transfusions a lot less frequently.
Fingers crossed 
that it will be similar for you
Take care
Hi Duncan thank you for the welcome. It has taken me since April to come to terms with my diagnosis. It’s a lot to take in, I didn’t have time to be ill because I care for my husband who has Dementia, I worked full time so no time for myself. I was at UCHL in August & the consultant I saw was lovely she put my mind at ease explained everything to me in a way I could absorb. She told me that if my Platelet count got to 10 then they would look to other treatments. I would be viable for a stem cell transplant & luckily have 2 sisters who are complete matches. So if the worst happens we have hope. But in the meantime I have accepted it is what it is & it’s out of my control. Thank you for your kind words they mean a lot.