I’m not sure what I’m looking for here. My son lives in Canada with his wife and two young children. He has just been diagnosed with Myelodysplastic syndrome (MDS) & MPN overlap. I don’t have full details of the particulars yet, which I know would influence prognosis. It’s only been three days. I’m aware that these are two rare blood cancers with a risk of transitioning to leukaemia. He’s having regular anticoagulant injections with a plan to commence Interferon in January. Stem cell transplant and chemo have been mentioned if and when but I don’t think those are imminent
I’m trying hard to support him and his wife - we are all sooo close - but it’s hard over video calls and with Covid / travel complications.
Everything I’ve Googled and YouTube videos seem to be mainly US/European and confirm that there is little known or available as treatments. I know there is a huge amount of research into these rare conditions. I can’t find any info on the Myelodysplastic syndrome (MDS)/MON overlap on any U.K. sites.
As I say, I don’t know what I’m looking for at the moment. Perhaps anyone in the U.K. who might have some knowledge/experience…. I recognise that every case will be unique.
I’m so sorry you’re having to deal with your son having a diagnosis like this, and from a distance too. It must be so hard for you. And it’s very early days yet, so you must all still be shocked as well. And so near to Christmas too. It’s a cruel set of circumstances. I’m wishing you all strength and positivity for the next few months ahead, as you come to terms with it and he possibly receives treatment (as opposed to Watch and Wait.)
I’m afraid I can’t help you with the overlap, but perhaps someone on here can. Or you could try the helpline. I hope someone can help on that front.
I was diagnosed with Myelodysplastic syndrome (MDS) in Aug 2020,and they told me I’d need chemo and then possibly a stem cell transplant, and they informed me one third of Myelodysplastic syndrome (MDS) patients go on to develop acute myeloid leukaemia. However, a few days later they revised my diagnosis to Acute Myeloid Leukaemia - I had already tipped over. This made little difference to the treatment though - it was still chemo and then possibly a stem cell transplant, which I did go on to have (in January this year.) And I’m feeling amazingly well now, if that helps put your mind at rest a little. A doctor said to me: ‘Acute Myeloid Leukaemia is eminently treatable,’ - a phrase which I clung on to for dear life throughout the treatment process, and here I am, bursting with health, energy and a zest for life less than a year on from the Stem cell transplant. Please take heart.
It might be that the other condition requires a similar treatment approach, or that both conditions require less treatment for now. The chemo and Stem cell transplant are, I believe, the most gruelling and intense treatment options, and they are not without their risks - but they are effective. So I hope should your son be offered these, you don’t feel too panicked at the thought.
I’ll be thinking of you all as you go through these first very difficult days. Please let me know if you want to hear more about chemo and Stem cell transplant, should your son be heading that way.
All the very best to you.
Hi @JC000, I am so glad that you have found us, The Blood Cancer UK has a lot of information on it, but I am very aware that different countries approach diagnosis, tests, research, trials and treatments in very different ways.
Also consultants take so many different aspects when making a diagnosis and way forward plan.
You might be able to assist your son if he is asked any family history questions.
I have a different blood cancer and I was diagnosed 18yrs ago, exactly at the same time a friend of mine was diagnosed similarly in the USA, she was immediately treated with chemo and radiotherapy and I wasn’t and still have not been.
Personally I would say, and I know it is so difficult as a mum, the best thing you can do is just be there, from afar, for your son and family via video, so they can say how it is to be them at the moment.
I have found that there is nothing worse than having someone saying that you ‘should’ do or say this or that etc.
In this day and age I know it is difficult but I would advise against too much googling.
We are here to support you as is the Blood Cancer UK support line.
The important thing is that you look after yourself and keep posting.
I can’t tell you how much your reply has meant to me. To hear from someone who actually ‘gets it’ rather than the impersonal info I’ve found so far from googling is truly heartwarming. Thank you for your openness, honestly and (appropriate) positivity. I’m so pleased to have found this group. It already feels like it’s just what I need at the moment. Information is power. With every good wish to you.
Oh wow, you too understand. Such a lovely message of information, personal experience and empathy. Thank you so much.
I recognise that at the moment I’m trying to tread especially carefully and be fully respectful of where my son and his wife are at. For example, my daughter (also UK) really disagrees with his decision to try traditional Chinese medicine - and has told him so (siblings, eh?). It’s done with love and I know she’s frightened for him. But I believe that each person must be empowered and respected to make their own choices. I’ll continue to referee
As you say, medical approaches differ in every culture/country. So far, he’s had superlative care and attention.
One day at a time ….
Thank you so much.
Yes, I found that other people’s positive stories really encouraged me- and there are so many positive outcomes to hear about. It’s so easy to stumble upon a terrifying phrase or statistic as you Google for information.
I wonder if there is a Canadian blood cancer forum too? You’d get a better idea of how they approach treatments, and what your son might be offered. Although I’m sure he’ll hear very soon.
I hope he’s bearing up. The first week or two I found very hard, especially being at home during the holidays, trying not to let my teenage son see me having a wail and a blub. I probably should have just wailed and blubbed!
Sending positive thoughts out to you all.
I know, some scary possibilities. I’m trying hard to focus on the others or I just crumble.
The Canadian centre is a good idea - I’m currently checking out what’s in Vancouver - their nearest major city.
I watched a good interview with an expert on Myelodysplastic syndrome (MDS)-MPN Overlap, based in Houston. It was on a group called Patient Power. I appreciate that people don’t ‘pull any punches’ - it is as it is. He recommends finding a specialist centre because it’s just so rare. And 90% of patients are 60/70s++… such bad luck for my son!
Anyway. I can imagine your first weeks too…. a terrifying time. I think however someone manages to find a way through it is right for them, no “shoulds” or “ought to” I tell my son. Whatever you need to do or not do. I appreciate you sharing your experiences, it’s helpful.
As you say, it is early days. I’m sure we’ll learn more about treatment and the specifics of his condition when he does.
I’m so sorry to hear of what you’re going through at the moment @JC000 , really glad you’ve found this forum and that you’re already feeling supported by the lovely people on here above. Please don’t hesitate to give us a call if you want to talk things through with us. Our support line number is 0808 2080 888. I just also wanted to let you know of our counterpart in Canada, just in case it’s useful for your son and his family at this time. Here’s one of the support services they offer - Access one-on-one personalized support | The Leukemia & Lymphoma Society of Canada (llscanada.org).
That’s such great information. Thank you SO much. I would hope the medics over there might signpost him, but I assume nothing. It’s so good to have the info to pass on
And to hear about the phone number here in the U.K. - again, thank you. I’m reluctant to make this about ‘me’ , despite the many posts I’ve already posted (). But I am struggling and it’s so amazing to find people who understand. I may cave and call the number sometime. Thank you
@JC000 Blood cancers are family illnesses for every one person diagnosed there is a ripple effect of family, friends, co-workers, acquaintances etc. also affected emotionally, thoughtfully and perhaps practically.
This forum and the Blood Cancer UK support line is here for you just as much as for your son.
We are a supportive family on here, you must still all be in shock plus having all the maternal feelings and the feelings of being separated as well.
Personally I think it is so important that you be kind to yourself and look after yourself at this time.
I’ve tried so hard to hold back tears Erica, fearing I’d never stop. But you’ve really broken through. What a lovely thoughtful caring message. I’ll take on board all that you say thank you
Hi @JC000 and welcome to the forum. I was just reading through the replies and you have been given some great informations and have been shown how great the people are on this forum.
I know my husband and family and friends found it so tough and they lived close to me so I can only imagine how hard this is for you all. I bet all you want to do is give him a hug.
This forum is such a great place to share what you are feeling, ask those questions and just offload. The helpline is great as you so don’t forget it’s there if you need it.
Sending lots and lots of love X
Thanks Nichola, that means a lot. Yes, it’s so hard being so far away. We’d already booked a trip for mid Feb (if Covid allows) for their son’s 2nd birthday (our youngest of 8 grandchildren). We haven’t seen them since he was just born- and we had to cut that visit short due to the first Covid lockdown. So much heartache… I’m so glad I’ve found this group. I know it’s very early days but this feels like a lifeline to clutch on to. Thank you everyone
You might find something here: https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=98275
Thank you so much. I’ll have a look.
Hi, I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap in fFebruary 2021, and have never heard of any other patient. I am 78 years old, so much luckier than your son. I am presently being treated with Aranesp injections for the Myelodysplastic syndrome (MDS) and Hydroycarbamide for the MPN. My haematologist tells me that it’s all a matter of balance. I have my next consultation next Wednesday (Jan 5th)> Tell your son to keep a good diet and exercise. It’s very hard coming to terms with the diagnosis. I find that using an app called Headspace helps my mind - you might find it helpful. My GP uses it daily and it helped my son -in- law when he was diagnosed with Parkinsons at the age of 51
Thank you so much for your reply.
It really does seem to be a rare and complex condition- it means a great deal to hear from someone else who has, unfortunately, received the same diagnosis.
I was very interested to read of your current treatments- thank you.
I believe that whether 78 or 41 years it is an awful diagnosis and I want to sincerely wish you well.
For my son, it is very early days. Everything seems unreal at the moment. He was diagnosed on 16th December and then the Christmas/New Year holidays mean nothing more is happening… they’re currently snowed-in in Canada, with their two young children. Everyone on here will understand what the shock and the first few weeks and months are like.
Anyway, I’m so grateful that you replied with your experience and thank you again.
Yes, that first few weeks are so surreal. So many thoughts and emotions for your son and his family and friends. I’m glad you found the group. Keep posting and if you need a chat remember the BCUK support line is there for you X
Thank you so much.