My husband has recently been diagnosed with Mylodyplastic Syndrome. Just wanted to connect with others who have the same for support and information sharing

My husband has recently been diagnosed with Mylodyplastic Syndrome. Just wanted to connect with others who have the same for support and information sharing

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Hi @SarahC,
A very warm welcome to the forum! I 'm pleased you have found us and I hope you find some really great support within our threads & channels here.
I am so sorry to hear about your husbands diagnosis.
May i ask how both of you are coping?
In case it is useful Sarah, we have a confidential support line, the number for which is 0808 2080 888. Please feel free to give us a call if you think it might be helpful.
You may also find this page of our website helpful in - Myelodysplastic syndromes (MDS) - what is it, symptoms and treatment | Blood Cancer UK.
Often when just diagnosed it can bring with it a multitude of unanswered questions & uncertainties and certainly a rollercoaster of emotions & our pages here do talk through some of this- I’ve just been told I have blood cancer | Blood Cancer UK.
It can often be a good idea, if you or your husband do have any questions to keep a note of them so that at any upcoming appointments, this can be clearly addressed & questions are not forgotten.
I’m hopefully that you will find this space a great one for support & information and again Sarah should you or your husband need anyone to talk anything through with our support team are only ever a call or email away also-
Blood cancer information and support by phone and email | Blood Cancer UK.

Do Take Care, Lauran

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Hi @SarahC a great big welcome to our forum, @BCUK_SupportTeam Lauran has got in first with some brilliant information.
You and your husband must both be in shock, I know I was when I was diagnosed with another blood cancer. That was 18yrs ago and I can still replay the day as if it were yesterday.
Yes, writing down everything I want to ask is so useful to me as I walk into a medical building and my mind goes blank.
You have both entered a parallel universe that speaks another language called medical, and where you spend so much time waiting and feeling out of control.
No question is too silly to ask.
It might be emotional to practical.
I am looking forward to hearing more about yourselves and what is the next thing that you are waiting on.
I would now say the most important thing is to look after yourselves, be kind to yourselves and spoil yourselves.

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Hello Sarah,
I was diagnosed the Myelodysplastic syndrome (MDS) in February 2021. It is complicated by an overlap with MPN. My Myelodysplastic syndrome (MDS) is with del(5) with additional abnormalities and makes me anaemic I have a weekly injection (self administered) of Aranesp which is a form of erythropoietin which helps my anaemia to keep stable. I am also on hydroxycarbamide tablets 5 days a week, but I think that is for the MPN part. I do have times when I feel very tired, but as I am retired, I can take quiet times when I need to. I have a very good haematologist and I have appointments every four weeks. She likes me to go with one of my daughters ( my husband died in 2009.) We find it helpful to take a list of questions we need to know about. This Forum is so good. Please let us know how your husband gets on. This is a very complicated disease with many treatments I wish you well.

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Hi Sarah another Myelodysplastic syndrome (MDS) patient here! I was 42 when i was diagnosed with Low risk 5q- Myelodysplastic syndrome (MDS). I have done really well on some amazing drugs over the last few years which allowed me to live a “normal” life. Now though i am heading to a transplant hopefully in the next 6 weeks.
Myelodysplastic syndrome (MDS) is a v complex disease with different risk factors. There are different treatments available which can depend on a persons age.
I find this forum great and there is also a closed facebook page called Myelodysplastic syndrome (MDS) UK Community which is great too if you are on fb.
Its such a shock at the beginning but you need to find out what type of the disease he has and then find out as much as possible about that type. If you have any qs u think we could help with here just shout.

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Hi Ashob,

Thank you so much for your reply and for the fb page recommendation.
We will definitely have a look at that.
My husband is 61 and previously of good health so yes it has come as a huge shock.
No family history of anything like this.
He was admitted to hospital about 6 weeks ago after becoming severely anaemic after a bout of Covid and needed 9 blood transfusions.
That was the first we knew of it.

We have been told he will need a course of chemotherapy and possibly a bone marrow transplant

His two brothers have just given blood samples to see if either one could be a potential donor.

Can I please ask what drugs you were treated with ?

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Hi Lauren,

Thanks so much for your reply and for all the information
My husband Darren is 61 and until now has never been ill. There’s no family history of anything like this.
A couple of months ago we both contracted Covid for the first time. I got better quite quickly but my husband became pale, ill and weak with no appetite

Eventually I persuaded him to see the doctor who said he was dangerously anaemic and he was admitted to hospital where he was given 9 blood transfusions.

After extensive tests he was diagnosed with Myelodysplastic syndrome (MDS) last week

Until he got Covid there was no sign of illness so it’s come as a massive shock and we are both rather frightened.
I thought it might help if we could talk to other people who have the same condition

Thanks again for taking the time to reply

Kind regards
Sarah

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Hi Kate,

thanks so much for your reply.
I’m sorry to hear you are also suffering with Myelodysplastic syndrome (MDS)
It sounds as though you are getting good care.
My husband, he’s 61, has had nine blood transfusions since his doctor sent him to hospital suffering from severe anaemia about 4 weeks ago.

We had both just had Covid and we both thought it was something to do with that as previously he had always enjoyed good health.
After extensive tests he got the Myelodysplastic syndrome (MDS) diagnosis last week and his consultant says he will need chemotherapy and potentially a bone marrow transplant.

It’s all come as a big shock and we are still trying to come to terms with it and what the future is going to hold

Kind regards
Sarah

Hi Sarah I know its a lot to take in and it is a very complex disease. So in my case I used to go for a yearly blood test just as a check up and one yr my doc came back and said i had to go to see a haemotogist. So i found out before i had any symptoms.
I have been on a couple of treatments which worked for periods of time. They would then stop working i would become transfusion dependent and then they would put me onto a new treatment. In my case as i have 5q- I went on a drug called Revlimid. It was a low dosage chemo tablet which i took once a day for 3 weeks then one week off. I would go in to the hospital once a month for a blood test then off id go again for another month. That lasted for 3 great years where i worked and ran after the kids and the dog and looked after hubbie all “normal”.
This is why it is important to know what type of Myelodysplastic syndrome (MDS) he has. I always knew i would need a transplant one day just never knew when but its imminent now.
As you may know already Myelodysplastic syndrome (MDS) is most common in men in their 70’s. Unfortunately a lot of older people are unable to go thru the transplant process as it is v gruelling. Therefore you are deemed very lucky to be eligible for one. Its a hard road from what i can see
It can take up to a year to recover and its not without risks and difficulties but it can be a cure.
They look to siblings first but if they are not a match they go into the donor bank. I dont want to be firing too much info at you too quickly. I know its a v scary time but there is hope there too xxx

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Hi Sarah
I was diagnosed with Myelodysplastic syndrome (MDS) last November and am booked for my transplant next week.I’m 63so roughly same age and also originally developed anemia last May.I’m under the Marsden and have to say say the staff there,my Consultant and Nueses have been brilliant.I can only echo previous comments about this group,everyone has been so helpful with information and support
BW

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Hi Alastair, Thank you so much for your reply.
It’s so helpful to hear about the experiences of others suffering from this syndrome which we had never even heard of a month ago !
I’m reading the replies to my husband and it helps us both not to feel so alone.
We both wish you the very best with your transplant next week

Kindest regards
Sarah

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