Newly Diagnosed

[KRS8]

Hello. My name is Kathy and I have just been diagnosed with MDS after having macrocytic anaemia for many years. This diagnosis was quite a shock, and I am not sure it has actually sunk in yet. I am hoping this website is going to give me some reassurance over the weeks/months and that I may be able to reciprocate in time. I have just had my second lot of blood test results today since being told, and the numbers have gone down, so presume when I see my Consultant next week, some treatment may be forthcomimg. I have heart and vascular disease on top of this, all of which have been diagnosed in just the last 4 years (before which I was - or thought so - fit and healthy and in the gym regularly!), hence the shock. I am looking forward to reading peoples posts and how we can encourage each in the future. Thanks for reading my post.

[chris]

Hello Kathy

Welcome to the Chat Forum. I hope you will soon receive the MDS Patient Handbook which will help clarify some of the questions you must have about MDS. You’ve certainly had a lot to deal with over the past 4 years. It is certainly hard to move from that self-perception of being a fit and healthy person to being a “patient” with a different view on one’s future health.

One of the things that helped me after my diagnosis was to engage with other people with my disease. As I have CMML, which is even rarer than MDS, that proved very difficult - even after getting involved with MDS UK. Now that Covid has forced us to abandon face-to-face meetings and meet online via Zoom, that has widened the access to people with all the different types of MDS and CMML. This means that you can hear about a wide range of symptoms and treatment experiences. So, if you think that would help you, please register for a meeting where you are made most welcome. The next meeting is on Tuesday and here’s the link:
https://mdspatientsupport.org.uk/event/ ... ationwide/

I hope this helps and you get more information at your next consultation. Please also check out my response to Andy (Newly diagnosed also) regarding a prompt list of questions you might like to think about before your consultation.

Do post again when your diagnosis is clearer and let us know how you are -symptom-wise.

Take care

Chris

[RUSE7]

Hi Kathy

That list of questions to think about when you see your consultant that Chris was talking about is here: https://mdspatientsupport.org.uk/questi ... -patients/ (Really good list... I hadn't seen that before Chris!) I hope that some of those help you get a clearer understanding of where you're at from the docs.

It's a really scary time when you're first diagnosed so feel free to offload here anytime and do attend the patient support meetings, They're such a good way to connect with other people who have been where you are emotionally.

I was diagnosed about 4 years ago and like you, thought I was fit and healthy. I'd recently given up at the gym though as I was so knackered all the time and was really struggling with the hills. Fate was cruel when I bought a house half way up a hill so no way to avoid going up if I wanted to walk anywhere . They've got me on EPO which has boosted my blood levels significanlty and I'm feeling a lot better than I was 4 years ago. I hope your consultant comes up with a treatment plan that gets you to a place where you can get back to some sort of normality.

Take care,
Ronnie

[KRS8]

Hi. I have now been back to my Consultants 10 weeks after diagnosis. Unfortunately my haemaglobin numbers have dropped drastically so I am being started on EPO which I hope will start to help my breathing/fatigue etc. I think this stage has now made it hit home a bit more, but at least something is being done, and although the injections don't get rid of MDS (unfortunately!!), it will (so he says) ease the symptoms and I will be able to walk a bit further than I do at the moment. I know this sounds weird, but because of the type of cancer, there is 'nothing' to see which makes it harder to accept. I am not a youngster!! but I was a fit 'oldie' and I would like to get some of that fitness back, so hopefully the injections may help a little with this. Thanks for listening. It really helps to put things down to people who understand and have probably gone through the same feelings/doubts.

[chris]

Hi Kathy

Yes, that is one of the ironic things about having MDS or other blood cancers. They are completely “invisible” illnesses with no malignant tumours which could be surgically removed and most of us actually “look” quite well. Not pale and wan as people might expect from anaemia -even though some are struggling with very low haemoglobin and feel totally wiped out!! Moreover, many of us do not need intensive treatment with chemotherapy or radiotherapy or other drugs -only supportive treatments like EPO or blood transfusions. I’m sure some of my friends still believe I can’t really have leukaemia as I’m not having any treatment! It’s a bit like when people demand antibiotics from their GP because having treatment somehow “proves” to others that they really are ill!

Let’s hope the EPO does soon begin to work for you. It may take a little while to know if it’s effective for you - as I understand it.

I’m not sure where you are having your clinical care but always remember that if you would like an additional opinion from a clinician at a specialist centre for MDS, you can always ask for this from either your current consultant or your GP.
Here is a link to the specialist centres:

https://mdspatientsupport.org.uk/what-i ... s-centres/

Hope you soon begin to feel less fatigued. Meanwhile, listen to your body and pace yourself within your current energy levels.

Best wishes

Chris

[KRS8]

Chris/Ronnie

Just to say I really appreciate your replies, as it helps alot talking to 'someone who knows'. I am a positive person normally, and I am getting back to that mentality slowly. It is good to hear that EPO helps and that you both seem to be doing very well. Hopefully I will be joining you both very soon.

Best wishes
Kathy

[RUSE7]

Hey Kathy,

The EPO has been a life saver for me. As Chris said, it takes a few weeks to kick in. Our blood cells take a while to produce and for you, they have a bit of catching up to do. I felt better within about 4-6 weeks, so you'll know pretty soon if it's effective for you.

Injecting is really easy at home. For me it's 100ug once a week into my belly. The injection is a little uncomfortable, but not nothing awful. One hint is to make sure you leave it out of the fridge for 30 mins before you inject, or roll it around in your hands to warm it up a bit. It makes it a little more comfortable when it goes in.

I do hope you have a good result on it and you start to get your fitness back. It makes you feel pretty retched not being able to do the things you used to take for granted.

Do remember that the EPO needs to be refrigerated. If you are travelling with it, see my post about it in the MDS Treatments folder viewtopic.php?f=57&t=669

Let us know how you go with the EPO.
All the best,
Ronnie