Newly diagnosed

[FBSP5]

Hi

I was diagnosed last month with MDS-SLD. I had a massive DVT in my left leg in January and they found that my platelets were low and I had iron deficiency anaemia. I am only 39 and have all of the genetic tests have been negative so far. A bone marrow transplant has been suggested but I am waiting to meet the team to discuss it as I have other medical conditions too but hopefully they won't impact the decisions. I am planning to attend the zoom meeting on Thursday. I am a single mum and my child is starting school in 2 weeks. Joining the forum to see if anyone else is in a similar situation and for any advice along the way. Thanks.

[chris]

Hello there. So sorry to hear of your diagnosis. Must have been quite a shock for you. We have quite a few members who were diagnosed with MDS at a younger age and I will try to get them to post a reply to you.

I think it will be a good idea to attend the Zoom meeting on stem cell transplant on Thursday. There’s also an Essex, Kent and South East England meeting on Tuesday where you might have more time to share your current situation. It’s open to everybody across the UK- despite the title! I’m leading that meeting so it would be good to see you.

I hope your little one settles into school in September. A big moment for you both. My granddaughter #3 starts then too and the school won’t know what hits them!! She is very single-minded!!

Take care and hope to see you soon.

Chris

[Donna Sussex]

Hello,

Sorry to hear of your diagnosis.
The MDS group is such a lovely supportive, helpful and kind lot of people.

I was diagnosed with MDS-MLD when I was 38 years old and my twin boys were six, so in year two.
Eight years on and and I have had a few different types of treatment and watch and monitor continues.

I am here if you would like to chat on here or if you would like to private message me and we can chat there and /or on the private chat we could exchange phone numbers and chat.

Donna x

[FBSP5]

Thank you, Chris. Unfortunately I cannot make the meeting tomorrow as I have a consultant appointment. Hopefully I may get some further answers there. My daughter is very single minded too!

Donna, I really appreciate that. I would be really interested to hear about the treatments that you have needed. Happy for you to share via PM.

Best wishes x

[RUSE7]

It's so overwhelming when you're first diagnosed, it's often hard to know what you need to know. One of our Trustees has posted a great list of questions to ask the consultants which I have copied out of our facebook group and am sharing here. Some of them you already know the answers to as you are obviously a way down the diagnosis path given you've already had your genetic tests done etc, but it may help at that meeting.
I hope you get some answers
All the best, Ronnie

Just diagnosed with MDS? Here’s a few questions to ask:

• How sure are you about the diagnosis of MDS?
• Can you explain what MDS is? How is it different from leukemia?
• Do I need any other tests before we can decide on treatment?
• Do I need to see any other types of doctors?
• What type of myelodysplastic syndrome do I have?
• Which risk group does my MDS fall into? How might this affect my prognosis and treatment options?
• Are there other factors that could affect my outlook or treatment options?
• When deciding on a treatment plan
• How much experience do you have treating MDS?
• What treatment choices do I have? Do we need to treat the MDS right away?
• Which treatment, if any, do you recommend, and why?
• Should I get a second opinion before starting treatment? Can you suggest a doctor or center of Excellence?
• What should I do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• What are the risks or side effects of the treatments that you recommend? How long are they likely to last?
• Will treatment affect my daily activities?
• What is the outlook for my survival?
  During and after treatment
  Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.
• How will we know if the treatment is working?
• What type of follow-up will I need during and after treatment?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach a CNS or consultant on nights, holidays, or weekends?
• Do I need to change what I eat during treatment?
• Are there any limits on what I can do?
• Should I exercise? What should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• What would my options be if the treatment isn’t working?
• Where can I find more information and support?

Take a pen and paper and write your questions down!

[RUSE7]

Thank you, Chris. Unfortunately I cannot make the meeting tomorrow as I have a consultant appointment. Hopefully I may get some further answers there. My daughter is very single minded too!

Donna, I really appreciate that. I would be really interested to hear about the treatments that you have needed. Happy for you to share via PM.

Best wishes x

Regarding the Stem Cell Transplant patient meeting on Thursday, I think that will be recorded so I will share the replay of that with you once it's been posted.

[FBSP5]

Thank you, Ronnie. That's really helpful. I would really appreciate being able to watch the recording of the bone marrow transplant meeting as unfortunately I cannot attend it anymore. I am being referred onwards for a second opinion.

[RUSE7]

Hi there.
The video from the Stem Cell Transplant meeting is just live on our website today. It's long, but well worth a watch. Dr Victoria Potter is so easy to understand and she has so much experience with SCT's. I hope this helps demystify some of it for you.
https://mdspatientsupport.org.uk/stem-c ... -hospital/
All the best,
Ronnie