MDS, MPN, ET, PV and MF - support with rarer blood cancers

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September was 'blood cancer awareness month' and we shared a Community News blog about the support available on the Community. You can catch up here, if you haven’t yet had a read.

We’re following up on September's blood cancer awareness blog to let you know we’ve created a new forum for rarer blood cancers. You can find the new myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum within the 'other cancers group' here on the Community.

If you’re looking for support with myelodysplasia (MDS) or myeloproliferative neoplasms (MPN) including essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF), the Community now has a dedicated space for you.

When you or your loved one are diagnosed with one of these rarer blood cancers, it's likely that you hadn't even heard of it before. It can feel really isolating to be diagnosed with cancer. It may make you feel even more alone when it proves difficult to spell or pronounce the name of the condition and you've never heard of anyone with that diagnosis. 

The Community can help by providing a dedicated space for you to share experiences and support one another. We hear that it can make all the difference to find people with a similar diagnosis.

If you're not familiar with these conditions, you can find all our blood cancer information here on Macmillan's online information and support pages. We've used information from those pages to give a brief description of each blood cancer below, but if you'd like to understand more, you can click on underlined words to read all the information from the Macmillan website.

Myelodysplasia (MDS) is a a type of blood cancer that affects the bone marrow. It causes low levels of one or more types of blood cells in the blood.

Myeloproliferative neoplasms (MPN) are also blood cancers. They happen when the bone marrow makes too many of one type, or more than one type, of blood cell. These cells all start from myeloid stem cells. Essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF) are all types of myeloproliferative neoplasms (MPN).

Essential thrombocythaemia (ET) is a slow-growing blood cancer. It is where the bone marrow makes too many blood clotting cells, called platelets. This means there are more platelets than normal in the blood.

Polycythaemia vera (PV) is a rare slow-growing blood cancer where the bone marrow makes too many red blood cells. This can make the blood thicker than normal. Some people with PV also have too many white blood cells and platelets in their blood.

Myelofibrosis (MF) is a type of blood cancer that affects the bone marrow. In people with MF, scar tissue builds up inside the bone marrow and blood cells are not made properly.

Community member Bel C recently came to the site to find out if there was anyone with a similar diagnosis of myelodysplasia (MDS).

"New diagnosis MDS...I've been recently diagnosed with this unwelcome acronym..."

- Bel C, Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum.

Are you interested to read the full conversation and find other members in similar circumstances? Please click on the underlined link below the quote in green to navigate to Bel C's post on the Community. You'll be taken to the post in the new myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum where you can see the whole thread.

There are lots of threads linked within this blog, so feel free to dip in and out of the forum and back to this page when you're ready. If you're not sure how to return to the blog, you can find it again by clicking on 'news' in the menu towards the top of every Community page.

Do you feel you'd like to reply to Bel C or any of the other Community members who commented? Once you've clicked on the link and found the post on the Community, you'll find the 'reply' button on the left underneath each post in the thread on the Community. You'll need to be a member of the Community to join in with the conversation.

Like Bel C, you'll find that most people use the initials of the condition rather than the full medical name. You're more likely to hear about MDS, MPN, ET, PV and MF than myelodysplasia, myeloproliferative neoplasms, essential thrombocythaemia, polycythaemia vera (PV) and myelofibrosis (MF)

We've moved some posts from the 'other cancers' group into the new  forum so that members previously looking for support with these conditions will find it easier to come together to share their experiences.

"Hi anyone. I have very recently been diagnoised with Polycythaemia and have just started chemo tablets this morning. Due to Covid I have not seen any medical person face to face and just feeling a bit alone. Is there anyone out there with the same condition."

- March19, Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum.


"...just joined this group today I’ve been living with ET since I was diagnosed in 1999 I have become more anxious about it during Covid since only have telephone consultations with Haematology now instead of face to face. My main symptoms are fatigue & dizziness would love to communicate with someone else who has this rare disease"

PrincessJan, Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum.


"My husband has it. He has lots of dizziness. Is this MDS related? Any thoughts? Any experience anyone can share? Many thanks." 

- Malfi, Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum.

There has always been support available in the Community for members diagnosed with or supporting a loved one with a rarer blood cancer. However we think that a dedicated forum will make it much easier for you to come together and share your experiences. 

We know it can make all the difference to be able to talk to people who've been through it themselves. 

"...it's nice to know we're not alone as it's a very lonely place dealing with this, thinking you're the only one..."

CarG, Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum.

"...your support means so much..." 

- Malfi, Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN) forum.

If you're affected by MDS or a MPN such as ET, PV and MF we'd invite you to join the myelodysplasia (MDS) and myeloproliferative neoplasms (MPN) forum now. 

If you were already a member of the 'other cancers' group, you won't need to rejoin. If you're not already a member, please click a banner on the screen which says 'Other cancers requires membership for participation - click to join'.

We'd encourage you to post a message and introduce yourself, so that other members know you're here. If you feel comfortable doing so, please click +new (or + on a mobile) to start a new post. There’s some help available here if you get stuck, or email the Community team at community@macmillan.org.uk and we’ll support you further.

You also have the option of talking to someone at Macmillan. You can talk things through with someone who is there to listen and find out more about the support Macmillan can offer.  Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00email or live webchat.

We'd really welcome your feedback on this blog or the new myelodysplasia (MDS) and myeloproliferative neoplasms (MPN) forum. You can comment below or email the Community team at community@macmillan.org.uk

 

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