ET & MF

Hi David22 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.

I don't have Myelofibrosis but I was diagnosed way back in 1999 at 43 years old with another rare, incurable type of blood cancer reaching Stage 4a in late 2013 so I do know this journey rather well although not necessarily some of the treatments you have been on.

Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with Myelofibrosis in it so worth checking.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

All the very best.

Hi Mike,

Many thanks for your reply.

Good to know there is support available, especially the Macmillan Support Line.

Take care 

Regards,

David 

Hi David22 , sorry, I've only just seen your message, we've had internet problems and also I was feeling a little under the weather. 

I have MDS, myelodysplasia, which is a blood/ bone marrow cancer, diagnosed after a bone marrow biopsy. I see that my good friend Mike Thehighlander has replied to you with a wealth of good knowledge. I've had MDS since diagnosis in March 2015 and had weekly EPO treatment since then, I've had a few too many times when my bloods have been poor at times but I've always recovered. I'm on a watch and wait policy. 

I fully agree with you that we have to adopt a positive attitude but it doesn't seem to stop me thinking about it a thousand times a day! 

This is a great place for support David, always worth staying around and developing good relationships. 

Keep strong and stay safe David

Tvman 

Thanks for your reply Tvman! 

Stay strong sir! 

Go forth and conquer

Thanks for your reply,appreciated.