Diagnosed with lymphoma - Waldenstrom’s macroglobulinemia MYD8D8

Hi, Whatever you do don't use Google to get any answers you will just be left depressed and despondent and worst of all the information wont be relevant to your case. I've found this site and the Lymphoma Action Facebook group very reassuring. I hope your meeting on Friday goes well and you get answers to your questions. 

I was diagnosed with WM 2 years ago but blood tests show that I've probably had it a ot longer. 

Yes it's scary and the thought of treatment worries me but... Lots of fellow wm people have had the various treatments with good outcomes Louis Walsh for one.  I'm currently on watch and wait and other than feeling very tired don't think too much about it. Talk about it to someone who is supportive, don't bottle it up. Friends support helps a lot. You'll get there. 

Hi Pinkwaterfairy and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your WM diagnosis. I am Mike and I help out around our various Lymphoma groups. 

It's good to see that some of the group members have picked up on your post as there is nothing better than talking with others who have walked the walk.

I don’t have Waldenström’s macroglobulinaemia but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Treatment could be as simple as having you on Active Monitoring (Watch and Wait) as treatment is normally only given when it is necessary and when it would be most effective.

Getting clear information is important so these 2 links will help you achieve this.

     Top tips for getting the best from your appointments

     Questions to ask your medical team about Lymphoma

As has been mentioned do check out the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Lymphoma Action have a Lymphoma helpline on 0808 808 5555 open every week day from 10 till 3. This is a safe place to talk this through and get support.

Hi Mike, thanks for this