Hi Ben and all,  As a fellow 'Waldys' (my nurse consultant uses this as shorthand, and I've adopted it) survivor - I just wanted to agree with some of the thoughts here and add my 2 bobs worth... 1. I know we're all experiencing this differently but I am also a person who likes to 'know' and 'understand' - particularly after my Waldys was missed for ? years when I was being monitored for my other (different) blood cancer (MPN).  Not all people need to know stuff - one of my best friends has myeloma and is happy to leave things to her treatment team. Both ways are Ok! 2. IWMF and WMozzies have already been mentioned, but I'd add WMUK (Waldys UK) Lymphoma Australia and Leukaemia Foundation to that list. I've attended some great live on line sessions hosted by all 3 plus their on line resources on topics like grading and staging of Waldys (compared other cancers) was really helpful.  3. If you're at Monash Health - stick with them, or seek out a 2nd opinion from another major public health service. They all have multidisciplinary care (i.e. best practice) so reach out for support from mental health, exercise physiology, dietitian etc. when you need it. I did! Critical mass of expertise also important with rare disease. I moved from a private haematologist to Peter Mac after being told I 'wasn't sick enough' to have a bone marrow biopsy and to 'live my life as a well person, not as a sick person'.   In the public sector you know you're getting evidence based treatments and that they have to share their results with authorities. The IWMFs 3 listed international experts on Waldys for Melbourne are all at Peter Mac and this gives me great comfort. My thing with the co existing myeloproliferative and lymphoproliferative cancers  is so rare that when the Waldys was finally diagnosed, they weren't sure which one was causing the symptoms. My assigned haematologist was more an MPN man and was completely up front with me about not being an expert on Waldys.  He did assure me there was a world expert looking at my case to guide him though!    In the end, it was the Waldys causing my symptoms which stopped almost the moment I commenced Rituxumab and Bendamistine. At diagnosis I was told I was stage 4 with 80-90% bone marrow infiltration and needed treatment immediately! I never had very high IgM around 8 IIRC. I am now in partial remission with IgM detectable but not measurable - apparently you never get rid of it all.    The only symptoms I have are related to the MPN which I am now taking oral chemo for, but I feel 100% normal - at 62, still work full time and can do everyday things with not much drama.    Stay strong Ben - it's normal to feel angry (I was and still get annoyed about my first haematologist who had me on watch and wait for 8 years) but many days I don't even think about it beyond taking my daily meds to keep my red cell and platelet counts in check.    ... View more

Hi Mary,  I was diagnosed with WM on April Fool's Day last year, after seeking a second opinion on my anaemia,weight loss and spleen enlargement. I had already been diagnosed with a myeloproliferative blood cancer in 2012, but had only been on yearly reviews and prophylactic Aspirin (with original  haematologist). When  the new symptoms appeared it was suspected that the original disease was progressing to a more serious form. However wasn't until I took myself to the Peter MacCallum Cancer centre that a bone marrow biopsy was done and a coexisting lymphoproliferative disease (the Waldenstrom's) was found.    I too had 6 cycles of Rituximab and Bendamustine at Peter Mac. The WM was at stage 4 with 80-90% bone marrow infiltration, so I needed to start immediately. Apart from the common Rituximab reaction in the first cycle I had a smooth run and felt the benefits immediately. Once the Waldenstrom's was knocked down,  the other disease also able to be better visualised and  it too is potentially being re-diagnosed.   I 'm eternally grateful to Peter Mac for seeing me for a second opinion and the wonderful attention and care I've had since changing over to them. With two rare blood cancers - I never hesitated to change to the public sector.  I'm now on tablet chemotherapy for the MPN to hopefully manage it as a chronic issue. I still work full time and other than having some aches and pains and skin plaques, live a regular life.  ... View more