Hey sorry late reply that’s great to hear your cruising along reasonably well😊😊 let’s hope you stay in a good health position 😊😀  My last hospital visits were my last until writing this touch wood 👍😊 My lungs and heart hasn’t fully recovered nor will it so I’m feeling how I was last year which is okay for now but I’m having a lot Neuropathic pain from my lower back and it’s radiating from my right side of abdomen to my back and a bit higher in between my shoulder blades but I’ve got some good pain relief over last 2 weeks which has significantly helped I’m still waiting to see a pain management specialist but I’m waking up each day can’t hope for much more but I hope all our friends on here are doing as well as they can be 😘 😊😊 ... View more

Hello long time no speak I just thought I’d say hello and see how your health was going anyhow i hope your well I’ve had a few ambulance trips to hospital over the last couple of months most recently pneumonia nearly killed me lol hope to speak soon 😊 ... View more

Hello Chris just wondering if you had an email I can send you my blood tests to do you can compare to your please cos mine are all over the place my platelets are 686 and my haemaglobin is 84 red cc is dropped to 3.00 ... View more

Thanks Chris so am I thankfully I gives me a little more hope of thinking I’m doing the right thing by having the treatment nothing to loose I guess especially after the diagnosis lol my fingers and toes are crossed for your next weeks appointment Chris please let me know and I hope your bone marrow and pet scan tests went well for you fingers crossed 🙂 hope to chat soon I’m glad you reply it’s great that we chat I enjoy it Thankyou 🙂 ... View more

Hi Chris   I greatly appreciate you touching base greatly appreciate the useful information you’ve shared Thankyou 🙂 I had my first chemo treatment session today I had Rituxamab and dexamthasone and also was given oral cyclophosphamide oral tablets to take morning and night I feel quiet awake atm lol I wasn’t sick nor do I feel sick Atm touch wood 🪵. I saw/seeker out a new haematologist at Latrobe regional health her name is Dr Trisha right she is absolutely wonderful she told me all the things I wanted to hear and needed to know I’m stage 4 She claims that I have only probably had this for a year to 2 years maximum I personally do not at all think I have I believe I’ve had it for at least 6 to 7 years at least but anyway I’m being sceptical but very open to treatment and everything else I feel very comfortable with my new haematologist or oncologist is some may call So hopefully things are going really well from here I was just want to know how long I potentially have or something like that been stage four and Howard and amSo hopefully things are going really well from here I was just want to know how long I potentially have or something like that been stage four and how advanced it is Anyway fingers crossed I purchased a new bed and I’m gonna be sick I want to be sick and comfort bit expensive but why not buy myself one last good thing it’s gonna make me comfortable in my sick days and time ahead hope to chat soon thank you Chris so sorry I hadn’t got back earlier no excuse just been lethargic and tired 😴 hope your going well please update me if your doctor trip when you can thanks Chris. ... View more

Hi Afj  I greatly appreciate you touching base greatly appreciate the useful information you’ve shared Thankyou 🙂 I had my first chemo treatment session today I had Rituxamab and dexamthasone and also was given oral cyclophosphamide oral tablets to take morning and night I feel quiet awake atm lol I wasn’t sick nor do I feel sick Atm touch wood 🪵. I saw/seeker out a new haematologist at Latrobe regional health her name is Dr Trisha right she is absolutely wonderful she told me all the things I wanted to hear and needed to know I’m stage 4 She claims that I have only probably had this for a year to 2 years maximum I personally do not at all think I have I believe I’ve had it for at least 6 to 7 years at least but anyway I’m being sceptical but very open to treatment and everything else I feel very comfortable with my new haematologist or oncologist is some may call So hopefully things are going really well from here I was just want to know how long I potentially have or something like that been stage four and Howard and amSo hopefully things are going really well from here I was just want to know how long I potentially have or something like that been stage four and how advanced it is Anyway fingers crossed I purchased a new bed and I’m gonna be sick I want to be sick and comfort bit expensive but why not buy myself one last good thing it’s gonna make me comfortable in my sick days and time ahead hope to chat soon thank you ... View more

I hope with your latest bone marrow that things are still at idle and not any more worse for you I really do… why can’t you have the good chemo is that because there may be a different type of cancer now or starting? I haven’t been told what these 4 are about at all they were not on my discharge but they are lymph nodes at great sizes and I had to stumble across it otherwise I was completely unaware about it.. thanks Chris do you know what your platelets were at diagnosis mine were 110 NDA haemaglobin was 85 red blood was 2.95 and have you had issues with blood in form of clotting at room temperature? Made there life hard I wasn’t sure if cryogloblenemia affects all us WM patients or just me that makes me special lol ... View more

That’s okay upon discharge on the 9/6/21 I had dexamethsone or something not sure of spelling and chemotherapy tablets that were cyclophosphamide until I started in hospital which was booked for treatment C1 on Thursday but sounds like I have a rocky road ahead to look forward to….By sounds of things!!! Did you get a prognosis at all of I see a staging of stage 1 through to stage 4 the haematologist I sacked yesterday wouldn’t tell me at all of what stage or anything at all about it other than it’s at the top of the scale his words were to me… he failed to put important information on my discharge papers about crucial things that impact me and I don’t like that thanks for chatting.. it’s good 😊 I have no idea about what to look forward to I have some nausea tablets the second ones you mentioned I only got them after the chemo tabs I’d taken when I said that I was feeling sick in belly he said I should of been given them upon discharge anyway I have them now 🙂 do you get lost for words but know what you want to say?do you get confused? Also do you have numb/tingle pins and needles in your toes? And your hands and feet become freezing cold? ... View more

Thankyou for your quick reply greatly appreciated I thought I’d be waiting forever or not knowing if I’d get one back lol it was great reading really knowing I’m not alone my haematologist is so rude I walked out on him yesterday he told me to ask questions and stuff when ever and I did I said George I’m baffled as to why my discharge papers from your unit in Monash have not disclosed half of my Ct scans and he said what do you mean I said I had to find out the TRUTH… By chance of signing up to my health records online and seeing I had 4 other issues nodes that are above 15mm and 15x35 mm and 2 others and he said and so??? I said it’s my body I did the tests im entitled to know I believe and he said and now you know??? With a surly tone to me I was like I shouldn’t have to find this out at 230am on a Sunday morning I should of been informed by you George do you get it…and he said don’t speak to me like that and I said cmon Mum were going and he said well if you want treatment you’ll be back hahaha I said you can get well and truly $&&?&@ and off we went I was supposed to start treatment course 2 on Thursday.. he can’t give me a prognosis or tell me at what stage im at or anything other than how rare and unique I am I couldn’t care how special I am and bla bla im not gonna get lied to by someone who claims to want to help me  so he’s gone… thanks for your reply talk soon  ... View more

Hello I’m Ben I just turned 35 and I’ve recently been diagnosed with Waldenstrom Macroglobulinemia /lymphoplasmacytic lymphoma and I have clearly had the symptoms for about 6 years my doctor tells me I’m rare and unique and special… I’m so lost upset confused and feel alone I have my mum and her partner as support but I want to connect with ppl who have our condition as it’s very rare I live near Phillip island and Monash pathologist says he’s never had a case through him in 35 years there as my blood clots at room temperature as I have cryogloblenemia aswell hope to chat soon please how many patients do you think there are or have been in Australia with this I’m curious:) ... View more