Hello Belcar45 😃 So lovely to hear from you.   I am so sad though that you have been having a rough trot. Are you feeling ok now? Is the WM flaring up again as well? You mentioned a few hospital visits. I am doing great. My bloods are behaving themselves still. But I am one of the lucky ones as my WM was only at 20% infiltration when diagnosed. Most get diagnosed when infiltration is over 50%.  I still have check ups at Olivia Newton John Centre every six months.  Sending you lots of virtual hugs 🤗 ... View more

Hi Ben 🙂   You may find treatment a lot better than I did. Remember, not everyone is the same 😉 I have my fingers crossed for you. And yes, I have had and in some cases still have a couple of the things you mentioned, like the numbness in my toes. I have had xray and found that I do now have some back issues and that the numbness/tingling could be from that. I get cramps in my hands occasionally and sore finger joints. I am under a Rheumatologist for that now. It is thought it may be linked to my WM, or my ITP, which is another condition I have. I do still find words sometimes hard to find, but I am much better lately. And confusion, yes, that was pretty bad. But again, has been getting a bit better.  About the 'stages' of our cancer. My Haematologist said that with OUR type of cancer, it is not generally classed by stages like other cancers are. Our cancer is more classed by infiltration. And on that note, can I ask where you are being treated? Is it part of Peter Mac or through some other medical team? I think you may have mentioned Monash? Or am I confused with another person's post.....? See? That confusion thing ha ha!   I gather you know that you can ask for another Haematologist.  I wish you all the best of luck in your journey Ben. 🙂 ... View more

Apologies for the very late reply. Treatment was awful. The first day or two after treatments were not bad,  but then the nausea, tiredness and generally feeling like crap would kick in and last for at least a couple of weeks. The anti-nausea meds helped - Pramin and Odensatron(sp?) - but left me feeling drowsy on top of the other side effects. Now, nearly two years on from treatment I feel great most days 🙂 My bloods are great and I am not receiving any form of treatment at all. Just follow up Haematology appointments.   How are you going?     ... View more

Hi 🙂 I have belonged to IWMF since my diagnosis. ... View more

Hi again Chris.   I replied to your last message, but cannot see it here.   Please don't head scratch too much. I don't want you to hurt yourself ha ha.   So... with me.... I am kind of lucky in a way as I have only 20% infiltration of WM. Most people I know have 60 to 85% infiltration.  The only reason it was picked up so early in me, was because I was rushed to hospital with zero platelets and diagnosed with ITP. But a few of the myriad of blood tests they performed showed up with unusual numbers. So I had a bone marrow biopsy and bam! WM was the diagnosis. There are different degrees of management with this cancer, so please don't be confused. Trust your Oncologist. And just remember, if you are not happy with him, you can always ask for a second opinion or change to another. Good luck with it all xxx ... View more

Oh my gosh!! I sincerely apologise for such a late reply!!..... I never receive notifications from this site if someone has replied, even though I have the 'Email me when someone replies' box ticked. Go figure lol   I hope you are going along well 🙂   I had a horrible time with the Rituximab/Bendamustine. Not at the time of infusion, but a few days after. I am now luckily in remission and I hope WM doesn't rear it's head again before I die of old age, as I don't think I could go through the treatment again.    So where are you at now? Did you have treatment? How are you going? 🙂   Cheers! Mary ... View more

Hi hi 🙂 I have joined every possible group (Australian) which I could find.     ... View more

Hi hi Chris.   Thanks for your message. I hope you are travelling along ok. 🙂 I am now in remission.... yay! Let's hope I die of natural causes before the WM rears it's ugly head again. I really don't know if I could handle going through chemo again. It was so, so horrible. But, for now, life is wonderful. I haven't felt this good in many years.  I still can't believe that they don't recognise WM as hereditary. It is, as you say, unique, as well as rare, yet my father had it too back in the late '90s. He died in 2000.    Good luck with everything in your life and stay safe 🙂 Mary      ... View more

Ha ha ha ha!! Funny man 😛   ... View more

Hello Sch 🙂 Thanks for the post. After I had my gall bladder out, I find I cannot drink full cream milk anymore and have to be careful with eating chocolate and cheese and cured meat.  Funny how things change. Take care 🙂   Mary  ... View more