Waldenstrom's Macroglobulinemia

[Chrissy5]

Thank you for your quick reply,I’m so glad your in remission Mary..wonderful news for you and wishing you all the best for a long future ahead.Im doing ok,I have Iv treatment every month in Brisbane to try and keep my protein levels in check but unfortunately the levels are rising again.I try not to worry as my oncologist keeps saying he has something up his sleeve but doesn’t elaborate too much more then that.So up the track maybe a change in treatment for me for  more control.I was told years ago there is no remission only management here after for me...well maybe for lots of different reasons and life factors to take into account I guess🧐head scratching 🤯 (I’m in fairly good health for my 70 yrs) So for you it’s been really a great outcome 😁it’s just so nice to hear your good news.👍🌹

[maryfrancis3]

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

[Chrissy5]

Thank you Mary,

I will always stay positive and although my protein levels are rising again after 4 years now I’m sure my oncologist has my best interest at heart🙏 As I said before...many factors come into it of course I was unusually unwell a lot of the time leading up to being diagnosed one infection after another, although My regular blood tests were fine just up until a month before being diagnosed.My life went into overdrive ...So just like you ,after what seemed 100’s of tests later...bone marrow confirmed it.Thank you again Mary for replying so promptly I really do appreciate it.💗Cheers Chris

[Belcar45]

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:)

[Chrissy5]

Hi Ben,

Thanks for contacting me and telling me of your story, and yes your right Ben …there are not too many of us around so I have been told many times. Waldenstrom macroglobulinemia is very rare and just a handful us around. Like you I must of had it a while before being diagnosed as going back over many years now I was just run down and always be picking up infections ,and just a feeling of being unwell most of the time. In different to you Ben I’m a lot older (71yrs young) I have heard some good reports that being younger can be a good thing in regards for a better outcome. As to your question…How many of us around?
It’s hard to say really…however I did read somewhere just a small handful of people  in every million. Ben I hope you have a good oncologist as they can be very helpful and explain things along the way and guide you through each stage that you will find yourself going through. I have been having treatment now for four and a half years, and kept fairly good health and just getting on with life in general. At  the moment I’m going through more tests (bummer) to see where things are sitting  before starting on different treatment  and a new plan and path, at my age we are managing the disease, knowing that we can’t cure it.

Take heart Ben, you have youth on your side so that’s good news in itself for you and of course your prognosis may be all together different to many others ? so don’t be afraid to ask “lots of questions” as it’s all a bit overwhelming at times I know, I actually make lists so I don’t forget ,and tick them off as I go along. Please take care ,and if ther is any help groups out there…so glad your mum and partner are there for you, I think it’s important to have the love of our family and friends around us right now.any time.Cheers Chris

[Belcar45]

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 

[maryfrancis3]

Hi 🙂 I have belonged to IWMF since my diagnosis.

[maryfrancis3]

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?

[Belcar45]

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?

[Chrissy5]

Gosh Ben,sounds like you’re going through some issues with your Drs , sure hope it sorts out for you.

 I kinda know what you mean when you ask questions about stages and so on, they use a language that’s sometimes not so easy to understand at times. You also have a right to know anything about what’s going on with you as it’s your body. I truly understand your frustrations, because sometimes I do think to myself they are working it out as they go along I guess, most probably because it is so rare (there’s that word again) I wish I wasn’t so rare as well.😩