Waldenstrom's Macroglobulinemia

[Chrissy5]

My Oncologist hasn’t told me at what stage I’m at or talk about my long term prognosis either.I had a bone marrow biopsy a couple of days ago and also need a pet scan.So when I go back for my next treatment day in 3 weeks he will let me know what’s happening next. Gosh I hope it’s not too drastic news 🙏 

Although my latest blood test wasn’t the best my protein levels have hiked up considerably,I’m still clinging to hope…although I can’t have the good chemo I had when I first got diagnosed,so it’s something different…that’s all I know.

You said you had 4 other nodes…are they related to the cancer?

I will be asking a lot more questions in the coming weeks ahead as it’s our human rights to know these things.Talk again soon.Chris 

[Belcar45]

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

[Chrissy5]

Yes,I have to be honest…I do get pins and needles in my feet at times and my feet are like ice blocks.

At times though it’s the opposite,my feet get very hot, just craziness really. More so when I was on chemo.

[maryfrancis3]

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. 🙂

[Chrissy5]

Hi Mary Francis,

when I was first diagnosed my oncologist said exactly the same thing,it’s not a cancer that we call the stages…I remember asking him that question.

So now my blood protein has hiked up again…hence the tests I have to go through to get a clear picture once again.I have been on iv Intragam 10 every 4wks for over 3yrs and it’s been keeping me in good shape except for my P/levels. So back to the drawing board  again, I have to be honest I’m nervous about my next stage and what lies ahead for me. My oncologist did say there are a few different  ways to approach it and I guess we will be certainly talking about “just how” in a few weeks.

I hope all is well with you Mary Francis ☺️

[AFJ]

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. 

[Belcar45]

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

[Belcar45]

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.

[Chrissy5]

Hi Ben,

Im so glad things are coming together for you a little bit better since last time you wrote. It’s a very stressful time you are going through so of course our emotions are all over the place.It’s really good the start with chemo and other drugs which will have no doubt have an impact on the cancer. When I was on Dexamsthasone,Cycclophosphamide and Bortezomib weekly thinning out to fortnightly and last couple of months,monthly for approximately 10 months.I got my protein right down to just 1.so out of that I got 4and half good years,which is fabulous.Now my protein has climbed to 34 and we now have to act on it again, and I guess the nature of it…it will in my case anyway always come back.I trust that my oncologist has a few things in mind and has my best interest at heart I will be talking with him at Brisbane icon next Tuesday.Keep your fingers crossed for me.I’m feeling ok and been able to just get on with my life attitude as always,in saying that I’m only human and we do worry just because it’s so rare.He mentioned maybe something orally to me as well,so we will see. I’m eager to see what my Pet scan and bone marrow biopsy showed up ?

I guess how much infiltration will be the clincher 🧐

Im glad you bought yourself a nice comfortable bed 👍well why not!
Stay positive 😀 and keep thinking you have this…and give it all you can throw at it!

Just because you can.Stay in touch.

[Belcar45]

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 🙂