Waldenstrom's Macroglobulinemia

[maryfrancis3]

Anyone out there have Waldenstrom's Macroglobulinemia?

I was diagnosed Feb this year. Have finished 6 rounds of Rituximab and Bendamustine.
Would love to connect with any other WM sufferer. 

[iloveyoudearly7]

Hi Maryfrancis3,

Welcome to our forums! Waldenstrom Macroglobulinemia is quite a specific condition; I have no doubt that there are a few people on here that can definitely relate but unfortunately have yet to discover the post itself. In the meanwhile may I recommend these sites that focus on Waldenstrom Macroglobulinemia primarily?

https://www.iwmf.com/get-support - IWMF - International Waldenstrom Macroglobulinemia.

 Overall main page of general information about Support available.

https://www.iwmf.com/get-support/us-and-international-support-groups ­- IWMF - International Waldenstrom Macroglobulinemia – US and International Support Groups – You can contact and request for Local Support groups information etc. (Just go down to International Support Groups and Regional Contacts then select Australia. The appropriate listed individual’s contact information will display).

http://www.wmozzies.com.au/index.php/get-support - WMOZZIES - Australia patient support group for Waldenstrom Macroglobulinemia. – Overall main page of general information about Support available.

https://groups.yahoo.com/neo/groups/wmozzies/info?guccounter=1 – WMOZZIES Yahoo support Group – You probably need a Yahoo account and request to join for this one.

https://community.macmillan.org.uk/cancer_types/non-hodgkin-lymphoma/f/non-hodgkin-lymphoma-forum/14... ­- MacMillan Cancer Support ­– Another forum site that has Waldenstrom Macroglobulinemia patients and journeys.

I hope these sites will assist in someway or maybe someone in the future.

[maryfrancis3]

Hi hi...
Thank you for the reply.
I am already a member of WMozzies and also IWMF.
I have applied to join the Yahoo group of WMozzies, but haven't had a reply yet. I also requested to join via email, but have not had a reply.
Hence the reason I have posted here 🙂

IWMF is a good site, but mostly U.S.A. members and some terminology, medication and pathology numbers are different than here in Australia. It's not the same as being in contact with people in one's own country.

[iloveyoudearly7]

That's understandable.

May I confirm just in case that you have also checked the IWMF Australia registry too? I was unsure; they might be able to recommend additional local services? There’s contact person for each state.

Adelaide

Peter Diamond, Leukaemia Foundation

+61 8 8169 6035
pdiamond@leukaemia.org.au

Brisbane

Peter Carr, WMozzies

+61 7 5529 0518
petercarr@iprimus.com.au

Nicole Douglas, Leukaemia Foundation
+61 7 3259 1000
ndouglas@leukaemia.org.au

Melbourne

Steve Higgs, Leukaemia Foundation

+61 3 9949 5800
shiggs@leukaemia.org.au

Karen Matoga, Leukaemia Foundation
+61 3 9949 5800
kmatoga@leukaemia.org.au

Perth

Peter Marfleet, WMozzies

+61 4 1043 6666
pem@bigpond.com

Frankie Bird, Leukaemia Foundation
+61 8 6241 1000
fbird@leukaemia.org.au

Sydney

Andrew Warden, WMozzies

+61 2 9974 2277
andrew.warden@bigpond.com

Madeleine Thompson, Leukaemia Foundation
+61 2 9902 2222
mthompson@leukaemia.org.au

[iloveyoudearly7]

If you don't mind me asking - How was your treatment?

[AFJ]

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. 

[Chrissy5]

Hi Maryfrancis3,

I only just joined up with the Cancer council online community only to find out you are another Waldenstrom Macroglobulinaemia.There are not too many of us around ,you might say a bit unique.Im 70yrs old and was diagnosed back in November 2016.I started out on chemo just like you...would love to hear from you and how your travelling.

Cheers Chris  

[maryfrancis3]

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 

[maryfrancis3]

Hi hi 🙂

I have joined every possible group (Australian) which I could find.

[maryfrancis3]

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