topic Re: Waldenstrom's Macroglobulinemia in Living with cancer

Waldenstrom's Macroglobulinemia

maryfrancis3 — Mon, 16 Sep 2019 07:41:27 GMT

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.

Re: Waldenstrom's Macroglobulinemia

iloveyoudearly7 — Wed, 18 Sep 2019 10:36:51 GMT

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/144728/lymphoplasmacytic-lymphoma-waldenstrom-s-macroglobulinemia - 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.

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Wed, 18 Sep 2019 11:27:47 GMT

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.

Re: Waldenstrom's Macroglobulinemia

iloveyoudearly7 — Wed, 18 Sep 2019 12:16:39 GMT

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

Re: Waldenstrom's Macroglobulinemia

iloveyoudearly7 — Wed, 18 Sep 2019 12:17:53 GMT

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

Re: Waldenstrom's Macroglobulinemia

AFJ — Fri, 10 Apr 2020 03:01:08 GMT

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.

Re: Waldenstrom's Macroglobulinemia

Chrissy5 — Thu, 12 Nov 2020 04:44:32 GMT

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

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Thu, 12 Nov 2020 05:06:14 GMT

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

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Thu, 12 Nov 2020 05:09:23 GMT

Hi hi 🙂

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

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Thu, 12 Nov 2020 05:19:05 GMT

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

Re: Waldenstrom's Macroglobulinemia

Chrissy5 — Thu, 12 Nov 2020 06:37:01 GMT

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.👍🌹

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Fri, 13 Nov 2020 03:36:35 GMT

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

Re: Waldenstrom's Macroglobulinemia

Chrissy5 — Fri, 13 Nov 2020 10:30:58 GMT

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

Re: Waldenstrom's Macroglobulinemia

Belcar45 — Mon, 28 Jun 2021 15:58:26 GMT

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:)

Re: Waldenstrom's Macroglobulinemia

Chrissy5 — Tue, 29 Jun 2021 02:26:59 GMT

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

Re: Waldenstrom's Macroglobulinemia

Belcar45 — Tue, 29 Jun 2021 03:07:54 GMT

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

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Tue, 29 Jun 2021 08:57:55 GMT

Hi 🙂 I have belonged to IWMF since my diagnosis.

Re: Waldenstrom's Macroglobulinemia

maryfrancis3 — Tue, 29 Jun 2021 09:02:00 GMT

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?

Re: Waldenstrom's Macroglobulinemia

Belcar45 — Tue, 29 Jun 2021 13:32:48 GMT

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?

Re: Waldenstrom's Macroglobulinemia

Chrissy5 — Tue, 29 Jun 2021 14:21:21 GMT

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.😩