Hi Ben, So pleased to hear from you Ben,sorry it’s been a while since I last wrote…life has been a bit crazy of late.😵 I was told about 7weeks ago that I will be going through 6cycles of chemo in the next 6months,and I should  finish about a week before Xmas. I have since had one cycle of 4 days straight (that will be each month) so 5 more to go, Plus I  still have to have my intragam another week each month. The 4 days straight is pretty tough and by day 4 I have to drag myself out of bed to basically get there. All good, I have fabulous family and friends who rally around me and keep on giving me encouragement none stop, and I always apologise…especially to my husband before hand if I get a bit out of sorts…that I’m truly sorry. Ben I know what your saying about  your blood readings, Iv actually stopped looking at them for a couple of weeks now…it’s dam depressing and very confusing.😵‍💫My levels are all over the place and not much of it is normal unfortunately. I once said to my oncologist that my life in basically in your hands,and that’s the reality of it all. We have to trust that they have our best interests at heart ❤️ while they are trying to get a handle on our rotten cancer it will alter just about everything, pretty potent those drugs! All my levels are very low or extremely high,my white cell count is very low atm so just staying at home in the Hope I don’t get sick or a temperature.I am taking antibiotics every day anyway to hopefully  ward off anything that starts.😬 So I know it’s harder said then done but try not worry about your levels ,trust that your Dr is watching closely…but keep asking questions,they like that and it prompts them to question different options 🤔 our blood results are more then likely similar in some respects but also very different in others due to different types of chemotherapy and drugs that we are taking.I hope you have not been too ill 😷 and managing to eat sleep and do most things that you normally would do, although I myself have to change arrangements at the last moment.That’s ok too. Please stay in contact,I enjoy hearing from you and how your going,take care.😊 ... View more

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. ... View more

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 ☺️ ... View more

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. ... View more

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  ... View more

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.😩 ... View more

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 ... View more

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 ... View more

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.👍🌹 ... View more

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   ... View more