G’Day to all.
I am 80 years old next September and live in Melbourne AUS
In late 2021 I was diagnosed with Essential thrombocythemia (ET). and started a course of HYDREA 500mg tablets in Feb 2022 in Dec 2022 I had a Bone Marrow Biopsy that showed I now have Waldenström macroglobulinaemia (WM) .
I believe to have both is very RARE, can any body please tell me if you know of any other person with both who I can discus our problems ??
My Haematologist is very GOOD but as he said because our population it very small we do no
see a lot of people with Waldenström macroglobulinaemia (WM).
Very Kind Regards
Keith DAWS
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Hi Keith, hopefully someone on this forum may have experience of both Essential thrombocythemia (ET) and Waldenström macroglobulinaemia (WM), as you say it probably is very unusual to have both. I don’t know if you are on Facebook , but there is a very active Waldenström macroglobulinaemia (WM) group “International Waldenstrom Macroglobulinemia Foundation” (I belong to that site) where it might also be worth posting your question (it’s primarily a US Waldenström macroglobulinaemia (WM) audience but lots of other nationalities on it too). They also have a website www.iwmf.com (there is a UK only group and charity but it’s much smaller )
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Hi @kwDAWS @CaroleCW has given you a great response.
I hope others can help as well.
Yes, we are a UK forum so treatments, drugs etc might be different with your diagnosis.
I am so glad that your haematologist is so good, it certainly makes a difference.
Take care of yourself
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I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) in 2008. In 2012 I was diagnosed with Essential Thrombocytosis (Essential thrombocythemia (ET)) and in 2022 I was diagnosed with Waldenstrom’s Macroglobunemia (Waldenström macroglobulinaemia (WM)). I am an 82 year old female in Michigan USA. I am on 500mg Hydroxyurea for Essential thrombocythemia (ET) and Calquence for Waldenström macroglobulinaemia (WM). I feel perfectly fine but am limited with what I can do (especially walking) because of fatigue. My doctors are puzzled with the fatigue factor because that should have lessened with the medication. Do you have that same issue?
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Hi @4673 from Michigan, welcome to our UK forum.
I have a different blood cancer and my main symptom is fatigue.
I was diagnosed in 2003 and I have got to know myself and how to manage my fatigue over the years.
My fatigue is set off by what personally stresses me, emotional, medical, psychological and practicalities. I have learnt to say ‘No’ after 74 yrs and tried to de-clutter my life.
My fatigue can kick in immediately or up to 48 yrs later. I often have a nap in the afternoon and try to have a routine.
Sometimes I will choose to do something knowing there will be fatigue price to pay
This is a personal and not a medical reply.
Look after and be kind to yourself
Good Morning to you all.
It has been six months since I was last on Blood Cancer UK.
When I had my Bone marrow Biopsy Dec 2023I also had a CT scan all was CLEAR just after my last post 26 Mar 2024 I past out at home and was taken to Hospital had a another CT scan and it found a Tumour in my stomach the size of a egg 55mm x 35mm all my blood test were VERY bad including my Platlets now just under 1000 after surgery to remove it + four blood transfusions and one iron, also a heart attack during the operation ,and after three weeks in hospital finally came home end of April less one fifth of my stomach removed
The last five months have been 
Blood test results all over the place NO energy Very depressed and giving the wife a hard time ( SORRY ), since the operation I have been in hospital four more time ,last time my Haematology changed my medication from HYDREA to a weekly injection of Peginterferon to try and get the Platlets down. Now after three weeks I have got some appetite back and try and go out every other day for a walk.
I worked for my self for over 50+ years and did 70+ Hours Per week never sick so this last 20 months has really hit me hard ( including my family )
All the best to you all and take care.
Keith DAWS
Melbourne AUS
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Wow @KwDAWS a lot has happened to you in the last 6mths and no wonder we haven’t heard from you in Melbourne.
I think personally that I underestimated the shock, fear and emotional aspects of what I have gone through. It is only in hindsight I realise them. I certainly did not realise that my family and friends went through their own, often similar ones.
I got very self centered and I suppose the ‘poor me’s’.
Unfortunately I took it out on my husband.
I have also been on the receiving side when my husband was unwell and words did hurt me.
In hindsight I could have communicated better too.
I am glad that you are getting some appetite back, you and your body have a lot of building back up medically, emotionally, psychologically, physically and practically.
Fresh air and appropriate exercise is a good one in my book, just build yourself back up very slowly.
Send you wife lots of love from me and be very kind to yourselves and please do keep posting
Hi 4673. 
I believe to have Waldenström macroglobulinaemia (WM) and Essential thrombocythemia (ET) is very RARE my doctor who is in his late 50 early 60 said he has NEVER heard of anybody having both ( has 5 doctors working for him + 1 from a Cancer Hospital in Melbourne who worked 1 day per week )
Like you I was on 1x500 mg HYDRA tablet a day my Plates have been up to just under 1000 but never below 525 ,I have blood test every 3 months or when ever I feel I am getting worse.
The last 2 years have been a nightmare I also speak to my GP who knows quite a lot about Blood Cancer ( his wife has Cancer )
I have a Blood test 30/09/2024 to see if this new injection is lowering my Platlets and improving any other blood cells ETC
Please try and keep in contact and let me know how you are going 
Keith DAWS
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Hi Keith,
My 1st post here, i am a 54 yr old male in the uk and seem to have joined the rare and elite (makes me feel better) group that has both of these blood cancers.
I am currently in good health although tiredness is a struggle and on a watch and wait program and holding my own.
I hope you make a recovery to a point you are happy with it, its quite a lot to take in to start with isnt it.
Keep safe.
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Hi @Bmfcrash welcome to our forum.
Thanks for letting us know what is going on for you.
It is a lot to take in to start with, especially if you are in shock as I was with my diagnosis.
I hope to hear a lot more about you and how holding your own is for you.
The Blood Cancer Support line is there for you on 0808 2080 888, if you need it.
Really look after yourself
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Thank you Erica, not sure how much I will be on here, but it is always good to have different outlets where others have a better understanding than most of the friends i have.
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Hello @Bmfcrash,
Welcome to the Forum.
I do hope you can find some support from others here, like you say, those that have an understanding of how you feel and what you’re going through.
It’s good to read that you’re ‘holding your own’ and other than fatigue, you are well.
It’s important to know that your blood counts aren’t reflective of your symptoms. So you may get times when you’re feeling more fatigued, but blood counts are stable, still tell the Haematologist how you are feeling, they can help.
Many people on ‘Active Monitoring’ (or watch and wait) feel they can’t tell their Doctor about symptoms because the blood counts are ‘fine/stable’ but it needs to be recorded in their notes and they can be supported properly.
Yes, there is a lot to take in at the start, but over time you will become the expert in your own health and blood counts. It’s complicated in the beginning and there are many elements that can feel overwhelming.
Do know that you are always welcome to call our support line if you ever need to talk anything through, we’re here to listen and help. It’s a free and confidential line: 0808 2080 888.
Take care, Heidi.
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Thank you Heidi,
As I am on watch and wait then things medically are as good as I can hope for really.
Sometimes i feel a bit down with the idea I now have a cancer, all be it different to the cancers any of my friends or family have had to deal with.
My consultant said i have both Essential thrombocythemia (ET) and Waldenstroms which came as a bit of a suprise but I would assume as regular monitoring is happening I dont need to be concerned any more or less than if I had one condition only.
Onwards and upwards, I feel ok if a little tired so treat each day as it comes.
Best wishes
Martin.
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G’Day Martin.
Welcome to the special club as my Haematologist calls it 
I did not go on watch & wait he put me on Chemo tablets straight away for Essential thrombocythemia (ET) as for Waldenström macroglobulinaemia (WM) he keeper me on tablets until the tablets did no seem to be working and he then change to injections ( Now he is VERY happy ) last BT was the best he has seem ( next BT early March )
I believe in AUS we have about 50+ people a year that are diagnosed with Waldenström macroglobulinaemia (WM) not sure about Essential thrombocythemia (ET). I have been told that I could be the only person in AUS with Essential thrombocythemia (ET) & Waldenström macroglobulinaemia (WM) ?? I know there was only one person in China that had both not sure about the UK ?
I have a lot of faith in my GP & Haematologist every time I see them I have a list of questions to ask them which I find a good way of getting answers about all my results etc. I also have a Blood Test Tracker Excel file to input all my results and Graphs this also help me understand what is going on and it beats paper work and it lets me input 340+ BT results
My health is up down I find I don’t have the energy like I use to have but put it down to age 
so some days I have a nap for a hour or two seems to work , Appetite all aver the place this I put down to having 1/5 of my stomach removed with the tumour GIST operation.
All I can say to you is stay positive look at any Info you can find and ask questions because we all have different symptoms and different medications to take.
All the best and hope to hear from you again
Keith
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Thanks for the reply Keith, I am more worried than ‘ill’ at the moment, so long may that continue.
It’s strange that there are so few with both conditions and I hope the team reviewing my case can get all the information required if I need to start treatment in the future.
I consider myself young (54) to have this going on so hopefully fit enough to cope with anything it chucks at me, and the fact I am on watch and wait means I am fortunate from both a stable point of view and the fact I am being monitored going forward.
Nice to hear from you, I feel we have a strange kind of bond, based on some pretty improbable odds…
Keep safe and speak soon.
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G’day Martin. 
Just a short message to see how you are going.
Can you tell me what you got first Essential thrombocythemia (ET) or Waldenström macroglobulinaemia (WM) and when ? My Haematologist is very good not sure how the UK systems work ? I saw him just over a week ago and all my results are very similar to the last one he said the Essential thrombocythemia (ET) was the best I have had for a long time but Waldenström macroglobulinaemia (WM) no change see him again in 3 months unless things change.
When I have a blood test some times they take 3 or 5 viles because he looks at all the tests they do ( example ) Last BT I got 54 results so I can compare them over the last 4 years which I put into my Excel file .
Please let me know how you are going maybe we can compare BT results. I have a very positive outlook about my health BUT some times I fell very frustrated because there is no-one in Aus that I can talk to PRIVATELY and compare symptoms ETC.
Anyway please take care and all the best 
Regards.
Keith DAWS
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Hi Keith,
I am good thank you, hope you are doing well.
I had nothing wrong that even made me consider I had any form of blood issues never mind two pretty uncommon ones. I initially presented to my doctor with bloating in my stomach, which I though was maybe diet related like gluten intolerance or something similar.
After a range of blood work, scans and a BM biopsy did the result return an initial diagnosis of Non-Hodgkin lymphoma (NHL), but waiting was waiting on final tests to be finished to determine what type.
My first face to face with the oncology team rather than haematology was when they told me I had two different conditions (Essential thrombocythemia (ET) and Waldenström macroglobulinaemia (WM)) neither of which fortunately need treatment at this time maybe bue to my age (54) and Oher low risk factors, and my levels not being elevated enough to warrant the associated risk of treatment.
They take the same viles from me as well, and these need two weeks to ensure the longer tests are completed prior to my 3 monthly check up at the clinic (watch and wait).
I don’t collate my results as they said they can fluctuate anyway and should anything change significantly then the team would review how best to proceed at that time.
Not sure how long this could have been going on as I have no blood work on record prior to this whole situation so no historic blood results to go on.
I consider myself fortunate given my own circumstances, based on my age, and currently now being monitored rather than going about my days unaware that something is off and we are able to react as and when required.
I do have issues with being very fatigued though, nap and sleep alot (but always have) and don’t feel like a good sleep actually makes me feel fully refreshed and ready to face the day, Thought it was because I was getting older but could be border line anaemia, do you have fatigue issues?.
I still work as I did pre diagnosis as life carries on as before, now I have my head around it all a little I feel the same today as I did this time last year so I’m grateful for that.
We have a couple of things in common, which make us pretty rare cases, keep me updated and stay in touch.
Best wishes
Martin
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Hi 4673.
Just checking to see how you are going and if there is any improvement in your Essential thrombocythemia (ET) & Waldenström macroglobulinaemia (WM).
Since I have been taken off HYDRA tablets and put on PEGASYS injections I have had some GOOD BT results and the Haematologist is happy. he now thinks the Essential thrombocythemia (ET) is under control 
I am still very fatigued but starting to realise MAYBE it is age having worked 70+ hrs P/W all my life.
Please try and keep in touch also we have a new member who has joined our special club Martin ( Bmfcrash ) he is only 54 years old so maybe you can send him any info that could help him
Regards
Keith DAWS
AUSTRALIA
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Hi @4673 good to hear from you again.
What we always advice is that all products are checked out with our medical teams before taking them as they might have a reaction with our medications.
Look after yourself and take lots care.
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Hi 4673.
Very glad to hear from you ( beautiful letter ) , I have a VERY good Haematologist he has his own practice and is up to date with all that is going on with Blood Cancer ETC
BUT I do NOT have a lot of faith with some of the things they doctors say so I do my own research and then speak to him, it is surprising how little they know about Essential thrombocythemia (ET) & Waldenström macroglobulinaemia (WM) because it is so rare .I believe I am the only one in 
with it ( lucky me ).
In 2022 after 4 blood test they found Essential thrombocythemia (ET) and started me on 1 HYDRA tablet a day at one point I was on 15 HYDRA tablets a week BT results were all over the place .Plateltes just under 1000 , December 2023 I had CT scan ( all clear ) and a Bone Marrow Biopsy and that is when Waldenström macroglobulinaemia (WM) was discovered .
In early March 2004l I collapsed a couple of times at home and was rushed to hospital and they found my Iron was very low had 3 blood transfusions + Iron Infusion , 4 weeks later back in hospital again this time for Endoscopy ETC because they thought I may have been bleeding from my Bowel .
But they did find a Tumour in my stomach ( NOT THERE 3 months ago ) 3 days later had it removed and 25% stomach removed they call it GIST opp . ( also had a Heart attack during the opp 
) Now wish I never had it removed .
I found a Medical paper about a person in China with Essential thrombocythemia (ET) & Waldenström macroglobulinaemia (WM) who was on PEGSAY injection + Aspirin , I believed ? that he is now in remission ?. Spoke to my haematologist and he know all about him , and started me on PEGSAY ( STOPED HYDRA ) around 6 months ago so far my Platelets , and all Blood test are getting better and are under control he said at my last visit he thinks Essential thrombocythemia (ET) is now under control an is happy next BT late June then see how BT going
I have had my own business for over 55 years employing 34 people my average working hrs was over 70+ p/week never was a good sleeper ,but now fatigue is taking it toll I now have to say it is AGE causing it
I have my own Excel file to input all my BT results but it now become very messy so I brought one lets me import up to 347 tests of your choice also I have put in all my BT back to 2017 so I can see highs & lows in a Graphs . every BT I have gives me 54 results so you can see dates when things are bad etc
I read your letter and some of you results are very different to AUS example our Hemoglobin (Hb) should be around 130 to 180 g/l and RCC 4.5 to 6.5 x10^12/LI
I think USA and AUS have very similar health systems , I ,we have private health insurance for over 59 years it has been a life saver because if I ring any Doctor ETC I get in next day also hospital but it cost us a lot of $ per month ( Should be mad compulsive in my option ). our 2 children both have it, I do worry because our son has take over the company and is working long hrs and not a fan of GP etc Daughter Real estate owner and just like her brother
Any way please keep in touch and keep looking and asking questions we all have different answers and symptoms ETC. I try and stay positive but it is very hard when one can give you an answer you want to hear as my old Dad use to say
LIFE WAS NOT MENT TO BE EASY and THERE IS ALL WAYS SOMEONE WORSE THAN YOU.
Very kind Regards
Keith DAWS
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