CMML - new diagnosis

[ChrissyD]

Hi @Matilda

So sorry I’m a bit late on replying as it’s peak allotment time, the courgettes are kicking off, and I’ve just left another charity I’ve worked for for over 12 years so had a lot of work to hand over!

Anyway. Regarding your Dad. I’m so sorry to hear of his diagnosis of Chronic myelomonocytic leukaemia (CMML) and completely understand your anxieties over his prognosis and on each occasion he has blood tests. I’m sure being medically trained yourself might make you go to worst case scenario each time?

However, here are my thoughts, having now had Chronic myelomonocytic leukaemia (CMML) - diagnosed formally 16 years ago and probably undiagnosed for around 5 years before that -looking at some symptoms I had.

1. Take comfort that a Chronic leukaemia is usually less serious than an Acute one! Chronic can often mean the Leukaemia develops slowly over time.
2. If he does not require any treatment, that is also A GOOD THING and not anything to worry about. I have never had any treatment and regard that as a huge benefit.
3. Once you can find out his genetic mutations, there is a prognostic tool called Chronic myelomonocytic leukaemia (CMML)-Mol which you can feed in the results. You can Google this and if is very straightforward to use. HOWEVER, these tools are not set in stone and the results given are in median survival years. You probably have a better understanding of this from your professional point of view but it isn’t helpful in giving the full range of survival times! @Unclejack mentions a leaflet he found. I found one 15 years ago which gave median survival times of 12-18 months and yet, here I am, still living!
4. If you want to know more about Chronic myelomonocytic leukaemia (CMML) please view the video on Myelodysplastic syndrome (MDS) UK patient support group website. It is very helpful and reassuring. I’ll send the link on my next message.
5. I hope you can get your parents to engage with you more about this. Parents carry on wanting to protect their children -even when those children are adults!
6. @Unclejack says I’ve been “fighting” this disease. Sorry but haven’t been doing that actually, and I have always rather strongly objected to all the battle analogies used in cancer talk!! I am merely “living with it”, trying to do the best I can - to eat as healthily as I can, exercise as well as I can and pursue an unstressed lifestyle. Whether that has made any difference at all I do not know. I’m just giving gratitude for having been around for a lot longer than expected from the leaflet I read!!
   Best wishes to you and your Dad and Mum. Xxx

[ChrissyD]

@Matilda
Herewith link to Chronic myelomonocytic leukaemia (CMML) video

'CMML Diagnosis & Treatment' - a presentation by consultant Dr. Daniel...

[Unclejack]

@Erica @Matilda @ChrissyD
I apologise for my ‘war footing’ rhetoric. I really wish I could be as calm and level headed as Chrissy D and Erica. But we are all different. I like Chrissy had my symptoms before diagnosis, at least 2 years. So that’s about 2 and a half years before diagnosis 14 months ago. Strangely my worst blood test results were at their lowest on the very day I was diagnosed. So on that reckoning the next hurdle is 4 years. Many years ago I was a regular blood donor, then one blood donor session after a test it was discovered that I was slightly anaemic. I wonder sometimes if that was the first sign of a problem. I have just had a blood test and speak to my consultant on Friday. I normally discuss my results on the forum to give others as much information as possible. At the last test my platelets were 53, my monocytes were 129, and neutrophils had slipped back into abnormal at 1.8. Strangely I never seem to get a cold or any other infection up to now thank god. I have no symptoms of thrombocytopenia or neutropenia up to now although blood test confirm this is definitely the case. I did change my diet at diagnosis and my blood tests have gradually improved I can’t discuss this anymore on the forum as it has caused some controversy and I am a totally unqualified person. Anyway I hope my test results help your assessment of your father’s condition. At present I am still on watch and wait and not taking any medication.
The very best wishes to you and your parents.
Unclejack.

[ChrissyD]

Hi @Unclejack @Erica @Duncan @Matilda

Everybody needs to work out their own way of dealing with it. I just personally dislike the idea that our society seems to expect people with cancer to say they’re going to fight it and remain positive. So,if the cancer
“wins” and you die, does that mean you didn’t fight hard enough? And why should you be positive all the time if you’re enduring horrible symptoms, or are anxious about what’s ahead, or if you’re angry and fed up with it all?! I just heard a Radio 4 programme on the topic of “Toxic positivity” which really rang bells with me!

We can all have our own ways of living with this disease and our nearest and dearest should listen to us and empathise with how we are feeling -not try to jolly us up and make light of it!!

I’ve only arrived at this point because I’ve been lucky enough to have a lot of years to find out what I’m comfortable with.

Take care all of you

[Duncan]

Totally agree with you @ChrissyD. Soon after diagnosis last year I noticed a lot of that battle language used any time cancers were mentioned and it just didn’t match my experiences or feelings.

It isn’t a war between the cancers and ourselves. None of us chose to be in these situations. It seems very one-sided—clearly the cancers are doing their mutating and we’re learning to tolerate their side effects. If anything, it’s more like an invasion.

My other half has been primed to make sure there’s none of that battle language used by loved ones should I pass away first, sorry for the morbidity. It does seem to be the default terminology used in media like news, films and TV. Presumably it’s written about by folks who don’t live with cancer, its symptoms, or side effects from treatments.

I like how you say you arrived at this point due to being lucky, @ChrissyD. That sounds more akin to how I feel. Definitely feels fortunate to find these cancers and live to tell the tale. The less said about toxic positivity, the better! Rather the sometimes grim reality of living with cancer than denying/pretending anything is wrong, I’d say.

There seems to be quite a way to go before the general public stops thinking that those of us living with cancers and having treatments are at war. There are too many actual wars affecting innocent people as it is, we don’t need more of that violent mindset!

[ChrissyD]

Hi @Duncan

I recently wrote to the guardian about this and it seems we’re not the only ones to feel so alienated by all the fighting talk! I’ve vowed to haunt anybody at my funeral who says I fought bravely!!

[ChrissyD]

Thanks @Duncan for sharing a similar approach and your own view on coping strategy. I have found it quite isolating when so many others are out there are “fighting away” and being all cheery and positive when I’m not doing anything and just moaning about my mouth ulcers!!

[Duncan]

Oh @ChrissyD I love this so much! Good for you for writing in, it’s motivating me to also do more to elucidate others about the reality of living with these dratted blood cancers.

I am sorry you have any symptoms at all though, moan away I say! Have you found anything helps the ulcers? For me, talking about what we live with around others helps to normalise it and also makes me feel less isolated like you say. Have you found writing creatively just for yourself useful? I’ve joined a couple of writing groups and it’s such a great way to express the frustrations and achievements of all this.

As we know, thanks in large part to this forum, we really are not alone even with these rare illnesses. Thank you for again for sharing and for getting the word out, you’ve inspired me to do likewise! Now who can I write to…

[ChrissyD]

That’s great news @Duncan ! You’ll soon be channelling your inner “Disgusted of Tunbridge Wells”! Except I maybe recall that you live abroad? If so, how is your care and treatment there? I cannot seem to search for your original post.

Also @Unclejack. I was a bit puzzled about your last monocyte count? 129? Is there a missing decimal point somewhere as I’ve never heard of one that high?! Mine hovers around 1 but I know others have quite high counts. Back in the day when the criteria for Chronic myelomonocytic leukaemia (CMML) was >1, I was basically in and out of Chronic myelomonocytic leukaemia (CMML) -especially when Addenbrookes changed their blood analyser to one which couldn’t recognise dodgy shaped monocytes so lumped them in with an unknown white cell category, giving a low monocyte count!! So I was quite often NOT Chronic myelomonocytic leukaemia (CMML)! But now the WHO in its wisdom has lowered the criteria to 0.5, I always have Chronic myelomonocytic leukaemia (CMML)!!

[Duncan]

Ha ha ha yes I’ll have to write into the SF Chronicle or Oaklandside as Disgruntled Brit Abroad, San Francisco Bay Area!

Thankfully there’s Obamacare here in California which subsidises overall healthcare costs much like the NHS, and our local health insurance is with a great health organisation that deals with all aspects of healthcare. It’s all very joined up and online so my doctors can easily communicate with one another and me, and I can see test results by default in a phone app or online.

Not going to lie though, I do miss how ‘free’ healthcare seemed via the NHS. It’s still very strange paying outright for some aspects of care here, like my monthly blood tests, while other stuff seems free. Don’t think I’ll ever be able to predict healthcare costs!

This system also means you can be more proactive in your own care, and selective about who you pay for healthcare, hence why I was able to change from my former rubbish haematologist to a really lovely recently trained one.

So lots of pros and cons compared to the NHS. I’m keeping my fingers crossed that the new government there will be able to resuscitate the NHS

[Iain]

@Duncan , @Unclejack

Hi, I’m on the sideline just listening in.
Re Monocyte count 129, mine currently sits at 0.8.

Is this sizable variation down to the many variations in the units of measurement clinically between the US and UK?
As a diabetic I’m often needing to convert US data to mmol/L, and even when metric values are used they often differ by factors of 10 such as /dl or /cl.

Am I the only miscontent that wishes a international clincal measurement standard be used?

[Duncan]

Hello there @Iain, I’ve seen your informative and fascinating posts around the forum. I’m sorry to read of your diabetes on top of that other stuff, I trust that it’s manageable.

Have to admit I haven’t had too many issues with unit conversions for blood-related measurements, I think mostly because I’m just old enough to have been taught to use imperial, which funnily enough now suits me in the US. Although weirdly my various medicines in pill form are measured in grams here.

I can well imagine how finicky it can be when you need to convert quantities as well as measure your medicines, especially liquid ones.

So yes I’d love a universal measurement system!

(And don’t get me started on US/UK recipe conversions!)

[Iain]

Hi @Duncan,

Thanks for your kind words.
My Waldenström macroglobulinaemia (WM), T2Diabetes, Hypothyroid, Pericardial Effusion, Perigo Nodular and a permanent snotty nose are all under manageable control thanks.
British stiff upper lip and all that old bean.

As for you guys over in the colonise you must remember that the disappearing Imperial units of the UK and Commonwealth are themselves different to those in the Imperial Republic of the United States.

Pints different, Tons lighter in the States (2000 pounds against 2240 in the UK) and several others.

I was educated in both Imperial and Metric as the Country went all European with the International Systeme Organisation (ISO) metres, newtons, milli, mega kilo etc. Then for no apparent reason this standardisation was screwed by the education establishment teaching kids the CGS (centimetre, grammes, seconds) non-adopted alternative.

As a professional mechanical engineer it was a pain teaching apprentices the legal measurement standards.
Maybe that’s why I’m a little guarded about Dr Google quoting a clinical value but not giving the units, believing there’s only one audience. There can lay confussion and distress to those diagnosed with a morbidity, e.g.Blood Glucose at 108 (mg/dl) or 6 (mmol/L).

But lets compromise and accept that as long as that nice Nappa Valley wine turns up in 70cl or 16fl.oz bottles I don’t give toss! cheers.

Now you go and enjoy your California sunshine, see if I care

Keep safe
Iain

[Unclejack]

@ChrissyD @Matilda Erica.
Hi all
I have all my blood test results downloaded o the NHS app GP health records. At the side of each result it gives the range of that particular reading. On monocytes it states the upper level for monocytes is 100. My highest reading was 179 a while back. I know what you mean. I think some medics use a different system to do the calculations. I notice Vit D levels can be confusing and calculated using a different formula. I think if you look on the NHS website it might explain how it’s calculated. I read an article the other day that said monocytes were not a problem if below 500!!! How they get that figure only god knows!!! Anyway my consultant is happy that things are stable although I get my blood results
Friday so that might all change! Thanks ever so much for your support but according to the NHS app things are stable.
Thank god. I do have to ask my GP to download my blood test results as these are not automatically sent to my GP as the tests are requested by haematology. Strange system but my GP is very obliging and always willing to help. Thank god for this forum nice to know that there’s always someone covering your back with good advice.
Best wishes unclejack.

[ChrissyD]

Hi @Duncan @Iain @Unclejack and all.

Yes some improvement in the NHS is what we are all hoping for but clearly that won’t happen overnight -given how run down it has become. A close friend’s son did years of medical and surgical training and became a GP but after a few years -despite winning all sorts of awards from his patients - had had enough of the pressure and admin and emigrated to Australia 2years ago. He now works strictly 8-5 and is completely free all weekend. He has his own 1000 patients so he gets to know them and they get continuity of care. 70% of his patients are on state healthcare and the rest are private. Sounds pretty ideal to me and his work/life balance is great. Also much better paid!

Having said that I did 2 e-consult forms on Monday and got responses and actions back within an hour for one and 2 hours for the other! The NHS app is also great to see all personal details and consultations.

I have a feeling that @Unclejack may have misquoted his monocyte count of 129 as his neutrophils are 1.8 which is the type of unit usually used and I’d be surprised if different units were used within the same blood count? But I stand to be corrected. If so, that’s a whoppingly high count?!

It’s very confusing now that the Hb count units have been changed but I’ve noticed much inconsistency as sometimes the new unit is used eg 120 and others sticking to the “old money” of 12!! Just to keep us on our toes!!

[ChrissyD]

@Duncan Pleased to hear that you’re now getting good care and managing to navigate the complex healthcare system in the US. I’m so thankful that we don’t have to do that here. It’s bad enough getting these shocking diagnoses without having to worry about paying for very basic things like blood tests!
@Iain Gosh. You have a right old complicated health situation and you make light of it but it must be wearing at times so feel free to unload here and relax that stiff upper lip, old bean!

[ChrissyD]

@Unclejack Ah I see. If your hospital is quoting 100 as upper limit for monocytes, it’s clearly using different units to what many of us are familiar with wherein the upper limit is quoted as1! And the WHO have changed that criteria to 0.5 as upper cutoff for Chronic myelomonocytic leukaemia (CMML) diagnosis. So your monocyte count -in my book- is 1.29!! Not as alarming as I thought! Mine hovers around 1!

[Erica]

Hi @ChrissyD @Duncan @Unclejack @Iain
I have found that several of my blood counts have changed the way they are recorded and the normal range over the years,
Also it can depend on the testing centre upon occasion.
It is all very confusing but I go by the NHS guidelines.

[Iain]

Hi @ChrissyD @Unclejack @Erica @Duncan @Matilda @Nichola75 and all forum friends.

Interesting thread showing our differing data, how much we understand it and the importance of its clarity and communication.

As with all of us I’m not medically trained or qualified, unless you count 24 years a St John first-aider.

But having had traditional Hodgkins 40 years ago (chemo /radiotherapy) then perhaps I’m a little more ‘hardened’ mentally a second time round with Waldenstroms.

Being a converted engineer into a health and safety/environmental health officer I’m by nature and training a bit techy and analytical with data.

I feel it important with my comorbidities that ensuring the differing 'ologists I see are holistic in their thinking and fully informed of my numbers. Good for me and for the studies.

To give an example I was in my quarterly Haemotologist consultation on Monday last.
In my debrief with my Clinical Specialist Nurse I highlighted some points raised both myself, and my GP/Diabetic CSN concerning both raised Thyroid Stimulate Hormone (TSH) whilst my Thyroxin itself remained in range. Also my GP keeps referenceing increased protein in my urine and the need to monitor and protect my kidneys. Suggestions again being made to additional meds to control both issues.

Be minded my GP and Haemotologist access the same pathology lab data including full blood count and Immunology results.

So when I pointed out to my CSN that my NHS app data showed massive hikes in such as Creatinine ratios and proteins, eg 100 fold icreases she was not aware. Also be minded those NHS app results were of the GP’s requests for Diabetes and Thyroid. They do not record the Haemo/Oncology requested results.

I pointed out that these various hikes all commenced in mid 2022 when I started a drug trial of Rituximab and my daily Ibrutinib, of which I’m 2 years in. This was “new” to the ward staff records to date.

I’m on a treatment trial, to me every bit of data is required and potentially relevant. Those guys are ace and made clear I was to have a consultation with my GP re clarify understandings of data and implications.

So please bare with me if I appear a bit OTT on the numbers but all these 'ologists, great that they are, can easily become targeted to their topic, I like to ensure they know the full picture. It’s like @Erica so often reminds us “write down your Q&A’s when in consultation”

As I said to a Med Student recently, "if the patient doesn’t communicate you stop being a physician and become a veterinary ".

Again please forgive my ramblings but I believe our mixed experiences and characters are the value of the forum.

Now am I on the "uppers’ or the ‘downers’ next?

Take care all
Iain

[Duncan]

Ha I love how you tolerate these various measurement mismatches @Iain despite how they’ve got in the way of your work. I think if I had to regularly do all these conversions in my own work I’d possibly change career!

As for Dr Google, I’ve steered clear of that for blood cancer information as I just kept finding utter nonsense. Amazing how outdated much of the easily searchable data can be…

For now though, I’ll enjoy whatever quantity of red wine I can, so long as it’s delicious and preferably local. Sonoma wines are also renowned for being tasty, should you like your Californian reds. Cheers