I feel a fraud having no symptoms of CMML

Chronic myelomonocytic leukaemia (CMML) is a rare type of blood cancer. In CMML there are too many monocytes in the blood. Monocytes are a type of white blood cell.

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Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 02 Sep 2021 14:03

Hi Chris, Bronwen and others, Thought I would let you know I have taken a turn for the worst, but not in CMML. Having said that I feel fine just the same as before my CMML diagnoses. Having had an issue with my voice (which is now okay) visited doctors had an X-ray that threw up issues with my right lung not there in 2019 last X-ray. Having had CT scan and also a PET scan they aren't able to determine cause of what is called pleural thickening so cannot treat it so having to undergo a VATS operation to get a biopsy. This is usually done by key hole surgery under general anaesthetic and I am having it done on Saturday 4/9 at St James Hospital Leeds . Worst case scenario is could be mesothelioma, so I will have to wait and see in a couple of weeks time. Hope you are all keeping well will let you know how I go on will have to spend a few days in hospital unfortunately. Good news we will be getting the 3rd vaccine. Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
BCEX14
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Re: I feel a fraud having no symptoms of CMML

Post by BCEX14 » 02 Sep 2021 16:44

Hi Graham
So sorry to hear your news, as if you havent got enough to contend with! Atleast you are in good hands and they are doing all the tests they can.
Have you had exposure to asbestos in your life time?
Keep your chin up, we'll keep everything crossed for you and hopefully it wont be as bad as you fear.
Do keep us informed, and know that you are in our thoughts
Bronwen
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 02 Sep 2021 20:30

Hi Graham. Thanks for letting us know. One darn thing after another sometimes isn’t it?! Wishing you well for the biopsy this weekend and no doubt a long wait for results? Must be hard not to keep thinking and fretting about it but a friend of mine advised me not to worry about anything until I knew for sure what I was to worry about. Good advice but I’m not sure I always manage to follow it!

Fingers crossed that it isn’t malignant.
Do let us know how you get on. We’ll be thinking about you.

Best wishes

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 03 Oct 2021 16:37

Hi Chris/ Bronwen ,and fellow CMML patients. Its now 4 weeks since the VATS was done for the Biopsy and the results are through and the pleural is negative for malignancy . Unfortunately the story doesn't end there, as its not uncommon for the condition to progress to malignancy later. However now they have the full picture and they can track if it progresses, by monitoring it with CT scans. So I am not only on watch and wait for the CMML I am now on watch and wait for pleural thickening which was caused by asbestos exposure.From probably my Royal Navy days when on HMS Bulwark I had an asbestos lagged pipe right above my bunk along the full length that wasn't even an arms length above me.
As for my CMML the bloods, have almost returned to normal I am only 25 over on the platelets and monocytes are normal two test in a row. After two and a half hour late in being contacted by a haemotologist the other week they could offer no reason for the improvements or assure me about the quality of the blood or what it could mean. I concluded after the call it was a waste of time.
I did feel apprehensive before the VATS surgery what with having Atrial Fibrillation , CMML but speaking with the operating team before hand, alleviated alot of worry, at the theatre I was asked what choice of music I would like to listen too. I chose the Dave Clark Five heard a few lyrics next thing I was being woken up. The Ops team I was told listened to the whole album. Despite being connected to various tubes and oxygen I did not experience any pain at all after or the since the op and its now completely healed.
I still feel a fraud reading some of the experiences of other having a really hard time and here I am with three medical issues of concern and still feeling good.
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 07 Oct 2021 13:38

Hi Graham, Bronwen and All
Sorry for delay in replying, Graham. I started a reply and had already done a lot of writing, carefully saved my Draft.... to be continued..... and then found it wasn't there. So I've been sulking for a couple of days!! Hope I can remember what I said!

Mainly, it was to say what a relief to find nothing malignant - though understand your caution regarding anything developing in the future. Your Royal Navy experience with the asbestos lagged pipes over your bunk must surely have been repeated with thousands of other serving personnel. I wonder if there is a class action taking place anywhere seeking compensation? There jolly well should be!! And having double watch and wait? At last you have previous experience in this! The main thing is you are still feeling fine and not needing any treatment so that's all good! And good news about your blood counts being improved. Wonder why? Like interest rates though, they can go up and down!

Fancy making Ops team listen to the Dave Clark Five. That's very retro - took me back to my youth just thinking about Bits and Pieces! :D

Beginning to have a final clear up on the allotment. 2 of the courgette plants are still producing so they will stay in a bit longer. All main crop potatoes up and just waiting for a few butternut squash to ripen so need a bit more sun!

Very busy with MDS UK work these days. If any of you with CMML would like to join me in a Zoom session, we could see if we can get Dan Wiseman to come and speak to us again. Let me know if you are interested. Meanwhile please do join any of the meetings that you can. It would be good to see you - as we're such a rare group - even in the MDS rare-o-sphere!

best wishes to all
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 21 Nov 2021 15:15

Hi Chris, Bronwen and other CMML members. Well I am pretty much the same as last time I wrote, little change in any of my conditions. Had telephone conversation with CMML Doctor last Thursday they were happy with blood results not changing a great deal, have Platelets, Monocytes and Eosnophils just higher than average. I think your suggestion Chris, of having a CMML zoom meeting is great idea and if we got Doctor Wiseman would be a bonus, just finished watching your interview with him.
I am reorganising the whole of my allotment to ensure in the future I will be able to manage it given I can expect a restriction in my breathing ability I think the modern day term would be future proofing. Had a poor year potatoes devastated by keel slugs , had club root in 70% of my brassica and lost all tomatoes to blight. The best and a great success was growing dahlias from seed. I was amazed at the size they grew too and the quality of the plants I always thought you needed tubers to get a good flower not so I think. Its also very much cheaper.
Sorry for the late response but at the moment I am researching Pleural Thickening and trying to deciphers notes by the specialist respiritory consultant to my GP's Practice. Thats another thing I no longer have an allocated GP anymore its pot luck who you get not always a doctor could be the practice nurse. Telephone calls take at least 40 minutes waiting, was 27th in queue last time I called.Most of my hospital letters are addressed to a different Doctor each time none of whom I have met except one when I had a flu jab.. The only good thing is you can electronically view your records and you can get a response by completing the 20 questions, with multichoice answers, electronically. Whats annoying is they have never published any information to patients how things are changing , I fell sorry for the elderly who have little or no contact with the electronic world we are now living in. Graham H
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 19 Jan 2022 18:11

Dear Graham, Bronwen and All CMML people!

Massive apologies for not replying sooner Graham! I don't know what happened! Well, thinking about it, I do actually! Had 3 separate family crises just before and just after Christmas. All now thankfully resolved but it was a bit stressful! Plus lots of MDS work in the run up to Christmas and the hours just slip away. Good job the allotment is put to bed for the winter. I like your plan of futureproofing, Graham. We've done a lot to reduce digging. Planting our potatoes in their own square holes rather than a long trench for past couple of years saves us lots of earth moving and produces just as good crops! Yay! Ditto covering everything over with breathable membrane for the winter keeps the weeds down and the soil moist so we can sow straight into it in the spring!

Hoping your pleural thickening is not worsening and everything clear lung-wise?

I'll see if I can interest anybody in a CMML-focused Zoom meeting. I'm sure Dr Wiseman can be persuaded to come along again as he has a CMML research project on the go and might like to advertise it a bit to potential trial participants!

Meanwhile, do try to join the Zoom meetings everybody. There's always some up to date info about vaccines etc.

I hope you are all aware that, if you have been identified as immunosuppressed, you should be due a 4th vaccine 3 months after your 3rd primary dose? From the experiences of MDS UK Trustees and Local Group Support Ambassadors, I would advise that you might need to chase this as the system doesn't seem to be uniformly efficient! I gt mine OK last week but I didn't receive an official NHS invitation and had to email my GP about it!

Additionally, everybody who is immunosuppressed should have received a letter from NHS before Christmas advising them that Covid treatments are available to people who do catch Covid. Everybody should have received a PCR kit to have ready for when symptoms are recognised. The result of a positive Covid test should trigger a delivery of antiviral medicine to you via the Test and Trace system. However, our experience is that many people (who were previously identified as immunosuppressed) have not received this letter or the PCR kit -which should have been delivered by 10th January. So again you may need to chase by ringing 119 - though they don't always seem to know about it either! Alternatively, order a PCR kit online by stating that you have been asked to do so by a health professional! The medecine is not prescribed via your GP - though if you do get Covid and don't receive the medicine you will need to contact your GP (Yes - good luck with that Graham!) who will arrange for it to be sent to you. My o=wn GP system has now removed the system whereby you are told where you are in the queue with one which just reassures you that your call is important (!) and that your call will be answered in the order in which it was placed! So now you have no idea if you are number 3 or 33! Not an improvement in my view!

Take care everybody. We're not out of the woods yet!

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 26 Jul 2022 12:50

Hi Chris, How you doing. Have noticed how much you have intergrated into the MDS HQ tasks they need help with. I am particularly gratefull you fly the flag so high for us CMML us. I am still on the right side of being good my lung issue hasn't proceeded, into any sinister yet, but I have been labeled 25% disabled due to shortage of breath, just means I am a little slower than I was. Cmml wise I have remained the same apart from a few fluctuations but none of which shows concern by the doctors. I have an account on facebook which is restricted or something like that but I have been following CMML groups on there. A new one has been launched called CMML Family Friends specifically for UK residents. How are you doing? any reoccurence of those awful mouth ulcers. I am finally on top of my allotment and just reaping rewads. All my carrots have been wiped out by motley virus, other than that things are good. Off to see the the Immunologist doctor thursday for the chilblain lupus he diagnosed about 18 months ago, appointment came out the blue. As it can be associated with CMML I had better go.

Here's one for you, Do you think ones diet can have an effect on CMML patients outcomes.

When's next CMML seminar is it in the pipeline.

Take care Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 26 Jul 2022 20:48

Hi Graham
Great to hear from you and to hear that your lung issue is stable.Sorry that you’re struggling with breathing though. Hope the allotment is still doable? I saw that you’d registered for a couple of meetings but didn’t make it so I was sorry not to see you!
When I hadn’t received the notification re the eligibility for Covid treatments, I submitted my personal details to NHS Digital. Turned out there was a data omission for CMML patients generally and after the error was found, I shortly got my notification email, as did other CMML patients I knew of!! I honestly wonder what would have happened had I not persisted!! We should have had that notification in December and it finally came at the end of May after months of emails flying back and forth between Blood Cancer charities and NHS!! Thanks for your kind remarks. I’m more than happy to fly the flag for CMML. We’re an elite and bijou bunch!! :)

I took your lead and suggested to my Prof that I only need to see him every 6 months and only then if my blood counts look different! Given the state of the NHS, the clinicians and administrators should be looking closely at how frequently people need to be seen to free up clinical capacity for newly-diagnosed people!

I’m still not prepared to go on to Facebook! I’d never be off my phone!! But the CMML group sounds a nice idea. Don’t forget to send any Facebook posters our way to join MDS UK!!

Mouth ulcers still ongoing. After 14 years, I’m getting used to nearly always having one or two on the go!! And still have IBS which has meant a change of diet as gluten is definitely a culprit! No bread, cakes, pizza, pasta or pastries. 😢 The gluten free bread products are pretty foul in my opinion and I so miss my almond croissants!!

Hope your chilblain lupus appointment goes ok. Like gold dust so make the most of it! We’re having a bad year here on the allotment. Had no rain for weeks and even the courgette yield is poor which is a first!! French beans covered in blackfly but have had an amazing yield of soft fruits - goosegogs, jostaberries,redcurrants, blueberries, loganberries, strawberries and now the figs have started with the Victoria plums not far behind. Plenty of fruit in the freezer for our breakfasts!! You win some, you lose some!!

I was on another post (with Kevin from South coast see Hello section) talking about diet. He has also been on watch and wait for a long time and has been a vegetarian for 50 years, as have I for 40 years -though with a bit of fish thrown in over past 10!! I’d love to think that it has helped but no idea to be honest!! I really think it would be a good topic for research but there would be no money in it as no drugs involved so pharma companies wouldn’t be interested so who else would do it?!

I’ll see if I can interest anybody in a CMML meeting! Not sure if we have any data on how many CMML patients are in our group? If anybody with CMML is reading this, just post “Me too” to show your interest!!
Best wishes to all

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 10 Sep 2022 15:18

Hi Chris Bronwen couldn't resist doing a post after seeing MDS Facebook page and reading this,
I just wanted to say how good the 'stem cell transplant' zoom meeting was today. Excellent facilitation by Chris Dugmore and the medical staff from Kings were really good too, explaining things very easily and clearly. This was a much needed topic and personally I think it should be a topic that is covered on a regular basis as there is definitely an audience for it.

Well done Chris with you by the helm we are in good hands.
Hope you are well know you will be busy as always. I am just plodding along managed to book my 5th Covid Jab for next Monday did it on Gov website no issues I even had a choice of about 5 locations to have it done.
Chilblain isse is now sorted they have medication if I want it which I won't managed all these years without.

I got to see the doctor about a tremor I have with my shaky hands, good examination done and diagnosed with essential tremor, why its essential I don't know but its now added to my incurable watch and wait portfolio.

Allotment has done well this year no crop failures except carrots potatoes could have been better.

Keeeep up the good work Cris people do appreciate it.

Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
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