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

Post by chris » 27 Feb 2020 18:06

Hi Graham

You sound really lifted by meeting with other people with MDS. I felt the same after my first meeting. It's so nice not to feel isolated, isn't it? We're lucky to have Sophie as our CEO and more and more local groups are being set up so I'd urge people to attend if they can. It's not for everyone but it certainly helps mentally for some people.

Great to hear from you. Keep well

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 » 15 Mar 2020 09:05

Yesterday, I had a Ultra Sound Scan nothing related to my CMML condition, however as they were looking, they found that my spleen was enlarged which it one of many consequences of CMML. I am sure we all have similar symptoms but with different outcomes, as for me and my spleen, if they hadn't done the scan, I would not have known it was enlarged. So yet again on my journey with CMML, still unsure when it started :?: :?: . I am sure when I visit my GP for the official result they won't be able to tell me anything more than its enlarged so will update after my visit.
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 » 15 Mar 2020 13:46

Hi Graham

So you've now joined the enlarged spleen club too?! Sounds like it wasn't initiated by the haematology team which is surprising as it is quite common in CMML -especially in those with the myeloproliferative type (i.e. High white cell and monocyte count) -rather than people like me with the myelodysplastic type. (Annoyingly!)
I am aware of it, can actually feel it (yuk!) and I do get twinges and left shoulder pain. Its enlargement doesn't seem to have affected my stomach capacity - though I've never really been one for enormous portions!!

As you say, you'll probably get no other info from the GP and there's nothing much that can be done for it unless you also have myelofibrosis - in which case there is a drug called Ruxolitinib which is very effective at shrinking it but I'm not sure what the side effects of the drug might be?

Let us know the outcome.

Keep well

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 » 17 Mar 2020 18:08

Wow, reached another milestone on my journey Sunday evening. Not long after tea or dinner, accompanied by a bottle of cider, I mentioned to the wife my hands were feeling cold, so we lit a fire shortly after that my face felt really hot and was very red. The wife took my temperature and I was 35.5, the next thing I was trembling, shaking, noticeably after about 40 minutes I decided I should go to bed , which I did with the electric blanket on full. After a few minutes the shaking just stopped. A further check revealed temperature had shot up to 37.7 . We put this down to the warmness of the bed. Despite this happening I had a reasonable nights sleep.
Felt okay the next morning and contacted my specialist nurse who spoke to the consultant who said what had happened was inline with having CMML. Also next time I was to call, and should have called the the emergency numbers, for what action was needed..
I am just wondering what's next having looked at what Chris has been through its not going to be pleasant. Anyone else out there with a connection to CMML experienced the same or something very different or not mentioned by Chris. Trouble with being positive is, you don't want to believe when something happens, its connected with CMML.
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 » 17 Mar 2020 21:58

Dear Graham

That sounds a bit scary for you. Glad those odd sensations have passed. Hope you eventually find out what caused it. I've certainly never experienced anything like that but others may have done and hopefully they will post on here.

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 » 18 Mar 2020 10:51

Thank you Chris. I thought this sentence of yours, ( I've certainly never experienced anything like that but others may have done and hopefully they will post on here.) might encourage fellow patients to share their experiences then we won't feel alone on our journey with this burden we have.
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 » 18 Mar 2020 19:51

Hi Graham and Chris
It seems we are a group of 3!
Very sorry to read about your recent experience, Graham, sounds unpleasant but hopefully may just be a one off and totally unconnected with the CMML.
I'm very concerned about the implications of covid 19 for my husband and I. If I've understood correctly, he will be one of the "vulnerable adults" who will be advised to go into "lockdown " in the next few days.
His employer has kindly said that he will be able to work from home, but I'm worried about my own job and bringing anything home, as I work at night in people's homes as a Marie Curie nurse. I couldn't afford to go into lockdown too.
It's all very well suggesting people keep a distance from each other and use separate bathrooms, kitchen, crockery etc but I don't live in a mansion!
What measures are you two taking?
It's great to be able to keep in touch and support each other.
Bronwen
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 18 Mar 2020 23:15

Hi Graham and Bronwen

Bronwen - may I say how wonderful it is that you are a Marie Curie Nurse. I know friends who have been looked after by people like you and it has made such a difference to their end of life care. Thank you. I understand how difficult your situation is -with responsibilities to both the people you care for and your own husband who, as you say, is one of the "vulnerable" ones re Covid 19. It's a bit of a challenge to keep distance in shared areas. Suggestions that sick people use the bathroom AFTER the healthy ones and clean after them seem so impractical. When you're really ill,are you really up to disinfecting taps, toilets, door handles etc!! Plus they are going to be using it more than once a day -that's quite a bit of cleaning!! As you say, almost impossible but you need to work. So many people are in awful situations. I really sympathise.

In our case, we are both retired so we don't have work issues but all our normal social events -choirs, book clubs, crossword groups are cancelled plus some concerts we were taking part in or attending!! We have 4 grandchildren locally and haven't seen them since this started as they have had coughs and colds in the usual way of under 5s. We miss them terribly and the thought of no cuddles and fun and games for 3 months is quite unbearable.
We are trying to keep shopping to a minimum by buying only once a week but courtesy of the allotment we have a freezer full of our own fruit and tomato sauces, plus purple sprouting broccoli and leeks currently on the plot so guess what we shall be eating?!! I know Graham has an allotment too so guess he is also well stocked!! Stephen is doing the shopping to save me being exposed but frankly if he gets it, there's no way I can avoid it. It is making me very anxious. I've only had about 3 serious infections but they were all bacterial (tested sputum!) so I got exactly the correct antibiotic and they worked a treat. What worries me is that this is viral and nothing can treat it.

A lady in our MDS group is having a stem cell transplant later this week. The thought of having one's immune system wiped out pre stem cell infusion in the current CV situation fills me with dread. But you only do this procedure as a last resort so we're keeping everything crossed for her.

If one of us gets CV we can only try our best not to spread it to each other. Steve is just 70 but is fully fit so I'm not so worried about him!!

Hope you can find solutions to this unprecedented situation. I'm trying not to panic, Captain Mainwaring!!

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.
BCEX14
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Re: I feel a fraud having no symptoms of CMML

Post by BCEX14 » 25 Mar 2020 11:48

Hi Chris and Graham,
Just checking in that you're both ok during these worrying times!
Have you both received your letter yet from the NHS to confirm you're in the extremely vulnerable group?
Chris hasn't received his yet, and my employer is asking to see it so that I can be excluded from visiting patients with symptoms. Luckily Chris can do some computer work from home.
All very concerning but I hope you both keep well
Kind regards
Bronwen
chris
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Joined: 01 Dec 2009 21:52
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 25 Mar 2020 14:14

Hi Bronwen and Graham

Yes. Got my letter just this morning but got NHS texts on my phone. Started Monday to tell me I was one of the "vulnerable ones" and then got another 3 on Tuesday with various other bits of information. I suppose they do have to spell it out to some people but as most of the instructions are what I have been effectively implementing for the past 12 years, it seems a bit like telling your CMML Grandma how to suck eggs!!! :D

Only difference is I'm now under house arrest!!

I'm not sure how this was done from an admin point of view but if you have s bone marrow cancer you should definitely be in this group. If Chris hadn't got a letter by 29th, I think you are advised to contact your GP to ask that you are included in all mailouts. As you are shielding Chris,Bronwen, you should surely be exempted from working in close contact with others who may be incubating the virus?

There is information here on the MDS Uk Patient Support website plus a Newsletter coming out in a few weeks with special insert letters.

We're doing ok. Stephen is doing s once-weekly shop at Waitrose Oldies Happy Hour on Sunday at 11 - much more up our street than the 7am ones!! We have freezers full of garden produce from last year and I'm a thrifty cook who doesn't waste any ingredients so we'll be fine!! Have children locally too if we need help.

Worst thing is not seeing the grandchildren for 3 months. It makes my heart ache not to hold them. They are blissfully unaware and happy though so that's lovely to see. Plus donecreslly funny and uplifting things doing the rounds on social media etc. Thank goodness for some brilliant and funny people!!

Take care

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.
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