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 » 10 Oct 2020 15:24

Hi Graham

Hope you get a response. Maybe we need to become more militant in the CMML camp?!😂
Take care

Chris
X
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 » 11 Nov 2020 13:27

Hi Chris, Thought better keep you up to speed where I have been. Blood wise who renamed themselves Blood Cancer UK, our voice on the All Parliamentary Group on Blood Cancer , should rename themselves again to Selective Blood Cancers UK. Having picked up a few comments on their Facebook page, I thought I should renew my vows on their website, having updated my profile, I thought to check up any updates they might have on CMML. I was surprised to find out that CMML was not listed on there Blood Cancer we support list. Scratching my head I put CMML into their search engine to be advised no results. Being a contributor to their lottery I felt it prudent to send an email pointing out the fact that CMML is not visible on their website.
They confirmed by email that they longer associate with CMML and referred me to Leukaemia Care, copy below of their responce. I am no longer subscribing to Selective Blood Cancers Lottery, wonder if they breach the trade description act.
I will update you as I progress on my quest.

On a lighter note how are you well I hope ?, wonder what's happened to Bronwen, it seems to be getting lonely having CMML in the UK . Off to local hospital tomorrow for a blood test, then telephone consultation next Thursday with the Leeds clinic.
Been very lazy these last few days using the damp foggy days as an excuse not to do anything outside. Did the zoom meeting for the midlands and the north that was interesting amazing how many people are not aware of Centres for Excellence and those that are are reluctant to make contact fearing to upset their resident Haematologist. I think in this country we treat criminals better than we do people diagnosed with cancer. When criminals are arrested they are told their rights , given access to the rule book, given a free solicitor . When we get diagnosed we are not told our rights or given a rule book or advised of alternative places of treatment.
Still a number on this chat line whatever I did last time hasn't worked. I wish I knew more about computers then I would spend less time on this one.

Take care Graham





.

Patient Services (Blood Cancer UK) <support@bloodcancer.org.uk>
Tue 10/11/2020 15:25
Hi Graham,



Thanks for your email.



I'm sorry you can't find any information on our website. Unfortunately, we no longer produce a fact sheet or web page on CMML in order to ensure our information is accurate and always up-to-date, the volume of what we publish must be manageable for us to maintain. We have chosen to discontinue this fact sheet because others already cover it and to avoid duplication of resource. Please see the information on CMML from the organisation 'Leukaemia Care' - CMML Info-sheet



If you have any questions around your individual situation and clinical circumstances, we'd really encourage you to speak to a member of your healthcare team such as your clinical nurse specialist/key worker or consultant. Do you feel that you have good communication with your treatment team? If you need any support around this I'd be happy to share some resources with you which might be of some help.




Although we no longer produce information on CMML specifically, you may still find our pages on Living well with blood cancer helpful - https://bloodcancer.org.uk/support-for-you/living-well/

Also Graham, if you think you might find it helpful, we have an online forum for anyone affected by blood cancer – Blood Cancer UK forum. Here is one of the conversations on CMML, just in case you'd like to take a look or get involved - https://forum.bloodcancer.org.uk/t/hi-i ... iends/2205

Or you can choose to start your own topic if you'd prefer.

If there's anything we can do to support you or anything you want to talk through Graham, please do feel free to let us know. Our support line number is 0808 2080 888 but do feel free to email us if you'd prefer. Alternatively if you'd like someone to give you a call, I'd gladly arrange this for you if you let me know a convenient time. We would be happy to help in any way that we can.

Kind regards,
Alice

Alice Randall
Support Services Officer
Blood Cancer UK
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 » 11 Nov 2020 23:15

Hi Graham

That was a disappointing response from Blood Cancer UK. I honestly don’t understand why they have decided not to include information on CMML, given that they seem to be trying to be the go-to charity for supporting ALL blood cancers!!
Recently, CMML was taken away from categorisation as a sub-type of MDS and put in its own category of MDS/MPN crossover diseases. Hence it is no longer mentioned in the booklet on MDS co-produced by Blood Cancer UK, MDS UK patient support group and Leukaemia Care. There is an excellent booklet on the Leukaemia Care website however. Have you found that?

In that booklet, a prognostic tool for CMML was mentioned. If you are interested, here’s the link to it.

https://qxmd.com/calculate/calculator_609/cmml-cpss-mol

I’m ok thanks. Nearly finished the pre-winter tidy up on the plot but it’s been quite rainy. Had a gloriously warm day here last Saturday though and we got lots done.

Hope your appointment next week goes ok.

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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Joined: 22 Oct 2019 11:14
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 22 Nov 2020 15:05

Hi Chris and any others inflicted with CMML,

Had a consultation with Professor Bowen on the phone Thursday. He wasn't too concerned about the blood results as only the platelets and monocytes were up, the remaining elements were within range. I did advise him I got twinges in my left side occasionally, again he wasn't overly concerned as he thought it could be a variety of other things, as well as just my spleen. I also mentioned that for 9 or 10 years now I get a swelling in my right foot and its painful like chilblains, always in the later months of the year, and it clears up if I go to a warmer climate.Also the doctors are baffled despite seeing specialists, X Ray and scans. He was interested in this as there is research going on in relation to skin and CMML, he didn't say more than that, but went onto to about getting a special blood sample taken and examined while its still warm, looking for some protein. I told him I may have had it done a year or two ago, as I went to Asda to have a sample taken and they said it had to be done at the hospital . He said he would contact York lab and ask. As I have little confidence in York I have messaged my doctors asking them for the results of this type of blood test. If I knew what to look for I could check my notes. I wonder if the same response would have occurred with the run of the mill Haematologist compared to a specialist in CMML.
Chris you have had lots of problems similar to this over the years , does this test ring a bell with you.
So all in all things seem good but as always time will tell.
Missed the meeting on Friday wife had a dental appointment and as they are like gold dust had to miss it, did you partake .
Allotment doing well, garlic shooting up and spinach doing really well. For the last two years I have tried this no dig idea but things seemed to turn out poor so have gone back to Autumn/Winter digging I need the excise as well. Have also sown some sweet peas, which I have to mouse proof having lost seed last year.
How you keeping? well I hope, will you have the Covid vaccine?, I definitely will,
and its good news its not a live vaccine.

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 » 22 Nov 2020 20:31

Hi Graham

Glad you had another good consultation with Prof Bowen. Not had any experience like your foot problem nor heard about the tests you mentioned. Have chilblains been completely ruled out because it certainly sounds like what my daughter suffers at the first hint of colder weather!! Poor circulation runs in the family on my husband’s side! I wondered whether a chiropodist/podiatrist might be worth a visit when you have a flare-up as they really are the experts in feet!!

Sorry you missed the Zoom cafe meeting. There were 35 people on the call and it was very informal and enjoyable. Another planned nearer Christmas with various suggestions for our entertainment!

Yes nice to see the garlic and broad beans coming up. We’re picking cavolo Nero and Siberian kale so feel I’m getting some good iron and Vitamin K!!

The vaccine and the antibody treatments look interesting, the latter being an option for people who are immunocompromised and cannot have the vaccine or for whom it wouldn’t work very well. We certainly couldn’t have a live vaccine but I shall be looking to see how they can promise safety when there have been no immunocompromised people included in the safety trials! Interesting times as they say!

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

Post by BCEX14 » 17 Dec 2020 21:58

Hi Chris and Graham
I am SO SO sorry, I've just logged onto the forum for the first time in months and seen your posts! You must have both wondered where on earth I've been!
It was lovely to see you both on the Zoom meeting and put faces to names! Couldn't get my hubby to participate as he's naturally quite reserved, but he's happy for me to go on on his behalf and feed back any interesting info! From a personal perspective, I find it very helpful and supportive as I'm still very frightened by what we're facing and the implications for our future.
Sorry to hear you've both been experiencing your own health challenges and hope you're feeling a little better now? The mouth ulcers sound horrendous, even having just one at a time is agony but 12??!!
Why do you think you keep getting them, Chris? Is it a common feature of CMML?
Graham, I was shocked to read about Bloodwise no longer recognising CMML. Totally ridiculous. The more publicity about the condition, the more people are going to be familiar with it. And I agree with you about it regularly being thought of as CML, it's the people who go " oh yes I know, my cousin had CML and had treatment and is now in remission"!. Hhmmnn.....
My husband is really well at present. He had his annual bone marrow biopsy done ( excruciatingly painful this time, more so than the other 2 times he's had it done) and the results showed no deterioration at all since last year. Likewise for the genetic blood tests. No anaemia and in fact some of the results had improved, so strangely enough he's been re-classified from CMML 1 to CMML 0!.
The only symptom he really has is slight discomfort sometimes around his spleen area.
So we're hoping he stays this way for a long time yet!
He is working ( as can safely work alone) unless he's told to shield, which has been twice now. But very careful otherwise.
I'm really busy with my night shifts with Marie Curie. I have all the necessary PPE so just have to be extra careful when i get home.
What an awful year! We're just so thankful he doesnt need to attend hospital right now, as a lot of deaths at our local hospital from covid.
What are you both doing for christmas?
Kind regards to you both and i promise to follow the forum more closely from now on!
Bronwen
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 18 Dec 2020 18:02

Hi Bronwen and Graham

Good to hear from you after such a long while! We were getting worried! Quite understand, though, how busy you must have been with your job and all the extra work involved in your job with COVID restrictions.

You'll forgive me but I've seen so many faces on MDS Zoom meetings and I'm not sure if I clocked/ acknowledged it was you - presumably on the CMML session with Dan Wiseman? Was your name displayed as Bronwen on the screen?

Yes, the ulcers are a gift that keeps on giving with CMML. It's because of having low white cells so get more mouth infections after the tiniest bite or scratch by food! Also suffer with gum shrinkage which means I am getting wobbly teeth and had to have a back molar out during lockdown - and I found that quite upsetting. I've always had good teeth and looked after them - no sugary foods etc - and only have had about 4 or 5 fillings in my 70 years so it's so annoying to think that there's nothing wrong with my teeth - just the gums that hold them in!! :x

That is such great news about your husband being down- (up?) graded to CMML-0. Presume the discomfort is caused by the enlarged spleen. Me too. Stabbing pains from time to time and left shoulder pain - though not for a while strangely!? They say that the enlarged spleen compresses the stomach means you feel full sooner? Amazingly, this hasn't happened to me! :D

Yes the old CML/ CMML confusion. :? The GP put that on my last blood test request and I had to check with the receptionist that my medical record didn't say CML! It was because Chronic Myelomonocytic Leukaemia is usually written as one word so they abbreviate it to CML! I'm going to keep working to make sure CMML is included in MDS UK Patient Support Group. There were plans to produce a booklet and post Dan Wiseman's video on our website but with Covid and Sophie having to work from home and attend meeting after meeting on Zoom, this hasn't got done. I shall keep up the pressure at Committee meetings!!

We briefly flirted with the idea of having children and grandchildren for Christmas when it was first announced, but the more we thought about it, looked at the Scottish guidelines which were a lot more cautious, and with the infection rates in Southend going sky high in the past month, we've thought better of it so will stay at home and maybe meet up for outdoor walks and have a mince pies and rum coffees picnic! My Mum is 92 but we are in touch daily by phone/ Face Time and sometimes we pop round for a doorstep chat so she's happy to stay in with my brother who lives with her so she won't be alone.

What will you both be doing?

Best wishes for Christmas and hoping for improvements in 2021.

Chris
xx
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
Posts: 13
Joined: 19 Aug 2019 10:04
Contact:

Re: I feel a fraud having no symptoms of CMML

Post by BCEX14 » 20 Dec 2020 13:00

Hi Chris
Yes we've decided to have a christmas alone this year too. I am working xmas eve and Boxing nights anyway. But will be awful not seeing the grandchildren. We have a 5 year old and a 5 month old and sadly because of this covid thing the 5 month old hardly knows us. The 5 year old really misses not coming to stay with us.
I really hope the vaccine reaches us soon, but I see that the clinically extremely vulnerable are 4th down on the list, which seems crazy. Reading the latest MDS news I see that this group are being advised to follow the precautions up until the end of the pandemic, goodness only knows when that will be!
Hey ho, let's just hope we stay as well as we can be.
Seasons greetings and all best wishes
Bronwen
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 21 Dec 2020 15:07

Hi Chris, Bronwen, Just to let you know I have previously responded and done two posts neither of which have published probably in the ether. Now fed up up wasting my time, either I am stupid or this forum set up is outdated or over complicated, so considering throwing the towel in. Have made my feelings known in message to MDS HQ no response as yet , but they are busy .> Have a merry Christmas and a better new year.
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
BCEX14
Posts: 13
Joined: 19 Aug 2019 10:04
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Re: I feel a fraud having no symptoms of CMML

Post by BCEX14 » 21 Dec 2020 19:05

Hi Graham
Really sorry to hear you've been having problems with the forum. I've noticed that I dont always get a notification when there's a reply, which partly explains my lack of response so far and hence why I havent always bothered logging on, thinking there was nothing new!
Hope you are staying as well as you can be, and please dont throw in the towel, there are so few of us anyway in this boat and we need each other!!
Take care and all good wishes for the season
Bronwen
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