I feel a fraud having no symptoms of CMML

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chris
Posts: 628
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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. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
PO2936
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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 PO2936 » 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
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

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. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
PO2936
Posts: 21
Joined: 22 Oct 2019 11:14
Contact:

Re: I feel a fraud having no symptoms of CMML

Post by PO2936 » 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
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

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. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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