I feel a fraud having no symptoms of CMML

[Graham]

Hi All, Wanted to say that I thought the web seminar today was excellent great to put faces to names (that's you Chris). Great advice and experiences shared, certainly made it worthwhile, learnt a lot, same as last meeting I went to. Hope everybody is coping with the virus situation I felt more isolated from when I was informed of my CMML to my first patients meeting than I do now. Getting plenty of deliveries and have harvested alot of asparagus from my allotment.
I do hope Sophie can arrange more of the virtual meetings.
At present I have picked up a n infection like a blister on my left hand which started to track down to my wrist and up my arm. After a telephone call to doctor she insisted I collected antibiotics she would prescribe straightaway and also arranged an appointment to see a doctor at my local practice the same day, which I did who advised on the type of dressing and what to do if it got worse. At moment it seems to be holding its own.
This morning I thought I should advise my specialist nurse of my circumstances. Whilst on the phone I thought I would bite the bullet, about whats been bugging me for months and that is I wanted a transfer from York to Professor Bowens clinic at Leeds. That being said I shall have to wait the outcome.
Just taken a phone call right now and my York Consultant Haematologist is going to refer me to Professor Bowen at Leeds, yippee. The final straw for my decision was when a York Haematologist Consultant letter to my GP, referring to my enlarged spleen, stated I had CML, which in turn, probably, led the doctors yesterday in their reports, referring to my condition as CML.
Well hope to see more of you all on screen soon.

Graham.

[chris]

Hi Graham
Good to see you too. I recognised you from the Newsletter photo!
These online Zoom meetings have been in the offing since lockdown started but they take a great deal of planning and organisation - not least getting over some of the tech issues! Glad you found it helpful and hope others did too. I'm sure there will be more for several months to come.
Yes. I've also been wrongly classified as having CML so many times. I have to point out the extra M and the definition. CML is more widely known but a different kettle of fish altogether!! From generalist doctors the error is more forgiveable but not from a haematologist!!
Sorry to hear about your hand/arm infection. Is it cellulitis? Hope the antibiotics kick in soon and it improves. Hope you wear gloves on your allotment? Have to be so careful about cuts and grazes and dirt getting into wounds.
Well done on getting your referral to Centre of Excellence. David Bowen is very experienced and knowledgeable so I hope you find it useful. Dan Wiseman at Manchester is a CMML specialist but that's a lot further away.

We're also enjoying our own asparagus. We dine like royalty don't we. Would never eat this much if we had to buy it!! Had months of purple sprouting and leeks and today I just cut into our last butternut squash. Lots of soft fruit on the way. Gooseberries, cherries, redcurrants, blackcurrant and jostaberries ( gooseberry/blackcurrant cross).Had some strawbs and raspberries will start soon. We're still eating last year's crop from freezer!
Thank goodness for allotments eh? Keeps my head on an even keel through this lockdown!
Now on both Sainsbury's and Waitrose online shopping priority so we're fine and Steve doesn't have to go out to shops at all.

Anybody on this forum who didn't go to the online Zoom meeting, do keep a lookout for the next one.
Best wishes
Chris

[chris]

Hi Graham and Bronwen and anybody else who was on the Zoom webinar today with Dr Dan Wiseman and Hasse Bossenbroek. If you missed it, the good news is that we are hoping to post it on the website so that will be a great resource for CMML patients.

Did you find the session helpful? I do hope so. It's so great to have a clinician (and an amazing 3rd year PhD student!) who is so focused and knowledgeable on our rare disease.

I was very confused as there was somebody called Chris on the call and I thought it might be your husband, Bronwen, so I spent a lot of the meeting pondering that connection - only to find I was completely wrong!!

I hope you are both well and that you have resolved your work situation, Bronwen? I hope the relaxation of shielding will not affect you? I'm certainly not going to make many changes - other than outdoor family meetings whilst the weather holds! I do worry about the winter though. Lots of outdoor walks and park meetings I guess. Wrap up well!

How's your allotment going, Graham? We are watering and picking like crazy! Courgettes have gone nuts as have 3 types of French bean, cucumbers, blackberries, shallots, spinach, chard, beetroots and salad leaves! Have finished the gooseberries,jostaberries and redcurrants and all the excess is safely in the freezer now. And the fig tree is about to start- we had one ripe one yesterday and it was delicious! It's been keeping me sane and busy and out in the fresh air so hurrah for that!

Take care, all. Stay safe.

Chris

[Graham]

Hi everybody its good to know that despite CMML being rare there are a few people who can share their experiences, not only of their present situation, but also their past. Reading these conversations whilst all is not great they do give encouragement to be positive about the future. I actually feel a fraud, as I actually have no symptoms at present , despite being given the diagnosed with CMML in August this year. I suspect however I may have had it a few years looking at my blood results dating back to 1997. Following my diagnosis I did a data subject access request to my local hospital for the haematology records on me. I photographed them all and then put the results on a spreadsheet (First one I have ever done) and it was quite interesting as I have had irregular blood counts since 1997. In the early years they were picked up on and the haematologist was not concerned as I had no symptoms as a result life carried on as normal. From my interpretation of the old results the turning point was 2015 when the Monocyte count doubled, this was not picked until 2019 when investigations started in earnest resulting in the CMML diagnosis. Despite these abnormal results not being acted on I do not think any harm has come to me as a result as I am just watch and wait at present. Thanks to MDS patient support group website and forums like this ,I have an appointment to see Professor Bowen tomorrow who will hopefully throw some light on my spreadsheet results and a likely future with my CMML.

Graham


Following on from my last post, I visited Leeds, and was seen by Professor Bowen. I certainly felt more enlightened about my predicament and my future prognosis despite the caveats that individuals can be very different and the uncertainty of the figures.
I certainly left with a more peace of mind, than when I arrived.Also I now don't feel so much of being a fraud any more, as his thoughts, on viewing my spreadsheet of blood results, that I might have contracted CMML at sometime between 2011 and 15, but we will never know for certain.
I would certainly recommend getting an additional opinion. I now look forward to the 26th of February to the Yorkshire MDS group meeting in Leeds to further my knowledge of what the future may hold.

Graham

First of all I am useless at doing this Forum thing I find it confusing and not easy to use. I have been trying to change my username from PO2936 to Graham without success anybody out there able to help please. I have had a number all my working life and would now like just to have a name.

[chris]

Hi Graham. Sorry you're having problems. I think if you post in the topic "Problems using the forum" , and ask to change your username, the forum admin will pick up your message and make the change. If that doesn't work, let me know and I'll find out for you.

Hope all well with you otherwise?

Best wishes

Chris

[Graham]

Hi Chris, , Thank you for the advise which I have taken and I think I have done it, so fingers crossed. How are you? holding your own I hope. I am just ticking along as normal. I have finally been officially transferred to the Centre of excellence at Leeds , but not without drama in the admin of it. I saw Professor Bowen last month face to face he was okay with the blood results, not too much change from the previous ones, decided I should be on three months between blood tests and consultation . It would seem that Leeds and York Hospital and my doctors computers are all talking to each other now, making life simpler for everybody, even me. I am able to have my blood tests done in York and results sent straight to Leeds. He did advise me if I had rigors again extending beyond an hour I needed to get to A&E straight away. Once again he recharged my positivity. Meaning I am planning what's going to be grown where on the allotment next year . Recently sowed spinach for the winter, and elephant garlic and garlic for next spring.
Bronwen how's things with yourselves.

[chris]

Hi Graham

Glad you're now having consultations at Leeds with Prof Bowen and you're finding them helpful. Yes, getting different NHS systems to "speak" to each other does seem to be a bit of a problem as it doesn't seem very "joined up" to me. When I had blood tests done locally, I had to screenprint the results from my GP portal and send to Professor via their patient website!! The website refused to attach the screenprints as they were in the "wrong format" so I changed them to a jpg format and sent but when I looked at them in the attachment, they would have been too small for him to read so I ended up e-mailing them to the clinical nurse specialist!! What a kerfuffle! I think the GP practice was supposed to do that through the NHS system but I never found out of they did and didn't want to risk having a futile consultation without the results! Let's hope it improves with time!

Yes, wise words from Prof Bowen - if you get the rigors again, don't delay!

It's good you feel so positive about planning next year's allotment crops. I had a wonderful Great Aunt who saved her runner bean seeds every year - even right to the end when she was 95 and had early dementia. I always get excited to do my seed orders in January and the coming of Spring always gives me a great lift. How wonderful it has been to be over there this year when everything seemed so depressing. Yes, we're gradually tidying up the allotment too, getting ready to put it to bed for the winter! Still got plenty of courgettes (it's the gift that keeps on giving!); butternut squashes have had a second surge after we'd harvested 17 already! Some beets still to harvest. Long banana shallots drying off. Dug up all main crop potatoes last week and had a good haul of decent size. I've bought my seed garlic but waiting for a bit of rain to soften the concrete (clay soil!) ground before I plant them. Ditto the over-wintered dwarf broad beans. A couple of years ago, I planted some elephant garlic, pukka seeds bought back from IOW by my son, and was a bit disappointed! Maybe your colder temperatures and more rainfall up in Yorkshire do the trick better with garlic?

Yes, how are you, Bronwen? And others who have posted and we haven't heard from for a while? We're hoping to post the video of the CMML information session led by Dr Dan Wiseman on the website so keep a look out for that.

Best wishes

Chris

[Graham]

HI Chris, Good to hear about the allotment. Instead of putting mine to bed I am planting. Just sown two rows of Pak Choi and one row of chinese cabbage also 4 more rows of garlic the other garlic is up and growing.
Reason I am on is having just read the latest MDS news letter about the EUMDS Registry and whilst it great to hear about items of treatment and studies it all relates to MDS, but what actually relates to us CMML patients in these findings, as I am unable to locate CMML being referred too. I do recall that the American doctor who actually admitted (I think) little or none of the historical research into MDS actually relates to CMML, or does it have a relationship to CMML but not specifically. It is a little confusing for me. Would a blood transfusion for someone with CMML have a different response to that of someone with MDS, am I just being pedantic. You have more experience than I what's your take on it please. Graham

[chris]

Hi Graham
Glad you've got some winter crops in. I put in 3 rows of garlic and 2 rows of dwarf broad beans on Wednesday whilst the sun was shining. Since when and prior to that, lots of rain!

I share your concerns -especially as CMML is now no longer classified as a sub-type of MDS.However, I just checked and the intro page to the EUMDS registry says "Newly diagnosed patients with Acute Myeloid Leukaemia (AML) with 20-30 percent marrow blasts (former RAEB-t), and Chronic Myelomonocytic Leukaemia (CMML) are also eligible for participation in this Registry." So I guess that when they have something specific to report about CMML, they will do so. Some of the findings about MDS may well apply to CMML patients with the MDS-type of CMML. It would be good to think they would publish CMML specific data too. They do have a contact link on their website so it might be worth contacting them if you have specific queries? We're a rare group in another already rare group of diseases so it's hard not to feel a bit left out sometimes!
Hope you're keeping well? I'm currently very down as I have 7 mouth ulcers, the oldest one 24 days old. They're killing me and making it so hard to eat without crying with the pain!Tried salt water rinses, a steroid paste I get from Australia, non detergent toothpastes but nothing seems to work!I wish there was an effective treatment as it's so miserable! It's an ongoing problem ever since I had CMML
Ah well. Hopefully they'll go soon.

Best wishes

Chris

[Graham]

Hi Chris, Thank you for your response. Really sorry to hear about your ulcers just having one is bad enough let alone seven I do hope you get some relief soon. I have taken onboard your suggestion and sent following to EUMDS registry,

Hi, I was wondering what the latest information you may have on research into CMML. We have lots information on MDS which is great but little or non on specially, CMML. Could you advise us suffers on an updates ,or any links ,that may have updated research that’s taking place , please. Graham Cheyne

Will post any answers I get not that I expect any.

Graham