I feel a fraud having no symptoms of CMML

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PO2936
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I feel a fraud having no symptoms of CMML

Post by PO2936 » 11 Dec 2019 10:36

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
Last edited by PO2936 on 23 Jan 2020 10:16, edited 1 time in total.
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 » 16 Jan 2020 11:49

Hi Graham
Your post really resonated with us, as my 57 year old husband was also diagnosed with CMML in August 2019 but currently feels completely normal (apart from feeling quite tired at times, but then this may be just an ageing thing). We were totally shell shocked when given the initial diagnosis, and not at all reassured by the fact that our haematologist admitted that being so rare they were not too familiar with it. This was apparent by their inability to give us any definitive information/answers to our questions, other than they predicted he has a probable diagnosis of up to 93 months! We came away feeling incredibly gloomy and immediately began researching the condition on line. A lot of interesting and informative information although some of it quite terrifying.
I joined the MDS forum and saw that people were strongly recommending getting referred to a Centre of Excellence. Our closest is at Bournemouth, so we asked to be referred to Dr Sally Killick and were lucky enough to be seen by her within the week! She was able to answer our questions and allay a lot of our fears, and she also ran her own bone marrow tests.
Although the diagnosis is what it is (CMML TYPE 1) we at least feel reassured that now we are in safe and competent hands. We are seeing Dr Killick and our local haematologist every 3 months alternately, having a "shared care" approach.
My husband is on "watch and wait" as bloods all stable at present, but it all feels so surreal and as you say, he feels a fraud too, particularly when we have told friends and family his diagnosis but he looks no different!
I hope you remain feeling well as long as possible and would be interested to learn of your progress/experiences along the way.
We feel it's important to keep positive and keep doing all the usual things you do whilst you can, and don't put anything off. But it is hard sometimes.
All the best
Bronwen
PO2936
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Re: I feel a fraud having no symptoms of CMML

Post by PO2936 » 16 Jan 2020 16:50

Hi Bronwen, It was great to read your post, and to know that I am not alone in my thoughts . At my visit to Professor Bowen, I queried the length of time between blood tests which is 6 months, on my watch and wait, and he thought 3 months would be more appropriate. I haven't heard anything yet from my Haematologist about this additional test, so it looks like I will have to chase this up myself. The other good news I got was that my Haematologist has worked alongside Professor Bowen and he spoke well of her. Whilst I will remain under my York Haematologist, my next appointment being on the 24th of April, but I am now on file at the Centre of Excellence for any future references that have to be made there.
Please keep in touch with this forum, and, we can compare our progress in the coming years alongside anybody else who may join in.

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 » 20 Jan 2020 18:29

Dear Graham and Bronwen

You probably didn't get to trawl back very far in this folder but I'm one of the earliest (and probably the most prolific!) poster on this Forum! I'm saying this - not to show off -but to give you and anybody else reading this a wee bit of reassurance from my own CMML experience. Like you, I feel so thankful (and also a bit of a fraud!) as I haven't really felt unwell because of my illness and have now been on active monitoring for over 11.5 years! This was not what I expected when I was first diagnosed in 2008 - mainly due to getting a leaflet from Leukemia and Lymphoma Care which, at the time, gave a median survival of 12-18 months for CMML! Worse still, I'd already been diagnosed for over 12 months by the time I found the leaflet and I guessed that my blood counts had been a bit odd for at least 5 years before that. (In retrospect I think that recurring bouts of painful cellulitis on my leg and foot were due to low white cell counts!!). I was very anxious and depressed for quite a while after reading this as I didn't think I'd make 60. Yet here I am, still here and hopefully going to achieve 70 this year!

Although I am fine now, my MDS kicked off in a very serious way in 2008, and I honestly thought I was on my way out! I have CMML-1, the MDS-type, having low white cells and platelets, thankfully my haemoglobin is relatively OK so no transfusions. I'm only just in the criteria for CMML as my monocyte count is usually only a smidgen over 1 (that being the criteria for CMML diagnosis). Moreover, on some blood analysers, my monocyte count is normal (but that's another whole saga!!).

Initially, with my low white cell count (neutrophils 0.4 - 0.6), I was quite fearful about catching lots of infections and I still take active precautions about avoiding anybody with a known infection less than a week old. I wear gloves on public transport and wash or gel my hands quite frequently. Since being diagnosed, we have been lucky enough to have 4 grandchildren - aged now from 2 months to 4.5 years - so there are inevitably lots of colds, coughs and tummy bugs around when they start school, pre-school and Nursery. Their parents are very good at spotting when their children are sickening for something and we stay quarantined until the infectious period is over. It means that neither I nor my husband can help out when there's sickness about but we are still able to help out with babysitting and DIY most of the time!! I think my approach has paid off as, in the past 11.5 years, I have only needed to consult a GP and get antibiotic treatment 3 times (once in 2014 and twice -for the same pesky bacteria (!) - in 2019).

I am still physically active- walking briskly and climbing hills is still do-able, plus singing in large mixed choirs which needs quite a bit of puff, plus we have a full-sized allotment to manage which keeps us active and engaged - especially in the growing season. We've got 3 freezers full of home-grown organic produce which is a real treat!

So I hope this is encouraging for you. Obviously, there are different types of CMML and some are more serious than others but I was told early on that mine might be an indolent type and that has turned out to be the case. If you're going to have a cancer, have a lazy one! Last year though, my Prof ran a Next generation Sequencing test on my blood. This is a test which shows up mutations at a deeper level than my bone marrow biopsies in the past. This revealed a mutation which we had not known about previously. Because the test was not available before, nobody has any idea as to whether this mutation has been there all along or if it has appeared at some point in the past A little bit worrying but it is what it is and we shall just have to keep an eye on it to see if the mutation frequency is increasing.

Keep well Graham and Bronwen's husband. If you want to ask anything else, fire away!! It was years before I got to meet anybody with my type of MDS and my type of CMML and that felt very isolating and depressing. Don't know if CMML is getting more common or the medics are getting better at diagnosing or people are more comfortable with going onto these public forums. Anyways, one thing I've learned and which definitely helped me was "it's good to talk!".

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
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Re: I feel a fraud having no symptoms of CMML

Post by PO2936 » 21 Jan 2020 12:15

Hi Chris, Thank you for putting up the post it gives optimism and hope for us all, with this issue, and reinforces why we should try to be adapting a positive attitude towards life and not being pessimistic. As you point out there are differences within the CMML group. In my case my monocytes are over the guide of 0.2 to 1.2 also my platelets are well over the guidelines, however the rest of my blood count seems normal.
I notice on your introduction you have enlarged spleen does this cause you problems at all, is it still enlarged if so what effects does it have.
I too have an allotment and always try to get time in it, particularly in summer, I also keep bees. Additionally I have a dog so every morning I am out walking for up to 2 hrs, I think lots of exercise helps mentally and physically, it does for me.
Chris please keep us fed with information somewhere a snippet from it will resonate with somebody about something, for me it was your cellulitis.For a few years now I get a swollen and inflamed right foot as the cold weather starts have had all sorts of tests, scans, x ray diagnosis as gout (not proved to be), but never ever any mention of cellulitis now you've got me thinking.
So thank you for your insight into your experiences I look forward to reading more from you as you said its good to talk. I hope these types of conversation will stimulate more people to join in, so we can learn from each other.

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 » 21 Jan 2020 20:19

Hi Graham

I've just copied the section below from a post I made under another topic years ago at the beginning of my CMML Experience before the CMML folder was available! I "bumped" (refreshed) the topic yesterday and Bronwen has picked it up from the original folder and replied there but I wanted to keep this thread going in the CMML specific chat as it's more relevant here. I'll reply to your post in my next one!

"Just wanted to write about my odd collection of symptoms which I had in 2008, a year before I was diagnosed with MDS. It has always bugged me that a range of well-qualified medical experts had never heard of these symptoms in relation to MDS so I had always been told that the symptoms were probably due to "something else". Not having a diagnosis for a very severe illness which eventually disappeared without treatment was very hard to live with - especially the overwhelming fear that something "sinister" had been missed or that it would re-surface. Well, after only 2 years and 8 months of researching, I have finally come up with an answer which absolutely fits my illness and I am so relieved. I wanted to share it on this website because MDS is rare, my particular type of MDS is also rare, the symptoms I had are quite rare and I just wanted anybody else who had had the same symptoms know the answer to save them fretting away as I have!

My symptoms were as follows:

*Pain in left shoulder
*Overwhelming fatigue
*Swollen abdomen and oedema (swelling) of thighs and ankles, following weight gain of 6lbs over 2 days (Jan 2020: I now know this was something called Ascites and should have been a "red light signal" for the GP I saw to take urgent action but he did not!)
*Night sweats
*Fluid on both lungs (clear and straw-coloured) called a pleural effusion - both were almost full of fluid
*Breathlessness
*Enlarged liver and spleen
*Raised C reactive protein in blood
*Raised white cell and monocyte counts
*Constant pain in back, shoulders, limbs
*Insomnia
*Nausea and loss of appetite
*Weight loss - nearly 1 stone

I have now turned up a paper (Source doi: 10.4065/81.4.553 Mayo Clinic Proceedings April 2006 vol. 81 no. 4 553-563) which lists all of the above as initial symptoms of CMML (my type of MDS). In other words, this was the MDS "kicking off" not symptoms of another illness which preceded the discovery of the MDS.

I would be really interested to know if anybody else has had similar symptoms before their MDS was diagnosed as they are not classic symptoms of MDS which is usually related to anaemia, infection through low white cells and bruising/ bleeding re low platelets"

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

Post by chris » 21 Jan 2020 21:07

Hi again Graham

Lovely to get your reply and hope that it helps a bit to share our concerns. Yes, I am a spreadsheet nerd too and have kept records since my diagnosis so that I can see any changes occurring. I think this is helpful as I'd guess that consultants mainly just look at the most recent counts - not a much larger picture.

Glad you are also an allotmenteer. It certainly does my head a power of good to get absorbed in the weeding and digging and we certainly reap the benefits. Envy you your bees. What a lovely thing to do and you're helping to save the planet by looking after them!! 2 hours walking too? That must really set you up for the day.

My spleen has been enlarged ever since my CMML kicked off and it has gradually increased in size in the years since. I haven't had it ultrasounded for a number of years - mainly because my local hospital sonographer told me that it was so enlarged that they couldn't fit it all on the screen so they could only estimate how large it was and therefore there was no point doing it!!! Not sure how true this is! At the last measurement several years ago I think it was 23 cm and it should be about 11. Occasionally I get left shoulder pain. I think this common with enlarged spleens. I also get stabbing pains in it from time to time. They say the enlargement compresses the stomach and so diminishes the appetite. This hasn't happened to me but I know some other CMML sufferers who have struggled to eat enough because of this and have lost weight as a consequence. I am a bit anxious about damaging it as it is now well below the normal protection of my ribcage. I worry about falling off my bike and I feel I can't do energetic exercise or any sport involving contact as it feels quite vulnerable. But I think I walk enough and garden enough and am normal weight so not too worried.

I think my cellulitis is as a result of low white cells. You said your monocytes had doubled at one point but I'm not sure what your neutrophils are? I have rarely, if ever, got cellulitis in the winter. Always in the summer when I've got bare legs and feet. What causes it can be the tiniest scratch or insect bite or any superficial skin damage on my lower leg/foot. This sets up a skin infection and a hot, red, excruciatingly painful area which gradually spreads and I can hardly hobble along with it. I probably could have been prescribed any number of courses of antibiotics but I prefer to avoid them and have found that I can make it go away by elevating my foot all day and night using pillows and regular ice packs to cool the area. I had this for about 5 summers before my CMML kicked off and kept thinking I was very unlucky getting spider bites from the garden!! Hope you can find out what yours is and how to manage it Frustrating to have all those tests and still be none the wiser!

I had to laugh regarding being positive! This is so not me! I'm sure it can be helpful but if it's not in your nature it's really hard to change - especially after a lifetime of being gloomy! I must be one of the most pessimistic people I know! We're all different aren't we? I did once read a definition which amused me: - a pessimist is just an optimist with more information!!! Whatever floats your boat and gets you through difficult times.

Anyway, take care

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

Post by chris » 22 Jan 2020 19:56

Here is a reply from Bronwen to my post in the "My experiences" folder. Hope it makes more sense to have it here in the CMML specific folder.


Hi Chris
Thanks so much for your response yesterday, I had read your posts and thought it would be really useful for us to be in touch. Your positive attitude gives us such a lift and it's wonderful to know we're not alone. My husband (also Chris!) isn't really keen on joining forums etc although he listens with interest when I read bits out to him. He tends to deal with things in his own way, which is mainly avoiding the subject. We obviously talk about his illness together but otherwise he's not a man that likes to discuss things with others, not even friends or family. I do worry that he can't open up sometimes. I personally have found the support of my friends invaluable, and I'm already appreciating being able to talk to others in the same boat on this forum.
Anyway, your initial symptoms are really intriguing, and Chris's are as follows;
Having been fit as a fiddle all his life, in 2015 Chris felt generally unwell for many months - aches and pains ( especially in shoulder), repeated sore throats, numerous infections following very minor injuries such as an insect bite and a dog scratch requiring antibiotics, extreme fatigue, frequent loose bowels. Over the course of 12 months he lost nearly a stone and a half in weight. Countless blood tests were done, and it was during one of these that the GP remarked there was "something unusual" about Chris's red blood cells so referred him to local haematologist.
The haematologist arranged or an endoscopy to be performed in 2016, the result of which was totally normal. There was some muttering about the possible need for a bone marrow biopsy, but strangely by this time Chris was feeling better in himself and had managed to regain some weight, so it was agreed that his blood would be simply tested every 3 months.
In Feb 2019 he contracted a virus which we thought at first was flu but after a few days having been completely struck down by this and incapacitated he developed excruciating pain in his left shoulder and left side of abdomen. Numerous hospital visits/admissions followed, with his blood being tested for literally every disease known to man, MRi's and ultrasound scans. It was discovered that his spleen was enlarged, and still they kept saying " your red blood cells aren't right, they're very small and pale".
Back to the haematologist we go, who arranges further endoscopy - once again, nothing abnormal discovered.
By this time Chris has recovered from the virus but the haematologist wanted to perform the bone marrow biopsy.
Roll forwards to August 2019 when CMML was diagnosed, much to our shock.
Currently he feels quite tired and does occasionally get ache in his left shoulder and side but other than that feels ok and still able to work as a railway bridges examiner.
Last blood tests revealed white cells 4.5, neutrophils 1.7, monocytes 1.2. Not really sure what any of that means but they told him his biochemistry is normal.
Specialist at Bournemouth has been very thorough. She explained that Chris's CMML is myodysplasic as he presents with some of the symptoms but not others. Following her own subsequent bone marrow testing she told us at last visit that she was now able to give us a much more accurate prognosis if we wanted to know, but Chris has chosen no. (So I feel a bit in the dark now, not knowing if we should do things sooner rather than later).
We are back to see her on 6th Feb as she has taken further scan of his abdomen to check spleen enlargement.
How are you?
Kind regards
Bronwen
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
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 22 Jan 2020 22:25

Hi Bronwen

Chris's symptoms sound quite typical of CMML and, sadly, also the long drawn-out process in getting a correct diagnosis. Very frustrating but it sounds as though you are in good hands now at Bournemouth with Sally Killick.

I've heard of quite a few MDS patients (mainly men in my experience) who would rather not talk about their diagnosis - even to loved ones. It is difficult for their partners to take on the worry load alone but hopefully a forum like this can help. You're doing a great job by getting information and drip-feeding it to Chris so that he can take what he needs from it. You spoke about him not wanting a prognosis? By this I presume you mean predicted survival time? To be absolutely honest, in my opinion, these prognostic scoring systems, especially the one used for CMML, are relatively recent and not always helpful. They give a median survival time in years (this is just the value in the middle of a group of results) but do not give the range so your survival could be a lot less than the middle one or a lot longer. Given also the length of time it takes to diagnose CMML, how does anybody know when that survival time starts? Moreover, there are so few effective treatments, there is really no benefit in knowing in advance what your prognosis is. It is really good news that Chris's chromosomes are normal and what might be helpful would be to ask what his risk of his CMML progressing to Acute Myeloid Leukaemia is. There are categories from Very low to High Risk. The MDS handbook gives a good summary of the Ines related to MDS. This will give you a view of the seriousness of his CMML but translating this into years I think is more challenging.

I remain pretty well, thank you for asking. Hate the winter and the number of infections circulating as it makes me anxious in case I succumb to a nasty one!! Roll on Spring and Summer and lots of warmth and fresh air!!

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

Post by PO2936 » 27 Feb 2020 14:08

Hi everybody I just want to retract my statement of feeling a fraud, why? Yesterday I attended the Yorkshire MDS group meeting at Leeds. I think there were about 16 of us, the meeting was chaired by Sophie and we had a Specialist Nurse Catherine Langton from St James Hospital was there also. She was able to answer all of the medical ambiguities that arose. We had conversations, discussions and patients stories, resulting in the odd tear , but also laughter. I learnt a lot from listening to some sad stories and some amazing stories of peoples journeys with MDS. I learnt a few things I could look to look out for as time passes. The most important thing I learnt was these wonderful people, in the group, were no different from me, and I was no different from them, they were not frauds, and neither was I. For me mentality it was was a great therapy and served to enhance my positiveness to make the most of my life. We had one lady who is cured of MDS 8 years ago and she still supports the MDS group by attending what an inspiration she was. Graham
Graham Diagnosed August 2019 with CMML, just 70 years fit and active.
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