I feel a fraud having no symptoms of CMML

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

Post by chris » 27 Dec 2020 13:22

Hi Graham and Bronwen
Hope you’ve both had a good Christmas -however you spent it. We were on our own as planned but popped round 2 of our children’s homes locally to deliver presents and watch grandchildren through the window while they opened them!! Strange but at least we saw them. We did a family quiz on Zoom yesterday which was good fun and hoping the weather improves so we can have a walk.

If you click on the little spanner above the reply box you should be able to subscribe and bookmark this topic so you should get an email notification when anybody posts. Sorry you’ve lost a couple of posts Graham. I’ve lost count of how many times that’s happened to me! I’ve learned that you have to stay within the Forum otherwise if you leave it and forget to save the draft , you lose it! Hope you can stick with it, Graham.

Wish you both a good 2021.
Chris
Xx
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
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 23 Jan 2021 11:53

Good Morning All, on a high now, just had the jab yesterday, the Astra Zeneca one. The whole process from advising me, to having it done in less than 1 hour, at a time of my choosing, no queuing, and have a time and date for the next appointment. When I got home and looked at my medical record at my doctors, everything was recorded on it.

Following my quest on EUMDS Registry research project and its funding I have finally got an answer from a lady in Holland as follows.
Dear John and Graham,

That the UK left the EU, does not mean it can and will no longer be part of the EUMDS Registry. The European continent is broader than only the EU. 😊
Funding of main structure of the EUMDS is a combination of (government) grants and pharma funding, so this is not influenced by the EU.
As such, the UK will continue to be part of the EUMDS Registry and receive funding of the EUMDS.

Hope to have informed you sufficiently,
Kind regards,
Corine

Despite lack of co operation from Parliamentarians we have an answer.

Up to now its been a good start to the new year. My next appointment is telephone conversation with Professor Bowen (He had been copied into the received email) mid Feb, at present, no different to life, than last appointment so if new blood results are good, things should continue as normal.

How is the allotment Chris, have sown leeks, onions and celeriac in pots in my conservatory, and just put outside yesterday sweet peas that were 3” high, under a netted cloche.

Whilst I am not a facebook user by any means, but I have an account that I keep private as possible, as I know how. On there is a user group specifically and only for CMML suffers its world wide and mainly from America worth looking at, have conversed with a lady whose husband has CMML and being treated in Leeds, that was interesting. I also follow MDS on facebook, but as we are in a very rare groupd not much about 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 » 27 Jan 2021 22:27

Hi Graham

Great news. Hope no side effects from the vaccine? Out of interest have you been approached for any research into how effective the vaccine is for immunocompromised people? I think this is a big data gap which we need to get more information about.

Well done on finally getting a positive response about EUMDS registry. No thanks to MPs!

Also well done on getting your number changed to your name. Did you get help from the web manager on that in the end?

Not going to the plot much but must go and dig some more keeks and cut some Cavalo Nero kale. And need to order some seeds soon as my normal source is having to close its website to catch up on orders!!

Hope your next appointment goes well. I got sent a blood test form by my GP re my March appointment so hopefully it won’t be such a kerfuffle next time!

How are you doing Bronwen -juggling work and shielding must be challenging?

Keep well all

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

Post by Graham » 04 Feb 2021 12:56

Hi to all us CMML compromised and the carers, Thanks for your response Chris, glad things are maybe good at the moment. Have you had the jab yet? In respect of research, I am going to St James Hospital to clinical research clinic on the 16th but it's for my EUMDS project, I will make a point of asking them about immunocompromised people, and research. Then have consultation by telephone on the 18th and will have blood results from the research clinic.
Talking about research, I looked on the Charity Commissions website, the other week and was shocked when I looked at Blood wise/Blood Cancer UK, result, they have 105 employees and the below listed are for those paid over £60,000. This is a charity that can't consider CMML anymore. Just for these 15 employees (they employ 105) the wage bill is over £1,250,000, glad I no longer subscribe to their lottery. It would be interesting to see how they can justify these salaries. Maybe some public exposure would help to find the answer.

£60k to £70k 5
£70k to £80k 3
£80k to £90k 2
£100k to £110k 1
£110k to £120k 2
£130k to £140k 1
£150k to £200k 1
I didn't change number, to name, the lovely admin staff did it for me.
Could recommend Premier Seeds they have a website and are much cheaper than the big players.
Will be in touch after consultation.

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 » 07 Feb 2021 22:41

Hi Graham

Yes. Blood Cancer UK is a very large organisation and therefore their top management team commands very high salaries. Charities like that are big businesses. They must have to do a helluva lot of fundraising just to cover the salaries? I don’t know how they will fare during the pandemic as their funding will decline significantly -like all charities, sadly! I would imagine many of the staff will have been furloughed and possibly there may be job cuts. Our team of 2 full time and 2 part time staff is tiny by comparison! Personally I prefer to be part of a smaller organisation which focuses and specialises on one type of blood cancer. It is indeed quite odd that CMML is not included in their information sheets when it seems that virtually all other blood cancers are.

Hope your appointments go well. I’ve got my vaccine on Tuesday. My husband got his on Thursday as he was asked to go in at short notice -they must have had some cancelled appointments as he was originally booked same time as me!I couldn’t go sooner as they wanted me to speak to a pharmacist as I’ve had some funny unsolved allergies over the years! He had the Pfizer one and has not had any side effects at all so far.

I get my seeds from a little company in Welsh borders called Real Seeds. They are all “proper” seeds, not F1, so you can save your own seeds each year (if I remember to do it!!) and they have many unusual varieties. Always had success with them so I feel quite loyal to them! Which reminds me I must order soon or be disappointed!!
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 » 06 Apr 2021 20:44

Hi Graham and everybody on this Forum with CMML.

Did I see you at a recent MDS Zoom meeting Graham? I spotted a Graham there but didn't recognise the surname? One of the Zoom meetings I attended recently came up trumps when I asked about any potential treatments to relieve ulcers. The Clinical Nurse at Oxford (Kirsty Crozier) suggested something called Gel Clair and following my Addenbrookes appointment, the registrar included a request for a prescription in the letter to my GP and now I have a stash of these sachets (they are mouthwashes) - ready for the next onslaught of ulcers! Fingers crossed it works! I can't believe that it has been over 12 years before anybody has told me about this!! :x

How did your recent consultation go, Graham? Or was it just the EUMDS registry visit?

I've got 3 rows of first earlies in on the plot and sowed some salad stuff in the garden during that warm spell! Now it keeps trying to snow! Crazy weather!

Still awaiting my 2nd Astra Zeneca vaccine but not too worried as it seems that this one improves with age!! I didn't have any side effects at all from the vaccine. Part of me is glad that I didn't but part of me worries that my body didn't mount an immune response which would show up as aches and pains, maybe a raised temperature and feeling wiped out?! Many "normal" people I know did have those sort of responses for a couple of days. It's so disgraceful how little research is being done to try to ascertain how well (or poorly!) protected people with blood cancers are by the different vaccines. Also somewhat irritated by the fact that we have been told by the Govt. to stop shielding from 1st April, when many of us in the Clinically Extremely Vulnerable priority group have not even received our 2nd vaccines so are only, at best, partially protected - if at all!
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
BCEX14
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Re: I feel a fraud having no symptoms of CMML

Post by BCEX14 » 07 Apr 2021 10:10

Hello Chris
Good to read your post, and really glad you may have found a treatment for your painful mouth ulcers. You would think that these treatments would be widely available and talked about if successful! Very annoying that you wouldn't even have known about it if you hadn't attended that meeting.
We've both had our first jabs and no ill effects for either of us, let's hope that's not a bad sign! Our neighbours were poorly afterwards but I dont know anyone else who suffered. I agree there needs to be much more research for people with blood cancers.
Regarding end of shielding, I think you just need to be personally responsible and take whatever precautions you feel necessary until you've had your second jab, so if you dont feel safe going out and about just yet then don't!
Unfortunately my husband being only 59 has to still work so has no choice but to go back, although he is lucky enough to be mostly working on his own in the outdoors. I wonder how many people of working age have to work in close proximity to others for example factory workers? So looking on the bright side, atleast you do have a choice about going out and about again!
Hubbie still well thankfully, last blood results remained stable. Does get occasional aches and pains, stomach upsets and gets full quickly when eating ( due to enlarged spleen) but that's about it. It's just the uncertainty of the future that's worrying, but it gives us great hope that you have been managing the disease for all those years and still on watch and wait!
Looking forward to the summer now and to be able to sit on our new decking in the garden! We did get a few nice days before Easter but now its bitterly cold!
Take care and stay well
Bronwen
chris
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Re: I feel a fraud having no symptoms of CMML

Post by chris » 08 Apr 2021 08:44

Hi Bronwen

Great to hear from you and that your husband’s blood counts remain stable and that he’s generally quite well. Enlarged spleen is a bit of a pain. I haven’t had mine measured for years now but I certainly get twinges from it now and then. I try to eat smaller meals and try to keep my calories up by having cake and biscuits with my 3 cuppas a day! I also suffer from IBS so can lose weight after a bad bout but have found that going gluten-free has made a big difference but there are still other foods that seem to trigger it which I can’t pinpoint! Hence the cake and biscuits to try to keep my weight on!! They are all low sugar and the cakes are homemade and relatively healthy!

Yes, we had a little glimpse of summer weather and now it’s gone bitterly cold again. New decking sounds lovely. How’s your gardening going? You grew a few things last year in lockdown I think?

Glad your husband is able to work in relative safety re distancing. How is your work now? Have you been able to still visit people in their homes?

Just this minute been offered my 2nd jab about 3 weeks earlier than scheduled so that’s good!

Take care. 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
Graham
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Re: I feel a fraud having no symptoms of CMML

Post by Graham » 28 Apr 2021 20:19

Hello Chris, Bronwen, Glad to hear you are all well, and inoculated and have taken advantage of this dry weather that is seemingly never to end. I have not been following MDS got fed up of looking at the Facebook page found it very repetitious and began to bore me a lot of the same old, same old. Also very little going on for us CMML us. Really good news Chris about your mouth ulcers, I trust the mouth washes are working or is it still early days. I have cut back in my eating because I felt full quickly and wondered if it was because of the spleen now I know it probably is. Its nice to know the old blood results are looked at positively. I gave blood for the EUMDS registry last Feb , took 4 attempts and three different nurse to do it. Following week gave my usual sample first time try. My bloods are up and down a bit but Prof Bowen does seem too concerned. Did mention to him about swelling and chilblains feelings which started in my right foot about 9 years ago still no cause found, this triggered a response from him, and I had to give a another blood sample for a cryoglobulin test which turned out okay. Last week he spoke about cytoreductive treatment but that has been put off as it seems only to happen in winter. He is however referring me to a Immunology colleague of his who has an interest in auto inflammatory disease associated myeloid disease like CMML. It was nice to read your comments and that life is carrying on as normal whatever that is for us with CMML. Bronwen if its any consolation my Prof thinks I may have had CMML as far back as 9 years ago and I still feel the same as I did then. Chris it wasn't me at the zoom meeting.
Well I will call it day and all of you take care of yourselves.
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 » 05 May 2021 08:50

Hello Graham and Bronwen

Sadly, whilst the Gel Clair ulcer treatment seemed to help a couple of smaller ulcers, it did no good at all for a big beast on my tongue which went on for about 10 days!! I’ll persevere with it and try to use it at the very first signs in the hope it will head off the worst!! As there are only 21 sachets in the box, at 3 doses per day, I soon get through them as I usually have an ulcer at various stages on an almost permanent basis! 😩

Don’t know if either of you watch Call the Midwife but I was astonished to see one of the new mothers having a bone marrow biopsy and diagnosed with AML. I’m sure I felt a twinge in my bone marrow biopsy site while I was watching it!! 🤣
Wish the weather would warm up as have lots of veg plants on the way but too cold and windy to plant out on the allotment!
Interesting about your chilblain type symptoms, Graham. My daughter suffers terribly with them at the first hint of cold weather. Poor circulation. My husband always feels the cold but I don’t so in the winter we “disagree” over the thermostat setting!! Anything over 16-17 and I’m sweltering with 2 layers of thin clothing while he has 4 and is still chilly!!

Hope that investigation yields something useful.

This year it will be 13 years since my CMML kicked off in such a dramatic way! I had signs of low white cell and platelet counts and unexplained bouts of cellulitis for some years before that. I cannot believe that it has remained so stable and for that I’m very thankful!!

Best wishes to all with CMML!

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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