Hi I'm a newbie..cmml...looking for friends

I’m 38 and I’m on my 11th year of cmml. On glivec. Never found anyone with cmml to chat to and it’s still a long and lonely journey so looking to find like minded individuals who I can make friends with xx nay

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Hi Nay, I am so glad that you have found our community forum, I find it supportive and I hope you will too. You were diagnosed young and I expect that brings up so many fears and questions and as you say it is difficult to find people with a similar diagnosis or situation. I actually have CLL but I thought I was the only person in the world in my situation. Also 11 years ago there was far last reliable information and support available out there. Research and trials have come on leaps and bounds since then too. If you would like to talk to someone the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. How have you coped emotionally, physically and practically?

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Hi Nay. I am 77 and in my 3rd year of CMML. On Hydroxycarbamide for the past year. Like you I have not come across anyone else with CMML in the local area and certainly find the uncertainty hard to come to terms with especially with blood tests every 5 or 6 weeks and wondering what they will show. Glad to chat if you want.

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Welcome to the forum @NAY82 and @mrew. Amazing that you two have joined the forum at the same time and hopefully you will be able to support each other. There are also many threads on the forum that many people have in common, and you are always welcome to add any questions or share any experiences with us. Best wishes

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Welcome and yes what a co-incidence that you and @NAY82 should join our community forum at the same time. I don’t think the sick feeling in my stomach and anxiety ever seems to go away before blood tests, although I have found, after 16yrs, it does subside a bit, or am I just getting used to the regular tests? I also get the same feelings before all medical appointments. We are all here to support you both and everyone on the forum. It is about the similarities not the differences.

Hello there @NAY82 and @mrew :blush:
Wishing you both a very warm welcome to the forum! I’m Su, I am one of the Support Services Officers here at Bloodwise. It sounds like you have both been through so much, and in particular, the isolation and uncertainty of your experiences have been incredibly tough to deal with? That is so understandable for something like this to have such an impact on you- how have you both been coping?

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Good morning everyone, I hope you are all well and had a lovely weekend :grin:

@NAY82 and @mrew I just thought I would check in to see how you are both doing?

Su

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Hi. Thanks for all your replies. Sorry I’ve taken a while to reply. Been in a bit of worrying place. Seems my kidney function is declining, I shouldn’t be surprised after 11 years of glivec! Xx

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I am sorry to hear that your kidney function test is declining, yes, it sounds like a worrying place for you. We are here to support you and the Bloodwise Support Line is here for you, details above. We might all have different blood cancers and be on different treatment plans, but I think we all share the same fears, thoughts and feelings. Please keep letting us know how you are and what are the next stages for you?

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Hi Nay
I am in much the same situation but the haematologists are keeping a close eye on my kidney function as I am sure your doctors are. But it is an additional worry. Best wishes. Mike

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Hi Su
As carer for a disabled wife and 102 year old Mum I dont have much spare time but just taking a quick break between ironing and getting tea ready. Feeling a bit sorry for myself after 2 weeks with a bad back from loading wheelchairs into the car boot but had a lovely day yesterday celebrating our twin grandsons 9th birthday and some valiant attempts at music making from one of them on his new keyboard. Mind you I got talked into having them and their older brother for 2 or 3 nights at Easter.
Thanks for the kind wishes and hope that nobody on the forum has suffered from the recent storms.
Mike

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Hi Mike @mrew. You certainly have your hands full. I hope the back problem is not part of the kidney problem? I used to teach music, as well as everything else (as I taught from 3-11 yr olds during my career), so I am delighted to hear about your grandson, and I hope he sticks with it. I got talked into having two of my grandchildren later this week, but we enjoy it really! I am sure that even though it will be exhausting in some ways, it will also provide with some light relief. I hope the back is less troublesome this week.

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Hi Mike, yes, you certainly do have your hands full and it sounds as if you are like me and find it very difficult to say ‘No’, but it sounds as if your grandsons also give you lots of pleasure and I hope the keyboards sound better with practice. I was brought up to never show ‘weakness’ by asking for help, but at 70 yrs old I am starting to say ‘No’ and I have found the world does not fall apart. I am not surprised you are ‘feeling a bit sorry’ for yourself, that’s OK. Don’t forget the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. We are also here for you so please keep posting what it is like to be you. p.s. I have stopped ironing as many things as I used to as well.

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@mrew Mike, I really hope we can reassure you that it is honestly ok to be feeling sorry for yourself. It’s only natural, as you are going through so much by the sounds of it. I can only imagine the challenges being a carer can bring, in addition to having health problems of your own. I’m wondering, do you have any support around you? be it practical or emotional support?

Happy belated birthday to your twin grandsons! :birthday: :partying_face: :grin:

Su

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Dear Su
Thanks for your kind wishes and concern. Like many in this mobile world we do not have any immediate support but as an “old school” Yorkshireman am very self-reliant and independent and don’t beleive in self pity knowing that so many others are in a far worse situation. Came as a further setback last year to find that I had also developed Leukaemia Cutis but at the moment treatment is keeping blood counts reasonably stable (even if out of normal range). So like all of us will keep battling on and hoping for the best…
Regards Mike

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Hi Mike, it must certainly have come as a setback for you last year. After what I said above I am probably ‘old school’ too, I am also very self-reliant and independent, although I am prone to the odd moment of self pity, although I really do realise that I am such a lucky girl and that so many others are in a far worse situation. I hope you can take care of yourself as well as you take care of others although your time is obviously so limited. As for your blood counts, in my mind stable sounds good. Are you getting any side effects from your treatment?

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Hi, I haven’t been diagnosed with leukemia but have reason to believe it’s a possibility.

My latest blood test showed increased monocytes “, a definite symptom for CMML.

Do you have monocytosis? If so do you know your reading ?

Thanks Al

Hi @Red1, how are you? Waiting for results and what the diagnosis may be can be a difficult time. Have the treatment said what the next course of action is? Are they going to refer you for further tests? If you would like to speak to someone from the support service team, don’t hesitate to reach out. You can find all the ways to contact us here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/.

Best Wishes
Bav