Diagnosed with both CMML and MCL

Recent diagnosis
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Both are indolent and praying they stay that way. My oncologists all say it’s very rare. I also have a lung disease DIPNECH ( Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia) and have the phantom smell of smoke frequently.
Anyone else out there have this or heard of this?

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Welcome to the forum @Mila. No, never heard of that but who knows, this forum is the place to see if anybody and is a great place to share experience. How are you keeping at the moment? :blush:

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I am feeling well thank you. Blood counts are as they have been so that is a good thing.

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I am on a watch and wait protocol with blood tests and doctor visits every 3 months.

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Hi @Mila, a great big welcome to our forum. We support each other on this forum and share our experiences and the Blood Cancer UK support line details are above.
It is interesting to hear you say about the phantom smell of smoke because I have that.
I knew of someone in a ground floor flat that a real ongoing argument with someone who smoked and she blamed him for her smell of smoke. She actually sold up and moved but she still had the smell of smoke.
I just accept I have that sensation sometimes and have not thought any more about it.
Have you looked into it at all?

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Thank you! It’s lovely finding this forum and chatting with others who have some of my strange symptoms. I have tried looking in to it but most of my doctor’s say it isn’t related to any of my diseases or that they’ve never heard of it. One doctor actually asked me if I was near someone smoking! I’ve had it so long that I just accept it now. I’ve read that a treatment for it is to null the sense of smell but I’d rather keep my sense of smell even if I have to put up with the smell of smoke. It actually smells more like a dirty ashtray to me. Annoying when it occurs. It seems to occur in waves- some days I smell if a lot (8+ times) and other times I don’t smell it for weeks. Is that how yours is?

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Hi Mila, I had a patch where I had the smell continually but now it is very occasionally and usually in the evenings.
Thank you, you have shown the value of this forum already, it is lovely to hear that I am not alone.

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I’m on watch and wait to for follicular lymphoma. I hope your virtual appointments have been ok? It’s a lot harder than face to face isn’t it!

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