Follicular and poor circulation in hands and feet

@Bannanacake that’s a really good idea…how are you doing?

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I’m good thanks @Bronte looking fwd to a relaxing eve and getting on with my knitting ,how about you ?

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Me, my husband and two daughters and both in-laws. Can’t wait to snuggle indoors and eat lots of treats!

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Traditional Christmas dinner?

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A bit of a coincidence as I have a rare malignancy called Mycosis Fungoides which is a t Lymphoma and have been getting cold feet which I don’t normally get although it is obviously winter and perhaps you notice things more when you know that you have a serious illness?My Dad had Raynaud’s Syndrome but no cancers.Of course it’s possible that you can have two,or more, ailments but they are unrelated to each other.

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I have suffered with cramps in my legs for some years (even prior to Chronic lymphocytic leukaemia (CLL) diagnosis). My feet and legs go so very cold at night in spite of the rest of my body being hot. I mentioned this to my consultant and she said it was unlikely to be connected to my Chronic lymphocytic leukaemia (CLL) but to check with my GP. I spoke to my GP this week and she wasn’t overly concerned but arranged a doppler test which I had and which showed my pulse was normal in both legs. I was advised to drink lots of water, which I do anyway and tonic water.
I have been on Acalabrutinib since September.

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Thanks @Kitchengardener2 that is interesting to hear what your consultant and GP have said and keep drinking the water then.
Look after yourself fellow Chronic lymphocytic leukaemia (CLL)’er

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I have had raynauds for many years which badly affects my hands and feet. 6 years ago I was diagnosed with scleroderma which is associated with raynauds. Short after that I devoted ET. I take slow release nefedipene which keeps the raynauds under control

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Hi @ilivesunshine you have certainly been through the mill over the years.
It is probably only on here that we realise that we are not the only ones.
That is why I feel so supported on here.
Stay safe

Amazingly I do feel well. I try not to think about it too much. We have just booked to go to Spain for a week to celebrate my 66th birthday. We fly on boxing day. Really had enough of all the covid restrictions now. It is not got going away so I feel I need to start living again not just existing. We will be as careful as we can and hope for the best.

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Actually @ilivesunshine the older I get the more I celebrate my birthdays and do it my way.
Spain sounds a good way to celebrate to me, enjoy

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I really envy you your holiday in Spain @ilivesunshine and you’re absolutely right to say s*d it and go. It was my birthday last week and I spent it in Devon. Lots of nice food but not quite as warm :wink:

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@Franko A great big happy birthday for last week and in the circumstances Devon sounds wonderful to me

How was Devon @Franko?

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Moist at times but otherwise very pleasant :slight_smile:

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Hi Bronte, for what it’s worth, I have had s similar proplem since before I was diagnosed with Chronic lymphocytic leukaemia (CLL). None of my health team seem to be bothered by it, so I try not to be either.

So, God knows what it means in relation to our Chronic lymphocytic leukaemia (CLL).

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Hi @Vindicatrix it is so confusing isn’t it.

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Hello @Vindicatrix….It’s nice to know I am not alone. I find the colour my hands go quite as alarming as the coldness but like you nobody seems very bothered so I have tried to ignore it too. Since I can’t even get a blood count out of my consultant I sometimes wonder if he thinks it’s just better that I don’t know the details. It is annoying though as I am quite pragmatic and curious about the whole thing rather than anxious or frightened!

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Hi @Bronte I always ask and get a copy of my blood test results from my GP surgery.
Take care

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Hi Bronte, I sympathise with you, in that your consultant appears not to be too helpful.

Please persevere, and check with your GP, to see if there are any underlying problems.

Like you, I suspect, I am always wondering if the GP’s and Consultants, know more about our condition (The bad parts), but don’t want to impart the true facts.

This is probably because they thing we can’t take ‘Bad News’, or that they are not really bothered.

If that is the case, be insistent and ask them to tell it like it is. (That’s if you really want to know of course, some don’t.

Personally I do want to know, and would be really angry, if I thought they were deliberately holding back, information, against my wishes.

I hope things improve for you, (Keep at them) All the best. Ron.

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