I finished FCR a year ago and in the past couple of months or so have begun to feel more like the old me and less tired.
However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold. I am in bed with an electric blanket, 2 jumpers, 2 T shirts and a vest. My nose is a cold block, as are my hands and I’m shivering inside it’s just so grim.
Anyone struggling like this and if so, any advice would be welcome
My temperature varies between36.5 and 37. 🥶
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Mandy56
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I have been struggling from the cold as well after FCR although I have always felt the cold more than my wife. Now it is worse than before FCR though. I live in southern Texas where it is usually hot and the winters aren't too bad, but I am still always cold.
Thank you! Jigfettler suggested thyroid the last time I was moaning about cold - and weight gain. 🙁I printed off the specifics for the blood tests, which my lovely GP did. They came back normal.
I have to say I don’t have the other symptoms mentioned.
Maybe we just notice our physiology more, especially after being carpet bombed by FCR.
Having CLL and living with it, notwithstanding the added effects treatments have is a complex mix.
It is important we dont just assume a symptom is due to CLL, or FCR or Ibrutinib etc. Other causes can still arise. Family Drs may not appreciate this as much as we do and many will need our direction, as we become more expert with our disease. I am all for "expert patients" btw.
My Thyroid is under active - only just. no treatment and no change in 4 years... But no treatment needed. My pituitary is quite happy putting out a bit more TSH to keep my T4 level. I dont have thyroid antibodies.
Beware when a Dr reports "normal" thyroid labs. I am curious whether the labs you requested were comprehensive or just TSH and T4? This is usually the abysmal standard of the typical doctor's declaration of "normal" and these tests do not adequately assess hypothyroidism.
The chart on the restartmed web page is a very good reference for lab values. "Normal range" is a terrible reference.
Sorry the thyroid issue is such a huge can of worms.
Your references have alarmed me Hidden . I have to admit.
NOT taking ones Drs advice on thyroid function is risky. I am speaking as one with borderline hypothyroidism, and so have self interest at stake here, and some experience.
The links above are quite tricky to navigate, understand and to find the evidence that underpins the assertions.
I agree Endocrine Medicine, of which Thyroid is part, is complex. Much interconnects, varies with age, illness, medication and so on.
While I understand your point - I feel a word of caution is needed.
Well a tad more complex - I was cold intolerant before FCR. Riding my bicycles I would not get warm however long and steep the hill was. Since FCR the same - however I have worked on my fitness and with increased strength my cold tolerance has improved. My PT tells me heat generation is proportional to lean body mass, this can be measured in strength. So maybe that's it.
CLL, FCR and other meds definitely robs us of strength and fitness, stamina and endurance. I was thinking how fit one needs to be to have CLL... LoL!
So its an issue. Physical activity and fitness.
How active are you?
How do you take your temperatures? Oral / Aural / Skin / Other
My Aural thermometers read 0.5deg higher than the hospitals oral. I calibrated them back along. I have 2 Aural thermometers and they read the same.
My Oral thermometer correlates with the hospitals one.
My temps vary as yours do, which is normal.
Blood - need to check Thyroid, Hb, renal and Liver of course.
Blood Pressure is important.
... sorry. Good post - just happens to tap into issues I have had.
First time I ever felt like a genius....I live in Florida!! 😉😉😉
Seriously the temps dropped 30 degrees in South Florida yesterday. I am soooo chilled. I found hot chocolate before bed helped. I wore socks to bed and cranked up the heat. It took me awhile to warm up. My insides were so cold. It's that post chemo chill. 💕
I did not realize, but I too am an enforced genius - this year I've fled to Asia (Thailand and India) because I am tired of having a cold October-April inclusive.
But am forced to renounce my genius status as I still managed to catch a cold from sleeping with the A/C (duh). But it is far nicer to have a cold in warm sunshine than in persistent dull, freezing drizzle.
I so sympathise Mandy, I hate this cold weather and we’re not even in winter yet! My solution is a hot water bottle stuffed down the back of the trousers, refilled several times a day if I’m staying at home. Ok it doesn’t look pretty but what the hell, it does the trick!
I believe Dunelm do one that wraps round your middle but I prefer the old fashioned type.
Well, it might be this wretched cough, Nic, except I’m always like this now. Vacuuming always warms me up! Having taken Shooey’s advice, I’ve been sticking a hot water bottle on my back and it’s bliss!
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Update on my status 3 month post chemo (FCR)- doing well - no malignant B cells in my MRD test
7 months post FCR and I’m back at A&E
