Heat Intolerance
so there’s a name for it
I’m in New Jersey 64 years old I have never had such intolerance to the heat and humidity like I’ve had this summer 2018
I can’t stand it I barely leave my air-conditioned room but that’s OK the weather will change getting cooler hopefully soon PS My 12-year-old beagle can’t stand the heat either so we are in good company
I'm in 95-degree heat in Los Angeles and I was thinking the same thing - I feel more intolerant to the heat than ever before. I get nauseous, dizzy, and, ironically, chilled! I have to stay out of the sun and in air conditioned shelter.
My mom who also lives in NJ has always had a terrible time with the heat and humidity. Seems to have gotten a little better since she takes the ibrutinib but I think it is more that her counts are better. I wish you all the best on your CLL journey 
Just throwing in here. I live in a part of northern California where it's around 95-99 everyday in the summer.
I don't know if this is part ofmy CLL, but my blood glucose crashes if I spend much time outside in this kind of weather.
I live in CT I’m 68 and I was with my two sisters in VT last week. They are 70 and 62 we all mentioned the heat was intolerable this summer. Oh my 49 year old niece was with us and she said she felt it more than ever. I was thinking it was CLL related so I mentioned to them how uncomfortable I felt all summer and the said they were too. My 70 year old sister has CLL too.
I’m in CT also and I am convinced that CLL does affect your ability to handle heat.
Do you go to a CLL specialist?
Yes at Mass General in Boston. I live near Danbury but l am not enamored with going to NYC even though it’s a shorter trip. And you?
I live in the New Haven area and go to a Hematologist/Oncologist. Diagnosed a year ago on WW. Not sure if I need a specialist yet. So confusing! He is affiliated with Yale and our local hospital. Curious what made you seek out an of state specialist?
Mostly because the top CLL expert list was heavy on Boston Dana Farber and Mass General, as well as Sloan etc in NYC, that included research and clinical trials etc. I’m actually looking to do a first line trial involving MGH and Sloan
I tell everyone to see one or more specialists as soon as they're diagnosed. My hematological-oncologist diagnosed me as Stage 0, "probably" mutated and could go on W&W. But he also lectured me on the importance of getting multiple opinions from as many specialists as I can see and he set up appointments for me in Columbus, Mass General and San Diego. It turned out I was Stage II, UNmutated and needed urgent treatment or I could be dead in 3 years (so I was told). I was rushed into a clinical trial at UCSD and am doing great. I don't mean to alarm you but I can't imagine why anyone wouldn't see a specialist the minute they were diagnosed with anything.
It's very hot and humid here too. But one thing I have noticed, the older I get the more I mind the heat and the more I perspire terribly. Same with my husband who does not have cancer. We both noticed that age has something to do with it years ago when we were remodeling a home in FL. We were in our 30s, it was June and very hot and humid in FL, but it didn't bother us! However, my parents were helping us and they were in their 60s and they were perspiring terribly and had to sit and rest a lot. We didn't understand it then. We do now!!! So, chalk it up to age!
I live in Northern CA, we now have our annual mass forest fires.....good thing there is "no global warming".
Whew... just another example of how we are all affected so differently. Two plus years on Imbruvica and I'm always cold. 60 degrees and I'm wearing a sweatshirt and long pants. Never used to be that way
Might it be an autoimmune problem? I have had an increasing intolerance to heat and sun in the past 5 years. Here in the Pacific NW I have to be careful to avoid heat exhaustion even on a temperate day. Yet, I get cold extremely easily. Over these 5 years I have developed a variety of autoimmune problems and I suspect my narrow thermo-neutral zone is another one. A-I problems are a companion of a dysfunctional immune system so they aren't uncommon for us with CLL. They manifest in a huge variety of ways since it's the body attacking itself, so it can be hard to pinpoint the real issue.
If someone can help shed more light on this, I would be grateful.
marcyh
Dx 2006, observation only
Since being dx I have been intolerant to heat as well. And if I do go outside and do anything at all sweat just pours off of me. In the past I've never sweated like that. Good to know I'm not the only one.
Definitely increases heat intolerance. I suspect that CLL messes with a body's ability to deal with heat and/or cold. I feel quite weak if I have to be out in temps over 80F for more than a few minutes. Inside, I'm comfortable at 75 and below. I used to be an outdoorsy person, gardening, hiking, etc. but now the thought of going out in hot weather almost terrifies me. I don't know if this phenomenon has been conclusively proven to be a symptom of CLL, but anecdotally, it sure seems to be.
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