CLL Support Association
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SEVERE HEAT INTOLERANCE, ANYONE ELSE?

Hi Everyone. I asked this question in my CLL online support group and the response was astounding!! I thought I was crazy, I Thought I was losing my mind...my Dr continually said he didnt believe it was related to the CLL... "THE HEAT"... I CAN NOT TOLERATE THE HEAT!! I am 46 years old and have always enjoyed summer. Living in RI I'm used to all 4 seasons, often harsh seasons, and the summer is no exception. Not only do I get that unbearable heat, but the humidity is excrutiating... So, I'm looking for as many fellow CLL'ers as possible who also have developed a severe intolerance to the heat, to share with my Dr and say IM NOT CRAZY....what is the connection??? !!! (BTW, I am NOT referring to night sweats, or the sweats in general, which I deal with non stop day And night), I'm talking about the body's inability to regulate itself with temps.... (And it makes me feel awful, sick, and mean). Any input and comments are appreciated!!!

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Well I don't think you're crazy at all Joannh!

Although I seem able to tolerate high temperatures such as the sun better than you, I suffer dreadful heat surges that have nothing to do with the menopause (been there, done that!). I could feel like I'm burning up naked in an igloo! I know we also have CLL'ers who struggle with the cold.

It's complex biology and purely my own theory but I'm convinced cytokine activity is implicated in this. 'When the immune system is fighting pathogens, cytokines signal immune cells such as T-cells and macrophages to travel to the site of infection. In addition, cytokines activate those cells, stimulating them to produce more cytokines.' (Courtesy of Wikipedia).

I have a sense of all this whipping up an internal heat storm and now try to pacify myself by believing that it's part of the internal fight my body is having to fight off 'invaders'. It's very unpleasant though and recently on holiday in the sun, there were times it overwhelmed me.

Two winters ago I went out and stood in the snow I was so hot. So you're not alone but I'm sorry you're suffering this problem.

Best wishes,

Newdawn

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Today its 67° in RI. I walked from my door to my car (idk maybe 40 steps) and was drenched!! At the moment I'm OK, but I'm certain that very soon I will just break out in a sweat and be running cold water over my arms and face. I'm ready to move to Alaska!!

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I grew up in central Texas where we have two seasons, Summer and hunting. Temps can be in the 80's in December and it can warm up in January LOL! Seriously though my basal temperature is one degree above standard since I acquired CLL, I don't know if that has anything to do with it, but it does seem warmer now no matter what time of year. I push myself in times of actual heat to try and acclimate and it doesn't seem to help. This is the first time I have heard of others having the same issue. I guess I'll still get hot, but this IS Texas so I won't complain!

Aspirin among other drugs, can lower your temp by it's effect on the hypothalamus by reducing prostaglandin production, increase vasodilation, ect... - wemjournal.org/article/S108... - as always check with your doctor.

Stay strong!

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I had severe heat intolerance prior to beginning treatment with Venetoclax which made living in Florida very difficult. Since my CBC returned to normal I no longer have that problem. Another issue I had prior to starting treatment was increased thirst. I always had a glass of water nearby and didn't leave home without taking water along with me. (No I don't have any form of diabetes). I have never seen this reported with CLL. Again since starting treatment and my CBC returned to normal, that issue has vanished as well.

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The venetoclax has been the discussion with my Dr and I lately. I have been holding off (idk why). Do you have any really awful side effects? (I know some is normal). I have a problem with thrombocytopenia and severe swelling already, so hes been a little hesitant. But I guess its time . any info is appreciated!!

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I have had absolutely no side effects at all with Venetoclax. It has been a miracle for me. I have my life back and all normal labs! Everyone is different in how they respond to treatments, and certainly side effects are possible. I wish you well on your CLL journey.

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Thank you. And I am so glad this is working well for you! Wishing you continued health

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I am interested in this topic. I don't know for sure, but I may have experienced an over regulation of body heat on Friday. I was standing in a nursery covered with plastic on a day that it was 92F outside. I felt very very uncomfortable, and my wife, the plant buyer, didn't. It's usually the opposite. That's why I say I don't know for sure. I will need more summer heat to figure this out. I am untreated, W&W, diagnosed Nov2014 at WBC 22K now at 59K.

So I am curious what it was I experienced! Good question for me to follow........

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I start to get very uncomfortable with any temperature above 60°. 50° is my comfort level. 92°? I'd most likely be passed out but if your normally cold it could be something . there are so many "unknowns" to this form of leukemia. While they are getting closer and making huge advancements, still so may unanswered. I would like to think my body is just so busy fighting those splitting cells that it forgets to adjust the thermostat

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What type of leukemia do u have and what are the symptoms?? I have been struggling with severe heat intolerance for years and am trying to figure it out thanks!

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I'm a little higher on WBC range than you but I regularly am having this problem.

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From Southern California Edison: Eligibility for Medical Baseline

To be eligible for Medical Baseline, you or someone who lives with you full-time must require use of a medical life-support device or piece of equipment. Life support devices utilize mechanical or artificial means to sustain, restore or replace a vital function.

You or a full-time resident can also be a paraplegic, hemiplegic, quadriplegic, multiple sclerosis or scleroderma patient, or have a life-threatening illness or compromised immune system.

I am heat and cold intolerant. My doctor said that she signs off on these forms all of the time for immune compromised patients.

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?? Little confused with the first portion of your comment. My medical knowledge is limited

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A part of CLL is that we are immune compromised. The first part of my comment is from the So Cal Edison site. It documents that they recognize being immune compromised as being an issue for their customers who might need more heat or air conditioning or both, for medical reasons, because of it.

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Amazing to me :) I always hated the heat. Now, after 2 + years on Imbruvica I am always COLD! I wear sweaters year round. Never seem to notice the heat. I am also on Furosimide (or was until my recent cortisone shots, but that is another story) and am also wondering if it is the Furosemide that makes me cold.

Hope you can get this under control and feel better.

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Imbruvica ? Sorry I'm new here

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So many drug names and medical terms, you will recognize them soon enough. Imbruvica aka Ibrutinib, is a fairly new oral chemotherapy drug which ( in the US) was at first available only to those with 17 p deletion, or who had failed previous treatment. It has really been a miracle drug albeit with side effects that cause some to have to go off it. I was on it when I wrote this post (8 months ago). I was on it from April 2015 - mid September 2017. My Doctor then switched me to an even newer drug Venclexta/Venetoclax because of my side effects. There are many posts on the site on both drugs, and also posts on clinical trials that use both drugs together. Just search the drug names. I am not as cold since I made the switch. I wish you all the best! Also my thyroid was checked a number of times while on Imbruvica, and it had always been normal.

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Furosemide, aka Lasix, is used for people with edema (fluid buildup, usually in the ankles and feet or legs, to bring down the swelling.

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"The thyroid, an endocrine gland just above the collarbone, produces hormones to regulate functions such as heartbeat and metabolism. The gland also controls your body temperature. ... With hypothyroidism, however, body temperature tends to decrease because of a deficiency in thyroid hormone." ---everyday health

I don't know that any of the medications or if CLL by itself is a factor in what anyone is experiencing, but it might be an area to talk with your Dr. about.

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I have the total opposite thyroid issues (hoshimotosis) which, according to most medical info, should make me cold. I get just about all of the symptoms...with the exception of the heat. I never was normal ☺

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Autoimmune Thyroid Disease with Fluctuating Thyroid Function

ncbi.nlm.nih.gov/pmc/articl...

Read this study----with Hashimoto thyroiditis or Graves disease, both of which are immune diseases, can have both hypo AND hyper times---

Were I you, I'd get a thorough check-up for that possibility, especially if your CLL care provider is not interested in the heat-related factor.

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I will definitely read this and hopefully get some info. Thank you!

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I'm sooo glad to see your post! I have been miserable ever since I have been diagnosed! I live in OK and it has been unbearable. As my WBC has gone from 15K to 70K it has worsened. Checked thyroid etc. I have also had extreme fatigue, and when I get too hot I start getting nauseated which makes me nervous which makes me hotter--a vicious cycle!!

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The combination of complete and utter exhaustion and the heat is just awful. I know the docs say here really isn't a connection, but by the responses.. I would say they are wrong

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I am continuously amazed at the comments on this site that describe my symptoms so closely. I to get nauseated if I get too warm and I am usually too warm when other people are comfortable or even cool. When I was younger it seems I was always cold. Now I have the reverse problem. I will assume it's my medicine heating up those bad cells. Dina

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I truly believe its directly related to the disease, since so many with this struggle are not even on any meds. My 16 year old daughter is constantly saying "its freezing in here", as I sit sweating. I sweat it places I have never sweat before. My forearms, top of the hands, etc. I'm seeing my doc and actually SHOWING him these responses as he doesn't really believe its related

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Hi joannh70

Inability to regulate temperature normally has, like fatigue, been a constant symptom of my CLL. I used to hate the cold but now relish it. My partner with his cancer seems to be cold most of the time, while I sit mostly naked trying to cool down.

Only extremely rarely do I feel cold, but if I become chilled it is impossible to get warm, only a hot bath remedies that situation.

I just consider a faulty thermostat just another annoyance to live with.

Presumably RI is Rhode Island, I had to look it up as being in the UK it did not immediately come to mind.

Was your amazement at the online group because of a positive or negative response ?

Good topic for discussion.

Best wishes

Bubnjay1

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Sorry about the "RI" shortcut. My amazement was a 2 part amazement. First, the number of people with cll who deal with this heat intolerance, and also the fact that my docs (any many others, even cll specialists) do not seem to acknowledge its related!!

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You are not crazy at all! Living in the Chicago area most of my life, the cold weather was always unwelcome. The same is true for me now as far as the cold is concerned, but I've sadly become intolerant of heat. In my first 6 mos following DX, we would go out walking when it was nearly 100 degrees, but I managed with a couple bottles of water and frequent bench stops. Since being on Imbruvica 5 mos, my heat intolerance and fatigue has gotten progressively worse. We've been out when it's only 75 to 80 deg F this spring, but it feels like last year's 100 degrees F to me and my CLL. I'm overheated, panting and sweating up a storm while my significant other is comfortable. Today it was only 60 deg and I was quite comfortable walking 2 miles. Summer in the 80's used to be my favorite season.

As for the indoors at room temp 72 to 78 deg F, I could be sweating hot one minute, or freezing cold and needing a sweater the next. It wasn't like this for me before treatment with ibrutinib, even though my ALC was up near 200. Light night and day sweats are becoming an issue for me where I used to be comfortable at room temp. I don't know whether it's the ibrutinib. It could be cytokine release from the dying CLL cells as I approach near normal ALC. Could also be a latent viral infection such as HHV 1-8 like EBV (HHV-4) wreaking havoc.

I've also had Hashimoto's hypothyroid for 20 years, and have tracked my body temp daily. It's currently running just subnormal 97.8 - 98.3 deg F which it's been since getting my 12 dental mercury amalgam filling removed which increased my body temp 3 degrees to normal a few years before DX. Before that, I was cold year round at room temp. Post mercury removal, my thyroid med adjustments keep my thyroid labs for free T3 and free T4 well within range, so that's not really a factor to my recent heat intolerance.

I'm going to talk to my hematologist again if there are any meds for cytokine symptoms or see if he'll test for latent viral infections.

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Hi, I always enjoyed summer also, had a nice boat and stayed out on the lake all day until I started Imbruvica. Seems like the summer days make me sick now, I sold my boat last June and have to take it easy in the summer to avoid getting overheated.

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I hope it gets better for you. So many don't get it. Its not just "being hot".

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It seems that you're not crazy, judging by all the fellow suffers here. Has anyone got any 'hot' tips (joke!) that work for dealing with the hot/cold intolerance?

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One of my friends has a little fan that hangs around her neck that she can turn on and off. The first time she wore it to church she could've gone into business selling them. But she just gave everybody the website so they could get their own. I have a small handheld fan that actually has a mister included. Sometimes I carry it in my purse. Usually it's it's on my desk. Dina

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I forgot to mention that they operate by battery

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I suffer from sudden heat flashes much like Newdawn has mentioned. This has been going on since diagnosis in 2013. One minute I am fine, and the next dripping. This has never happened at night, although I must sleep in a cold room with fan. The hot flashes are sudden and seem to most affect upper body and face...my hair even becomes damp In addition to this, I no longer have normal body temp... I have gone as low as 95, but more normally low 70's . How does one know if they have a fever? I most definitely have associated these temp fluctuations with CLL. I am stage 1, untreated, with ALC of 79 and a few nodes ( small ). At some point the docs must accept this as being related to CLL. At any rate you are certainly not alone!

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I feel like my inner personal thermostat is broken. I am hot then cold all day long. It is exhausting. You are definitely not crazy. I have tried to get my hematologist to see the connection with fatigue and CLL which he doesn't, so I have not even mentioned the extreme sensitivity to heat and cold. You are not alone.

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I too have this issue. I have relocated from Arizona to Idaho for this reason. I could nit handle the heat last summer, and knew I was not going to attempt it this year. So, yes please tell your Dr. that this is a true symptom.

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I love Arizona but can imagine the heat in summer would be intolerable.

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hi Carol, I am in AZ. Almost died I felt last summer. Cannot stand heat above 65 F. Just wanted to know your experience. I feel I must move too before summer, I get scared. thank you

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I also suffer in the heat...i live in Minnesota ,a cool state, but still break out in random sweats! I was diagnosed in 2014, W&W, stage one, 17p deleated, unmutated no TX yet. I sleep with just a sheet at night and keep the house at 62 at night and 68 during the day. Between the fatigue and heat intolerance i find it hard to get enough exercise...

I think RI and Mn have similar climates. Vacationing to Florida or Arizona sounds like punishment...maybe Alaska?

You are NOT crazy...😥 Best wishes to you!

Nanno

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The most likely cause for heat intolerance as strange as it might sound is food intolerance. I suffered with the heat a great deal for many years prior to being diagnosed and tried adjusting many things to see if they benefited me and came to realise the heat intolerance and aches and pains and emotional feelings were down to dietary issues, I'm not medically trained and don't take my word as gospel but if your not under any specific diet try just eating chicken, salad,fruit and water for a week or so and if you feel more tolerant to the heat it could be an avenue you could explore with a dietician, by reading many posts on here and my own personal experience many people suffer with food intolerance and I'm not aware if it's related to cll or just coincidence but maybe it could be something we should all look at as a reference point beginning with this illness

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Hope this helps, let me know how you get on

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The foods you listed ate basically what I live on. Chicken, salads, lots of fruit, granola and my go-to snack...oatmeal. I'm not big on red meats, and easy salmon or a helpless fish once a week. Other than that its 90% chicken (in many different forms lol)!!

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I relate! I've been suffering from heat and sun intolerance for the past 4-5 years. I loved the sun all my life, couldn't get enough, now I can't stand out in it for 5 minutes, even in 60F weather. I feel like I wilt immediately. Any exertion and I break out in a profuse sweat and exhaustion, and it takes hours to cool off. My hematologist suggested I take my temperature when this happens. I never thought it might be related to CLL, rather that it might be meds I've been on (BP and hot flashes).

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I truly think it is, at least very largely in part, the cll. The responses on this site, as well as the support links, are astonishing. I am going to 'literally' show my oncologist tomorrow and basically say "SEE...I NOT CRAZY"!!!!

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I have the same issue. Carry a grocery bag or 2 in, regardless of temperature, I'm sweating, exhausted, and Ferrell like I ran a marathon. I'm 46 and was always basically healthy... But now??? Even my arms and legs sweat... My neck is always soaked (I have very long hair but its up 99% of the time). Its like we can't win

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same here. What kind of doc do we go see for heat intolerance?

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You could ask your GP who to see and ask him/her to refer you.

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I live in Alabama and before treatment every summer my heat tolerance got worse and I would get a prickly sensation. In the the first year of treatment with AcP-196 I was able to tolerate the heat. Now the prickly feeling is coming back after the second year of treatment and the intolerance is returning. Glad to hear it wasn't just me. Sometimes you wonder. The clinical staff never agree or verify these things.

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Can relate to your post completely. Used to love the heat, beach holidays in the sun etc but now cannot tolerate it at all. Luckily I live in the UK so not usually a problem but we are having a lovely spell of hot weather now and I seek shade or stay indoors. Even then, very uncomfortable and over-heating. Convinced too that it is CLL related as I think is my intolerance to alcohol. Am 54 (diagnosed 14 years ago) and am nearing second lot of treatment after relapse from first very successful treatment with FCR.

Good luck on your journey.

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I used to be able to tollerate the cold ( a useful tool when living in Scotland ! ) ... first thing every morning all the windows would be thrown open ... not now.

My mother in her 80's and both my sons tolerate the cold well ... now it's me who is shutting the windows and turning the heating up. Short sleeves and shorts are now a rarity.

I was visiting hospital a while back to get checked out due to having a rash ... the consultant asked if it would be alright if a student was present, having been and trained apprentices in the past I had no objection.

So there I was, standing naked being closely examined by two young female medics ... what's not to like .. it could have been two hairy kilted warriors

... ( laughing ! )

( thinks ) .. I could do this and be paid ... the art college is just down the road ... ygtgo the nude model ... it would be a breeze.

Ah, theres the problem ... nude modeling and breezes don't go well with CLL !

Never mind

ygtgo

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what kind of doc do we see for this heat intolerance. I am quite concerned. I cannot tolerate heat above 64F or I get faint, feel I will pass out, cannot speak, nausea, feel very very ill, cannot stand up, red lobster face and feet and hands. Why? who do I go see?

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Same with me oh lord ...

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Hi there! Wow this is amazing but what you all are describing is exactly what I'm going through! My whole family thinks I'm crazy... I keep the temp in the house down to 50 or below and going to work is pure torture as they have the heat at 68 ...

When I get hot it's like I can't breathe and I get extreme anxiety.. my blood pressure goes out of control and I'm on meds for it now .. I had a stroke last year also. I have a meningioma in the left temporal lobe that stopped growing.

I'm wondering how I can explain this to my doctor without sounding crazy... and what is CLL?

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Hi Missty,

You've found this community which supports those with CLL - Chronic Lymphocytic Leukaemia, through a search on your temperature regulation symptoms. This doesn't mean that you have leukaemia, just that your body's temperature regulation process doesn't work in the same way as most people. People with CLL have compromised immune systems from their leukaemia and CLL can disrupt the normal immune system temperature regulation process that normally causes those that are ill to have a fever. Some of us feel like we are coming down with the flu a lot of the time. Others can experience different temperature regulation challenges as we have shared here.

I'm not medically trained, but I wonder whether in your case, your stroke or the meningioma may be responsible for your challenges of living in temperatures where others feel comfortable?

Neil

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I had the stroke just a yr ago and the brain tumor since I was little and it stopped growing about 6 yrs ago and I've been heat intolerant most of my life.. I remember as a 4 yr old passing out from the heat and I fainted regularly in junior grades till my teachers found out and kept me inside lol. Are there doctors that deal with these kind of conditions? I'm not sure I can work any longer the stress from the heat makes my blood pressure go so high :(

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Sorry, I'm not aware of doctors that could help you, but I haven't worked in the medical profession. As you can appreciate from reading the replies from these posts, members of this community struggle too, but we have a different cause than you.

Neil

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I'm from Ohio and it's very similar to Rhode Island. Insanely humid and very hot in the first place, being only April here as of typing this, we got our first taste of summer. It crept just above 73 and I was dying, rolling up sleeves and pants, sweating and breathing heavy. Shade doesn't even help either. Not sure how im going to survive 3 months of excruciating heat, but if i somehow pulled it off in 2016 (the hottest year on record) i think i'll manage.

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Hi joannh70. ....I live in FL where we get about 10 months of heat and humidity which I can't stand...This past winter was chilly for us and I loved it especially at night for sleeping. All this being said I find I'm just plain hot all the time and my a/c is always on. I don't get night sweats though and wonder what the connection is to cll?

Best regards,

Dianne

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I moved to Florida in November and agree with Ladydi49..... This past winter was cool and I think very nice. My before stated (above) heat intollerance might be overcome by full emersion into the sun (need more time to test this). I now play pickleball and find myself on the court standing in 85 degree temps, and running around. I apply sun block and ware long sleeve t-shirts and hat. I was sweaty hot yesterday's game, but sat out one game and regained my sensiblities. Now hammering an exercise routine in a retirement commnity I find it hard to believe I have CLL. I feel fine and stronger each day.

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Used to

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