CLL Day Sweats! Has anyone found relief for this?!

[Emma_9]

hello everyone, I was diagnosed with CLL in July 2016 and am 'wait and watch'. Have an enlarged lymph node in my thyroid, and gall bladder.

The symptom that is debilitating is the daily hot full body heat and sweats. My hematologist said there is "nothing that can be done" though my endocrinologist prescribed clonidine. Still, these awful sweats continue, and often, I cannot even dress and go out for errands, or perform simple tasks.

Does anyone else suffer these sweats during the day? and have you been able to find any sort of relief?! I'm at my wits end, and simply cannot function like this, and I'm not a complainer!

[cller]

Emma, I don't know if this will help in your case, but will share in case: although I am not the one with CLL (hubby has it) I have had hot flushes for above twenty years now. I haven't found anything that takes them away and keeps them away. But I have found something that definitely makes them much worse: Dairy! Even a small amount of cream in a cup of coffee. So I avoid dairy as much as possible.

[Jomary8505]

I also get random attacks of hot flashes and sweating. I went through menopause over 5 years ago but still seem to get them especially when I am active especially. I have a tiny fan on my desk at work and try to dress in layers. I also stay away from warm furry boots. Many times when I am out shopping or doing errands, I look like I just stepped out of a shower by the time I get in line. It's embarrassing but I have learned to live with it. I mentioned it to my CLL doctor and she said it happens-don't be embarrassed it's just one of the strange effects CLL can have. Sorry, I know it's not much help!

[J-girl in reply to Jomary8505]

I am that way too!! And it’s easy to say don’t get embarrassed when it’s not you. People look at me like I’m crazy. It will be freezing and I’m dripping in sweat.

[Emma_9 in reply to J-girl]

Exactly, folks think you look "fine" though you're entire body is burning up like a furnace inside! Winter is the worst!!! Can't even think about putting on a sweater or coat and hat. My body feels "clammy" all over. I've explained all this to my current physicians, and still have received no advice from them, other than to "wear layers". I'm seeking to build a new "team" of doctors who understand and specialise in CLL.

[J-girl in reply to Emma_9]

It’s frustrating!

[zaax in reply to Emma_9]

Have you tried clothing that wickes, like runners and soccer players wear?

[Emma_9 in reply to Jomary8505]

it's debilitating for me---i can't even dress sometimes. i've been given advice from another member that it could also be due to a vitamin B12 deficiency. I've ordered a supply of vitamins and will keep everyone posted. These hot warm sweats are NOT related to menopause in my case, since I had a total hysterectomy years ago. The doctors chocked it up to CLL...with no advice. other than the endocrinologist prescribing clonidine.

[J-girl in reply to Emma_9]

Me too! Had hysterectomy when I was super young. Have had all my vitamin levels checked and they are good. I take a shower and then I’m drenched in sweat.

[Bassetlux in reply to J-girl]

Sounds a lot like me. I can’t stand this being hot and sweaty all the time.

I wish someone would come up with a treatment.

[lexie]

I have had those day sweats since 2010, at the worst tomes, to my horror. I was only diagnosed 2 years ago so found those sweats perplexing. I wear an athletic running hat that has a band that wicks moisture so sweat no longer pours down my face or drenches my ponytail that I pull through the back of the hat. I wear those everywhere. I anticipate environments that promote the sweat that, by now, I know what those are for me; high humidity, heat, no breeze. There are shirts that also wick, and I powder up. There are those bands that you put in freezer and wrap around the neck that have really helped and kind of pretty, too. Maybe some of these solutions will help you.

[J-girl]

I do too! I have gone from watch and wait to active and taking chemo. But the heat problems are really bad.

[Emma_9 in reply to J-girl]

please let us know how your chemo is going. Even with the chemo, your heat troubles persist?!

[J-girl in reply to Emma_9]

Yes that is what is perplexing. I do notice since I started chemo the heat and nausea really hit me if I’ve overdone. And by over done I mean making the bed and doing a couple loads of laundry. I have to really pace myself and if I get in a situation where I can’t then it really hits. I have developed AIHA since starting the chemo and had some blood transfusions. My latest counts are good though and my Oncologist says I’m responding very well to the chemo.

[Emma_9 in reply to J-girl]

Thank goodness you're responding well to treatment! I've received advice from another member of this group to begin a vitamin B12 regimen which I've ordered and expect to receive today. Will keep everyone posted as to how it goes..Vitamin B12 Cyanocobalamin 1000 mcg. (thrice per day)

[Vlaminck in reply to Emma_9]

Please be careful with the B12. There are many bad things that can happen from excess (solid cancers, etc). I thought I had a deficiency, rarely eat meat, so started taking 1000 once or twice a day for a month or so and then had a test and I was double the maximum level, and of course have cut out taking it. The daily recommended dose is only 4 mcg or something. So if you start doing this, make sure you get your B12 tested not too long after.

[Emma_9 in reply to J-girl]

Hi j-girl...please continue to follow this thread, and hopefully, those who have these symptoms may find a solution and some relief. It's maddening that physicians, oncologists, hematologists are ignorant in this area, and offer no relief. They have absolutely no idea how debilitating the full body hot sweats and clammy skin impact our ability to function!

[Emma_9 in reply to Emma_9]

woke up this morning with such a full body sweat, it was as though I just got out of a swimming pool! although it wasn't as relaxing as a swimming pool would have been! my hair was literally dripping wet! my dr simply says that it's part of what i need to deal with ....with the CLL.

YIPES, so much for empathy, or offering a treatment to help me!

[kimiD]

Hi Emma,

Enlarged nodes and sweats sound like you are experiencing some "B symptoms". Are you seeing a CLL specialist, and have you asked him/her about these symptoms?

[J-girl in reply to kimiD]

Hi KimiD, I’m following this thread because I’m having the same symptoms. What do you mean by B symptoms? My Oncologist doesn’t address it at all.

[kimiD in reply to J-girl]

J-girl, see my reply to Emma below.

[Emma_9 in reply to kimiD]

Hi Kimi, That is my next step...to see a CLL specialist. The current hematologist is not helping me at all, other than blood tests, and she says nothing can be done regarding the hot sweats. I do have enlarged nodes in my thyroid, and though I'm thin, my neck looks as though I'm a professional boxer!!! I am currently diagnosed at Stage 1. What are "B symptoms"?...I'll look it up in the meantime on Google.

I have sought out specialists at Weill Cornell, in NYC, and lo and behold, they do not accept my insurance. Frustrating and maddening all round.

[ChicagoDave in reply to Emma_9]

A CLL specialist should be knowledgeable about this. Our immune system is disregulated - this is an immune system cancer after all - I read once that normal illness can trigger this and we might not show a fever even. Don’t know if that’s true but I never assume that no fever means no illness. Could you have caught a bug of some sort?

[kimiD in reply to Emma_9]

Hi Emma,

B Symptoms include:

Fever (i.e., temperature >38°C [>100.4°F]) for 3 consecutive days

* Weight loss without trying, exceeding 10% of body weight in 6 months

* Drenching night sweats

My CLL specialist also wanted to know if I had any nodes that were interfering with swallowing, or any abdominal pain. I believe that was because he wanted to know if there was a considerable change in my node or spleen size between my visits. Before I started treatment with ibrutinib, the nodes in my neck were so large they made it difficult to swallow or lay down without them causing discomfort from getting in the way. Apparently my night sweats were not drenching enough to concern him. However, I typically do not sweat with exertion , but rather turn beet red and overheat internally. I live in a warm climate and during the summer I constantly had one of those cooling towels around my neck, which helped a little.

Starting treatment was a decision I made after having the enlarged nodes, night sweats, WBC of 150k, and fatigue that kept me from doing normal activities for weeks in a row. Everyone is different and a specialist is key to helping you make these types of decisions.

You might be able to contact your insurance and see if they will pay "in-network" benefits to an out of network provider. They do this sometimes if the type of specialist you need is over a certain distance from your home. Or you could try requesting a case manager to see if they would be able to help you get an exception.

Best of luck on your journey.

Kim

[Emma_9 in reply to kimiD]

Thanks for your response + advice, Kim! While I don't have a "fever" ...my entire body becomes like a furnace when these sweats occur. It's not due to menopause, though I did experience hot "flashes" intermittently. I'd trade these full body furnace sweats for the hot "flashes" any day!!!

Seeking a CLL specialist who'll understand this horrible bodily experience that's a result from this condition.

Will keep everyone posted!

[Emma_9 in reply to kimiD]

Yes, I certainly have, and will see her yet again in two weeks. THIS TIME, I promise myself to be more assertive in needing this help! I cannot live with these sweats, particularly during the day, morning, when I am trying to get dressed!I've cancelled appts with her during the winter months because of this. I simply could not get dressed in warm clothes (because it was so cold outside) when my whole body is a furnace!

[holly2]

The only relief I have ever found from it is cursing! Holly

[crazymazie]

try 'three immortals'. you can buy them on amazon.

[jijic]

I've heard really good things about this from a friend going through menopause: embrlabs.com/. Thinking of buying one myself.

[J-girl in reply to jijic]

I bought one and couldn’t tell any difference.