Introduction/Hot Flashes

[FiddleMD]

Hi All, I just joined this CLL community after reading various posts about hot flashes. Thanks for everyone's comments and it is comforting to know I am not alone with this symptom.

I am in my third month of hot flashes and they seem to be getting more frequent and intense. The first comes upon awakening and then they occur intermittently throughout the day with little rhyme or reason.

I've spoken to both my primary care and oncologist about this and both suggested a wait and see for a few months. After reading the posts here I'm a bit surprised the oncologist was not more tuned in to the frequency of hot flashes in CLL patients.

If anyone has any remedial comments or just wants to relay your experiences I'm all ears.

Thanks in advance and stay well.

[Pekingese]

I get them too, can happen any time and often. Ros

[FiddleMD in reply to Pekingese]

thanks Ros

[lankisterguy Volunteer]

Hi FiddleMD,

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We have had 49 previous postings that mentioned Hot Flashes.

healthunlocked.com/cllsuppo...

You may want to browse through these and read the replies to find useful suggestions.

On any that you find interesting, please look for the box on that webpage labeled "Related Posts" they may be slightly different than the list due to the way the lists are queried.

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Len

[FiddleMD in reply to lankisterguy]

thanks Len I’ll check them out. Have a great day

[Big_Dee]

Hello FiddleMD

Very common occurrence to have both daytime "hot flashes" and "night sweats". My doctor did not have solution to both warmups, only thing that stopped mine was CLL treatment. Our internal temperature regulators are broken. My night sweats are much much worse than daytime hot flashes. Do not seem to be much rhyme or reason to occurrences. For nighttime sweats, I use buckwheat pillow and hospital quilted 3'X4' pad with fan on my feet. For daytime sweats, don't have a solution, I can be sitting in airconditioned room without any physical activity and soaked from head to groin. Only nice thing is daytime sweats only last maybe 5-10 minutes for me. Considering the other symptoms of CLL, I can live with sweats. Blessings.

[FiddleMD in reply to Big_Dee]

thanks Big Dee, agree can live with the heat! Have a great day

[cllady01 Former Volunteer]

You speak of your oncologist--If you are not seeing a hematology/oncologist, it would be to your benefit to see one. CLL is not well known by regular oncologists who deal with solid cancers.

[FiddleMD in reply to cllady01]

hi, I misspoke he’s a hematologist/oncologist

[sandybeaches]

You may discuss getting your Vitamin D level checked.

All the best,

Sandy Beaches

[FiddleMD in reply to sandybeaches]

thanks all for all the replies

[Suzie42]

I have had over 4 years of hot flushed, so many now at leadt 40 in 24 hour period and drs do not seem interested.

[LuzyCLL]

I have had SWEATS for about twelve years. I change my clothes multiple times and sometimes need to change the sheets. CLL can cause them, so can autoimmune diseases such as lupus or RA. I believe they are caused by cytokine storms in your blood. Take a cool/cold shower.

[Our_wes123]

Hello FiddleMD,

I am on watch and wait but have been getting them more frequently along with raised lymph nodes and fatigue.

They seem to pass after 5-10 minutes and when I am at home I can deal with it, but it does cause anxiety at work when in meetings and in an open plan office when talking to people and it comes on suddenly.

Makes me reluctant to speak up or volunteer for things some times in case I end up pouring with sweat during a presentation.

[FiiaMaalla in reply to Our_wes123]

I have the same during the day as well and find it very embarrassing at work. I'm a nurse working at the ICU and sometimes I get the pouring sweats during the acute nursing moments and it is very annoying. Nightly sweats are affecting the quality of sleep and I'm feeling tired very often. I'm diagnosed with CLL 10/19 on w&w and my white blood cell count has gone up from 17 to 94 in three years time . I'm going to have bone marrow biopsy in November and a bit anxious about the results..

[farber]

Flashes

[farber]

I have flashes too, during the night and sometimes during the day. But my incolongies not some much concern about this

[crazymazie]

I have had hot flashes for many years and, as many of you have mentioned on this thread, my oncologist has not had anything to say about this. I saw a pain specialist recently. He did some blood work and found my testosterone and estrogen were low. He prescribed a cream that i rub on externally twice a day. The hot flashes continue, but the accompanied nausea may be somewhat less. The hot flashes are not always accompanied by nausea, but when they come together, I find that I must lay down for a few minutes and wait for it to pass. Then I get up and all is well till the next wave comes.

[FiddleMD in reply to crazymazie]

thanks for sharing