IS THIS CLL? DO OTHERS HAVE THIS?

[JosephVidmar]

Went to sleep easily and then suddenly woke up in 2 hours. Couldn't get back to sleep. Toss and turn and up and down and feeling horrible. Heavy eyelids begging to sleep but I lay down and it doesn't come. Been going on for months and worse now.

First it was the sweats, hyperhidrosis 20 hours a day for months. Sweat/Chill/Sweat/Chill. Then the sweats slowed way way down, but the chills became more and more. On a 35C day I would feel cold. The body was not adjusting temperature. No fever. Just chills, sometimes with a burning sensation on the skin.

Shuddering and shivering, it is a miserable feeling. When others are in shorts and short sleeves, I am wearing two long sleeve shirts and neck scarf and down shawl.

It is called Thermoregulatory Disorder. I typed it in the CLL search engine and nothing came up. I looked it up on the internet and only abstract academic things or vague references to symptoms of Parkison's or MS. They don't mention CLL.

So my questions are:

1. Is this another CLL thing for which there is no treatment?

2. Is this another CLL thing for which THERE IS a treatment?

3. Is this a threatening co-morbid condition in addition to the CLL?

4. Is there any treatment whatsoever it is, like a pill for the hypothalamus or something?

This happens every night now. It takes me all day to try and catch up on the sleep that I lost, and then, by evening time, I am usually almost normal again.

Love to you all precious beings,

Joseph

[Peggy4]

Not Nice at all. I think fatigue is something that nearly all of us experience at varying degrees. When you say you feel better towards the evening, I'm wondering is it a blood sugar problem. Might be worth checking out?

Peggy

[Newdawn Administrator]

Hi Joseph, this sounds totally miserable for you!

Five months ago you said the doctor had confirmed you don't actually have CLL but a flow cytometry test hadn't been carried out. I understand this was investigated in Taipei and obviously CLL isn't prevalent in Asia. Have you had any further testing done to establish the underlying condition?

The reason I ask is because this level of day and night sweats would normally be consistent with advancing CLL and it's odd to see in as yet undiagnosed CLL. Do you have any enlarged nodes or spleen pain? Are you subject to frequent infections and have you experienced weight loss?

I certainly hope you can find answers to these distressing symptoms soon but at the moment, I'm not sure whether we are talking about CLL or you are exploring all possibilities.

Regards,

Newdawn

[JosephVidmar in reply to Newdawn]

Hi Newdawn,

I have always enjoyed your posts and am honored by your writing.

My diagnosis of CLL was confirmed last month by Dr. Yao-Chang Chen, a research scholar who has published over 100 research articles, mostly on bone marrow disease (and ironically the only onco out of 4 who didn't ask me to do the needle-in-the-bone BMB. A flow cytometry had been done at my insistence before and so he had those results to go by also. I neglected to tell the community.

He ordered more tests and another flow cytometry. His estimate so far is that I have had CLL B type for 10 years, but that I am still some time away from chemo. He was more concerned about the heart actually and ordered a CT-A.

However, I don't think he is aware of increase of severity of chills and freezing feelings. He gave me his email and I will write to him soon.

So my findings from my post so far is that sweats (and chills) are fairly common in CLL, but not to the debilitating degree that I have them. This might mean there is a co-morbid condition that needs to be identified. It took 8 months to get a reliable CLL dx. I dread how long it will take me to find out the rest.

[JosephVidmar]

Yes, I have an enlarged spleen that I can feel more stronger now. The radiologist calls it severe, Dr. Chen calls it moderate.

Also no appetite and loss of weight

[Newdawn Administrator]

Thank you for your kind words Joseph. I'm sorry to hear you've had a definitive CLL diagnosis now though I suspect there's some kind of relief that you can at last identify the underlying condition.

I can tell that you've researched this problem yourself so will have thought to eliminate the usual suspects for the secondary hyperhidrosis like thyroid problems, diabetes, sleep apnoea etc. In the absence of an existing condition which can be attributed to this problem, I think I'd be having discussions with my physicians about treatment. Symptoms like this which cause daily distress and can become debilitating, are worthy of treatment consideration regardless of blood levels. Timing of treatment is dependent on many factors and quality of life issues are very important particularly if you have had CLL for a decade. You are right in saying temperature dysregulation is strongly associated with CLL but not to the extent you seem to be experiencing it. I suffer severe heat at night and find it challenging enough.

In the absence of identification of a health condition that may be driving or exacerbating these symptoms, it could be that you may have to push the issue of CLL treatment because from what you describe, your present situation is becoming intolerable. Hope the heart tests work out ok.

Wishing you the very best.

Newdawn

[Bubnojay]

HI Joseph

Given the severity of your symptoms, I think Newdawn is right and it is time to talk about and consider your options concerning treatment once your heart situation is resolved.

Professor Chen is of course an eminent specialist, so I would urge you to send him the details you have written here, he is far more experienced than we. Perhaps he is not aware of your debilitating symptoms.

Certainly our internal thermostats break down, and with CLL soaking night sweats are reported by patients needing treatment, but not to the extent you have.

Wishing you a speedy resolution, do let us know how you get on.

Best wishes

Bubnjay1

[PoxiLoxi]

Hi Joseph

I was diagnosed with CLL last April (2016). I have had similar symptoms to you and insane hyperhidrosis. My doctor originally prescribed beta blockers - I assume she must have thought it was anxiety related - which I'm not. However my dad (who has prostate cancer) said his oncologist suggested I try sage tablets 2500mg daily. I can advise this has got rid of the night sweats and nearly all of the excessive sweating, so at least I'm not waking up any longer. I now only get the hyperhidrosis when I'm in a really hot climate (over around 27 C).

I live in the UK, so heat isn't usually a problem for me, but I visit France regularly and if it's hot there, I have to have a portable fan with me all the time to keep me cool as any sign of getting hot, sets off the sweating. I get the hyperhidrosis only on my head, which is a bit bizarre, but it is like a waterfall when I get it.

If you have hyperhidrosis elsewhere (such as underarms) your doctor can prescribe you medication that you apply to prevent the sweating. I don't know if it works in our case though.

I understand that sage does not work for everybody, but its worth a try as it's only a herb. I can't live without it now, it's made a massive difference to my life.

Goo luck on your journey.

Joanne