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CLL Support Association
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Very nervous and anxious.

Hi everyone which is reading my post.

I just a week ago was diagnosed with CLL but didn't see my hematologist yet after the initial blood test in his office. I was referred by my physician base on annual blood test results. I can't sleep now and sweating a lot at night plus lost appetite after I heart by phone about CLL. Any suggestions from you guys about night sweats will be appreciated.

Thanks in advance.

Zhenya.

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I had drenching night sweats for 6 months as well as losing 60 lbs. prior to diagnosis.

Fatigue, waking up in the middle of the night drenched in sweat and the sheets soaked,

significant weight loss without trying and loss of appetite are the classic exterior symptoms of CLL.

Wishing you all the best and don't forget you are not alone.

Nick

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Thank you, Nick.

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I had months of fever and night sweats. That all went away on its own, and before I started treatment. I worked really hard on living healthy through organic diet, vitamins, exercise, Qigong, positive mental attitude, affirmations, etc. The whole 9 yards. I don't know if that's what brought my nights sweats and fever to an end.

As for the problem of waking up at night with soaking wet sheets... some people sleep on bath towels on top of the sheet so they don't have to change sheet in middle of night.

I am sure the news of your diagnosis is very unsettling. But at least know that there are good new drugs for this now, ways to manage it without much in the way of side effects (at least for some people). I started Ibrutinib 3 weeks ago and am having no significant problems with the treatment.

Good luck, and keep us posted!

kim

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Thank you, Kim for positive news. I just don't know if these symptoms are anixuety after diagnos or part of CLL symptoms. Is it possible that CLL is progressing with symptoms just for a week?

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Loss of appetite could certainly be anxiety resulting from your recent diagnosis. I doubt that night sweats would be - that's not a typical anxiety symptom but it is a classic lymphoma/CLL symptom. Have you taken your temperature in evening? Night sweats are often accompanied by fever, sometimes just slight fever like 38 C. The classic lymphoma 'B' symptoms are: fever, nights, sweats, nausea, loss of appetite, weight loss, swollen lymph nodes, fatigue. You don't need to have all of them at once. To me, it is believable that these could set in shortly after diagnosis. IF the CLL has progressed enough to come to a doctor's attention for diagnosis, then it has also progressed enough to manifest those symptoms...

How were you diagnosed, by the way? From blood work? lymph node biopsy? Or...?

I know it's hard to believe at this point, but this news of your diagnosis isn't the end of the world. People are living relatively normal lives with CLL, and treating it as and when needed.

kim :)

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I have been diagnosed in march of this year, It was a changing event for me, sleepless nites, When I fell to sleep in two hours I was wide awake, feeling very hot all over my body, Anxiety I found was my biggest problem. I found when I worked in my garden got real tired most of the anxiety left and slept all nite, I guess the best thing I can do is realize whatever will be, will be, the not knowing is what causes my anxiety, but when you think of it does anyone know what the future holds for them,

Bless you

p,S my doc tells me to let him worry about it, I will try

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Hi Kim...have you been prescribed ibutrinib as a first line treatment?

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In my case I did get Ibrutinib first line - sort of. They started me on FR. I did one cycle. Doctors did not like results and so switched me immediately to Ibrutinib. They told me I could have had the Ibrutinib from the get-go. But at that time, I was reluctant to start a lifelong drug and I actually felt more comfortable about a Lite chemo (FR-Lite). I am not 17p deletion. But I did have extreme cytopenias at start of treatment, as well as extreme bone marrow infiltration (95-99%). Those factors made me not ideal for any type of chemo because chemo is myelo-suppressive. And they did qualify me for Ibrutinib in my province in Canada, by special request.

So I would encourage everyone to think outside the box on how to get the treatment you want. Even if the rules say "no ibrutinib first line unless you are 17p deletion"... there may be other factors that come in to play. I would NOT have been able to get ibrutinib if I had remained with my local hematologist. He told me quite honestly that his special requests are rarely/never approved. I took the good advice of this forum and went and got a CLL specialist who works at the provincial cancer agency along with other CLL specialists. And together they can get their special requests for patients approved for funding. So be sure you are seeing a CLL specialist, not just local hem or hem/onc.

kim

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Thanks for your response Kim and hope the ibrutinib has things under control. I live in Canada as well..Ontario...and although I don't need treatment now am researching the alternatives for first line therapy.

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Hopefully we will hear before Christmas if Imbruvica (ibrutinib) will be funded in Ontario, for first line. The widest use at the moment would be in Quebec or the Yukon... B.C. is limited.

Patients with private insurance may have a few more options, currently.

You can follow the provincial funding negotiations at the following link..

cadth.ca/sites/default/file...

~chris

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Thanks, Max. I believe the ibrutinib will bring things under control for me although it will likely take several months - maybe even better part of a year before my blood counts are in normal range. I have been on it for 3.5 weeks now, and my platelets and neutrophils are climbing out of the hole, and my hemoglobin is not dropping as rapidly. So far so good! :)

kim

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Hi Zh

61 year old male with 2017 diagnosis and I can tell you how I progressed

I have seen and endocrinologist for a very long time for unrelated reasons but I do have a huge collection of blood work 5 times a year going back 8 something years and this has allowed we to see the CLL progress now that I understand what the numbers mean

My normal WBC and ALC were on the low side of normal at 3.8 and 1.4 and in 2014 started slowly rising and I went through a period of no issues and I am really happy I was not sent to and oncologist early as it would have been years of watch and worry for no reason

In 2016 I was headed to the high side of normal and started to get soft tissue injuries,dental problems and sinus problems and ended 2016 with a serious planter fascia issue and my health started a pretty serious decline

In May 2017 on my annual physical the WBC and ALC could not be ignored any longer and it was off to the oncologist

This was a very disturbing time as in a matter of 7 weeks the WBC and ALC went from 10 and 8 to 21 and 16 and I had a really difficult time with the blood changing that fast as I was having a lot of night sweats and in general felt horrible and it was difficult to work at best

No one can say why but my CLL settled down and has stabilized at WBC 17 and ALC 14 For over 90 days and it has given my body time to adjust to all the changes and I do feel quite a bit better now and no longer get night sweats but my normal sleep pattern has not recovered

The foot remains the big issue as it has refused all attempts to heal and I am seeing foot specialist at the Hospital For Special Surgery and they did and MRI today and next week they will decide the possible ways to resolve the issue as it’s really quality of life deal breaker

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Hi Tomm,thank you for your reply and your health story. I wish you to resolve your foot problem the best way. I was surprised reading about your sinus and foot problems since I have the same issues with my sinus for two years but I thought it is an allergy to swimming pool and foot problem - heel bursitis as Ortho doctor told me. Heel is bothering me for about 9 months. Wishing you the best, Zhenya.

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I always had some level of allergies that were well controlled until the Spring of 2016 and they got so bad I developed dental abscess and my Denist who I had seen for years was the first Doctor who felt I had and underlying medical issue

And ENT found a different spray that keeps them in control BUT it has its own side effects like all medications so it’s a survival medication

I also forgot how bad bug bites have gotten :)

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Kim, I will go next week for follow up appointment with hematologist. I was told first time last week about CLL by the phone call from their nurse based on blood work results. Will keep posted, and thanks for your reply!

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Good luck Zheny! :)

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The good news with CLL is you usually dont have to move too quickly.

The CLL society site can help.

Try to see a CLL specialist as well.

It is a shock to get the news but I got used to it after a month or so.

Some people keep extra tee shirts to change into,

Be well,

Mark

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Anxiety absolutely can cause night sweats. CLL is a VERY VERY slow moving disease most of the time, so the symptoms showing up within a week of diagnosis are most likely related to the anxiety than CLL itself. Talk to your doctor about the anxiety. When the same thing happened to me, my doctor gave me some medicine to help me sleep on the nights that I couldn't. You have us all here to support you, and users here will point you to the correct sites so you can learn all you need to about the disease. I found that the more I learned, the more relaxed I became. We have a LONG life ahead of us still.

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Maria, Thank you so much for you support and optimism! Will try my best in this new world for me.

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I got the unexpected news over the phone too. It's not the best way to hear that you have such a serious condition, and with no additional info it's easy to start thinking you will have the worst possible outcome.

I was quite anxious and over-concerned about every symptom I read about online in my Dr. Google searches. (Is this night sweats? Is that an enlarged spleen? etc.) This forum, additional information from the cancer center and the CLL specialist in a nearby city have made a huge difference.

I still get anxious and a bit over-worried about physical symptoms. I get confused about what's aging related and what's CLL, or if it's treatment caused. But the doctors do too so I'm calming down about what's causing it and dealing with things as they come up.

I'm glad you've found this site and wish you all the best in the journey that's just begun. I'm sure with support and information you'll feel less anxious and more able to cope.

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Dear Mary, hope I got your name correct. Thank you your reply and understanding. I hope everything will.be OK and I will be less anxious soon. I wish you a good luck and health.Zhenya.

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I was dx in 2010 and probably had the disease for about 4 years prior to that. I had night sweats, though not of the drenching type, weight loss, fatigue and tiredness. The night sweats lasted a few months and then went but I have had periods since when they appear again. The worst thing for me was the fatigue and tiredness, when it hits it is just as though somebody has turned the power off. Should have started my first cycle of FCR earlier this month but due to a severe leg infection which hospitalised me that has been put on the back burner for now. Hopefully your night sweats will pass with time as mine did. This is not an easy disease to live with but there are a lot that are far worse, and there are more and more effective treatments that are becoming available all the time. Good luck.

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Hi. I like many here have suffered with the dreaded night sweats and the advice as has been said in posts already is first class. I have catalogued my journey from diagnosis to present day here good days/bad days please feel free to browse & I hope it is of help to you. Best wishes.

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Hi Zhenya,

I have had CLL for 25 plus years. Yes night sweats are a PIA but you will learn to deal with it. I sleep on a terry cloth cotton towel. When it's wet I get another. I also have a fan that blows directly on me. It helps keep me dry so I can sleep.

I treat with EGCG and that keeps it under control. Epigallocatechin gallate (EGCG), also known as epigallocatechin-3-gallate, is the ester of epigallocatechin and gallic acid, and is a type of catechin. I increased the dose at first trial until it made me sick, nausea, to 1200mg three times a day. I reduced the dose after several months to 800mg 3 times a day. I feel a lot better while taking this and don't sweat nearly as much. I cut the dose down to 800mg two times a day for maintainance. It does not make me sick at this dose. If the sweats come back I increase the dose to as much as I can take.

Don't worry too much. Don't agonize over CLL. I know this sounds stupid but keep a good attitude. It really does help.

God bless

Thomas D Harrell

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Thank you, Thomas! I read your reply in the morning, and it made me smile and happier! Thanks for your story and the support! Zhenya.

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