For the past two nights have had drenching sweats. This has been going on for the past two weeks. My white count is up to 30,000. I understand that this is a progression of my CLL?? Don’t see my Oncologist until October; should I wait for my appointment? Or call him about the night sweats?
Mimi4times / MIMI in GA
Hi. I know how scary it Is when something new is happening. And of course it is always a good idea to chat to your specialist for reassurance if you are concerned. A good clue about how concerned they have been up to now about you is how often they want to see you. That can be anything from once a year, to once a quarter or in my case for my next appointment just one month as treatment is looming.
They will paint a complete picture of your situation rather than focusing on any one question. So they will want to know things like What is your lymphocyte count (not the overall white count which can vary) and how quickly is it doubling? If it’s growth is slow you will be less likely to need treatment just yet for example. Also are your nodes growing? Are you having any other symptoms such as fatigue? Do you have any other abnormalities in your blood counts? Etc etc.
But I suspect if you are like many of us after first feeling confused about the idea of watch and wait, the thought that a new symptom might suggest you are getting closer to time to treatment can be scary. Remember, as I’m having to remind myself at the moment, being treated is not all bad, it means that something is being done, it has a very high response rate, and Hopefully will make any symptoms we have feel better.
Whatever happens you are not alone.
Tomorrow is Monday. Why not just call your doctor or a nurse specialist if you have one and talk to them about this new symptom in the context of whatever else is going on with your picture.
I hope you don’t mind me ending with a mildly amusing anecdote, in the uk we have recently had something of a major heat wave. I saw three different cll specialists in a short time period and for the first time none of them asked if I was having night sweats...because everyone in the uk us having them!
The silly joke highlights another point. Sweating is not necessarily caused by CLL. And your doctor may want to exclude other causes too. I presume you don’t feel like you are having an infection for any reasons for example?
Hi Adrian,
Just getting over a staph infection on my face! Have been on major antibiotics this past week (3) that have kept me so sick and unable to eat! So, between nausea, night sweats, major weakness- I guess from being anemic I am barely hanging on. When I get sick to my stomach I have a tendency to cry and be depressed ...thinking I am going to die sooner then expected. The nausea meds knock me out and make matters worse !
I appreciate your concern and I thank you for your up lifting comments. We are pushing 100 here in GA, so hot I can’t go out without getting sick. I do see my Oncologist about every three months. But I am free to drop in at anytime at his encouragement. Today is the last day for my antibiotics. I have 4 pills left today and have refused today to take anymore! My face has cleared up! I have to leave for FL tomorrow to give a deposition in my divorce proceedings which are into the 14 month! He left me the day I started MAYO CLINIC and moved in with our next door neighbor because her common law boyfriend died two weeks prior. It has been a most challenging year for me dealing with my new Dx and my husband leaving me. One can only take so much. I feel like my life has been put on hold☹️. We go to trial the first week of this Nov. I hope I am finally divorced by Thanksgiving! Thanks again for reaching out to me. May God Bless you and your family!
Mimi in GA. ( Maria)
Sorry to hear the challenges you are facing, but that additional information you provided reaffirmed the importance of my intended reply to you. While you are obviously concerned that your night sweats may be an indication that your CLL is becoming more active, the iWCLL guidelines state in section 4.1, where treatment indications are covered. "7.d Night sweats for ≥1 month without evidence of infection.": bloodjournal.org/content/13...
Now you have just confirmed that you have had an infection needing antibiotics! (Incidentally standard advice is to finish a course of antibiotics, to ensure that the bacteria is completely vanquished.)
So two nights of drenching night sweats is a long way short of a month! Further, conveniently in a month's time you'll have an appointment where you'll probably be able to say that you had night sweats lasting only a few days when you were recovering from an infection and your specialist won't be at all concerned.
Neil
Mimi, I have nothing to add except to say how sorry I am that you’ve had such a difficult year and send you my very best wishes for things to improve for you soon.
Mimi: The fact that you are able to drop in anytime to see your Oncologist at his encouragement is a good sign. Not all doctors are as supportive as you seem to indicate your doctor is. Treatment isn’t all that bad. Certainly, I wish I didn’t have to go through this but it is less difficult than I envisioned. I’m through 4 of 6 scheduled rounds of chemo and I feel better than I have in several years. I never had “B symptoms” such as night sweats but I did become severally anemic and that is what triggered my need for treatment. It was an uncertain and scary time for me so I can appreciate how you are feeling. As others have said, guve your doctor a call tomorrow and let him know your symptoms and you will feel much better simply by getting some advice and removing the unknown.
Hi Maria, I’m curious about the staph infection on your face. I have something going on where I keep breaking out in the same exact spot on my face. I have been thinking I probably should go to the dermatologist but I just have so much going on because my daughter is getting married in less than a month.
I guess I’m just wondering what yours was like?
I’ve been having the same problem. It comes and goes but it makes me feel like I’m a teenager again, and not in the good way! My whole chin area is spotty and just terrible. I’ve been trying essential oils but they’ve only helped a bit. Trying witch hazel this week and can let you know how it works out.
Famburt - I would get yours checked also, before trying anything else. Experimenting without knowing what you are dealing with could just make things worse.
Please see your doctor! Mine looked liked acne and I have never had the first pimple in my life! But mine turned out to be Staph Infection; which the strong biotics were needed! Don’t mess around with your chin; that’s where mine started!
Mimi in GA. (Maria)
Sherri - Get it checked! Hopefully it's nothing and you can enjoy ( or go crazy with) the wedding planning without worrying about it. If it's easily treatable great. If you need anything more complicated you can get follow ups scheduled now for right after the wedding.
Mimi - I'm sorry you are dealing with such difficult personal issues. I hope that Thanksgiving takes on a new meaning for you!
As for night sweats, go to weather.com and in the hourly report look at the humidity readings. We've had a summer that is much too hot in Southern California. As soon as the temperature went down the slightest bit I would open up the house to let the hot air out, and could usually get things down to between 70-75F. But, for the first time in my life I was having bad night sweats, when my CLL was very stable - that with a fan blowing on me and covers off. When I finally looked at the daily report I saw that at night it was cooler, but the humidity was up to @ 85% give or take a point or two. We just don't get that kind of humidity here.
I find that a towel on my pillow, with an extra next to the bed, and using oversized towels (beach towels) on the bed, and as a cover if I can deal with one helps - also with an extra for a quick change out.
I would give your doctor a call for your own peace of mind. He/she will be able to suggest at what point this is something to be concerned about. Also, chart your absolute lymphocyte count, aka ALC, not the WBC. It gives a better picture of what your CLL is doing. Your WBC could be raised because of the infection you've been dealing with. The ALC can bounce around under 30,000 without much meaning. It isn't until it's over 30,000 that doctors start to look at doubling time.
Hopefully you will be posting an update soon saying that this issue is behind you.
I suggest you call them.
? I’m sorry, I did not understand your reply.
Mimi in GA
Call? Looks like an auto correct error.
Good evening MIMI
I had a staff infection about 3 years ago prior to my diagnosis of SLL this March. For about 4 days I had drenching night sweats. I think that may be the course of you night sweats. As you indicated your blood CBC are all in good order. I hope your Dr confirms this for you and puts your mind at ease.
Now as far as your divorce.... I can’t even believe there are people out there this low , he’s a disgrace for a human. Your NOT a broken woman by any means. You have a chronic condition like people with high blood pressure or diabetes. I wish you the best at court and I hope it goes as smooth as possible for you in your favor , I think it most definitely will once the judge hears what he said to you. Sorry for rambling on but that really upset me to hear what he said to you. Stay strong and as you know this site is to come and vent. Best wishes John
Your white count is not too high. Doctors allow it to get much higher usually. Night sweats will come and go. Try and relax. I think you’re fine.
Hi Mimi so sorry that you have so many challenges in your life. Re the night sweats , I have had them on and off despite living in Ireland where we generally have a moderate climate . Last Xmas they lasted for about 6 weeks. I have had them on and off since for much shorter periods of time. I’ve come to accept them as part of my illness. Re your divorce , you must be feeling a terrible sense of betrayal , loss and abandonment . Having been through something similar (without the illness) over 3 decades ago with 3 small children ....let me comfort you by saying the pain will pass. I wish you well in your divorce proceedings. Emer
Oh my, so glad I don’t have small children! But my loss is tremendous, such betrayal, such lies.
I have tried to give this Heartache to God; but I keep taking it back to dwell in my self pity. I pray I can get through this, my illness and once again be happy. I am so tired of being nauseated. It compounds my illness! Will I ever feel good again?
Mimi in GA. ( Maria)
It is scary when things are different
We never know what difference is indicative of progression and what changes are incidental and due to other causes .....Any change causes us to worry and be afraid ! We are all there! And feel the same way....
Calling to get some answers is always a good idea even when the answer is wait and see if this is a change or just a blip ..... You’ll feel better if you call ..... just like I hope just sharing your anxiety with everyone here helps reduce it !
We all went through this worry and fear at diagnosis and as you see people have adjusted to changes in progression and have learned to go on with their lives ....
It’s important to vent about the fears and worries and not just suppress them , it helps minimize the sleepless nights !
Hope that this change is just a temporary ... and in any case know that you will be able to cope and still enjoy life!
People here are so wonderful , the opportunity to vent and express our feelings and know that those responding really understand and are encouraging is invaluable !
We are here for you just as you are here for any of us!
Feel better!!
I am sorry Mimi that you are having such a bad time at present.
Things will improve for you given time.
You need to stand back and breathe. As per @aussieneil advice please finish the course of antbiotics.
My very best wishes are sent for good news in November.
Sue
Good Morning Mimi4times
I have night sweats as well. I first started having drenching night sweats when I was first diagnosed which was one year ago. The night sweats were what got me to go to doctor for diagnose. The night sweats let up when cooler weather came around. Now that it is summer again, my drenching sweats are back. I sleep with a fan on my lower legs and find that helps. To help you gage where you are at, my WBC was 16 when night sweats were occurring. My WBC is now 110. I am going to try the towels that MsLockYourPost suggested. Night sweats are bothersome for me, but your other conditions make it more feel worse. You CAN get through this.
Someone suggested terry cloth robes to sleep in. It's too hot for that here now, but would be good in a cooler climate or season. I found a cotton one that I like at Land's End. It's probably not available now, but might be next winter. If you had two it would be easy to just change robes during the night.
Hi there, I always think if feeling worried phone your support nurse, she will reassure you and you can talk about your concerns and possibly save yourself an unnecessary hospital visit - symptoms which may worry us after talking them through are often put in a reassuringly perspective drawer for another day. Stay positive as treatment is usually effective and not all bad🙂
My goodness you have a lot on your plate! Everyone has given great advice. Hopefully nitesweats are either from stress or medication you have been on for infection....will be good to get answers from your oncologist.
You mentioned going to Florida. I live in southeast Florida, if your travels bring you this far down, please let me know.
Good luck! 💕
Leaving at noon today to stay in St. Augustein, FL. Doing my deposition In Jacksonville. Have to sit through my soon to be ex tomorrow and his live in lover. This is real hard on me. Lived in Ponte Vedra , FL until I-moved back here in GA to be with all my family.
So appreciate your kind words!
Mimi in GA. (Maria)
Ok farther north. I have friends in that area. Glad ur near family now! Hugs 💕
God bless you and give you grace and strength through this difficult time. Yes you will feel better. New treatment protocols daily are miracles, especially for my husband.
Blessings to you.
Farrpottery
You may feel a bit better once you get the strain of this deposition out of the way. I do hope so - and a reassuring word from your specialist should also help - and we are here for you even if it is just to vent. Take best care of you.
Mimi - What a lot on your plate! Last year I was diagnosed and lost my job within one week. I said I was going to write a book called "Get Cancer, Then Lose Your Job." You would definitely get a whole chapter. Not to make light of your situation; just want you to know we're all thinking and praying for you as you go thru these tough times, and many of us understand how despondent you may feel at times.
A few suggestions for you: First, is there any chance the night sweats could be related to hormones? I had terrible night sweats a few years ago; they started every night around 11 and made it very difficult to sleep. My PCP asked me to try Effexor (low dose, 37.5 mg). She said an off-label side effect they discovered is it significantly reduces night sweats. I've been using it for five years now. Huge help!!
For the nausea, I have a prescription but I really don't like taking it as it causes constipation. What I've tried lately is fresh ginger root. I chop up a a teaspoon or two, put it in a tea strainer, add hot water and Stevia. Let it steep for a few minutes; it really helps me. I may need the Rx for travel but this is good for day-to-day. Perhaps try it and see what you think.
Regarding the antibiotic: Please take the entire pack even if you think you don't need it. Unless I misunderstood, you were going to stop taking it. It's vitally important to finish all antibiotics, even if you don't have a compromised immune system. Otherwise you may become resistant to the bacteria in the future. And Staff is nothing to mess around with.
I'll keep you in my prayers. As you go thru this difficult time with your soon-to-be-ex, focus on protecting yourself financially. You'll be thankful later that you stood your ground in this area.
Wishing you rest and peace -
Jennifer
How very kind of you Jennifer. I can’t express how good it is to hear caring words. May God Bless you and your family.
Mimi in GA. (Maria)
This CLL thing seems to be different for everybody. I never had night sweats but my WBC climbed to over 250k and my lymph nodes were swelling up. At that point my doctor prescribed Imbruvica, which I knew was the next logical step in the 'no Treatment is a form of treatment' protocol.
You will imagine real and sometimes not so real symptoms (monkey mind chatter). Some will stay for a time and others will just stop like a sailboat that ran out of wind.
Everyone will tell you exercise, meditation et will help (it does) so you are in control of that aspect of your life. I do Reiki (you can take a course on Udemy for eleven dollars) and volunteer free Reiki once a week to get out-of-myself and my troubles with CLL, congenital heart and kidney disease.
The fact that you are seeking help means that you are ready to take control and live your life. You are not alone, we have all been there, and we will support you on this journey.
Love and Peace!
barger1951
Mimi, just wanted to send loving and healing thoughts your way. Your description of the major life stressors you've had to endure is heartbreaking. I'm also in the process of finalizing divorce after 13 years of separation and the stress of it hanging over my head throws my body out of whack, even though it ought to be old news for me... My diagnosis of CLL this year actually prompted me to finalize things. I can't imagine the painful circumstance you're describing. Hope that your medical providers are supportive of you and provide reassurance. Best to you in the months ahead... and with your CLL... May it progress very slowly with as little discomfort as possible... How about Watch and Wait forever! Take care... with love, L
I hope all went as well as it could today for you. Best wishes
Sorry for your hardships with the divorce. Hope you loose the night sweats and feel better. I imagine once the deposition and divorce are over, you will feel better. Take care and let us know how you are doing. Prayers for your divorce settlement and health improvement.
Yes call, my doctor was always asking me if I had night sweats (like it was a marker for treatment). I just never had the sweats, but plenty of other serious symptoms prompted treatment.
Barger1951
The start for me on FCR. 
Has anyone had a similar situation?
Second Treatment -Feeling scared
