new to board w ? re: drenching night sweats.

[worried daughter]

I am so happy to have found this board and hope it will help. My mother who is 64 has very recently been diagnosed with MDS after battling non hodgkins lymphoma (for the last 5 yrs). We think she got MDS from her chemo treatments. We live in Toronto Canada and she is receiving treatment at Princess Margaret Hospital with Dr. Crump. At the moment she is getting transfusions and experimenting with Eprix which we will find out soon if it is effective.
One question we have at the moment is if anyone here has experienced drenching night sweats. She wakes up at least 3-4 times in a night soaking wet from sweat. Has anyone else experineced this and what does this mean? Thanks so much in advance for any help.

[Alice S]

Hi Worried Daughter
Welcome here, you will meet a lot of ‘worried kidz’ here, I’m another one. My mom will be 64 this year too and was diagnosed with MDS in December 2004, but probably had it already one to two years before that, since she was so healthy she never had a need to see a doctor

Chemotherapy damages bone marrow, there is a discussion here somewhere on exactly this problem. My Mom has now be given about 7 injections of EPO, known as Epex in Canada and Procrit in South Africa. We are waiting to see what happens because so far her counts are not getting better and she has had to transfuse more often, every 3 weeks instead of 4 to 5 weeks.

Since October last year she has been having night sweats – something she did not even have during menopause! So I would say that it must be the MDS althought not the EPO. Epo injections are given weekly.

Last I spoke to her she said that she has been ‘night sweat’ free since she started taking Goji Berry supplements. (Actaully the EPO is the first medication she is taking for the MDS, she has only used vitamens, mineral etc.)

Goji Berries also know as Wolf Berries seem to be the new buzz word in South Africa and are avaliable in the USA so I would think that you could buy them in Canada. I will actually phone her now and find out how she is doing and if she has had a blood count lately. (I live in Sweden at the moment) Will post info here.

I hope this helps a little, it’s hard to know when something is as a result of MDS and when not. BUT this forum helps me all the time. She has since added CoEnzyme Q10 and Goji Berry supplemets to her regime- this is with her Hematologists blessing!
Bye for now and keep reading it helps to know we are not alone out here!
Alice

[seekay]

I think that night sweats as you described are a common symptom of MDS and other blood related cancers. I think that the night sweats are one way the body is attempting to mount an immune response, a “healing response” if you will, to the malfunction in the body. Perspiration and fever are one of the secondary means the body has for ridding itself of waste matter. The primary one is through the liver, via bowel movement. If that avenue is not working properly, or fast enough, the body will resort to other secondary means to rid itself of waste.

Another common symptom in MDS, I am told, are ongoing respiratory secretions. Again, respiratory secretions are another way the body has to rid itself of waste.

It is interesting what the person from Stockholm reports reL CoEnzyme Q10 and Goji Berries. I know that CoQ10 provides liver support. Perhaps the Goji Berries do as well, thus, helping the liver to do its very important job, and eliminate, or reduce, the body’s need to turn to the secondary avenues for eliminating waste.

Basically, the four avenues for eliminating waste are:

Liver
Kidneys
Lungs
Skin

Waste and toxin elimination are very important when fighting chronic disease. I would try to focus on liver support, if you want to address the night sweats, although it is good that her body is responding with night sweats because it shows that the immune system is working to some degree.

Suppression of any secretions would be the wrong avenue to take, if you accept the premise as outlined above. I wouldn’t let the doctors give you anything to suppress any secretions as that will only make it harder for the immune system to work and will add to toxic/waste build-up in the body.

Best,

Christine

[seekay]

She should be eliminating, with a full softly shaped bowel movement, at least once or more a day. The bowel movements should be dark in color and approximately the width of the lower colon. If they are light colored and thin, or if they are not soft, these all indicate possible problems with the liver and colon.

Think of a newborn baby and how often they eliminate, and the quality of their movements. This is what you are aiming for, in a sense. This is the norm for all adults; unfortunately, many adults do not have adequate waste removal because of diet usually.

Ways to promote soft bowel movements and stimulate regular movements (1-2 or more a day) are: drinking organic freshly pressed juices (look on this website at my previous postings for discussions on juicing and juice recipes), taking high quality herbs such as milk thistle, burdock root, and dandelion (which also can be juiced, if you can find organic dandelion leaf). Also, organic flax oil I have found to be helpful–1 large teaspoonful in the morning with the juice. Good brands are Omega Nutrition, Flora, Barleans brand. Always have the oil cold and do not use if it tastes bitter–that is a sign the oil is rancid and should be thrown out.

My apology if this seems too graphic, but it is so important to healing and rarely is addressed, I find.

Christine

[willie]

Daughter During my wife’s bout with MDS she never had night sweats that I recall. I definitely remember the sweats during menopause (at any time of day). She was in the obvious Sweet’s phase for 6 months until diagnosed with MDS. She was in this phase for 5-6 months until her stem cell transplant. Willie

[Alice S]

Hi Worried Daughter
I just looked up some information about night sweats and it seems that it is associated with lymphoma and then as a result of chemotherapy the estrogen level is lowered which apparently causes menopause symptoms to return.
I agree with Christine that we need to eliminate toxins but the main reasons for taking Coenzyme Q10 and Goji berries is for cell repair. The fact that my mothers night sweats simmered down is a bonus. Goji berries have 500 times more antioxidents than pomegranate (and does support healthy liver function amongst others). The main reason that my mother is taking Goji berry is because it stimulates the ‘immature’ bone marrow cells to mature – she has only 5% functioning bone marrow. It basically also enhances production of red and white blood cells as well as platelets. This is exactly what one is trying to achieve if you have MDS. MDS is an autoimmune condition like MS. I have seen reports that it is being tested for and being used in conjunction with treatment of cancers as it aids in destroying ‘blasts.’
Daughter, you and your mother have already been through so much, and this (MDS) is really not fair, but I have found (my MIL had cancer and my sister in law has very bad MS and now my mom) that life is worth fighting for and God gives us the strength. I think I read somewhere that God will only give us the burdens he knows we can carry.
Take care, both of you.
Alice

[Russ P.]

Hi, tried to post before but got messed up on my log in or password. So I’m back after having to re-register. I have experienced night sweats a couple of times with MDS. The 1st was when I had a bout with pneumonia and the 2nd was with some bronchitis that I was on anti-biotics for. Got over both and the sweats stopped.

[Jack_dup1]

I also get intermittent night sweats, I have just gotten used to them, most are mild, a few have been “drenching” which usually accompanies a fever.
Jack

[Frankie]

Hi Russ…
The same thing happened to me. I had horrible night sweats and figured it was due to the MDS or the Revlimid I had started taking. I never assumed it might be an infection somewhere in my body…….. because I had no fever.
I found out that I had a sinus infection (had a hard time hearing out of my right ear) and the doctor gave me antibiotics. Voila!…the night sweats stopped. So many times I get some weird symptoms and find it’s not related to the MDS at all.

-Frankie

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