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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

Re: Smoldering myeloma and night sweats

by Dewdrop9312 on Sat May 16, 2015 12:04 pm

Hi all,

So sorry to hear that you are all experiencing the same kind of soaking, drenching sweats that I have been having, both night and day, with very little exertion or just sitting watching TV. Like the rest of you, it is like I just stepped out of the shower, hair soaked, running down the face, clothes soaked, etc.

I was diagnosed with multiple myeloma about 3 years ago and have never had this kind of sweating until 3 years ago right before diagnosis – even after my very early menopause (hysterectomy at age 25 due to severe endometriosis).

I am unable to take HRT due to a severe clotting disorder. I am on a ton of pain meds for chronic pancreatitis, severe back and leg pain, and a bunch of other problems, but morphine is not one of them. Am allergic to it and Demerol (meperidine) both.

I have 2 fractures in the lower back and possibly a third in upper vertebrae. I have been on Velcade / dex / Thalomid, had to stop Thalomid due to reaction, was then on just Velcade / dex, and M- spike wasn't going down, so the latest for chemo was Kyprolis / dex. I am currently taking a break from chemo while my oncologist and neurosurgeon are trying to get some other problems under control. I have been on dex or prednisone for pretty steadily since I began having issues with severe asthma in my late 20's (am 53 now) and have never had sweating like this even, when on huge doses of prednisone long term. Have not had the sweating issue until my multiple myeloma diagnosis.

In fact, the sweating, severe itching, internally, like under my skin, and some other symptoms were the reason my hematologist/ oncologist tested me for multiple myeloma and leukemia to start with, but the sweating is continuing to worsen over the last couple months. They did blood cultures yesterday, just to make sure I have no lurking infection, but I only have low grade temps usually, so am expecting cultures to be normal. I have noticed my C- Reactive protein is quite high every time they check my myeloma labs, which is every 4 weeks.

With all of us having the same or similar issues with the sweating, it does make me wonder if the multiple myeloma is playing a part. Will be talking about it more with my oncologist when I see him in 3 weeks. Will post if I learn anything more that may be helpful! My internal med doctor does feel it's multiple myeloma-related, along with the severe itching which continues to be a problem as well.

Please take care everybody. Will be keeping you all in my prayers.

Dewdrop9312

Re: Smoldering myeloma and night sweats

by MaggieMay on Tue May 19, 2015 8:32 am

Hi Powder,

I am the same age and also 10 years post menopausal, and I had terrible night sweats. After hav­ing blood tests done, it was determined to be hypercalcemia. My calcium blood serum was 12.5. My doctor said it could be that my MGUS had progressed into multiple myeloma, OR it could be a problem with my parathyroid ... which it was, and I had my parathyroid removed. Night sweats all gone!

Hope this helps you.

MaggieMay

Re: Smoldering myeloma and night sweats

by smarty on Tue May 19, 2015 6:18 pm

I am having the same problem. I'm trying to find out how smoldering myeloma affects the thy­roid. I have been regulated for almost 20 years and, coinciding with my smoldering myeloma diag­nosis, I find my TSH high and T-4 also high. My research so far says almost nothing on this subject except highly unusual. The high TSH indicates hypothyroidism and the high T-4 in­di­cates hyper­thyroid­ism.

I am getting rechecked this Thursday and, if the results are similar, I will see a specialist. I have symptoms of overactive thyroid, as do the rest of you, even though my last test in­di­cated in­crease in meds.

We need more research on this subject as information is terribly lacking. I will comment after test.

smarty
Name: Marti
Who do you know with myeloma?: myself Smoldering Myeloma
When were you/they diagnosed?: May 1, 2015
Age at diagnosis: 76

Re: Smoldering myeloma and night sweats

by Brenda Lee on Sun Sep 10, 2017 11:06 pm

My night sweats are so heavy that I can lose kilograms per night and need to wake up and drink glasses of water to go back to sleep to sweat some more. I personally find it hard to believe there is no connection between disease progression and night sweats in some people, as I have no other explanation. My temp is between 96 and 99 F (35.6 and 37.2 C) when I flush wet, and drops to around 94-96 F (34.4-35.6 C) when my skin is wet. I don't think it's fever at all, but I could be wrong.

Brenda Lee

Re: Smoldering myeloma and night sweats

by kshornb on Mon Sep 11, 2017 9:48 am

Hi Brenda:

Excessive sweating was one symptom that I experienced with my multiple myeloma. However, I had also been dealing with hot flashes, as I was also premenopausal. You didn't mention your age, but that could also be contributing to the excessive sweating. What helped me immensely was that my PCP had prescribed me Wellbutrin (bupropion) for the hot flashes, which made them easier to tolerate. I also know that there are other medications on the market that can help. Might be worth a conversation with your doctor.

Not sure if this is will help you, but it sure helped me.

Wish you the best.
Kathleen

kshornb
Name: kshornber
Who do you know with myeloma?: self
When were you/they diagnosed?: July 2015
Age at diagnosis: 52

Re: Smoldering myeloma and night sweats

by penbed on Mon Jun 11, 2018 4:32 pm

A little late to your post, when I did a search, yours popped up.

I was diagnosed with MGUS last August. Last week, test results show I am now smoldering.

For about a month I have been waking up 3-4 times a week drenched in sweat. My sheets are so wet I cannot sleep in them.

I firmly believe sweats are connected to multiple myeloma.

penbed
Name: Jack D. Lovett
Who do you know with myeloma?: Self
When were you/they diagnosed?: August 2017
Age at diagnosis: 70

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